Starting Chemo in April 2014
I had my BMX March 18; my team was optimistic that would be the full extent of my treatment. Life had other plans.
The stories and support from the strong women (and men) in these forums have been inspirational and so very helpful. I thought I'd start a new topic so those of us beginning the chemo part of our treatment journey in April 2014 could share laughter and support.
Comments
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spunky sorry you had to join us but happy to have you. How are you doing ??
Blueberry I had the dizziness also with treatment
. I hate the foggy feeling. -
thanks Jaimieh. Don't be sorry God does not make mistakes and this will allow me to meet new friends and we will all get through it together. I am in good company.
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the little train that could. That is who you are. You can do it
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It occurred to me today that the up side of this is an appreciation for the good days.
I walked through the Botanical Gardens, marveling at the tulips and crabapple trees and
my ability to walk at all. And I saw something I hadn't seen before. Gratitude!
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sorry to hear longisland - can't help you out with meds but hope that I feel better soon!!
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I think I may have jinxed myself. I thought in lucked out and was doing great so went into the office today. Around lunchtime I felt like I was hit by a semi. Went home and slept until hubby came home. I had a fever of 102. Now I'm sitting in ER waiting for test results. The fever broke but they want to make sure no infections. Ugh! I hope rounds 2-4 are easier...
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chknfeet hope that ure home soon and better!!
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In reading the latest posts, I see a few of you have listed trouble sleeping while on the steroids. I was also prescribed Ambien (I know, yet another pill to take), but I really slept soundly the night I took it. To me, it was well worth it to take it. In case you haven't considered that as an option. Also, many of you mention the Claritin for the bone pain, but for those who have the continuous drippy nose, like I do, I started Claritin as well and it has really reduced that drip. Again, it's a bunch of stuff to take, but it does seem to help.
I ended up shaving my head on Thursday last week, and have a case of folliculitis (sp?). My scalp is very sensitive, but have ordered some 'Lindi's face serum' to help resolve this problem. No way I can wear a wig with this scalp, so hopefully it resolves fairly soon. My son has said that I rock the pirate scarf (the cap scarf that ties in the back), so I guess that'll work for the time being.
I start round 2 tomorrow (I'm on a taxol only for 3 weeks, one week off). I'm not looking forward to it, because I really felt decent during my break week and most of the surgery stuff has finally healed, allowing me to feel more like a human being again. But, let's get this stuff over with, right?!
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Hello Ladies!
Blueberry: Seriously, the whole auto-correct thing CRACKED ME UP.
Thanks for the laugh today! My kids and I kind of collect auto-correct bloopers. Like one time, I was typing "I ate a little for dinner", and it corrected to "I ate a KITTEN for dinner". Good thing I caught that before I sent it. HA! Oh, and FYI, the auto-correct fail of "amazingly" is "camacho fly". True story. Regarding veggies: I second what MakeLemonade said. Be careful on your low WBC days. During that time, I eat only fruits and veggies that can be cooked or peeled. Which is annoying, but at least I know I'm safe from infection that way. I sure do miss a green leafy salad though. Although, I keep reminding myself that this is NOT the time to worry too much about diet or weight gain. Obviously I'm not going to run out and order myself some KFC (because EW, that would definitely make me puke), but if I have to avoid fruits and veggies during my queasy days and live on crackers and pasta, then so be it. Do what you need to do to GET THROUGH IT.
Aw Sunshine, the MOMMY GUILT is overwhelming, isn't it? I can't even think of anything wise or uplifting to say, except that I'm right there with you. Hugs to all the wonderful mommies out there who are fighting and missing time now so we can give so much more of it later. And as for seeing yourself bald, I PROMISE, you do get used to it. The first couple of weeks after The Big Shave, I kept jumping whenever I passed by a mirror. I kept thinking I was seeing a stranger in the house. Now, it's no big deal. Just what I look like. Pretty darn cute bald woman coming through.
MakeLemonade: Regarding hair loss? Mine started falling out on a Thursday evening, I woke up the next morning with bald patches (EEEEK!), shaved it that afternoon, and by Monday a good portion of the stubble was gone too. It didn't take very long. Sorry.
MommyQ: Welcome. I find that I have a temperature that hovers between 99 and 99.5 starting about Day 5 through Day 10 post infusion, especially in the evenings or if I've done a little too much during the day. It completely freaks my husband out (I ended up in the hospital with a fever after Round 1), so I get relegated to Couch Potato Status during those days. Also, I've found that my vision is a little off, particularly in the left eye. I'm told these are normal things, but ask your MO about ANYTHING that concerns you.
brigadoon: I have chemo on Friday, and my nausea usually starts to settle in Saturday evening. Sunday, Monday, Tuesday it's full-blown and I feel like I could vomit every time I open my mouth. Wednesday it lifts. We are going to tweak my nausea meds AGAIN for the next round. Here's hoping the third combination is the winner.
chknfeet: Well, SHOOT. I hope they find the source of infection and send you home soon. Hospital stays in isolation are boring and crumby and absolutely no fun at all.
Welcome Spunky!
Hey, footballnut, thanks so much of the lovely picture of Spring you posted! I thought I'd share my own picture of our weather here in Calgary on the morning of Saturday, May 3.
In conclusion, it makes me very, VERY happy to hear that Spring has come to other parts of the world. It gives the rest of us hope.
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Autocorrect drives me nuts but also makes me laugh. My husband's name is tony and my phone insists on calling him tiny and HE IS NOT TINY lol. But this is now his name - why fight it?... Also prior to BC I don't think I had ever texted to someone and used the f'ing word - my phone does not allow that - it is ducking and I really only say that to my daughter and she absolutely knows what I mean. It is worse when I am tired cause I don't even realize what it has changed and I go back and wonder how anyone even understood my conversation. My daughter has posted a couple of our conversations on FB - with my ok.
I feel good this am - a little achy but otherwise good. I have my CBC today - see how my blood is behaving. Gonna go to work this am for a bit too - I stay until I am tired.
Will be thinking of you tomorrow SpecialK! Hope everyone else is well - Thanks all for all the advice and support
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round 2 starts today! Really hoping not to have a hospital repeat at day 7 like the first time.
Anyone having the opposite of chemo pause? I thought menstrual periods were supposed to go away with chemo. I am having the opposite. I started 2.5 weeks early...part of what landed me in the hospital, finished up last week and woke up at 4 am this morning (thank you Decadron) starting all over again.
If any of you beautiful ladies have access to a Look Good, Feel Better class in your area I nightly recommend taking it. I had mine yesterday and left with over 300$ in free makeup and a really cute, brand new wig from their wig bank. They said Pantene purchased the wigs for them. So, now I have two wig options to chose from. They also showed me options on scarf tying which was helpful
Here's the most creative tip they gave me. Take a large soft T shirt, cut it off under the arms. Discard the arm half. Fold down one edge and put it over your head. Take the ends in the back and twirl them outwardly until the band around your head is tight. Take each of the twirled ponytails and bring them around to form a band on your head. Tuck in the edges. Super cute and very comfortable. Great for this summer on the beach--cool and chic!
Wishing us all a tolerable SE week!
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cold interesting info re the temp ... It was day 14 for me yesterday but I did too much and temp went to 99.3. Took it easy for the rest of the evening and am back to normal. I am REALLY going to monitor myself after today's infusion as I do not want a repeat of going to the hospital on Day 7 or 8 :-)
Cold re hair loss .... I didn't think it would be this quick and thought it would hang in there. But I still can't get it shaved until Wed. Today is chemo day and I know I will be too tired afterwards. I wore one of my caps to bed just to contain the hair. They won't care at the infusion center,I am sure they have seen it all :-) Just wish I had the shave yesterday .... I am now surprisingly calm about this whole hair loss thing. I knew hair loss was a guarantee and I know it has to happen. And it has to better than this MESS of hair that is EVERYWHERE right now! LOL. I have fine hair, but I have a LOT of it.
Mmtagirl right there with you!! Chemo today, round 2! I have decided to be very proactive this time. I plan to follow a neutrapenic diet starting day 6 through to about day 10. Conserve my energy as well. I am getting a reduced dose today so hoping that helps as well.
mmtagirlalso right there with you with getting a period!! Have cramps this morning and am bleeding very slightly, but it is there :-(. I really thought chemo was supposed to stop this - was HOPING that would be the case. Heck,I have to go through this whole cancer, surgery, chemo, radiation thing, but getting my period as well? Not fair :-)
Chknfeet hope you get out of there quickly as the hospital is no place to rest! I was there last week from Tuesday night to Friday afternoon. 2 different doctors told me that they only ever figure out the cause of infection in about 25% of cases like yours and mine.
jhodro interesting re drippy nose and Claritin ... didn't think of that. I think I have lost nose hair as my nose is a little drippy, but not much. However, I am still on Claritin.
Wishing everyone a great day ... Going to have some breakfast, intake a lot of fluid and then off to chemo round 2 where I expect to be BORED! :-)
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Hi Krish - I would never tell someone not to get a 2nd opinion if they felt they wanted one - I did get one for my chemo regime and it changed based on that opinion. I am not a doctor but what she has been prescribed sounds pretty much in line with what I have seen here from others with similar diagnosis and it is GREAT news for her not to have to do chemo. That Ki 67 5%, i believe means that they perdict she has a very low chance of reoccurence and realize that chemo is always an option if that does happen. If you will find comfort and she will find comfort in a 2nd - then just do it. I am very happy for her.
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fortunately my SEs have been very bearable but I mean really? I just got my period this morning!! Lol. The body is an amazing thing!!!!! I've been peeling almost every hour since last night; after feeling a sort of gut rot last night and bloating it's actually a good thing although id kill for a full nights sleep!
Last night I developed a bit of pressure in my head and my scalp is feeling weird. Today is day 7 for me. Still hungry and ready to roll!! Lol
Sharing my head this Thursday night. Can't wait to get that over with and try my wig. I also can't wait until my port stops reminding me that it's there. The nurse told me that I can remove the tape on day 7. Well today is day 7 and I'm nervous to touch it. I was going to give it a go but might wait. It certainly doesn't hurt like it did. It's just reminding me that it's there. I can't wait to get rid of it!! Lol
Cold isn't winter done yet in Calgary? Last time I was there was approx 10 years ago. It was in April. We went to banff and it was approx 12 degrees celcius - beautiful. When we went skiing it was like the middle of winter! Awesome! Then we went into Calgary to see acdc at the saddledome and it felt like summer. I love Alberta! Beautiful part of the country! Hope that spring comes your way soon!!!!
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Hey Ya'll, I kind of made it through the first week of treatment. One day of vomiting only. So yesterday I felt almost normal again. It was a beautiful day too. By last night my hips & back were hurting baaaaad. My ribs were hurting, I thought from vomiting.I got the neulasta shot on wed. I have been taking the claritan like I'm supposed to. Last night I took 2 percs. It still hurts. Today I go back for lab work. I'm going to really complain to the doc. Thanx for the vent.
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I forgot . I got this envelope in the mail. When I opened it there was a $20 bill clipped to papers. It was a survey from a university about B.C. It said even if I didn't want to fill out the survey that I could keep the 20. But I did fill it out to hopefully help someone.Anything to help. And I got $20.
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Sending positive vibes to those getting the magic potions today.
Saw the dermatologist today - she confirmed the reaction between the chemo chemicals and the precancerous areas on my skin - she seemed a little too happy about it
. Zapped 3 areas with liquid nitrogen, and sent me off with a prescription for a steroid cream in case itching gets worse. Also recommended keeping well moisturized with something like Aveeno.So far I seem to be avoiding issues from being in the neutropenic zone - which reminds me of hydroponic - which reminds me of bodies floating in suspension like in the movie Coma. Maybe I haven't avoided issues after all ...
(Still laughing about the neulasta nudists)
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Thanks for all the support ladies. I feel like a big baby sometimes and its so helpful knowing we are all going through the same thing and supporting each other. I think I overexerted myself. I don't know what's harder, the treatments or keeping up the facade of being strong and a-ok. I'm home and have been resting up although I can't sleep with the body aches. Took the day off. My blood panel came back ok and didn't seem as though I was immunocompromised. I figured it wasn't a WBC issue since it was only day 6 and I had the neulasta shot. They wanted to admit me anyway to which I fought and refused. I didn't see the point since all they were going to do was watch my temp and hydrate me. I had them call my onco who suggested an oral antibiotic and I was on my merry way.
MakeLemonade - Did they tell you if we should expect the same after future infusions? This kind of has me freaked out, although next time I'm going to take more time off and be extra careful. We had visitors this weekend and some of them were sniffling due to allergies. Not chancing it next time and will be telling them to turn around and go home.
Cold - That is insanity! Snow in May! Here's to sunshine and budding flowers soon!
Mommy Q - My expanders have been very painful since the infusion, especially in the rib area. There has been a stabbing feeling especially when lying down. I opted to skip out on this week's expansion to give myself a break. I haven't had an ongoing low grade fever, only the high one from yesterday and today. My onco nurse said not to worry unless it reaches 100.5 or higher and to hydrate, hydrate, hydrate. I've also been achey, moves from shoulder/neck then legs. Tylenol helps. I think its normal and will pass within a week (hopefully).
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Thanks for all the responses! It's so nice having a place like this for us to talk and share our experiences and share helpful advice!
brigadoonbenson: Thanks for the welcome! You're so lucky to have little SEs! Good luck to you on Wednesday!
linda505: Sounds like we both (and several others on this board) have similar discomfort with our TEs & slightly cloudy vision. I guess those SEs must be normal. On Sunday, I called my MO because I read 100.6 degrees when I woke from a nap. Turns out I was just overheated from blankets because it dropped to 99.8 by the time my MO called me back a few minutes later. She asked if I had any signs of infection (redness/heat/swelling around TEs, pain urinating) and I told her no. She told me that it was unusual to have a fever from infection until midcycle because that's when the blood counts are down, but to just keep monitoring my temperature and to NOT take any Advil or Tylenol, which would mask any fever I might have. Oh, and I DID have the Neulasta shot on Thursday, May 1, the day after my chemo.
clarrn: I think you're right that chemo makes everything exacerbated! And yes, I did take the Dexamethasone on chemo day and the 2 days flanking it.
Blueberry4: I've also been dizzy and feeling generally off balance since the infusion. I hope the dizziness and TE pains lessen before the next fill and chemo! I hope your hair appointment went well.
Spunky825: Welcome! I am also on TC (started 4/30), so we can share and compare war stories.
ColdInCanada: I find that I also raise my temp if I do too much, but I've been laying around a lot! I increased my fluid intake yesterday to about 2.5 quarts of water and felt better. Maybe I was dehydrated too because I wasn't drinking enough. Hope that snow goes away soon for you!
chknfeet: Glad you didn't end up having to stay at the hospital and they got your temps back to normal. I tried drinking a lot of water yesterday and DID feel better, so hydration must be the trick! My TEs also poke my ribs and my armpits! I can't get comfortable for long in any position so sleeping has been in spurts of about 3 hours at a time. So, are the TEs feeling better since you skipped a fill? My PS wants to do a lot of fills early on because she said that it's easier to stretch everything within the first 6 weeks after the insertion. However, since I can't swap the TEs out for my gummy bear implants until after chemo and radiation are both done plus a 6 months wait (so we're looking at April 2015), I probably could slow it down a bit on fills.
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Aww, thanks to all of you for you sympathy regarding the snow.
Truth be told, two days before that photo was taken it was +22C (71F), and we were all hanging out in the backyard in shorts and t-shirts. Weather here can turn on you in a second, I'm telling you! And for the record, I can remember times we've had snow for EVERY MONTH OF THE YEAR. Yes, that includes July and August. The good news is that it doesn't last very long (most of ours from this last blast has already melted). The bad news is that it can show up AT ANY TIME. :O
Know what I get to do today? I'm practically GIDDY about this. I get to LEAVE THE HOUSE. For something OTHER than a medical appointment! Woo hoo! It's just a trip to take my daughter to her violin lesson, but STILL. It's LEAVING THE HOUSE! I know you all understand.
MommyQ: I've been laying around a lot too. Which led to a bit of dehydration for me as well - it's easy to forget to drink when you're nauseated. And also when you're doing ABSOLUTELY NOTHING. Yesterday I drank so much I was practically floating. But it helped - I feel better today. And now that my mother-in-law has left (God Bless her! I KNOW she was doing what she thought was best for me!), tonight I'm hopping back on the treadmill. What she doesn't know won't hurt her, right? And I MISS exercise.
Have a wonderful day Ladies! Wishing you all several SE-free hours!
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Coldincana- I can't say that I will ever miss exercise but it does make me feel as if I have been good to myself. I would probably miss it if someone told me I shouldn't do it. That's the way I roll! I am a contrarian!
MommyQ - What are you taking for pain if not Tylenol and Advil? I don't know what I would do without that.
Hydrating is definitely at the top of my list for pain relief and the posts I read here help me to keep it there.
I finally got an appointment with a ACS wig specialist today so I am very relieved. Last night I started having some new sensations in my scalp that made me think I had better get that taken care of.
2nd chemo treatment tomorrow + Zometa. Where is my Claritin?
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I'm pretty sure there aren't any babies here. Just a bunch of very strong women.
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Hi everyone! I am sorry about all of you who are having a tough week.
I am behind you so I have my infusion Thursday. I have felt really good this past week which is really encouraging. It makes me feel like I can go through the next one, knowing there is a light at the end of the tunnel. Cold, My MO told me he wants me to exercise everyday on chemo. He was kind of adamant! He said "Not 5 days, not 6 days, you need to exercise 7 days a week." He said it will make all the difference in how my body handles the chemo. So I have done something everyday.....a couple days it was so hard.....but I do think it helped my fatigue.
I have to say I am dreading Thursday..... I am hoping they can do something about the headaches this time. It seems like #2 has been rough on many of us.......Not looking forward to it. A friend gave me a groupon for acupuncture so I am trying that to see if it helps with SE's.
I hope everyone starts feeling better.
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Hi Mommy Q -My 1st TC treatment was 4/26/14. I was fine until the 8th day, then my body started aching like no tomorrow. I cannot explain the pain. Prior to starting my chemo, I started juicing, The juices that I help build my immune system since the chemo is tearing it down. I also have tissue expanders. I had read that 100c hurts so I asked y doctor to only fill with 60 cc. I get my fill every 2 weeks. So far I have had 2. I get my 3rd one on Friday.
You may want to take a pain pill prior to getting the fill. -
My doctor told me that exercising every day, if only for 10 minutes will help with the side effects of chemo. I was doing good, but then I stopped. My problem was not getting any sleep at night, then trying to get up to exercise for 10 minutes. I was beat tired an just laid in the bed. -
Round 3 of AC tomorrow. I am anxious and still exhausted from the last 2. Trying to remind myself that once I am through this one I get to see my family on May Long weekend and then my mom will stay for the last AC.
Any tips for the day before chemo jitters? I am worse this time around for some reason.
I was trying denial but it's not working. -
Clarrn - I hear you. I have week two tomorrow. Week one was better than I expected with very few and fleeting SE's. Everything I read says that week 2 is when things start to roll. I am very nervous. Funny your use of jitters because I had the real shaking jitters all day!
Today my sister told me that my niece and her four children are planning a visit the second week in June. I love them all but I don't think I will be up to it and I know that the additional cooking/entertaining burden will fall on my DH which he at 76 does not need. You would think that by this age in my life I would know how to say "no" without guilt.
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walked for 5 miles today. Felt great! Beautiful day!! Disappointed that the forecast shoes rain for the next few days cause I really want to maintain this. A treadmill isn't that same as outside!!
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MommyQ - I had my last fill last week Wednesday, right before my infusion. I think the chemo has made everything more sensitive so just wanted to give myself a break. My PS is only filling me 60cc each time. He didn't fill any at surgery and believes in low and slow. He never mentioned the issue with the first 6 weeks. I'll have to bring it up next visit.
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Worked out tonight! Woo hoo! That felt SOOOOO good. For the record, after Round 1, I DID walk every day for about 30 minutes. Right up to my hospital stay, and then I was on bedrest and ordered to take it easy after I got home and blah, blah, blah. After Round 2, my MIL was staying with us (and she was a HUGE help!), and she INSISTED that I sit around all day and "rest", because back in her nursing days, that's what Chemo Patients did. I TRIED to reason with her, but she remained firm and stern, and ushered me off to bed. Now that she's gone, I've jumped back into working out, and I have no plans to tell her anything about it.
Tonight I did 20 minutes of Turbo Jam (the old school stuff, not the new crazy "Fire"), and I feel FABULOUS. I was KICKING and PUNCHING and MAN, you just feel like a TOUGH GIRL when you do that stuff. Awesome.
Clarrn: Sending some big hugs and prayers your way for tomorrow. Keep your eyes on the May long weekend. That's your prize, your LIGHT. I wish I could offer more, but I generally lean towards mental temper tantrums rather than jitters. Your way is much more mature.
brigadoon: I hear you about the whole "guilt" thing. I always feel bad about "not being the same". My husband, on the other hand, has no qualms about telling people NO and TOO BAD and GET LOST.
So, mostly I just let him deal with people who, while they MEAN WELL, just DON'T THINK. Nana: My MO prescribed Claritin for my headaches and it seems to be working. I take one every morning. I missed ONE day and ended up with a HUGE headache by the afternoon. I did NOT repeat that mistake. It seems to be helping with the nosebleeds too. Only two this time, and they were the day I skipped the Claritin. It's worth asking your MO about. I was never one for taking daily pills for ANYTHING prior to this, but really, I'm pumping my body full of poison every three weeks. What's a daily does of Claritin in light of THAT?
footballnut: You know what I did? I ordered some guilty pleasure TV shows on DVD so I could watch them on the treadmill when the weather gets bad. Obviously, I prefer outdoor walking, but when I can't, at least I have some fluffy television to look forward to, right?
QUESTION: Does anyone else on THC have eye twitching? Mine are all twitch! twitch! twitch! and it's driving me crazy. Just wondering if this is a normal side effect or something I should be worrying about.
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I just want to say that everyone on here is heroic! It kind of blows me away how strong everyone is, how positive in the face of this. It makes me feel stronger, as though I can face it too. Thank you!
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calgary...are you aware of any movement restrictions as a result of having a port? My nurse today cautioned agains arm movement- swimming, yoga, insanity...these are all programs i am finally able to do-on good days...but am i restricted to walking? My MO appt isnt until the 22....so i thought i would ask?
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Hey Cold - don't have the eye twitching - yet- but have been told that it is a side effect of taxotere along with tearing eyes which they call Taxotears LOL.
Hoping all of you are having minimal SE and many good hours. I am feeling good at this point - had a few rough days this weekend but in general doable - most just tired. I have been walking as often as I can - at least 30 minutes a day but haven't done any other exercise - I am working about 1/2 day a week 4 times a week so I guess that counts as exercise LOL. I am also taking the Claritin and so far very minimal pain and really no headaches. Nurses told me yesterday, when I went for my labs, to take B6, B12 and L-glutamine (SP) to help with neuropathy and general nerves issue side effects. All blood work was good - the important ones all in the normal range. The nurse told me to expect to be more fatigued in the next few days as my RBC will be dropping a bit which will make me tired - umm - I am already tired LOL. Gonna eat a bunch of spinach and call myself Popeye for a few days.
Footballnut - 5 miles exhaust me reading it LOL - you go - you are a super hero - Captain America!!
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cold good idea re DVDs! We have a small tv in the basement which plays DVDs and is located above the treadmill. I have to catch up on the sopranos!! Lol
Jhodro prior to receiving my port I discussed with my MO. The only restrictions were within the first 7 days of insertion which was Tuesday. I had to keep the bandages on and keep it dry. I received a pamphlet saying not to let the port rule your life. Swim run exercise etc. as others had shared with me the discomfort which is originally experienced will pass. I still feel the odd twinge but it lessens each day.
I have decided to train for the breast cancer walk held in early September each year. Not sure if it is realistic to commit for this year. It is approx 40 miles over 2 days. I always liked to walk but am really getting serious about it now. Bought proper sneakers yesterday a water bottle belt a pink beanie and an iPhone armband. I'm ready!!
:-)
Each participant has to raise $2k. My concern is that I have no way of knowing how my SEs will be as I continue forward. 2 more rounds of FEC then 3 of taxotere / herceptin with herceptin continuing for a year
While I know that everyone is different does anyone have or had experience with taxotere/ herceptin? My MO told me that fatigue is the worst hot most people
At this point my chemo is scheduled to end in mid august so if I train now I should be good for the walk
I might register just to have something to work towards
Live my DH but since his severe case with shingles in his head and eye last year he has been snoring so loud that some of you might have heard him!! Now that I think I can sleep he's keeping me up with his SNOORING!! lol
Linda love that captain America! Remember 3d rocks!!!!!! :-)
Have a great day all!!
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Hi all.
Round 2 was yesterday and as I thought they took me off Taxotere. It seems the colon issues can be a more uncommon side effect of Taxotere. MO switched to adriamycin with the cytoxan every 2 weeks instead of three but still same number of 4 rounds total. So the silver lining is that round 4 will be in about 6 weeks instead of 8. First Nuelesta shot today which I understand to be a super duper neupogen shot that I had everyday in the hospital. Anything that keeps me out of the hospital! Started the Claritin to see if that will keep the joint pain at bay. Emend, zofran, Tigran, decadron, goodness, so many drugs to keep the nauseau at bay. Planning to be in the office today!
All you gals and exercising are such an inspiration. I tried Zumba last week ...I prefer boot camp, martial arts type but my body with these expanders in won't allow much of it yet. Doing some walking when weather permits and definitely feel better when I move. I will make more time listening to all of you!
Question- I see several of you on AC will follow on taxol. My MO didn't mention it yesterday and now I am wondering if I should have asked?
Thanks,
Ann
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ann
I would ask anything anytime. I have learned not to walk away with a question nor apologize for asking. If u have a query feel free
:-)
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jhodro I wasn't told of any restrictions past the first week or so. I had my port inserted Apr 9 and I still could feel it after 2 weeks if I reached too far as it is stitched to the pec muscle. I don't feel it at all now but don't really know when that happened :-)
Morning of day 2 after second cycle. Was up half the night but not due to the chemo. Have my period and cramps kept me up ... Really had hoped that chemo was going to stop that :-(. Am in my mid 50's and this should stop already! My Onco nurse said she had a patient that had periods throughout her chemo treatments :-(. Not what I wanted to hear :-(
Neulasta shot today and getting head shaved. And can not wait to get rid of this hair - can't keep up with it falling out! Plus my head felt hot last night as I am wearing a hat to contain the hair that is falling out. Hair + hat = hot!
Have a good day everyone and hope the SE are bearable!
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Am inspired by you exercising ladies. 5 miles!!! That's great, footballnut.
Day 14 here - scalp is itching like crazy. Hair just feels dull and lifeless. May take the clippers to it after I get back from an appointment, because I can't stand it.
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lemonade isn't it funny about these periods? I just got mine yesterday!! I too can't wait for it to end. I turned 50 last summer and had started perimenopause and will not be sorry to see it go either
Lol
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Hi everyone. I haven't been on here for a while. Round two was last Tuesday and my MO decided not to give me the Neulasta shot this time. BAD idea!!!!!! I had the most horrible bone pain after round one, so we tried to go without the Neulasta. I hit a wall Sunday and went to the infusion center yesterday. No WBC, No Neutrophils. Got my Neulasta shot so I am now eagerly awaiting the bone pain. Thankfully, I don't have a fever, I am not in the hospital and I can pre-plan the week ahead.
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Just a little whining, I dragged a comb through my hair this morning and a TON of hair came out. Before this it was just falling in the sink a little heavier than usual, but this was way different. I'm on weekly Taxol, which some sources suggested does not always cause hair loss! Those rats! I go in for #5 session this afternoon. My worst se has been, this past week, anyway, a dull, inflamed sort of sensation that radiates from inside me just below the ribcage. Its not nausea but can turn into that. Its creepy. Oh, and the metallic taste that seemed to get worse as the week went on. I'm going to ask about those today at the onc's office.
I walked 2.5 miles with a neighbor this a.m., the first time in a month that I have gone that far! I sat around all week in a kind of stupor, and did not like where that was heading, so made it a point to join Ann today. I am so glad I did. Because you guys are doing this and more, I am inspired to get with the program and maintain some vitality.
Good days to all, Mame
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Hi all,Just checking in to see how everyone is doing. Looks like most of you are all getting LOTS of exercise! I feel like a slug. I drag myself outside in the mornings to feed my horses and walk my dogs. and then .I.am.BEAT. Maybe it's my age? The fatigue has been worse after the second infusion. I can't seem to get my phlebitis to stop flaring up. I keep hoping when I move on to Taxol, that things will improve. Going to see my hairdresser today to get my wig styled. Also going to have her shave off the baby fluff that's left on my head.
mikishelley - Hope you get to avoid the bone pain.
MameMe - My hair was falling out like yours last week. It was a bit shocking at first, but now I'm getting used to seeing my scalp.
wishing you all well, lilyrose
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I am so happy to see so many of you discussing exercising! I was just thinking last night I miss working out. My SEs were minimal this week, I believe because I started taking the Zofran and tylenol on Day 2 before they hit hard on Days 3-4 but I did get a pretty bad cold
Hoping the cold will be gone by this weekend so I can at least start walking on the treadmill 3-4 times a week and maybe do some stretching/yoga 2-3 times a week. Right now I'm just hoping my cold doesn't defer this week's chemo. I want to get this DONE and get back to my life!!!
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Having made it through the bad days after round 1, I'm doing my best to take advantage of the good days left before round 2. I'm not brave enough to go back to Zumba (which I used to do before the diagnosis and surgeries), but I am taking regular walks and doing some stretching & yoga. I really should try to get some aerobic excercise in my routine. I have an appointment to get my wig cut tomorrow evening. No abnormal hair loss yet, but I know it's coming.
Has anyone done any travelling since starting chemo? I'm considering a business trip to Tampa for 2 maybe 3 days, if I can get the timing just right.
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hi all!
Just returned from my 5 mile walk. It really feels great!! I suspect that there will be days when I won't accomplish this but I try to give myself a goal everyday. If I don't meet it no biggie. As long as I'm still breathing it's a good day ! Lol
I enquired about an exercise class at wellspring. Still waiting for a call back. For now I'm going to start working out in the basement on my weights. With 21 lymph nodes being removed at time of surgery I know that there's a risk of swelling but there's a risk of that even if I do nothing so I'll take it slow. Plus I have carpal tunnel in the left arm too so if I don't get back to my weights my tingling will increase in my fingers
Damned if you do damned if you don't
Lol
Lilyrose don't be hard on yourself. Do what you can when you can. Just getting fresh air is a bonus!! In jealous that you have horses to feed! And feeding them and dogs is exercise!!!!!! I don't think I could do that!!! But if be happy to ride the horses - it's been over 30 years since I sat on a horse! I miss riding do much!!!!!!
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Hi Ladies. As I mentioned the other day, my SEs from round 2 were a bit worse, and lingered longer than with round 1 so my MO ordered me Decadron to take with the Zofran. Well, I no sooner picked it up from the drugstore and my SEs subsided. So I will wait and take it starting on my next infusion day - then for five days. Feeling great after 6 days now. Back to working out as much as possible. Yes, exercise is very important if you're up to it. Some of our treatments involve meds that make us crazy exhausted while others fight more with other SEs like nausea and whatnot. For me, my energy level hasn't really suffered. I do eat very well (except during SE week) and always take a multi vitamin/mineral and extra B6, B12 and D. I believe it's so important for us to keep our bodies in as good of form as possible so they can fight the best fight. I am getting psyched up for my 11 mil hike this Sat. to benefit our NY Blood Center. Up until now I was a life long donor, so this is a great way for me to give since I'm not allowed to donate anymore.
Hope everyone is feeling better as well today! We are doing this, girls! And we will get it done!!!
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good luck with ur walk longisland!!!!
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Awww, thanks Football! -
so I took off the tape which was covering my port after insertion last Tuesday and feel something. Upon further examination - lol - it seems that it's thread from the stitch. Really????? Now what? I doubt it will dissolve so I guess I'll call my nurse
:-(
Anyone else had this?
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OMG footballnut - another 5 miles - soon you can just walk to florida to visit!! You go girl. I did walk this morning for about 30 minutes - but plan on doing another one this evening when the hubby gets home.
I feel very good today - virtually side effect free - hope this continues until the next tx. I worked almost 6 hours today - the most since before my surgery - that also felt good to get so much accomplished.
Longisland - good luck with your walk!
Everforward - if you do decide to do that business trip to Tampa let me know - i am only about an hour south of there and if I am up to it I would love to drive up and meet you.
We can do this!
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you guys are really keeping active! I need that motivation :-)
Neulasta shot done and got my head shaved. What a relief!! Pics are of me newly bald and wearing my wig.
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Look at you, lemonade!!! All cute and bald - amazing how pretty everyone's eyes are when there is no hair. Your wig looks great.
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Linda too funny!
Well I have a SE! My plumbing is working too well - not diarrhea but bad cramping followed by having to go the washroom. I drank two ts which helped. Called my nurse and she said to keep drinking fluids. I'm swimming in fluids!! Lol. I suspected that chemo would target areas where I have had issued in the past. My stomach has definately had it's moments over the years. Nothing serious but stress and colds tend to get my stomach. Oh well! Back to drinking fluids. Then I'll pee instead!
I've become a plumbing factory! Lol
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so cute lemonade!! Love your wig - looks very natural!! And you are right - everyones eyes look so beautiful with no hair!! Think I am gonna have my hubby do mine this weekend. I will see how it is falling by then
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MameMe: I too am on weekly Taxol. I lost my hair during the week that I'm off chemo and have Herceptin only, which for me is week 4. I also was told it was 'unlikely' I'd lose my hair. And it started slow, by Thursday of that week (last week) I couldn't stand it any more so I had it buzzed. I'm ok with it now. Plus, I just got a wig today, so between that and hats, I'll be ok. I'm actually better now that it's over with. I think many had that experience. The anxiety of will it/won't it fall out was rough. Heck, the entire experience is, right?!! I had my 5th treatment yesterday and feel mainly very tired today. If this is the worst of it, I'll count my lucky stars and look forward to July 29, my final chemo treatment (hopefully).
FootballNut: Thanks for the advice on exercise. I was waiting to talk to a PT person, since I too have shoulder problems on my lymph node removal side, and that typically causes me numbness when I'm not regularly exercising. Unfortunately, there is some waiting list, that I've been on for a few weeks. What's up with that?!
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Looking great MakeLemonade!!
And I can't find it again - but someone asked about Herceptin. I usually have it with Taxol, but the one week I had it alone, I felt really good. Not tired, like with the Taxol and no Steroids with it, so sleep wasn't all messed up. Let me know if you have other questions about it. That was one week, but if my hair hadn't fallen out that week, I think I would have been 95% of my original pre-all this craziness self.
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Hi All!
I'm so bad at remembering everything everyone says. Do you all take notes? 8)
I'm so glad you ladies are exercising and feeling pretty good. I'm on an upswing and loving it! My PET scan (post radiation) shows significant tumor reduction in spine and no lesions on my pelvis anymore!! I finally feel like I'm gonna be able to do this again. After the hellish first round I wasn't feeling to good about anything. Today I feel confident and strong.
Here's to one more day to beating this crap!!
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has anyone experienced an itchy scalp? Is this a possible SE? It's driving me nuts! I washed my hair today but it feels coarse and greasy even though it's bike and clean. I also feel a few bumps on my scalp that I don't recall. Can't wait to shave it. I hope that I rock bald like my fave female rocker Joan Jett!!
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Good news on your scans, Kite!
footballnut - my scalp has been itching like crazy! It's been driving me nuts - I am on Day 14. I haven't shaved the head yet - maybe tomorrow. I did cut a bunch of chunks off with scissors. I read that a paste made with water and baking soda left on for 5 minutes at least can help the itching. I may have to try that.
Edited to add - my hair feels like straw, plus I've got a few extra bumps. The dermatologist said these were normal and would go away in a few days ... Argghhh
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sharonDe tx for sharing. Sorry that u have this itching too. Mine just started this evg and it's day 8 for me. Argh is right! Straw is a better description for my hair too. More like straw than greasy!!
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For what it's worth - I had the itchy scalp at the end of week one, then It was okay for almost a week before starting up again.
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OK, I'm tired of drinking water. I drank too much last night and it actually made me throw up. Fortunately, I only threw up water and some peanuts I had just eaten.
I just noticed that my heart rate is running around 120 beats/minute. Anyone else have a fast heartbeat from chemo? I put a call into my MO to ask but haven't heard back yet.
How are y'all exercising so much? I can barely manage just the half mile walk to take my daughter to school!
Brigadoonbenson: I don't take anything for pain since my MO said no Tylenol or Advil. My pain's not too bad. Just the muscle pains from the TEs. I just try to lie down & rest a bit when they bother me a lot.
LoveBeingNana: I too have had a lingering headache ever since my infusion. I'm on day 8 today and it's not too bad today, but it keeps coming back every morning! If you figure out a way to get rid of them, please let me know. And good luck to you tomorrow for your next infusion.
Spunky825: I think I need to dial down my fills like you. My first fill was 60cc and I didn't even feel it at all. The 100cc 2nd fill followed immediately by chemo did me in. I also understand your tiredness making it hard to exercise.
Chknfeet: I'm curious to hear what your PS says about filling early. Maybe it's just something my PS believes in...who knows. I'd like to slow mine down since I have months to fill them!
ColdInCanada: Thanks for the tip on Claritin for headaches. I'll give that a try. Sorry, I don't have the eye twitching so I don't know how to help.
Mikishelly: Sorry to hear about the bone pain. But no WBC? That's scary! Hey, I see you're also in St. Louis and also on the TC chemo, like me. I'm doing my chemo at St. Luke's. How about you?
jhodro: I too have shoulder range of motion problems on the side where they took the lymph nodes. I scheduled an appointment with a PT hoping to see her soon but her first appointment was 3 weeks out! I guess there's a shortage of PTs.
Have a good evening, everyone!
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I also have a super itchy scalp and full of bumps - it started for me the 2nd week or so. The wig lady recommended this face serum from "Lindi Skin Care" (online), once I buzzed the hair. I've been using the serum for two days and it has made a huge difference. No more itching like crazy. It was about $22 for a small amount, but it seems like it would last for a long time.
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MommyQ - you can drink too much water and get something called water toxicity - not sure if it can mess with your heart rate but it can drop your blood pressure so I assume it can - you need to mix in some other liquids in your diet - they count toward hydrating. Add in some gatorade or unsweetned fruit juice or some flavored vitamin waters or broth.
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Lemonade, you look great bald and the wig looks so natural. I would never know its a wig. I got wig #2 brand spanking new and free through the wig bank sponsored via look good/feel better program. We are eligible for 2. Wish I would have learned this before paying for one and now fighting with insurance to get it covered. I encourage everyone to check it out. The makeup alone is awesome!
The itching and straw scalp is normal. I broke down on day 14 and did the shave. It helped a lot. The front half of my head is now almost smooth but have some patches hanging in through the back but still shedding.
Went to a memorial service yesterday for a young teacher who ran the math department at the high school who became a BC angel on Friday. Very sad but a wonderful tribute to the many people this woman touched. One poignant story was told from a bald male teacher where she asked how he kept his head so smooth and shiny. His response- Dr Oz was featuring St Ives head cream as the best product. He has been using it since. I was two tired last night to check it out but wanted to share it with you.
Round 2 was Tuesday. Trying to stay ahead of the nauseau. Doing ok so far. More foggy than after round 1. Tired but not sleeping well. Trying to remember how many days before my taste buds totally left after round 1 so I can eat something tasty before they go, if I can get myself to feel like eating. Hoping for a full day of work today
Have a wonderful day, ladies.
Hugs,
Ann
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Hey Ya'll, Everyone is beautiful. It's been 9 days since round 1. I am finally feeling a bit normal again. My hair feels "funny". I don't know how else to describe it. That's probably coming next. I did sign up for the feel good program. That's in a few days.At least the bone pain is gone for now.Have an Easy Day today!
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Even though I knew this was coming and I've been reading about all of your experiences, it was still a traumatic shock to see the large clump of hair circling the drain in the shower last night. And the hair is falling like crazy today (I'm half afraid of going completely bald by lunchtime). I thought I would have a little more time between the itchy scalp (which really kicked in yesterday) and the full-on hair shedding. Oh well.
Sending good thoughts to everyone heading in to round 2!
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Lemonade you look beautiful!
Kite I am so glad you got some good news!
MommyQ I will let you know what my MO says about the headaches.
I am off to #2!! Have a beautiful day everyone!
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Hi SueMy case appears to be very similar to yours. ILC 2 cm ER PR +, HER - , Oncotype score 20. RB removed. 1 / 10 nodes +.
Chemo started last week. Nausea, constipation and loose motions. I have been advised 4 cycles followed by 12 weekly cycles of Chemo.
Can you share what I can expect and how to prepare myself. What should be my diet and how do I minimize the stress.
Thanks
Your sister
Rose
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Glad you are feeling better, merg.
Everforward - sounds like we are at the same place. I really need to get those clippers going ...
Nana - good luck today ( and same to everyone else who is getting an infusion). Hope the headache does not return.
Rose - welcome to the April thread. Sorry you have to join this club, but you will find lots of support. One thing that has helped a lot of us with regards to stress, is to try and get some exercise each day if possible. Even if it's a walk around the house.
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Mameme,
Bummer on the hair loss. You might want to get a short haircut at this point, worked best for me. the metallic taste will improve at about 8-12 days out. The GI sensation could be heartburn from the chemo/steroids. try PepcidAC before eating. Each MO has different recommendations. May the force be with you.
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Good Morning April Beauties!
Lemonade: You are GORGEOUS bald! Rock on Sister!
MommyQ: I have to comment on the whole exercise thing. It's intimidating, isn't it, to read about those women who train for marathons during chemo? And re-reading my comments, I think I've left the wrong impression. Let me explain. When I said "exercise" BEFORE cancer/chemo, I meant hard core, working out until I was covered in sweat and barely breathing and all-out exhausted and muscles aching the next day because I was a work-out MANIAC. NOW, when I say "exercise" I mean a Workout For People in Their 90s. Oh, I TRIED to do it all like I did BEFORE. But my heart rate went WAY up, I was short of breath, I got super dizzy, and my muscles were screaming at me to STOP, OH PLEASE STOP! And then I realized that my body simply isn't capable of healing from chemo AND, say, training for a marathon. In conclusion, you do what you can. And if all you can do is a 10 minute stroll around the block, where you wave at the snails as they pass you by, the so be it.
Good luck today Nana, and all those heading to the next round! Our thoughts are with you. *hugs*
I have ONE more week of good, and then next Friday is Round 3, and I DON'T WANNA. I have perfected the mental temper tantrum, complete with kicking, pounding fists, screaming, and even throwing and smashing stuff. It's pretty amazing inside my head, actually.
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MJH and fellow travelers, Thanks for the tips. I had session #5 yesterday and spoke with my onc. who gave me an rx for Pepsid, in case it was cheaper for me than otc. Last night I took it before bed, went to bed, had an hour of that bad belly burning thing, and fell asleep. This morning I felt fine. It worked, I have been good all day.
ALSO, I called a salon owner in the town where the onc. office is, and she is fitting me in at 2:00 to cut hair and play with wigs! She sounded SO nice, and I am thrilled to have an ally in this pitiful hair loss situation. She came highly recommended by thoncology dept., and is the woman who runs the Look Good program, which is scheduled for next Tuesday. She sounds like a down to earth person, and kind.
I took another fast 2.5 mile walk this morning, and I feel renewed vitality but also tired, if you know what I mean. I may hit the wall tomorrow, but maybe not. I have been much more capable in my last few days than I was at all last month. Feels hopeful. Big hugs to all, Mame
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It's been a little while since I've posted. I've had a lot go on, including my birthday
Our family tradition is to go out to dinner on birthdays, and this year, even with my bald head, I still wanted to go. I put the Marilyn wig on, and enjoyed a nice Mexican dinner to celebrate by 45th birthday. It was my first public appearance in the wig, and I was so happy that we were seated in a corner booth, so I didn't have to itch and adjust it with the entire restaurant looking on. I think my poor 11 year old son is the only person more self-conscious about my wig than I am. He says when he grows up he's going to invent a chemotherapy drug that helps people but lets them keep their hair. I actually tear up when I think about him saying that. Makes me realize that I am not the only one in my household really experiencing this cancer journey.
My family spoiled me with more gifts than I've received since my sweet 16...I was so overwhelmed I cried in the middle of it all. My favorite: the Pandora bracelet my kids picked out with a lone heart charm. It's ready for more
I went to a Look Good, Feel Better class on Monday. I was so excited to go, but at the risk of sounding like Debby Downer, I was a little disappointed. It was free, it was hosted by volunteers, so I don't want to complain...but it was a long two hours for me. There were only two in attendance, including myself. The make-up gal was a Mary Kay consultant, and showed us how to put on basic makeup. I am not usually a make-up girl, but I liked the idea of trying out a new ways to apply and maybe some new colors. I read beforehand that the makeup kits are tailored to your coloring and usually contain high-end products. Both my kit and the other gals' kit had the exact products in it, even though she was medium complected and I am light. The products were mostly Cover Girl and Avon, with one Estee Lauder foundation that was really way too dark for either one of us. The mascara was dried up, so we couldn't really use it, and the blush and eye shadows were strange shades that even the consultant wouldn't advice wearing. The other gal in attendance was nearing the end of radiation, wasn't doing chemo, so she wasn't going to lose her hair. I already have a wig. But, the wig salon gal insisted on doing her entire presentation with me as the model. She had me try on six different hats and five wigs for...no one. I hate to sound negative. I just wish my class was like the ones I've heard of with fantastic makeup bags and lots of other attendees to bond with.
I had Round 3 on Tuesday. I was so nervous because my infusion nurse stuck the needle into my chest rather than my port the last time, and I was afraid of it happening again since she said my port was tilted. Thankfully, my MO assured me that my port was not tilted, and he said he would not allow that nurse to ever touch me again. I went to the infusion room feeling empowered by his attitude, it made me feel good that he had my back. Turns out he requested the infusion supervising nurse access my port, and it went very well. Nothing more than a little sting from the lidocaine. This infusion felt different though...I was so affected by the odor than I left the hospital feeling very queasy.
Neulasta shot yesterday, and thank goodness my husband was able to leave work early to drive me. I am have been more nauseous this third round than I was the first two rounds. Yuck. I'm feeling so thankful to be home and keeping chicken soup on the stove all day.
And I'm thankful for all you ladies...so glad I'm not alone here. My best to you all!
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Swissmis- Happy Birthday!! Kids always have a way of making your heart melt. My hair started falling out and since this is the 2nd round for me my 6yr old is pretty upset about me being bald again. I wish he didn't have a sick mom.
Look good Feel Better for me was a BUST. My mascara was dried up too! I got repremended infront of everyone for double dipping my brush. They were trying to keep me from creating bacteria but my goodness they were rude! They both hollered at me and one of them grabbed the mascara from my hand and took it away. It was crazy. I felt so embarrassed!
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Hi everyone! I had my second round of TC yesterday and it went well. My Mo feels like I am tolerating treatment well so that made me happy. I told him about my headaches and so He did change one of my premeds for nausea from Aloxi to another one…..I think it began with a K?? Ahhh chemo brain. Anyway I have no headache as of yet compare to last time when I had a constant severe one from the time I left the fusion center until 4 days later. He also gave me Vicodin for "just in case I do get a headache" and also for bone pain. I am off to get my neulasta shot today.
I hope everyone is doing well with minimal SE's!!!!
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glad it went well love. I'm starting to get nervous about my second TC infusion even though it's not for another 10days!
When I was on CMF, I would start to feel a headache during the infusion. I would ask them to slow it up and then it would go away. I mentioned this before my first infusion of TC and was told that it's so slow, if they slowed it up anymore I'd be there all day. But I didn't get a headache at all anyway.
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Is anyone using Latisse to prevent eyelashes and eyebrows from falling out, rather than after to increase growth? I've heard that eyebrows usually stay intact until after chemo is over.
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Had an hour yesterday morning where I was SE free other than fatigue on day 2 post AC!!!! woohoo! Hoping for a repeat later today when the family is here! So grateful for that hour and at the same time jealous of all the people walking briskly down the block...lol One day!! For all those that can walk Yippee! I am going to try to make it to the cancer yoga class here today. They said half the people can't do more than lay on their mats and breath so it might be for me!
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chknfeet I lost my eyebrows on TC last time about 6 weeks after chemo was over. They were back within about two weeks.
Clarm- that's awesome! I have had those moments and a couple days on AC. Too bad day 11 hasn't been one of them for me.
. Love beingnana- I hope you stay SE free this time.
Kite- glad your PET went well and I am so sorry that they fussed at you at LGFG class
. Swissmiss- glad you had a great birthday. Sorry that round three is hitting you so hard. Do you have 6 rounds ??
MameMe- glad that the salon owner fit you in. I hope you had a positive experience with the wig fitting.
So I felt great yesterday and went on a field trip with my 8 year old to the national zoo in DC. Today I had to go back down to DC for a photography job (I am a photographer) and I am paying for it today. I have never been so grateful to get home this AM.
I can only blame myself on some things like the heartburn that I have because I forgot to take my medication.
. However I hope the headache is from my shingles that I have developed. . Monday is round 2 and I am not ready for it. I don't want to feel wobbly and unwell again but I just keep reminding myself that I will be half way thru AC after Monday. Hope everyone has a great SE free weekend.
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Kite & Swissmiss: Look good feel better was not a great experience for me either. The makeup was a grab bag, so to speak, of different products, none of which I would typically use. Wish they were getting more natural products, as we are being treated for Cancer.
What I think was worse was the volunteers were from a wig salon, so they spent most of the time promoting their salon and handing out cards. I too was disappointed. I did meet some great ladies, but was kind of hoping for more. The funny thing was that they were trying to convince a couple of us that we were 'medium' not light skinned. I have never worn a makeup that is darker than the first shade - for any company - my skin is practically transparent. I'll count that experience as "it's the thought that counts". -
hi all, had AC on Thursday , round 2. Have been able to work but came home early yesterday and today around 3pm for a nap. Chemo fog seems worse this round and not sure if that is due to the switch from TC. The nap seems to help. I told my team at work they don't want me making any big decisions while in this state and was better if I left. Of course, if only I could give raises all around"
No headache this time, though, and GI track seems better.
Was able to walk 2 miles last night to my dd soccer game. Kind of rainy tonight so I am not planning on a repeat but it did feel good!
I am sorry some of you didn't have the same great experience I did with the Feel better program. It must be specific to your region on how it operates. I will be wearing Rachel tonight with my Elizabeth Arden lipstick
and wishing the rest of you could have felt the same positive vibes.Happy Friday!
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jhodro: yes, this is what I was thinking too...why not promote some all-natural products that would be good for all of us, especially those of us fighting cancer. I wouldn't normally complain about stuff like this, but my bag seemed like a bag of left-overs. I was surprised the other gal in my class had the exact products because I couldn't imagine this stuff anywhere but on the clearance end-cap at Target. And yes, the wig lady was definitely there to sell her product. I was frustrated with her because I felt silly modeling for the one other gal in the room who was not even going through chemotherapy and wouldn't need a wig at all.
mmtagirl: I think you're right, it depends on your region or area where you take the class. I am finding that friends of mine from Minnesota ended up with high-end make-up and even free hats from their class, while my class in Tulsa was basically left-over Avon make-up and a lady trying to sell wigs to those who didn't even need them. Glad you left with positive vibes
And I will say again that I realize this was a free class put on by volunteers. I am grateful for the time and energy that went into providing the class...I just wish there was some equity in the quality of the products and presentation.
One more thing: has anyone had issues with menstrual and/or vaginal bleeding since starting chemo? I had my third infusion on Tuesday, and I'm starting again with some heavier bleeding, like a heavy menstrual cycle. Actually, I've had almost continuous bleeding (mostly light) since the first week of chemotherapy. I read somewhere that this isn't really a big concern, but wondered what everyone else has experienced? Last year I had some issues with fibroids, so I get worried and probably over think some of this.
Wishing you all a happy weekend...and a Happy Mother's day to all you Moms out there
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swissmiss I started spotting last Saturday 3 days after chemo. Then off and on dhring thus week. Not much to speak off. I was perimenopause anyhow do just attributed it to that
Well I did The following pics area and the new wig and me au natural. My new topless!! Lol got it buzzed last night. Bald is AWESOME!!!! Feels great!!! So weird. I feel better now then even prior to cancer diagnosis. Walked another 5 miles today. I hope that it seats like this but still doubt it!!!!!
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footballnut: you look beautiful!
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thank you swissmiss!!!!
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Footballnut--I agree, you look beautiful!!!!
just back from my 3rd infusion. MO says the tumor DOES feel a little smaller and also softer. He's now gotten my gene test results (positive for BRCA1 gene mutation) and he wants to add cisplatin to my taxol just once every 3rd week starting today. So today took an extra hour because of the cisplatin. Cisplatin has more of a nausea effect so i was given extra anti-nausea today as well and instructed to take my Lorazepam tonight and start with the zofran first thing tomorrow. Fingers crossed!!!
have a wonderful weekend my fellow cancer slayers!
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Beautiful, footballnut.
Janet - good news on your tumor shrinking.
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just beautiful, Footballnut!
Swissmiss, I am having similar issues with menstrual periods. One my third one since first round and just had round 2 Tuesday. Have basically been on my period all but one week! So much for chemo pause! I am 51 and brought it up to my mo last week. He didn't seem concerned although he expected the opposite.
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Footballnut: You look radiant!!
Mmtagirl: Same for me as far as my cycle goes. I also brought it up to MO and he says it's not chemo that's causing it, but didn't seem concerned. I can't imagine what else it would be, was a 28-day girl before treatment. I am 43, and was kind of not going to mind chemo pause!! I see you are also in Michigan - I think the fact that spring has finally arrived will help with all of this!!
Janet: Best of luck that you wake up tomorrow feeling great!
Swissmiss: I hear you on the Feel Good class. Maybe I'll have to volunteer to do that when this is all said and done!
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Swissmis- had periods so bad I had 2 blood transfusions on 2 different occSions. They eventually took my uterus out. It was a mess. Don't want to worry you just sharing my experience.
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I am late... Not pregnant so is it "chemopause" already? I am only 30. Hope it comes back!
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Yikes on the Look Good class. I signed up for it coming on Monday. I hope it's not bad. I've been feeling ok for the past few days. You become very aware now of the good days & bad days.I have about 1 1/2 weeks till round 2. I am really dreading it Hope ya'll have a easy SE free weekend. BTW, You look "Marvelous" Footballnut!
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Ladies!!!!
So sorry ive been mia lately!!! I am day 9 of round 2 now, and finally starting to feel like myself!!! Have a few mouth sores, but no where near what I had after round 1 , so all the biotene and baking soda rinses are helping!! Woot!!!
Clarn - my onc said periods usually return a few months after last chemo!!
Cold - OMG I nealry dropped my phone after I read your post...yes for eye twitching! !! At least once a day!!! Didn't even relate it to TCH!!!!
Ugh, and I too got my period. Wth!! I thought id get lucky and lose it for a bit. And booo, its even lasting more dAys than my regular cycle.Booo!!!
I read everyone's posts from last few dAys - wishing and praying everyone have releif and comfort.
And to all the mommies, have the happiest of mother's day!!!!
Xoxo
Jen ♥♡♥♡
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Clarm I was 32 last time and my period came back not HS after I was finished on my diagnoses anniversary. It will come back.
Janet great news about your tumor shrinking and feeling softer. Hopefully adding cisplatin destroys the rest of it.
Footballnut you look great
. Glad you like your new look. It's odd to hear bad things about the ACS's look good feel good. At the hospital that I go to the ACS employees do the class so there is no pressure from a salon or anything. I signed up but I can't remember when. I am already suffering from forgetting what things are called and peoples names. I hate this but eventually it gets easier.
I have learned that I can no longer sleep in which stinks.
. I can normally sleep in until at least 9 but not after my surgery. I am now up at no later than 7 am. So frustrating while the rest of my house sleeps lol. Day 10 brought the first mouth sore
and 11 brought its friend. I was hoping to not have any at all . I hope everyone has a great Mother's Day.
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Footballnut You look great!!! I especially love the big smile. I have to say it took me a while before I could smile after shaving my head.
I have to agree - My Look Good Feel Better class was not very good. I so appreciate the sentiment behind it and I am grateful but I didn't get too much out of it. I brought my own water and that ran out in an hour - I was so surprised they had no refreshments of ay kind - especially water for chemo patients. We had zero emphasis on head wear - They just had old worn out wigs sitting on a table and you could choose one if you wanted to. The hardest thing about the goodie bags were that we all had something different so while they were trying to do the class, we had to stop over and over because one or more did not have eyeliner, our blush, or concealer. The volunteers were very sweet, but the program was lacking.
I started with a bad headache last night. It kept waking me up. Now this morning I have intense nausea…not something I had last time.
I also have a lotos fatigue. I hope you are all doing well. Sunshine I am so glad you are feeling better.
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Thanks for the reassurance about my chemopause ladies! I hope it works out for me!
I have to say that I hope my LGFB goes better if I am going to expend energy to go
I really do need new makeup! And at the risk of jinxing myself, so far round 3 is better. (Chemo was Wed) Nausea and tired but no headache. I had a cold which I am still coughing up copious amounts of green phlegm, but no fever so I hope it goes away!
Nana- hope you stay to feel better soon!
Football- so beautiful and brave:)
Janet - woo hoo on the tumor changes!
One day I would really like to get to meet you all. I know we won't all be done treatment the same time, with rads/surgery following for some but you really do inspire and keep me sane!
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I have been wavering on this LGFB class (because for me it means taking MORE time off work and all my appointments are already eating up my sick time at an alarming rate) but after reading these comments, I think I'll skip it and just go to Ulta or Sephora for make up tips if I lose my eyebrows or lashes.
Yes, I was VERY thrilled to hear him say my tumor did feel a tad smaller already and softer, like the mass is breaking down. That is why he decided to add the cisplatin, even though it is normally used for ovarian cancer. Because of my specific ER+ HER2+ status, he thought it might work well with the Taxol and encourage the mass dissolving even more. I'm only getting the cisplatin every 3rd treatment though because it is harsher and ups the nausea factor (which I am feeling today) so my next two weeks will be just my normal low dose of Taxol. The other good news is, because of the addition of the cisplatin, they upped my benedryl and my stuffy nose is all but gone today!!
There is always a silver lining right?? I am also hoping for chemopause!!! I'll know in another couple weeks I hope you are all feeling well and enjoy your Mother's Day tomorrow!
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I've been wavering on the LGFB too, so I appreciate everyone's feedback and may save myself the trip!
Janet - im very excited for you that the tumor is shrinking! My tumor was noticeably smaller to touch after my first round (confirmed by my onc physical exam too!!). It felt very reassuring that chemo is kicking my cancer's butt!!!!
Jaimeh - I have been having tons trouble sleeping (and getting good sleep) too. Even days off the steroid. Today I was up at 530 (silver lining was I enjoyed a nice cup of coffee whole hub and kids were sleeping!)
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It's nice to hear some good news from many of you (except for the periods!). I did the big buzz cut today. I handled it much better than I thought I would; I didn't even cry. In fact, getting the buzz cut put me in warrior mode. Hear me roar! Here's me with the buzz cut:
Will try to upload a photo with the wig to my profile.
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EverForward - Beautiful. Amazing eyes.
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Everforward, I agree you look beautiful!!!
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Congrats Everforward! You look fantastic!
I agree with you, the preparation up until 'buzz day' is worse than the actual day. I feel like I got it over with and now I too am in fight mode. Today I even did my 3.5 mile walk with just a baseball cap so the world could even see the head. I wanted to use my usual running hat, it's much cooler than any of the other hats with more coverage.
Happy mom's day to all you moms out there and hope everyone is enjoying the weekend SE free (as much as possible!!)
Oh - and on the LGFB - if you want to meet some local people that are dealing with all this, that is a great place for that. Just as a reminder that there are other people going through the same issues as we talk about here.
Have any of you gone to any of the group/sharing meetings - I hesitate to call them support groups - but I guess that's what it is? I have available next Monday, so I'm considering it, but it's two hours. And Monday is my last 'feel decent' day before my weekly infusion Tuesday. I am selfish with Mondays since I've generally gotten back to almost myself.
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Everforward you look great with the buzz and the wig looks so natural - although I would like to see a bigger pic of you in it!!
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Everforward you look great!! I started losing a lot of hair and now it has stopped falling out but I am thinking it will start again since I just got round 2 last week.
Round 2 is much harder so far. Yesterday was a bad day. I feel a little better this morning, but so fatigued. Those of you who are ahead of me, does it take longer for you to have a "really good day" after the 2nd round than it did during the first?
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As everyone has said, you look beautiful, EverForward.
I felt really good during week 2, but week 3 is kicking me. More fatigued, and a few more side effects. Now have small little bumps/blisters on my palms and fingers which itch a lot. I didn't help myself because I stopped making sure I drank lots of water, so trying to fix that.
Happy Mother's Day!
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Nana- round 2 did take longer for any energy, but I am getting AC every 2 weeks so not a lot of rebound time anyway
Hope you get a really good day soon! -
Sharon, interesting, I also had a tremendous second week but now I'm more tired. It seems so odd, I thought I'd feel better and better until the next infusion, I also stopped drinking so much, Have to fix that,
If I tug a little on one area of my hair, it comes out. So it's starting. Better get a wig fast!
My daughter's graduation is a week from yesterday and I'm really hoping to have hair at least until then,
Thanks for sharing, I really am so tired!
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I see you are on Taxol too Clarnn. How do you handle the muscle/bone pain?
I'm really getting afraid of round 2, next week.
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Round three is kicking my butt...I do feel like some of my SE are getting harder each round
I haven't been drinking as much water as I did the first round, which could explain some SE's, but water actually tastes horrible to me right now. I am currently trying to get down as much water as I can by mixing it 2:1 with juice and lots of ice. Does anyone else feel the SE's are gradually getting worse? The metallic taste/smell that is lingering in my head is wreaking havoc by making me constantly nauseous. Each round I end up taking at least one more anti-nausea tablet the doctor prescribed. I have one more round of Cytoxin and Doxil, and I'm hoping the SE's aren't even worse next time around.
Round 5 chemotherapy will be Taxol for me...I'm wondering how my SE's will differ, if any. It could be a whole new scene with the different drug!
Happy Mother's Day to all you moms out there
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Timbuktu- sorry I am AC right now and then will begin the weekly Taxol. I am not sure how to put that in there. I will be looking at the weekly Taxol thread to see how people manage the bone pain.
Swissmiss- I feel like it gets harder too. One more of these. We will do it. Hugs!
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Happy Mothers Day to all! My older son and hubby took me out to dinner last night to avoid some of the crowds. It was nice even though I couldn't eat it all. Made a nice lunch today :-). Was exhausted by the time we got home, but glad I went.
Sorry to all that are experiencing bad or more SE this time around :-(
I am on day 6 of my second A/C treatment. Other than the Big C (working on that one), and being more tired than the first time, I don't have too many SE, thank goodness. Was worried about nausea but started the anti nausea meds sooner and seem to have it under control. Water tastes thick somehow, but am doctoring it up with either Crystal Light or cutting it with some juice. Seems to help. Not all foods appeal to me, but better than the first time, so keeping fingers crossed!
Next is to keep me out of the hospital this time on day 8 :-)
SO glad I got my head buzzed as I could not STAND the hair absolutely EVERYWHERE - Timbuktu if your hair is starting to come out, sorry, but I doubt it will last the week :-( You might want to bite the bullet, get it buzzed and get used to your wig. No one can tell when I am wearing my wig - some say it looks better than my own hair - have to agree :-)
Called my mom, spoke to my other son who is too far away to visit, now time for my first afternoon nap :-). Hats (wig) off to those of you able to walk a couple of miles .... I feel like I have run a mile just going up and down the stairs :-)
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Clarrn: I am on weekly Taxol and I don't experience any bone pain. Many other SE's, that I'd generally say are more annoying than anything, but no bone pain. I'm not sure if it's different if you've already done AC or some other cocktail.
Hope that helps!!
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hi all!
Thanks for your kind words. Now that I'm buzzed I'm cool with it. My scalp is so itchy this evening! It's driving me nuts!!!
I feel strange that so far my SEs have been what I would consider minimal. I'm on day 12 now and I've felt awesome since last Thursday including today. I've been walking a lot including 4 miles today
When I look at life after my first round of chemo I seemed to have had SEs for the first 8 days starting with nausea and a bit of vomiting with fatigue to being wired for a couple days to stomach cramping. Since this past Wednesday I have felt awesome. The only new thing is the itchy scalp but once I put conditioner on it it calms down. Even when I felt wired I was still able to go out with friends.
I hope that my SEs stay like this bit after reading what may of you are managing through I suspect that after my 2 nd round on May 21 things might change
I wish you all minimal SEs and the best of health. We will all get through this!!
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Yes Nana & Swissmiss, I agree. Round two was worse than round one. I called my MO and they prescribed another medicine to help. I didn't actually take it because by the time I got it I was feeling better, but will definitely take it next round. The nurse said she was really happy I called. They have a bunch of tricks up their sleeves to help us, so please don't hesitate to call them. I have been feeling so good this past week, I almost forgot I had cancer
Participated in a Hike for Life yesterday and hiked over two hours at a ridiculously fast pace. My feet have suffered big time, specifically two bad toe injuries, but that will heal. It was very empowering to be out doing that, and also to be supporting the NY Blood Center. I raised $150 too! I hope everyone had a great Mothers Day! Hubby and I went to an organic farm and bought organic starter vegetable plants and started our garden. I think it is going to be a lot easier to combat the next 4 rounds now that the nice weather is finally here and spring (the season of hope) is in full gear. Hope everyone is feeling well, and has a good week ahead.
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Happy Mother's Day to all you Super Hero Moms!
YES, to the SEs being worse with Round 2. For me, it's the FATIGUE that is hanging on . I swear I could sleep all day long if it wasn't for, you know, LIFE. And my muscles seem to tire out more quickly too. I walked 2 miles on the treadmill last night, and my muscles were crying by the end. In my "Before", I used to RUN 3 miles as a WARM-UP. Now, as Lemonade pointed out, walking up the stairs exhausts me. I feel like an aged version of myself. My husband's 100-year-old Grandmother could probably take me in a race right now.
Footballnut & EverForward: You Ladies, look AMAZING. You beautiful, beautiful women! Isn't it remarkable how much bigger and striking our eyes look when the hair is gone?
Regarding periods: I got mine THE DAY AFTER Round 1 (I KNOW, right? Blah). It was much heavier than normal, but it only lasted 7 days, and I haven't see it since. A word of advice, although maybe you all already know this. I was told NOT to use tampons - apparently they are bacteria factories. Which makes me hope EVEN MORE that my period will just stay away until chemo is done. Cuz heavy bleeding + pads only = annoying and gross and all-around pain in the rear.
Sunshine: THANK YOU for the response regarding the eye twitching. I thought I was going crazy! It has almost disappeared now, but Round 3 is this Friday, so I'm guessing I'll be all twitchy again next weekend. I'll take that over the nausea though.
Well, I'm heading into my "Good Week", and the weather looks like it's going to be beautiful! I'm TRYING to enjoy it, but pre-chemo anxiety is setting in. I DO NOT want to do this again. Bah. I think I'm going to go watch some guilty pleasure TV (Ghost Whisperer) and knit something silly. Like a fake boob for myself. And then I'll embroider my husband's name on it and call it a tattoo.
Have a great night all!
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well the night before chemo # 2 and I now can't sleep.
. Grrr. My head has started itching which is a sign of things to come
. I almost think the time leading up to the hsir loss is worse than when it actually happens. Once it starts I just want it gone I did promise my kids that they could shave it. My hair coverage stuff is all ready. I am going to purchase a new wig but I am waiting until my hair is gone. The stinky part is this week my daughter has a solo in the school musical on my bad day. I am determined that I am going to make it no matter what.
Eye twitching is VERY common on TC and the majority of the time goes away pretty quickly once TC is done as long as your tear ducts are not clogged.
Off to eat yet again. I feel like a pregnant lady rather than someone going thru chemo.
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Thanks jhodro- good to hear something less scary about my next drug cocktail
Coldincan- lol... Love that you are going to embroider his name on it
If I had a foob I would steal your idea. -
I can't sleep either. I think I'm addicted to the xanax and ativan that I've been taking to get to sleep, I'm trying not to take it tonight.
I'm dreading that second round too, Knowing what awaits is hard.
And the hair situation makes it all too real. As long as I look kind of normal I can deny what's going on. But soon that will be impossible.
Can't complain about how i feel physically although I was more tired today. It's more the dread of what's to come. And for some reason I ate like a pig today. Have to stop that!
I gained 60 pounds the last time I had chemo and I still have 35 to lose. Just the extra weight causes such fatigue! This time around I haven't been hungry at all. But it was Mother's day and for some reason I thought food would be a treat. Now it's 3 am and my stomach is still stuffed.
Back on the wagon tomorrow!
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Morning all, Hope all you mothers had nice mother's day - I did - my daughter came to visit and we had a very nice dinner. The one thing that I really didn't experience yet was a change in taste or loss of appetitie. The only thing that has tasted vaguely odd is iced tea - for some reason it tastes like fish LOL. In general I have felt pretty good so far for the first treatment. Constipation initially that took 5 days for me to get it resolved, achyness and fatigue that comes and goes. The worst one, because it scares me, has been the on and off neuropathy in my hands and feet - was worse the first 4 days after treatment but still shows up now and then. I did have one day - last Friday that I felt suddenly like the dementors had swooped over me and sucked all the joy and life out of me. I believe I had hit nadir with red blood cells. That resolved the next day. I have tried to walk everyday and I think it helps. I am hoping to have a good week this week leading up to tx 2. Hope you all have many SE days and that the ones you have are manageable.
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The neuropathy was horrible for me too for a few days but thank goodness it seems to have gone now on day l4 of the first infusion. The red blood cells must be low on me too, We can't see it but we can feel it.
Have to keep reminding myself that this is temporary.
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Just reread my post LOL - hope you ALL realize that I was wishing that you all "have many SE FREE days" not many SE days - ughh. I am blaming that post on chemo brain
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I was just dreaming that I was at work and then I got called in real life to pick up a shift. Lol. It did make me feel normal for a second
How I wish I was well enough to do -
3rd AC really hit me hard. Had a tough Mother's Day. Bone pain, nausea, the works. First 2 went very well. One more to go- hoping the last AC will be better. Anyone in the same boat? Can anyone offer if taxol will treat me better? Usually very optimistic but having a pity party this week. Trying to hold it together for everyone is not easy when you feel lousy. Praying for us all to get through this and never, ever have to do it again.
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hello all
Beautiful day today and it was such a great weekend. My DH and I volunteered at a BBQ at Erin mills Mazda this past Saturday in support of the cdn breast cancer foundation. It was awesome. I met atleast 3 survivors with great stories! Do inspirational!
The gm of my company really pissed me off last fri When I checked my wmd he sent me a request at 7:30 in the morning to connect with him on linkedin. For those of u not familiar with this it is a networking tool for business. When u send a request to connect with someone a default message appears which can be changed. He didn't even bother to change it. I haven't heard from him since starting my std then receive that. I may not have minded as much had he changed the default message to atleast say how are u doing? I got do mad!!
Other than that my scalp drive me wacko last night with itching. After applying a cold compress it seemed to calm down instantly. Day 13 today and STP have my hair. Fall out already !!
I drank a cup of non sweetened cranberry juice this morning. Ugh ! That was disgusting! I plan on drinking a cup 4 x a week and it will NOT be fun!!
I hope that everyone has a great day today! I'm off to walk then go boob shopping!! Lol
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I find cold helps scalp itch- keeping room frozen at night works. Keep head exposed as much as possible during day. What is cranberry juice for? Unsweetened sounds tough!
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completely agree with rbc comment- since I got period before round 3, my counts were low and I think that's what knocked me out this time.
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Ms. Caruso sorry to hear you're having a tough time. Pity Parties are definitely allowable, and we can depend on each other to sympathize and offer support. You will be feeling much better in just a couple of days. My 2nd infusion two weeks ago was tough and I'm already getting a little anxious thinking about next week's. You should let your doctor know though because he/she might have something they can do for your next infusion. My doctor ordered me decadron for my next, hoping to ward off the seemingly endless days of nausea that Zofran alone didn't combat. The only other thing that has helped me is fresh air. I have noticed that when I'm outside in the air my nausea lifts a bit. I hope you have a good day and show signs of improvement with the SEs today.
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linda505...I love your reference to dementors. It is about the best description of how I've been feeling lately. Running the risk of sounding overly dramatic, it seems like the joy of life just was sucked out of me after my third round last week. Fatigue, nausea, aches, the bald head, everything is just taking over.
footballnut...what is the unsweetened cranberry juice for?
I'm hoping one more day of lazing around the house will get me going on my "good" week. Best to you all!
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Hello everyone! I'm back.I tried to get caught up on all the posts. I hope everyone is hanging in there.
I had round two on May 2nd and am back at work today. Pretty similar to round one for me with more nausea. I didn't pass out this time but almost did on the same day at about the same time. Cold sweat, extreme nausea, profoundly weak. Felt like I was dying. So scary. Lasted about 30 min until it started to settle down. But it did. Very shaky, weak. Had some water and chicken broth. Spent the next three days in bed or on the couch.
But I'm up and about now. I actually walked the Race for the Cure 5K on Saturday with my husband and best friend. It was tough but I did it. Ran a marathon last year. Strange to barely walk 3 miles now. Glad I did the walk though. Very inspiring. I ran it several years in honour of my mom who had breast cancer.
Anyone else out there experience the presyncope (feeling like passing out) or heart arrhythmias or dizziness? That's by far the worse side effect for me. My oncologist will send me to a cardiologist to wear an event monitor to monitor my heart rhythms. I'm a Cardiac Intensive Care nurse so I understand all of this quite well but dhaven't heard of anyone else experiencing these side effects. I was told they are very rare.
Thanks everyone!
Laura
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hi there
A friend of mine suggested that I start drinking cranberry juice years ago since she said that it's good for the digestive system. I've also read a lot about the benefits of cranberry juice so I thought that is give it a try
Eeeeew!!!
Lol
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When I was on CMF two years ago, i would sometimes get the feeling that my heart would stop, They took out the floricil as that can effect the heart and put me on a Holter monitor and gave me a stress test. They both were normal so they put the floricil back in the mix.
Once they gave me IV steroids and my heart when crazy. I thought it would explode. It was very painful and my blood pressure shot through the roof. It passed with the steroids.
Now, on day 14 of my first TC infusion I feel really exhausted. Things have been ok until now but this is a little bit beyond the pale, I'm trying to sleep but it does feel more like passing out and I can't sleep because it's a frightening feeling. I'm guessing it may be my hemoglobin is down..
Running a 5k is quite a feat given what these chemicals do to us. I want to push myself too but I wonder if it's really the best thing to do.
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Hey Ya'll. I went to the Look Good, Feel Better workshop today. It was ok. I was the only one there so I got individual attention. The makeup was a mix of high & low end brands. So I go tomorrow for some lab work. Next week is round 2. I am dreading it, ALOT. So I am going to enjoy this week. Have an easy day today Ya'll. P.S. I love your name, Everforward!
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Exercise is a wonderful thing. IF our bodies are up to the task. If they are not, then it becomes an additional stress which will hurt us. If we listen to our bodies we know when we need to lighten up or stop. That's what happened on my hike Saturday. I got to a point where I knew I had to stop. I had the little stubborn voice in my head trying to push me to finish, but I was feeling dizzy and over exhausted. Sometimes just a walk to the mailbox or around the block is all we can achieve. And that's okay. We have a serious job on our hands right now of taking care of our bodies through this onslaught of disease and poison, so please let's not push ourselves too much. What I'm doing is exercising on my two good weeks, trying to get in three days of solid exercise a week. The other days we rest. We eat right when we can too. And when we feel like crap, we do whatever it takes to help ourselves feel better. For me, it's doing a complete 180 of my normal diet/exercise lifestyle. And that's okay too. We need to baby ourselves to get through the SEs.
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That awkward moment when....
I put on my sporty Rachel wig and realize I look just like Phyliss Diller in red hair before heading out to a mother's day bbq....
I still have to brush off the 1/4 in hairs from my face each morning that seem to survive my bald head.....my bald is no longer beautiful....
I BELCH really LOUD out of nowhere in the stairwell at work and hope no one could hear me.......
I left my purse and all it's contents in the work cafeteria and don't recall I even brought it with me until it is returned.....
I lay down on the couch at 6pm after dinner, wake up at 7:30 and go to bed for the night at 10pm and still don't want to get up in the morning.....
I feel as old as the elderly sitting beside me getting my weekly lab work done.....
Yep, that has been me the past 24 hours....and, I too, used to run 3 miles for a warm up. I feel like a shriveled up old lady now....even with the very smooth skin (one good thing from the chemo!)
7 days past round 2. Getting off the Taxotere helped with the GI issues and food tastes moderately better. However, it's either the change to Adriamycin or the cumulative effects but I am MUCH more fatigued mentally and physically this round. And, chemo brain is real! My muscles do feel much more achy and weakened than round 1. But, I am not in the hospital at the same time I was for round 1 so this is a very special silver lining!
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MMTagirl - I know some of this is really not funny but you made me Laugh out Loud and I can soooooo relate
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Mommy Q - I am over at St John's Clayton/Clarkson.
I made it through the no WBC scare! I was sure I would be headed straight for the hospital, but instead I isolated myself in my room and washed my hands like a surgeon. It worked.
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longisland so true re exercise
Mmtagirl same as Linda. You had me laughing. Not at you - just how you expressed everything. I am with you!
Gotta laugh at everything as much as possible
I started reading stuff on the internet today and got myself down. I know - stay off it!!
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mmtagirl - I am with you.
Mikishelley - I'm glad you didn't have to go to the hospital.
Footballnut - I am making myself stay off the internet - except here - no good found there.
So after round 2 physically I am actually feeling a bit better than at the same time after round 1. BUT I AM AN EMOTIONAL WRECK!
This is day 5 post round 2 and I worked today and didn't have to take anything for headache or anything else. I called my husband though and could not stop crying which really is not like me. It takes very little to get me going again….just sad and overwhelmed. I feel like I have no control. I had some of this after round 1 but it's worse this time.
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Lovebeingnana - I had one of those days yesterday - cried for absolutely no good reason multiple times and I was physically feeling good. This stuff messes with our hormones and I guess it should be expected but dang. I know crying releases stress hormones and toxins from our bodies so I really think it is our bodies way to get rid of this negative stuff so I just let them flow when they start. I do actually feel better after a good cry.
Day 14 after my first treatment and headed in for my blood tests today - will be curious to see where my counts are. Day 7 they were all normal. Looking forward to having a good week before my next treatment on the 20th. Here is to few and manageable SE for all - and many many SE days.
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So I'm boo hooing too. My hair is finally coming out in handfuls. I knew it was coming but I'm sitting here crying. Damn. And I have blood work today.
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Nana, I am right there with you. Hence, the post with levity to try and help get me readjusted. I look at myself in the mirror these days and wonder who that is staring back at me. I am finding that this chemo phase is much harder on me and my family, especially, DH, than we thought. I think it is the outward physical manifestation of what we are dealing with and can no longer hide. We are ok and better days are ahead!
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Hey mmtagirl, I'm trying today, but I'm crying today too.
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We have every right to cry - we are going through a shitty time - no if, ands, or buts about it. It sucks, plain and simple. Don't feel guilty about feeling sad - explain to your families that you will be sad sometimes and it is ok - it isn't their fault you are sad and there really is nothing they can do to make you not sad but a hug does help. I had that conversation with my hubby and daughter again this weekend. Told them please don't tell me to be strong when I am sad, scared, or crying - just give me a hug or tell me that you love me. It is normal to feel like this - just let it happen and then move on to the next thing in life. We got each other's backs - remember that - we are in each others pockets everyday saying - I get it - I hear ya - it sucks - lets go fight
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I cried last night as the doom and gloom thoughts hit me out of nowhere. I'm waiting for my hair to fall out. Day 14 for me and the buzz is still there! I find that I've been fairly positive when I keep busy. A friend of line said that I rock the skinhead look. As a musician this was very positive for me as I said - yeh - I'm a punk rocker!!
Let's keep strong.
My hubby has colitis and has taken pills everyday for more than 15 years and he rocks. Colonoscopy every 5 years and he's doing fine. If he can do it I can pull this off with ur help!
Keep the focus. Let's live!!
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I think after I'm done crying I'm going to "Rock the Head"! Thanx Footballnut!
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Thanks so much ladies. Linda I love thinking about what you said about crying letting out toxins …….that is a good purpose for it!!
Merg I did the same thing when my hair was coming out.
mmtagirl I am the same way with the mirror. It still shocks me everytime I see myself. This is hard but we can do this, we are ok…..needed those reminders today girls.
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We're on the same schedule Linda. My second infusion is May l9, but of Taxol and Carboplatin.
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I also look in the mirror and don't completely recognize myself these days. I prefer to think of it as Warrior Janet
The cisplatin my MO gave me Friday better be working because it knocked me on my butt yesterday! I had to go home from work at lunch and take one of my heavy duty narcotic painkillers because the Tylenol just wasn't cutting it. I feel better today but yeesh! At least I will know for the next time I get it on 5/30. This week and next week I'm just getting my usual weekly dose of Taxol.
Fight on my fellow warriors!
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Blood test today and all was normal on the RBC and WBC end - feeling pretty good - am at work and will try to stay around for awhile today and get some things done. Hope you all have a great SE free day.
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merg - rock the head!! Love it
I have to share in a effort to keeping humour alive - I hope that I don't offend any - this is all in humour
Last night I went to my hubby and put my head against his and said " gives a whole new meaning to giving head huh?" We both had a good laff
I look at myself in the mirror and say - hey there's more pepper in the salt and pepper than I thought. Maybe I won't colour it when it grows back
Plus I can now put on a shirt and change it without ruining my hairstyle!!!!!
Woo hoo!!!!!!!
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Good one, Footballnut. Laughter is always a good thing.
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Yes, I do love not having to spend 20-30 minutes fussing with my hair in the morning!!
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Hi ladies, I'm new here, but will admit that I've been stalking this thread for a few weeks. I was going to start chemo in April, but they pushed it to May so I never joined in. I have to say what keeps me coming back is the great advice, positive attitude and overall sisterhood that you all have. I love it.
I'm about to start chemo, they are shooting for next Tuesday, but it may turn out to be Thursday because I don't have my Port appt yet. I just got off the phone with my MO, and starting balling as soon as I hung up. I'm a strong person, and have been dealing with this very well (as I'm told from DH), but the more real this step gets in the process, the more scared I get. The tumor board discussed my case to determine the best Chemo regimen - TC/4 rounds - 12 weeks or AC-T/8 rounds - 16 weeks. She's leaning toward AC-T because of my lymph node involvement, but they said both are suitable for me and my cancer. They are just leaning toward more chemo for me. They don't have proof that either one will give me a less chance of recurrence, and at this point I have to forge ahead with one or the other. I need to get this started or I will go insane. I'm very scared (of course), but I'm more scared because I know my body. I'm extremely prone to nausea and when I had Lyme Disease with Meningitis my body reacted violently. The Dr's said that I didn't have a high amount of Lyme according to the test, but my body went ballistic. I was hospitalized for 10 days. I spoke in great length about this with my MO and voiced my concern with nausea and asked that she please treat me like the most nauseous patient she ever had from the get go. Don't wait to throw the real stuff at me - LOL.
A few of you have mentioned the fact that it becomes even more real with the changes that take place - hair loss, etc. I can totally relate, and can see that happening. I haven't told my whole family and did not announce it on Facebook. I want to keep this private, but soon I will be a walking neon sign. Not sure how I feel about that yet.
I wish you all relaxing days with no SE's - and thank you for all the advice that you've shared with each other. It's become a fantastic place for us newbies to "stalk" and become more comfortable with this next step.
-dd
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Hello! It's been a few days since I've been on the website, so I'm not sure what everyone's up to or if this question I want to ask has already been addressed. I'll catch up soon. But for now, I have a quick question about getting fitted for a wig at a local wig place. My hair started falling out yesterday (12 days after TC infusion), so I want to go get fitted for a wig soon. My question is this: Are we supposed to give a tip (gratuity) to the person who helps us select and fit the wig? And if so, what % range is the norm? Thanks in advance y'all!
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welcome ddkath! Sorry that we have to meet this way. If it's don't consolation in my neck of the woods it seems that more women are being diagnosed with bc and that after this they get treatment and move on
Easier said than done at times but there are no warranties or recalls for us do we forge ahead!!
I was very open about sharing my cancer diagnosis . For me I found it very helpful. 2 of my colleagues had cancer - one with a very similar diagnosis to me and both are 5+ year survivors and moved on along time ago
I shared on Facebook and reconnected with people that haven't spoken with in 39+ years ! The women on this buses have also been so helpful!
For me I Aldo find that getting involved by volunteering and participating in support groups help. It just reinforces that we are not alone and that cancer has a face !
So far I am thankful that my SEs have been very manageable. I had nausea and a bit of vomiting the day if infusion and a few wired days after that followed by mild stomach cramping but after day 8 I was rocking
I have been trying to walk atleast. 5 miles a day as many have told me that walking and fresh air help to minimize SEs I wish u the very best with ur treatment.
Mommyq I live in Ontario canada and did not tip the person that fitted me or who shaved me. To be honest I never even thought to do this
:-(
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Mommyq: I did not tip this person. I got a real hair wig and felt that the amount I spent was more than I should have, and honestly, I didn't even think about it. I don't think it would be expected given the state of mind most of us are in when we are there. I live in Michigan.
DDKath70: Adding on to what Footballnut said above, I think the feelings you mention are felt by all of us at one time or another. I recommend taking it day by day. Some are better than others, for sure. This group has helped me a ton. I really feel so less alone by hearing about everyone's experiences.
I didn't share my diagnosis with the broader friends and family group, until the night before my first surgery, which was a couple months in. I didn't want to burden anyone or get the stupid questions. But I finally shared that night and it actually encouraged many of my friends and family to get checkups which they wouldn't have done otherwise, I think. And people have been remarkably encouraging, for the most part. So I'm glad I shared. I don't share a ton on Facebook, but when I do I keep it light. I'm sure most cannot understand like this group can. I am also journaling, which I plan to launch in a blog some day (my background is as a copywriter so it feels like the right thing to do).
Here's one of my posts, if you need a chuckle:
Here are the top 10 benefits of a hair free lifestyle:
10. People confuse me for Sinead O'Connor from back in the day
9. My 7 y/o thinks I look like a pirate with the cap-scarf
8. Getting-ready time slashed to about 15 minutes from start to finish
7. More space on the bathroom counter
6. Save big on hair cuts and color
5. No more styling dilemmas
4. Temporarily save the environment from all those products' plastic tubes and bottles
3. Rain, it just doesn't matter
2. Wind, see above
1. Get to freak out staring strangers by simply removing the hatBest of luck to you and everyone!!!
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Hi everyone, here I am too... My story is so similar to many of you. And if crying is letting out toxins then I should be healed! I was misdiagnosed by my gyn who insisted with "110% confidence" that my painful lump was not cancer, just a result of turning 40. After the tests revealed otherwise, I went for a second, then a third, opinion. It was cancer. My surgeon felt that I'd only need radiation following the lumpectomy, but 2/3 lymph nodes tested positive so I've been struggling with the idea of chemo for over a month now. I'm supposed to start by June 4th & I AM TERRIFIED.
My darling boyfriend tells me how cute I'll look in a pompom hat or redhead wig (I have long blonde hair) but I struggle with every aspect of the chemo, not just the hair loss - although I admit I am vain & having a horrible time with that...
I understand sometimes there just are no good options, but I cannot wrap my head around this. I haven't worked since my operation due to severe lymphatic webbing & I can see I'm sinking into a depression over this. I can't stop feeling sorry for myself.
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Thank you, I appreciate you taking the time to read my story and pass on your advice. I'm definitely taking it one day at a time, and even though I've been through two surgeries and so much bad news, I still feel like it's been the easy part of this nightmare. The hardest part is ahead of me, and that alone is scary.
The biggest reason that I'm not sharing on FB is because I was laid off in February (boy, do I sound like a barrel of laughs or what? I'm not used to having so many problems - but such is life I guess) and have been doing freelance work for a few people that I'm friends with on FB. I don't want my diagnosis or the fact that I'm doing Chemo deter them from sending me any more work. I'm extremely thankful for having the opportunity to work from home and make my own hours through this, but I do need to work and can't take any chances of it getting cut.
jhodro: I love your list, and am thinking about how much I am going to save over the next few months on cuts/color. I've racking up quite a bill each month.
I went out this weekend and bought a bunch of scarves and ordered a few beanie's online. I also ordered one wig, but we'll see what happens with that. I live in Arizona, and quite honestly, I think it will be way too hot for the wig. I like to have it if I need it.
I still have a few tests CT, bone scan, Port, EKG to get through before starting, and my Dr wanted to see what the EKG showed before making the final decision on AC-T, but it sounds like that's where I'm headed. My MIL is flying in on Friday and will be staying with us to help, and so my DH doesn't have to take so many days off. He didn't want to leave me home alone after treatments, just in case. He works all over, a different place every day.
I was wondering if you all wouldn't mind sharing some of the products (creams, mouthwash, etc.), medications (nausea, headaches, etc.) or home remedies that have been your saving grace through this so far. That would be so helpful. I know that there is a large list on a thread that the moderators put together, but would love to hear from you as well.
Thanks again!
dd
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babygoose: so sorry you are going through all of this. None of it is easy. I initially also had been told only surgery then radiation, but like so many others, another path unfolded. I can tell you that I handled the idea of surgery and radiation ok, but somehow the chemo is so much more disturbing. Maybe it's because it makes the entire situation outwardly visible. And the hair thing is not about being vain. Not at all. Don't be too hard on yourself about that. I mean I had three surgeries and never really lost it until i had to wig shop, then sobbed. Those poor women at the wig shop LOL!! Luckily they have seen it all. Maybe that's the day it all hit home for me, and I was a few months in. And the idea of chemo, at least for me, was way worse than the actual doing chemo. I have had minor-ish side effects (weekly Taxol), and it's different for everyone, but for me at least it hasn't been as bad as I'd imagined.
Hang in there. This is a phase you just have to get through to get to the good stuff on the other side.
Best wishes!!!!
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ddkath70: i totally understand the freelance dilemma!! I am in advertising, so I have taken time off so I can avoid going to the client site for as long as possible. I also used to freelance (for about 8 years) and was doing that when I had my son, so I didn't tell any of my clients about it at all, and continued to work. Luckily I had a few projects from home and could work on them throughout my pregnancy, delivery and recovery. You'll just need to adjust your working time to account for treatments - you'll have good days and bad and you'll know fairly early on how that will go. Do you have any freelance partners that you could reach out to for backup if you need it? You could do it fairly seamlessly so the client wouldn't even have to know. I'm not sure what business you're in, I am was a copywriter/marketer, but I totally feel for you.
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Ddkath and babygoose - I know no one wants to join this club, but you will find many helpful and supportive folks here (both in this thread and on the whole forum).
Ddkath - I hear you about wigs and heat. We lived in AZ for a few years (Cave Creek). I don't care how dry the heat is, +100 degrees sounds hot to be wearing a rug on my head. Same for Florida, where we are right now.
As for stuff that helps with the chemo SE, there is a lot of info in the Info Thread, but you don't need everything. Some life savers for me have been
- Biotene Tooth Paste and Mouthwash plus kids soft tooth brush
- salt and baking soda mouth rinse to supplement the Biotene mouthwash
- Prilosec or other OTC antacid (check with your oncologist or nurses)
- disposable bottom wipes with aloe
- sennecot and colace in case you get constipated
This stuff, along with the meds given by the doctor, have made life bearable so far.
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Welcome to newbies here - none of this is easy. Yes, you will cry or scream or have a pity party - but then you will move on because you have to.
Hair loss - I am loving how quickly I can shower and get ready in the morning :-) The wig looks better than my real hair and it doesn't have bad hair days :-)
Am at (or is it in?) nadir right now. Had my "off week" blood work done and just heard from my MO office - WBC are 1,400. They were 500 2 weeks ago today when I ended up in the hospital. Neutraphils are 600 - they were 100 2 weeks ago. Got the usual warnings. What are everyone's WBC and ANC when in nadir? I had 20% dose reduction last week so hoping that works and hoping Neulasta kicks in more sooner than later.
I felt extremely fatigued yesterday, and had a temp in mid 99's. But feel better today with normal temps, no shaking, no chills.
Was hoping to not have such low counts again - but now will be just happy to stay out of the hospital this time.
A little down that I will basically have no life for the next 3 months while I finish up this chemo. I have 2 more treatments of A/C then 8 weekly treatments of Taxol/Herceptin. Maybe there isn't as much of a nadir with Taxol? I haven't taken a look at the weekly Taxol thread yet ....
Feeling bored which I am taking as a good sign - better than feeling sick I suppose!
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finished day 2 at work with the wig. The wig looks better than my natural hair did, so people who know I'm in chemo can guess it's a wig. I'm hoping everyone else will believe I got my hair colored, conditioned, and styled. Or else they're too polite to say, "hey, are you wearing a wig?" Getting headaches by the end of the day so I'll adjust the tightness.
Round 2 is tomorrow and I still have a pretty full head of buzz cut fuzz. But it's falling out every night. The good thing is my leg hair isn't growing back! No more waxing I hope!
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jhodro great list! I have a few more to add if I may
- no static or flyaway hair to worry about
- I can change my pull over tops as often as I want and not worry about messing up my hair!! Lol
You know I was very anxious about losing my hair. I cried and got very depressed. Now I love it. I appreciate my face more. When I was a little girl my grandmother would always tell me to get the hair out of my eyes. It only took 50 years!!
Lol
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Ddkath and babygoose - welcome to the club that none of us wanted to join but we are ever so grateful to have found this forum. People here are great and there are lots of ladies around to jump in and help that have been on the forum for many years and stay around to help us newbies find out way.
Things that I have found very useful so far- biotine mouthwash, toothpaste and gel. I like the gel cause I can carry it around with me and if my mouth starts feeling dry I use it. Disposable wipes for the bathroom and portable ones to carry with you. Lip Balm - my lips were dry - I got an all natural beeswax one at the health food store. I had very bad constipation after round one for 5 days - so stool softner and miralax are a must for me. Un-scented hand and body lotion - my hands got really dry. i also have b6, b12 and Lglutimane to hopefully help with neuropathy. I had neuropathy in my hands and feet the first 5 days after my first treatment and this scares me more than anything else- you need to talk to your MO before you take these and make sure it is ok with them. I also iced my hands and feet for the taxotere part of my treatment to hopefully help with the nail and neuropathy. I also sucked on ice during my infusion to help with mouth sores.
Makelemonade - I have had my last blood test before my 2nd treatment today (other than the one that will be that morning) and all my counts were good. They were good the week after treatment too. I am pretty sure I hit nadir - at least RBC nadir last friday = as if felt like the life was sucked out of me - I ate spinach and beets and meat and peanut butter lol and stayed in all weekend and all was good today.
Head is itchy today and am seeing more hairs tonight - think I may have hubby buzz me either tonight or in the am.
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OK, I just caught up. Sorry for the slow responses. Hope all the Moms had a good Mother's Day!
linda505: Thanks for the tip on drinking stuff other than water. I switched to apple juice, lemonade, and Vitamin water, and the variety and taste make is much easier to stay hydrated!
ColdInCanada: Thanks for clarifying what you mean by exercise. I feel much better now. Oh, and the snails said "Hi!."
Oh, and I spoke too soon regarding the eye twitching. My left eye started twitching a bit about 3 days ago. Now my right eye just started today. DOH!LovebeingNana: Thanks for the tip on changing nausea meds to prevent headaches. I'll have to mention that to my MO next week at my next infusion. And hang in there. Chemo is tough but we're tougher and we'll get through it! One day at a time.
Jaimieh: Hi! You said you lost my eyebrows on TC last time about 6 weeks after all your chemo was over. How many infusions of TC did you have? I'm just trying to prepare for when mine will fall out. I'm to have 4 to 6 infusions, depending on how my body handles them.
Golfingirl: I too experienced dizziness everyday until about 8 days after my infusion. About 6 days after the infusion, I noticed that my heartbeat was rapid. I took my pulse and found that I had a resting heart rate between 100 - 120 bpm. I talked to my MO and she wasn't sure what the cause was, but we both agreed that maybe it was anemia causing it. 11 days after the infusion, it dropped just below 100 and it's been hovering there for the past 3 days. She told me to monitor it and go to the ER if it went above 120 AND I had any chest pain or shortness of breath.
Timbuktu: Day 14 is the last day of nadir for the C part of your TC (Nadir is days 5-7 for T, days 10-14 for C), so that may be why you're tired. I think rest is probably better than pushing it if you feel tired. It's like your body is saying, "Hey, take a rest and heal!"
mikishelly: Glad to hear you made it through your WBC scare! Whew!
Ddkath70 & babygoose: Welcome. You've found a great group of ladies here that are all very supportive and helpful. Together, we will get through this.
Ddkath70: As far as level of sharing, it's a personal preference. I chose to share with family, closer friends, and co-workers, but not with my Facebook group. It's just what you're comfortable with. But all the people I've shared with have been greatly supportive, so it might help to share with some people. I understand why you don't want to share with your FB network...makes sense. Sorry to hear you just got laid-off. Hang in there. You'll get through this. BTW, I have the port, and had the CT and bone scan recently, so let me know if you have any questions about those. Also, I'm on TC. My MO said the A part of the A-CT is rougher on the heart so she didn't recommend it for me, since I'm young and my heart will have to keep me going for a long time. That's great your MIL will be flying in to help. My MIL also came in for 2 wks and it was great. She cooked and cleaned and got the kids to school, so my husband could continue to work. Regarding products, I had to buy unscented body butter (Body Shop Aloe) and soap (Dove) because any scents made me nauseated. Biotene mouthwash is nice because it's minty/refreshing for when your tongue feels and tastes weird. Baking soda/salt/water mix (1/2 tsp baking soda, 1/2 tsp salt, 4 oz water) seemed to keep the mouth sores from occurring. Flushable moist wipes help with any irritated skin after bowel movements.
Footballnut & jhodro: Thanks for letting me know about the tipping not being required. I am just the worst at knowing when I'm supposed to tip or not! I think I'm going to go tomorrow to get fitted.
Have a good evening ladies!
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Well...day 14 and like clockwork, my hair is starting to fall out. I need to stop pulling at it although I'm mildly intrigued by the handfuls coming out. I have 2 wigs, 1 I hate and the other I'm very iffy about. I have another coming in next week so hopefully my hair holds out until then. I'm having a hard time finding wigs similar to my hair cut. I'm not sure I'm brave enough to go to work with just a scarf. How long did it take everyone before the hair loss starts is noticeable? I have very thick hair but its cut to a very short assymetrical pixie/bob.
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Makelemonade: I'm doing the weekly Taxol and Herceptin now. I was lucky I didn't have to do the TC or AC. I definitely had SEs, but I feel they are more fatigue and then annoying things, like acne, a messed up cycle, C that quickly turns to D (but it's not horrible, just enough to be, like I said, annoying. And as far as counts - I've maintained my numbers from week to week. I haven't had anything drop to far out of the 'normal' range. So no neulasta for me, so far.
I get treatments Tues and that day is out - exhausted. Wed, could be out, depending on my sleep Tues night from the steroid. I don't take the extra steroids at home before or after, and then the rest of the week, I'm very tired. I also have some aversion to certain foods, but I'm not a huge food lover to begin with. Have the dry mouth, water retention, etc. I also have some pretty persistent heart burn, but it's remedied with over the counter Pepcid. Finally, have lots of runny nose issues, that ended up giving me fluid in my ear - which is a typical issue for me, so I'm taking Claritin D to keep that under control.
I just finished my 5th treatment. I'm 3 on, then on the 4th week H only. I just did the second treatment of the second round this morning. The H only week (the week I lost my hair), I felt mostly myself.
Hopefully this helps you!
Chknfeet: Sorry to say, but I had a ton of hair, although I had cut it shorter into a JLawrence pixie/bob, and mine was noticeably patchy on day 3 after it really started coming out, plus it was a huge mess. I had it buzzed on a Thursday and my work had an event with Sheryl Sandberg from Facebook for 750 people the next day and I wasn't prepared for the hair loss (had been told by MO it might not come out on weekly treatment), so I hadn't gotten a wig. Only had cap/scarfs that tie in the back but have elastic, but had found some cute/comfy ones. I rocked that scarf at a 750 people event, and didn't feel bad about it in the least, and got lots of compliments - someone even said I was radiant. Haha! By the time you get to that point to buzz, you'll be more ready for it. Hope this is helpful. I know I tend to go on.
Have a great evening, all!!
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footballnut: Love your adds! I'm sure there are many more too! Same here about the hair-loss-depression. I totally freaked out on wig shopping day! Now I've even gone outside by accident bald, because I still have some scalp issues and being free is helping it. And step out with the dog or whatever, and realize, Ooops, I forgot a hat or my wig. But, I've gotten used to it, and am not stressing about it any more!
Stay strong all, until you can't, then lean on these great people!!
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bald chicks rock!!
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Still a bit left. The hair stylist said I should color the rest. But use ammonia free color.I didn't know I could do that. Anyone else color their short hair?
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If I could I'd upvote you, Footballnut!
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Very cute, merg ! I thought about coloring the short stuff, but never got around to it. Go for it, if you have the energy.
Adding another to the great list of benefits for the hair free look:
- being able to say hello to your Dad (and Brother) when you look in the mirror
The resemblance, especially to my brother, was not so evident before. Now, it's rather amazing.
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another great thing about bring bald
I can ride in a convertible without my hair smacking me in the face!!
So does anyone have a convertible?? Lol
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Jhodro - Totally helpful. If all you ladies can do it, so can I. I was prepared for it, and cut my hair 1 week before chemo started. Just been having a tough time finding the right wig. I've decided I'm just going to have fun with this. Found this little gem for less than $7. Will be a fun weekend wig!
http://www.amazon.com/Cospiayland-layered-heat-res...
Football - You are awesome and made me smile :-)
Merg - I was considering dying my very dark, almost black hair a platinum blond or bright red for fun but have now run out of time. I say go for it!
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sharonde: I can totally relate to that one. I so much look like my brother. He's one year older and has shaved his head for years! Thanks!
Footballnut: No convertible, but I find myself opening the sunroof a little more when I'm in a hat and then taking the hat off. Love the hair on my bald, itchy, acne-ridden head!!
Chknfeet: Love the purple! I thought about going out of the ordinary with my wig, but I went with hair like my original hair. Probably should have taken the opportunity to step out of the norm! You'll do great!!
Merg: Had an appointment for a color, but didn't make it to that point. If you have time, I'd definitely go for it!!
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love the purple wig! I want to get something funky too. So far I haven't worn my wig. It has sat on the stand that came with it since I got it last Thursday
Jhodro too funny! I've noticed all sorts of bumps popping up on my head. Once the hair falls out I think I'm going to dress goth and see how people react. Black lipstick eyeliner and a bald head !! Lol
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I thought I would treat myself to a cheeseburger this evening before tomorrow's chemo session makes my taste buds wonky, and then swing by the market. But some asshole decided to steal my wallet. So instead of buying food, I was on the phone with the bank, credit card companies, etc. Just when I think I can do this cancer thing, all these stupid little life things (ok, getting my wallet stolen isn't so little) keep adding up to screw with me. So much for warrior mode; it's mopey time. Pity party for one!
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Football, you're right. Bald girls do rock! I love it.
I'm not sure if it has been the same for other ladies here, but when the hair starts to go, it really goes fast. I'm on AC, and my hair started to go on day17. Within three days, my buzz cut was mostly gone. At day 22, today, I just have a bit left.
I'm doing the scarf hat thing. Wigs would just be too hot in the Texas heat. I got some cute things and watched a lot of you tube videos on scarf tying. It's different than I thought in order to get them secure. I found a great product that I now love and want to share. Have y'all heard of buffs? They are tubes of light weight, seamless fabric that can be worn as head covers. I ordered from Amazon, and they came today. There are different ways to tie and tuck them. Again I learned on you tube. So far, they are much cooler than anything I have tried so far.
Makelemonade, my nadir numbers match yours, 1400 wbc and 100 neutraphils. I'm not getting nuelasta this time around, since my AC is every three weeks my counts should be able to recover on their own before the next infusion.
Ddkath and Babygoose, welcome. Things that I use include the biotene toothpaste and mouth wash, salt water a baking soda rinse (1tsp each to 2 quarts of water), soft toothbrush, tea tree oil soap, I eat unsalted saltines when nauseous, . I try to walk everyday. Also, I suck on popsicles during the adriamyacin part of the infusion. My MO said sucking on something cold will help prevent mouth sores, so far so good.
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Hey EverForward, I believe that whoever stole your wallet will get what they deserve. What goes around comes around.
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Thanks for the info mommyQ. I wound up taking a 4 hour nap today. You are so right, I feel terrific now. We have to LISTEN to our bodies! I had no idea the fatigue would hit so hard and so late.
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EverForward -what a pain that someone would still your wallet. I do hope karma gets them back.
I mentioned it before, but man, I have been soooo tired in Week3. Napped all day today. Am actually looking forward to steroids tomorrow, since that is pre-chemo day. To top it off, I saw my radiation oncologist yesterday, and he quizzed me on why i was doing chemo at all... Didn't really need that.
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Hi all,
Haven't been on here for about a week...looks like I missed a lot! Welcome to all you new gals. Sorry you have to join us.
Everforward - a pox on the creep who stole your wallet!
Football nut - thanks so much for your support! I would love to have you come ride one of my horses!
Nana - I hope you start feeling better soon.
Everyone else - there is no way I can go back and read all that I missed. My eyes are giving me too much trouble and my brain is not far behind.
Tomorrow is my third round of A/C. Ugh. I am having such a hard time. If my DH wasn't here to take me-I'm afraid I would find an excuse not to go. I dread it more than I can say. I'm also still a little shocked whenever I pass by a mirror. I have light, fine, baby-like hair all over my head. It is just so weird. I find myself wearing a ball cap most of the time. But I was brave enough to go to church on Sunday and wore a cute hat. Everyone was so kind to me. Still having trouble with phlebitis in my arm. Gotta ask my MO if that will ever clear up. I'm beginning to think I will be left with more ailments than I ever could have imagined because of this stupid BC. Sorry for the rant, just feel like unloading tonight.
Wishing you all an SE free week. Hugs, lilyrose
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Lilyrose- hugs! I just had my 3rd AC last Wednesday and I felt the same. But today I felt better than I have since Round 1, so there is hope! And knowing that I only have one AC left is wonderful. If you skip you still have to go later!! I too have trouble with my arm (PICC line DVT) and hate the constant reminder. Hope you start to feel better soon! And I will probably need the same pep-talk next week!
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Happy Tuesday Beautiful Warriors!
I have been reading but not responding this past week. Because a).I've been hanging with my family, trying to be a little bit normal during my "good week", b). but it's been a challenge because the NAUSEA still hovers, and c). I.AM.SO.TIRED.
On the upside, I still have my eyebrows and eyelashes (even though they have thinned a little), I don't have to shave my legs OR my armpits, and I've been getting LOADS of hat compliments.
mmtagirl: Your awkward moments list CRACKED ME UP. And also, totally accurate. I feel like an aged version of myself. And my MEMORY, GEEZ. The other day I walked into the DEN to get SOMETHING, forgot what it was I needed, walked back out, and then realized that what I needed was in the LAUNDRY ROOM, not the den. DOH!
jhodro: Your Hair-Free Benefits are AWESOME.
I *love* #1 - freaking out staring strangers. My husband suggested that I scare misbehaving children by whipping off my hat and asking if they've ever read Roald Dahl's book The Witches. Ddkath70 & babygoose: Welcome. So sorry we didn't get to meet at a coffee shop or on a beach in Hawaii, but you'll find lots and lots of support and advice from the lovely folks on these boards.
Ddkath70: I hear you about the nausea. I am VERY prone to it as well - on boats, on planes, in the car, during pregnancy (I puked through two entire pregnancies - from start to finish - and that's the story of why I only have two children), when I eat certain foods, and sometimes just because my body decides it's going to be nauseous. It was the only thing about chemo that made me cry - I burst into tears in my MO's office during the consult when he was going over side effects. He was very reassuring; they have lots and lots of meds and different combinations of meds they can try, he said. I've done 2 rounds of THC, and we still haven't found exactly the right stuff - there's no vomiting, but I'm more nauseated than I'd like. I have my day-before-chemo appointment on Thursday and I'm telling him to pull out the BIG STUFF now. The thing to remember is that everyone responds to chemo differently, so once your team knows how you're going to react, they can tailor your meds accordingly. And you might be one of the lucky ladies that doesn't have any nausea. It does happen (and I would SO envy you).
MommyQ: Those BLOODY snails! They're MOCKING me. I bet they're the same ones that challenged me to a race and then LAUGHED at me when I had to decline. I'll show them when Chemo is over. Can you say escargot?
Blueberry4: YES! Buffs! Although I had no idea what they were called. My Mother-In-Law bought me one, and it turns out it is my FAVORITE thing to wear. It's light, it doesn't slip off or sideways, it's super comfortable, and it's totally cute.
Footballnut: I love the Goth idea. *grins* I was thinking about getting a spiky pink-haired wig, sticking on some temporary tattoos, and adding a couple of fake piercings in my nose and eyebrow. We moved into our current neighbourhood 3 years ago, and discovered it's very snooty (we SO do not fit in here) - I'm kinda thinking I would REALLY enjoy seeing the neighbours' reactions to my new "look".
Everforward: I am SO MAD on your behalf at the person who stole your wallet. What an awful thing to happen! *stomps foot and makes an ugly face*
Ladies, I am EXHAUSTED this round! Phew! And to top it off, chemo is doing a number on my mastectomy scar. It started stretching after the port went in (there's only so much skin to go around, you know?), and the chemo has made it worse. It's been dry and a little flaky, and my BS kind of blew me off, saying it was normal. Then, on Sunday, a little area on the scar under my arm split, so now there's an open sore there. It was bleeding and oozing a little, so I called my BS on Monday and he BLEW ME OFF AGAIN. Seriously. He said to "do nothing" and to "expect things to continue like this for awhile." Awesome. Thankfully, I can show it to my MO on Thursday, so if there's an issue or a risk of infection, he can deal with it. Meanwhile, I think my BS may be fired.
ANYWAY, I am going to sleep now. Again. Because I swear that's all I want to do lately. Thank goodness for coffee - even if it does have a slightly charred flavour now (thank you chemo!). That's what Mocha Coffee Creamer is for, right?
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Footballnut - I have a convertible!!! Maybe will will still be hairless enough in December to enjoy it LOL. But I do NOT allow Saints garb in my car so leave the jersey at home LOL.
Everforward - may the fleas of a thousand camels rest in the armpits of the jerk that took your wallet.
Started losing hair last night - not chunks but many strands - think it is buzz time tonight - will post a pic when done.
Developed the Taxotere eye twitch. i feel like Inspector Dreyfus in "the return of the pink panther" when Clouseaus was driving him insane LOL.
Looking forward to a good week before next treatment and hoping for minimal SE effects for all when we have them - and many free days!!
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Oh, you guys! Its just so helpful to read through your posts this a.m., even with the disasters like Everforward's. I totally relate to having something like that happen, getting a wallet stolen, and having it feel like TOO MUCH. There just isn't any slack in my psyche right now. I tanked yesterday, both physically and psychologically, after only two short trips to town. I drove myself, and both involved positive interactions, but proved to be more than i could handle. Whaaa!! My DH has been away since last Fri., and i enjoyed being on my own for a few days. Until yesterday! Thank God my wonderful niece is arriving today to provide moral and physical support. I have my 6th tx today, and am starting to have zinging pain in nails once in awhile, as well as more big D instead of the big C. Yuck. And I have to figure out the headwear thing, as the thin patches are showing more and more on my head. Double whaaa! Its one thing to suffer, but its a horse of a different color to be suffering AND going bald. Outrageous, I say. You guys all get medals for showing up, sharing, caring and commiserating! Huge hugs to all, Mame
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it's Wednesday! The ny rangers advance to the next round in the hockey playoffs and my head itches and it's raining and I have a headache!! Lol
I also thought if another great thing about being bald - I can lie down anytime I want and not have to be concerned about messing up the hairstyle!! Lol
The wallet theft just sucks! Love the curse linda! Ok I'll sacrifice my saints garb to ride in your convertible. I'll just wear my PEYTON manning jersey!! Lol
My buzzed hair is still hanging around at day 15. We are planning to go on a short getaway to Ottawa tomorrow night until Monday so what better place to lose hair then at our nations capital and in a hotel? Lol
My MO confirmed that I can swim so swim I shall! Can't wait. Some people are surprised that I have permission to swim given the risk of infection but I was told that I'm good to go
:-)
I know that it's hard to forget about the cancer crap and treatment. Yesterday I started reading stats again and told my DH that we have to be prepared for me being gone in a couple of years. He looked at me like I was crazy
Then I told myself to shut up. Stop reading. AGAIN!! With or without cancer we never know what tomorrow will bring. So I have told myself to move on. Live life. If I have a SE deal with it. Focus on me and playing guitar meeting new people and my new life
As I am fortunate enough to not have to work right now I do have a new life. I tell myself that I am in retirement rehearsal. Yesterday when I went for my walk I saw a cardinal and a chipmunk. I would never have noticed this before. I have time for friends and to do stuff that I want to do because I am no longer working 14 hour days.
We all go through ups and downs - the roller coaster ride of life whether it's because of cancer or something else. For me it's all of you that make the downs easier to deal with and the ups all that much more fun and enjoyable
So let's keep going up!!
Have a great day all !!!!
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Football - are you a closet NY Sports Fan???
We are big NY Giants fans in this family! And hubby is a Rangers fan (I don't follow hockey). So, yes! Wear your #10 when you cruise in Linda's convertible, lol! Also, I love your comment about retirement rehearsal. I saw someone on another thread say, "I have to remind myself that I'm just visiting "old". Your comment reminded me of that. Both true and good to remember. This is all temporary. Took the day off from work. The only way to describe it is to say I need to recharge my batteries. Started feeling a little nausea and a lot of fatigue yesterday, which is unusual two weeks post-chemo for me. But then again, what do I know? I've only had 2 infusions. I'm also nursing some serious blisters from Saturday's hike, which prevent me from even wearing a regular shoe. Good thing the weather warmed up here in NY the past couple of days, so I could wear flip flops to work.
Happy Hump Day fellow warriors! Have a great day!
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MommyQ- I did 6 rounds of TCH.Round 2 of DD AC was Monday for me and I still feel drunk. My mouth isn't as dry this time but I still feel shaky when I walk. I was right my Red Blood Cell's are already low after the first treatment. The good news is my lymph node on my neck is going down because my shingles are starting to go away
My kids and hubby shaved my hair yesterday and I shaved my hubby's hair. I am not thrilled with my hair but it was better than a little falling out at a time. I was at my child's lacrosse game and lose pieces kept getting in my mouth. Then I realized that I was loosing it all over the place. So bye, bye hair see ya soon. 
Yesterday I got a million things done and today I feel stuck. My neulasta shot was supposed to be mailed to me so I have to wait around until 3pm today to see if it comes.
Not happy about being stuck in the house but I need to get this shot. I still feel like I need to eat non stop and that the first week after treatment I look like my face is all swollen. Coldincanada~ What are they giving your for the nasueau ??? It took my doctor 5 years ago until treatment number 5 to give me emend and it made the world of difference.
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Hi all. I've been reading and not posting. Much help! Thank you! I started April 1st with Taxol for 12 weeks, then FEC for 4 treatments after that. Doesn't seem like that's a typical regimen, but I appear to have a more advanced stage than most of you. Lost my hair by week 5. My head isn't as nicely shaped as yours Jaimieh, so wigs and scarfs are my only option. Plus, my kids giggle too much when they see me bald…5 year olds do that!
Best to you all and thanks for all the good pointers.
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Ever forward , merg, and jaimeih - beautiful, just beautiful!!!
And welcome to all the new ladies to our group!!! This thread has been so helpful and encouraging!!! Xoxo
I feel like round 2 SE were alittle tougher, but overall I feel like I handled them better because I knew more of what to expect? Im gearing up for round 3 next wk. My hair is all gone now, shiny ole' scalp now. It still is tingly and sensitive though!!! So far, eyebrows and lashes are hanging on though!!!!
I reas everyone's posts and I feel so connected to you gals!!!!!
And I will say, I miss my hair tons, but, am loving that it takes me 5 mins to get showered and ready now! Total silver lining!!
Is anyome else scared to use mascara? Im scared to put anything om my lashes in case it "loosens" them up
am I being silly? Hugs to all!!
Jen
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Hey Jen - did you avoid the mouth sores for round two?
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Linda - ugh , no
unfortunately I did develop some, but not nearly as many as round 1!!! So in my opinion, the constant biotene and baking soda rinses, and some ice chips during infusion #2 definitely helped!!!! I thought I was im the clear, but right at day 10 a few popped up. Boooo they are such a pain in the @$#&*. -
Jaimieh - I started off taking Zofran the day of Chemo and then Maxeran for the days following. When that wasn't enough, for Round 2, I took Zofran the day of chemo, and then Zantac for 5 days following, with Maxeran for any "break-through nausea". I might as well have been taking Tic-Tacs for all the good it did me. The nausea set in late afternoon on the day following chemo and hung in there until Day 5 or 6, let up for about a week, and then settled in again (albeit a milder form). Plus, I really, REALLY don't like the Maxeran - it makes my whole face twitch (add this to the eye twitching caused by the Taxotere and OY!), and makes me feel...funny. I'll ask about the Emend.
Isn't it amazing how many drugs we now know the names of and uses for and side effects of? -feels SMART.
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longisland - I was actually referring to the one any only PEYTON manning of the broncos although I do have an Eli banning jersey - why I don't know lol. I love the ny Yankees and rangers so that's a few ny teams!! I have close tues to ny because I have cousins there and my kind sister used to live there. I just love ny! So I hope that you don't mind if I wear PEYTON mannings jersey instead of Ellis in Linda's car!! Lol
Jamieh love the picture! Awesome!!
:-)
We all rock!!
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cold in canada tell him or her you want to try Emmend. It honestly doesn't even compare to Zofran. Last time I serpent the entire time after round 4 sick to my stomach. Then they gave me Emmend and I joined the living again. This time I have Emmend without asking and they give me whatever I ask for.
Thanks for all the picture love. I forgot how cold being this close to bald is.
So my neulasta never made it here and I am pissed. I needed this shot here today to make sure I stay on track and some how someone screwed it up. Grrrrrr. Never thought I would fight for a white blood cell booster.
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Hi All! I'm just wondering is anyone feeling that their side effects are becoming more cummulative? This is supposed to be my good week, but I feel weaker every day and I am having muscle pain gradually getting worse each day. No fever and my bone pain is finally gone. I just am feeling like I am doing less and less and feeling worse and worse. My third round of TC is next Tuesday. I should be feeling good and it seems like most of you are getting along pretty well.
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footballnut - you can wear Peyton's jersey in my car - inside out though
Sorry jamieh - I would be very upset too
Mikishelly - I have only had one so I can't comment on that but I have heard that some SE's are cumulative and I have also heard that some had different reactions to each dose - I guess it is just a bit of a guessing game for us on what to expect. I am hoping to have a similar experience next time as this time but just not sure what will happen.
Jen - ask you MO about Mugard for your mouth - they may have a sample they can give you for the next cycle. My insurance will not cover it but they gave me a sample bottle and I am gonna try to make it last as long as possible. I iced my mouth the entire infusion of taxotere - at about 16 ounces of ice chips LOL
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ha ha Linda!!!!
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Wow, girls, busy couple of days! Go warrior women!
Jamieh, love, love, love the picture of you and DH:-)
Today has been the best day since round 2...yippee!!....at day 10
PS. I am secretly hiding in my office at work with a cut off pantyhose on my head and my hair on my desk in between meetings. tee hee
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mmtagirl. Too funny!!
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that one made me laugh, mmtagirl.
Great pic, Jamieh!
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Football, we love Peyton as much as Eli! Sorry to hear you're a Yankees fan though, lol. Our Mets are giving them quite a fight so far during this subway series!
Yes, my SEs were somewhat worse & definitely lasted longer with round 2. I go for round 3 on Tuesday. Please anyone who has been through round 3, let me know if it's cumulative on top of round two... I'm dreading it already. Although I do have a new weapon to combat the nausea. My doctor prescribed me decadron to take days 1-5, coupled with the Zofran. Not thrilled about taking a steroid, but hopefully only 5 days won't mess with me too much. Anyone with insight or experience with decadron please share.
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longisland good to hear that you like PEYTON!! Lol. He didn't do so well in the Super Bowl and were in NYC at ghost time! Met a lot of Seahawks fans. Good times!!
As for the METS - My Entire Team Sucks right? Gotta love sports!!! Lol. Yup love the Yankees! Hard to see Derek jeter retire! Time flies !
Today I'm starting to feel congested and my tummy is a bit sore. Can you get SEs towards the end of an infusion? It's day 15 for me. Not sure if this is my allergies acting up. Hopefully I feel better tomorrow
I am starting to lose hair "down there" as my mom says. Can't believe it!!
Oh well!!
Back to sports!! Lol
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Hey all - I am Buzzed and found a 2nd head under my hair LOL
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nice!!!!!
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Cute, Linda - love the smile.
Footballnut - from my limited experience, SEs can continue to pop up in the last week. I had some tummy issues, more fatigue, and minor rash on my hands.
Longisland - try to take the decadron early in the evening, since it can keep you awake. I find it gives me heartburn, but OTC Prilosec takes care of it. It also makes my achy ( and admittedly older) joints feel better. I had minimal nausea. Obviously, people can react differently to any of these meds.
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Longisland: I started Decadron, one day before, day of and day after, plus as a med just before the infusion. I didn't sleep at all. So my MO cut out all but the meds right before the infusion. I still don't sleep the night after my infusion, even with ambien. I'm going to call tomorrow and see about a stronger sleep med or stopping the steroid. But, I seem to be very sensitive to steroids and have taken them for a sinus infection in the past and had a bad reaction. It's also causing raging acne that I really don't know what to do about either. The MO suggestion of cortisone has not helped at all. The acne is crazy on my head as well, which makes wearing anything on my head, especially a wig, very uncomfortable. Hopefully after sleep tonight I will be in a much better space about this.
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Hi Ladies! I went to the LGFB at my hospital today. It was 2 hours and IMO totally worth the time. I met some lovely ladies going through the same thing at various stages of treatment and as a bonus got some pretty good makeup. My bag included an IT cosmetics eyebrow pencil (my fav of the bag), Clarins sunscreen, 2 OPI nail polishes, an Estee Lauder foundation, EL lipstick, EL eyeliner, Elizabeth Arden powder, EA lipliner, facial lotion, makeup remover, and other stuff that I'm too lazy to dig out. Everyone had something different but every bag had mostly mid to high end makeup. Some bags had Kiehl products, Lancome, Chanel lip gloss, ..... Not too shabby, especially since its free! Anyway, hope this is helpful for anyone on the fence about going.
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way to go, Linda!
Longisland, we will battle round 3 together on Tuesday. I have been on the decadron, zofran, emend and added Tigran for nauseau. Worked well for round 2.
Good luck!
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Mmtagirl, I envy your office with a door. I work in a teeny tiny cubicle farm and would love to be able to take off my wig for a few minutes every day. Got a break yesterday for my second infusion when I wore a cute chemo beanie. It's not widely known at work that I have cancer so I'm wearing a wig there, especially since I will be bidding on my next overseas assignment this summer and I'd rather not be thought of as Cancer Girl while I'm interviewing.
I'm sorry to hear many of you are experiencing new or worse SEs for your second or third rounds. That's not what my MO told me would happen. I had a pretty manageable first round and will try to get ahead of the digestive issues this round. Fingers crossed for everyone!
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good morning!
Hope all are well! Quick question as I need help making a decision
Hubby and I were going to take a trip to Ottawa for a short getaway before my next infusion. It's not too far. 4 hour trip. Yesterday I felt chilled all day and tired. This morning I woke up slightly tired.
This isn't necessarily SEs - it could very likely be allergies or weather related. It's been damp and blah here the past few days
So I've been back and forth on if we should go because I told my DH that I would hate to go and end up in bed all day
Thoughts? Usually when I waffle with decisions - which is rare. - I do what makes sense rather than what I would like to do
What makes sense is to stay home and save the $ until after treatment.
It's a long weekend in Ontario and DH was going to take tomorrow off to make it a bit longer
Arrrrgh
Have a great no SE day everyone!!!!!!
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Footballnut, you have had amazing stamina and energy the past few weeks with all your exercise and walking. Trust your intuition on this decision. It will be correct. My MO keeps telling me to live my life. Play outside, go watch my daughters soccer games, work, be around people. He wants us to agree on any trips that take me on an airplane, out of the country, etc.
if you don't think you will have fun, stay home. Otherwise, I have no doubt you can manage those SEs and have a great get away. I hear ya on allergies or whatever, I have been taking Claritin all week and not for the Nuelesta shot. I think pollens are high for the northern half of the northern hemisphere right now.
Good luck and hang in there!
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tx mmtagirl! Part of me really wants to go! Feel okay so far. I notice that this week I have been waking up closer to my " normal" time which is 6 am.
After infusion I was getting up anywhere between 8-9
Seems that I am slowly returning to "normal" - must be time for another infusion!!
Lol
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Footballnut, Maybe you could go with the idea that if it's too bad then come home? Or cut the trip in half?
Linda, Beautiful!
mmtagirl & Longisland, I'm going for round 2 on Tuesday also. Thinking of you while I'm there.
Bad night . I woke up with horrible awful reflux. Yuck.
Quick question, Does your hair or head hurt in certain spots? Thanx Ya'll.
Have an easy day today.
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merg
My scalp doesn't exactly hurt but itches at times like now. Lol. I still have a buzzed scalp and if I rub the hair in the opposite direction that it's growing in it can feel uncomfortable but not hurt. I have Aldo continues to develop pimples around my scalp - this is where it itches most. If I make the mistake if scratching the pimples swell and eventually start to become painful
I have found that a cold compress really helps
Before I buzzed my hair the sensations were much worse
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miki- having same experience- 3rd round hit me after 2 good rounds. Dreading 4th AC. We just have to get through it. Will ask MO to tweak Meds. Hang in there. Sandra
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My scalp is painful. Hair is slowly falling out on this, the l7th day after the first TC infusion.
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Linda - I will definitely ask about that!! I do have a script for something called magic mouthwash - its lidocaine and I can swish it around every 4 hrs. It numb and is great, but lasts for about 20 mins. bummer!
The other thing they suggested was a mix of children's benadryl (tsp) and maylox (1tsp) as a rinse too. I didn't find much relief with that one though.
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So I am feeling like crud today....yay...NOT but I figured at least putting this picture up will at least bring a smile to my face. I may have enjoyed shaving his hair off a bit too much. lol
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Jamieh - LOVE THE PICTURE!! You both rock!!
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LOL - great pic, J. My husband said I could shave his head - I said I will photoshop him bald.
In the chair, waiting to start TC # 2. Did not sleep a wink last night. Thx Dex.
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SharonDe and Jhodro - thanks so much for the Decadron feedback. I'll give it a whirl on Tuesday and see what happens... oh joy.
Speaking of joy - I just got my period. WTH? Thank god for these boards or we'd all be messed up if we depended solely on what doctors tell us! I've seen more than a few of us getting their periods - I think we need to set our MOs straight and tell them to stop telling women it will cease... geez. The positive side is that might be what I was feeling the other day with mild nausea and fatigue as opposed to a second bout of SEs. So I'm going to go with that... That's my story and I'm stickin' to it, lol
Jamieh - sorry you're feeling crappy, but your picture is definitely lifting spirits on this board. Thank you. You and hubby are beautiful!
Football - I say go for it with the trip. Even if you have mild SEs (which I don't think you will), the trip will distract you! You can always come home early, right?
Mmtagirl - yes, you and me together Tuesday! I'll keep you in my thoughts and we will get through.
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Longisland & mmtagirl: me too on Tuesday - that'll mark my half way point! Yay!! And, good luck with the Decadron, although it doesn't like me, I don't think that is very common! And I agree with you Longisland, the cycle thing has got to be better discussed, I too was told my non-stop thing has nothing to do with Taxol. I have never had this issue before. It kind of comes and goes weekly. Another thing to add to the list to discuss at next week's visit.
Footballnut: I hope you get to go on your trip. I think the distraction would be worth it. Hopefully you'll feel up to it!
Jaimieh: fantastic picture!!
Merg: my head doesn't hurt, more itchy really. But way better since I buzzed the hair.
Hope you all get a SE free couple of days into the weekend!!
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sharonDe I'm with u in the chair!!!
Longisland when I got my period it spotted off and on for a few days then stopped. I hope that we have parted the best of friends !! Lol
I think that DH and I will go. Who knows how I will be after round 2 and it will be too hot to walk around
Just finished 40 min on the treadmill. Approx 3 miles. Too crappy to walk outside
Going to breast cancer support group this aft. Mtg # 2 at wellspring.
Go rangers!!!!!
:-)
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Forgot to include my pic - as I am waiting to get stuck for the IV. Yay they got it first try this time.
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Sharon Yay for first try getting the IV in.
I think the taste in my mouth is making today so horrible
. I am trying everything to get it out but nothing is working. I can still eat but it comes right back once I am finished food. So I shaved my head and I still have hair....I wonder how long it's gonna take until it's all gone ??
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Sharon, hope this infusion surprises you with how easy it is. Sending good vibes your way!
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Jamieh...your photo made my day
If you weren't feeling well, you'd never know it...you are radiating joy!For those getting their periods: I did round three last week (I go every two weeks), and for each of my three rounds I've have heavy bleeding. It tapers off right before my infusion, then starts again (heavy) a day or so after each infusion. I think it's strange. I almost feel the chemo drugs are triggering the bleeding. I had issues for fibroids last year, and I actually think the problem never went away, even after my gyn removed them via d&c. Chemo SE's are bad enough, but to be wearing a pad nearly every single day since my first infusion is really wearing me down
I've had a good two days, with only minor SE's so I was able to see the dentist for a cleaning. Due to our move to OK last year, I hadn't been to the dentist in almost a year...felt so good! Rx fluoride to make sure my teeth stay healthy during chemo. Ladies, don't forget to keep your smile beautiful
Have a wonderful day, Ladies!
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My hair started falling out exactly 2 weeks after infusion 1 and I got a buzz cut the following Saturday (which was last weekend). The hair ("drapes" and "carpet") have been coming out mucho this week. At least the long hair was easier to get out of the shower drain. These short hairs are a mess!
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Thanks, Timbuctu - I had a really easy infusion day today. No issues at all, not even a headache so far. I also scored a prescription for Ativan so will take it tonight to see if it helps,with sleeping.
Here's one of several wigs my stepdaughters sent from California - decided to model this most elegant one during today's infusion:
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Good going!
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sharonDe love the wig! I am so jealous!!!!
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Sharon!! love it!!
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Oh Sharon! I LOVE it!
Thanks so much for making me smile today! I have a neon pink wig coming in the mail soon (it was $7 - I couldn't resist!). Remember that show Jem and the Holograms? When my wig arrives, that could be US. Jaimie - Love the photo - how fun!
Well, I met with my MO today and we changed my anti-nausea meds AGAIN. Since the Zofran seems to be keeping the nausea at bay on Chemo day, he added it to the 3 or 4 days following chemo as well. Plus Stemetil for any break-through nausea. Here's hoping that the THIRD time is the CHARM! And, yes, he confirmed that the fatigue is cumulative, so I can expect to continue sleeping through the first week post-infusion. Oh, and the eye twitching is ALL TAXOTERE'S FAULT. The other day my children were hollering at each other (they were in different rooms, not mad at each other), and I was all: "HEY! You kids knock it off! You're stressing me out. Look at my eye twitching!" The got a huge laugh out of it. I aim to please.
Tomorrow is Round 3 - the HALF-WAY point. Phew! I can't say I'm EXCITED, but am looking forward to saying "Half-way done!", complete with some serious happy-dancing.
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Love the pictures ladies!
I went to LGFB today. It was better than I expected but I had low expectations
Got a wide range of makeup (and a lot of MAC which I do wear) learned how to draw on my makeup eyebrows and lashes. Best part was meeting people, even one my age with small kids who was also looking to connect. I think she will be my 'Nordie's at noon' friend. So I am glad I went. Really wanted to pump my mascara wand -
Longisland- I totally got my P too (shortly after round 2) and was so disappointed! and it was heavier and more days than my normal cycle! Not cool!! But happy its over and maybe now it'll cease?!
Sharon - good luck girl!!
Jaimieh - ugh the metal taste is aweful
I got it after both round 1 & 2 so I guess I can count on it for all 6 rounds the only silver lining for me was that it lasted only about 2 or 3 days. Hope it goes away soon for you! ps - love the pic!!!!!Football - your commitment to working out is awesome! I have to get on board with you girl! I feel accomplished when I emoty the dishwasher lol!!
Clarrn - so happy you had a great experience at LGFB!!! Im still on the fence?!?!
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Hi all,
Well I'm the day after round three and feeling ok. Wondering if I'm going to jinx myself by saying that out loud. Lol. My MO added Prilosec to my ever increasing list of meds. However, so far today heartburn hasn't reared it's ugly head, so I'm keeping my fingers crossed. I asked about my phlebitis. He said it might clear up or it could always remain a problem. But for now, my arm is not aching. The veins are just swollen and hard. I guess I can live with that. I am receiving Emend in my infusion and it seems to be working great also.
Clarrn - thanks for the pep talk! I was SO not wanting to go to chemo but am relieved its over. I did get the dreaded headache a few hours after my infusion, but so far that is the worst of it. I keep telling myself I only have ONE more to go! I'm hoping the Taxol will be easier on me like my MO tells me. Good luck to you on your next treatment!
Wishing all of you a wonderful SE free week!
Hugs to all, lilyrose
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Sharon - you rock the blue wig! Love it!
Hugs, lilyrose
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Sharon love the blue wig.
So tonight was my daughters concert for chorus and I wasn't going to miss it. So I talked to the principle last week about an easy out seat. A seat close to the front near the door and he said no problem. Well I asked him for the seat and he told me it wasn't me who asked. I a lost had to show him that I was wearing a hair piece under my hat. Luckily he just gave it to me. So I apparently do not look like the typical chemo patient.
. Go me! Is any one else going to be on weekly taxol after AC???
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You look great - You will definetly rock the bald look -
I love the blue wig0 You rock Ms. Lady
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Jaimieh,
Yes I have one more A/C infusion then going onto 12 weeks of Taxol. My MO says he thinks it will be much easier to tolerate. I hope he's right!
Hugs, lilyrose
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Good morning all,
LOVE LOVE LOVE all the pics!!!
I went in for my 4th treatment yesterday (just my weekly low dose of Taxol, no cisplatin, thank god!). I was a little worried about my blood work because the cisplatin pretty much laid me out for most of Sunday and all day Monday, I was not able to eat very much. My chemo nurse looked up my blood work when i arrived yesterday and said "Your labs look GREAT! Whatever you're doing as far as your eating habits, keep doing it, it's working." I wanted to share a couple of my tips with the rest of you. I get my treatment on Thursday, so Friday, Saturday and Sunday I immediately start taking my anti-nausea med alternating every few hours with Tylenol, that seems to keep my SEs from hitting too hard over the weekend. I drink copious amounts of coconut water, and I also drink my protein shakes on those days. I got the recipe from someone here but for the life of me I can't remember who or which board,so my apologies to the OP! I changed it a little to accommodate my preference for Trader Joe's products. I pour a cup of TJs Unsweetened Vanilla Almond milk, 2 scoops of TJ's chcolate whey protein powder fortified with 21 vitamins, a few frozen strawberries and a small handful of High Fiber cereal, in my ninja single serve blender cup. It tastes like a chocolate milkshake and I'm getting the calcium my bones needs, protein and vitamins, and a dose of fiber to keep from getting "backed up" by the meds! Monday through Thursday I switch to my fruit smoothie. I use about a half cup of TJs 100% orange juice, a banana, some TJs frozen pineapple tidbits, and fresh spinach and kale leaves in my single serve cup blender. It's delicious and full of replenishing vitamins and minerals. Beyond this, I just try to make healthy eating decisions--whole grain toast with natural PB or some oatmeal or egg whites with spinach and mushrooms for breakfast,a salad or soup for lunch, and stir fried veggies (in coconut oil or flavored olive oil) with brown rice and fish for dinner most nights.
Everyone is different, of course,and these are just some suggestions based on the chemo nurses' assessment that whatever I'm doing is working, my body is bouncing back week after week and I haven't lost or gained a significant amount of weight yet.
Fight on my fellow warriors and enjoy the weekend!
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Thanks for the suggestions Janet - will try the first one - the 2nd has too much sugar from the fruits for me due to diabetes.
Here is me with my free wig that I got from the ACS
FOOBS check
Wig check
Ready for the day Check
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Love the pic, Jaimieh! And the blue wig, And the ACS wig. I need to see about my ACS wig. It's too small.
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Good morning, post TC #2. Glad y'all got a chuckle out of the blue wig - the costume wigs were a fun gift from the girls
Linda - that wig looks great. Can't believe it was a free one.
I had a good night, only concerning SE was redness and tingling in feet and palms. I don't need the whole hand & foot issue to blow up. Lightly moisturized and went to bed, drinking lots of water. Much better today. I also read that hot water exacerbates, so perhaps no hot soaks in the tub for now.
A 1mg dose of lorazepam (Ativan), and managed a full night's sleep. What a difference!
Sending good thoughts to all for manageable SEs.
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good morning all!
Ure all doing great! Sh and I decided not to travel this time around. We will wait until treatments are done but he took the day off today anyhow. We will go visit my mom and chill around the city. Play tourists!!
My head was driving me NUTS - the itchy scalp woke me up so I put a cold compress and then went back to bed. More pimples showing up. Guess the hair will be gone soon
Have a great day all
:-)
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Morning ladies!!!
Ugh, today I noticed my eyelashes on my right eye are thinning. Looks like maybe 1/3 on the bottom are gone. Waaaaa :-(
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Linda, your ACS wig looks fantastic on you!
Feeling a little achey and sore today (2 days post 2nd infusion), but not too bad so far. Bald spots on my buzzed head make me look sicker than I feel.
I hope everyone is managing their SEs better as we move forward.
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Linda you look awesome
. Sunshine boo on the eyelashes. They will be back.
Lily rose my mo keeps saying the same thing but I am leery. They will also be adding herceptin and perjeta to the first, fourth, eight and 12th. So I am getting nervous. I don't handle change well.
My hair is still hanging around slowly falling out. I have tried on or bought a new wig yet. I am lazy about it and I guess I have a bit of denial still going on.
I realized that this treatment is going to be 15 days apart because of Memorial Day. So I get an extra day followed by a short treatment going into number 4.
Okay off to try and be productive today.
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jaimieh-
Herceptin and Perjeta won't make much of a difference. This is my second time with Herceptin and I've never had issues. The only problems I've seen reported with Perjeta is rash the first treatment (which I had) and a little diarreah. I just had my 2nd round with it and so far no rash. I think you will do great!
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Sunshine - You may want to look into Latisse. My PS stated he's had good luck with chemo patients retaining lashes and brows. I also found a study supporting its use:
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Janet P, I love your regimen and try to follow very similar regimen myself. I admit though, that the week following treatment is a "wing it" week and I'll allow myself to eat whatever feels good. In addition to green smoothies and salads, etc. I also supplement with a vitamin/mineral supplement (Called Women's One that I get at Whole Foods), b12, b6 and D. After my 2nd infusion my nurse was also excited about my "Great" counts. -
I too will move on to weekly Taxol post AC. Also heard it is easier so fingers crossed!
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Linda - great wig!
Jaimieh - I am taking Herceptin now, and one week out of each month I have it by itself, and I felt really good that week. I will continue on Herceptin for a year after I finish chemo in late July.
Clarrn - I'm doing weekly taxol, 3 weeks on, 1 week off for 4 rounds. I have found this second round to have more SE's, but by far not horrible. I'm more cranky and uncomfortable, I'd say. My numbers have remained pretty steady, so I haven't had to have Neulasta or anything.
I finally got out to walk today, I hadn't exercised since Tuesday's infusion, mainly because the weather has not cooperated. I feel soooo much better when I'm able to get outside. It was cool but I was still able to get in 2.5 miles. I've lost most of stubble on my head, it's now very thin. On the bright side, 5 weeks since waxing and no need to do that again any time soon!
Happy SE free Friday & weekend to all!!
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Hello Ladies! I am loving all the photos here! We are SO gorgeous, you know?
Here I am just finishing off Round 3! This means just THREE more rounds. Woo! Hoo!
Sunshine - Notice how my eyes look all squinty? That's because MY lower eyelashes are thinning too. Also my upper lashes and my eyebrows.
I have never worn make-up, but I think I may start with a little eyebrow pencil and some liner, just so my eyes don't disappear entirely! That's a look I'm pretty sure I can't pull off. Ever.For what it's worth, Ladies, regarding the whole antioxidant thing, my oncologist firmly told me NOT to go there. He said it can interfere with the chemo treatments, as can adding a bunch of vitamins. He said to eat WELL, and eat HEALTHY, but eat NORMALLY. Anyway, I'm not putting on my Smarty Pants or anything, just sharing. Take it or leave it.
We have a long weekend here in Calgary, and it's relatively sunny, so I took a 2km walk with the family, and now I am heading to the back deck to enjoy the sunshine on my face...through layers and layers of sunscreen and big floppy hat.
Have a wonderful weekend!
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Great picture ColdinCanada! I hope it's warming up there for you, finally! Enjoy your weekend!!
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Cold I love that picture of you and you have such a great infectious smile!!! I wanna be your friend
Love that scarf too - such nice long tails on it!
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Cold - you are stylin' in Chemo Land.
(My Dad was from Calgary - I think you make some funny, generous, hearty folks up there in Cold Country)
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Cold ... you are rockin' the scarf!!!
Sharon ... love the blue wig, good for you!
Linda ... that free ACS wig looks fabulous on you!
I have been feeling like a weak dishrag the last few days, but today woke up almost with energy, or what passes for having energy nowadays :-) so the counts must be shooting up again. The fatigue on round 2 is more than round 1 and I was also told that it is cumulative, so expect to be even more tired for round 3 next week. Looks like my chemo week is my "good" week, then the following Monday afternoon to about Friday I have no energy due to low counts.
Didn't even sign on to the board the last few days ... sometimes I just don't want to think about cancer, you know? I had several phone calls, texts and emails this week from my mom, friends and people that just want to see how I am doing and mean well, but it just puts all of the focus on being a cancer patient! And I am more than that!!
Someone asked about weekly Taxol ... I will be getting weekly Taxol along with Herceptin for 8 weeks and then Herceptin every 3 weeks to finish out a year. Haven't really looked into SE of Taxol yet. Other than numbness I think I have had everything else and have been able to deal with it. Don't even know if I will be getting Neulasta with the Taxol ... one step at a time, need to get the last two A/C treatments done first :-)
Hair loss ... my stubble is falling out - really wish it would just all fall out already! All underarm hair is gone. But I still have to shave my legs!! Every time I think there is going to be a silver lining to all of this, wham, not for me! Have to shave my legs and had my period last week :-) Still have my eyelashes and eyebrows. And even though it thinned out a bit, still have most of all hair "down there" TMI, but if I was to go swimming I would have to do a bikini shave right now! What about hair on arms ... does that go? Or that is another "depends" side effect :-)
Wishing everyone few SE and have a great weekend!
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ColdinCanada - You look great. Your smile is dazzling.
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Hope everyone is enjoying a SE free weekend :-)
Cold - you rock a scarf like no other!!! Xoxo
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Hi All,
Just wanted to share a tip that might help with the metallic taste/smell. My first and second infusion of AC my nurse gave me a cup of ice chips to chew on during my chemo drugs. I never had the metallic issue until my third infusion, when both the nurse and I forgot about the ice. Might be a coincidence, but the metallic smell and taste had me severely nauseated for several days sans ice chips. I'm not going to forget next time
Hope you're all enjoying the beautiful weekend. Love all your photos!
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Cold - so good to see you with your beautiful smile.
So good to hear all of you. I don't know if you are supposed to or not supposed to but
I absolutely could not stand it another minute so I had my husband clean shave my head this morning. I am so relieved!!!!! It was itching and hurting and driving me crazy. My friend who just finished chemo did the same through her treatment so she suggested it today. The red bumps are already gone and it feels much better!!!!
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Cold, I love your picture! You look beautiful in a scarf! Just to revisit the antioxidant/vitamin issue, I have to add that I was already supplementing and juicing prior to my diagnosis. I researched (as well as informing my MO) about the vitamins and it was all good. The only interesting thing against vitamins that I turned up was that supplementing with vitamin C is not recommended because just as C protects healthy cells, it's thought that it might also protect the cancer cells from the chemo.
I am living it up this weekend before going for round three on Tuesday. Also, because of my foot injuries from my hike I haven't been able to get any exercise. Getting fat for sure, but oh well! As long as I can lose it before my daughter's wedding in October that's all I care about.
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Agree with all the comments, cold! You inspired me to go out in public with a long scarf today in confidence! You young gals are so amazing .
Swissmiss, I had the metallic taste with round 1 when it was TC. I have to admit round 2 was much easier on the taste buds. Food didn't taste as good but not nearly as bad and no metallic taste and I didn't do ice chips with either. Who knows? Much better appetite with AC. Almost too much....
Long Island, I am living it up as well before Tuesday for round 3. I drank red wine tonight. Omg! Living on the edge .....
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Longisland and mmtagirl - we will be sitting together on Tuesday - but me only for round two. I am doing the same - living it up this weekend lol - had lunch at the beach yesterday and actually drank a beer LOL - haven't had a drink since I found the first lump in January. It is nice to have some SE free days to enjoy life but it really kind of makes me dread next week even more - oh well it will pass right?
LovebeingNana - you rock that look!!!
Makelemonade - thought my leg hair was done growing and noticed yesterday that I had growth on them again - ughhh - took away my silver lining LOL.
Anyone that is having the night sweats and waking up drenched - or it you develope them from either the chemo or hormone theraphy if you gotta have it - I want to pass on this hint that specialk gave me - wicking PJ's. I just bought some wicking danskins at walmart - about 12 bucks for a top and short - what a difference - I don't wake up due to my sweats anyone as it keeps me dry and I don't get that freeze feel.
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Linda. Those night sweats are really starting for me. I'm a few days out from treatment #2 and it's a horrible side effect. Thanks for the wicking pj tip. I'm going to have to do that.
Great to hear so many having good weekends. May they continue!
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Kazzy - I had them really bad for about 3 days after my first treatment - I have been having them somewhat every night since I went into menopause and these wicking danskins have made a world of difference - try one set to see how they work for you. I bought two initially and went back yesterday and bought three more sets - I wear them as PJ's and also for my walks. Make sure you look at the tags - some are wicking and some are not - the wicking ones usually have a folded tag versus a single tag. Hope they help you like they helped me.
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LovebeingNana - smart move on your hair. The little buzzy bits are very annoying. I think the only thing you aren't supposed to do is cut your head when shaving it - looks like yours came out perfect.
So far doing well here after TC #2. Day 4, and visitors arrive for 3 days - they will actually be a help, walking the dogs, etc. I will probably lay low, as this seems to be my achy breaky time.
Wishing everyone a continued good weekend.
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love being nana - meant to say your pic is beautiful. You have the most incredible eyes! Lovely.
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Lounging Day ...
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Sharon's - So cute! Have an A-1 day.
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I was also told not to go overboard with antioxidants because they could adversely affect my chemo, and especially not to drink green tea. I was juicing and eating healthy prior to my diagnosis so I'm just trying to keep doing what I've been doing. The smoothies and protein shakes are to make sure my body gets the nutrients it needs, particularly on days when I'm not feeling well and don't eat enough. My chemo nurses tell me week after week that my labs "look great" and to keep doing what I'm doing! They seemed a little surprised that I bounced back so quickly from the cisplatin, which they said is much harsher than the Taxol, after I told them how it knocked me on my butt last Sunday and Monday and I barely ate on Monday. I was worried how that would affect my labs this week but they said my labs were "great, as usual."
I think we all need to find that place between following our doc's orders and getting our bodies the nutrients it needs during this very tough process Love you my fellow warriors! I hope we all have SE free weeks this week!
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Hey Linda, What is wicking? I've never heard of it. I'm been drenched every morning. You look beautiful, LovebeingNana.
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Yesterday was a crappy day. It felt like my entire skeletal and muscular systems were disintegrating. Today is better, but I was still feeling cranky and achey. I decided to force myself to get out of the apartment and enjoy the nice, spring day. Taking a cue from ColdinCanada, I wrapped a long scarf around my head and went out for lunch. Yay, me!
(Wow, my face and neck look puffy!)
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Everforward, you look beautiful and I'm glad you got out for a bit!!
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Everforward - you look great! No one sees puffiness except you!! Hope you're able to enjoy the rest of the day!
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Everforward. ...sunshine does us all a lot of good!!!
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Hi Ladies,
You all look wonderful!
For those of you doing Taxol or heading there soon:
My nurse navigator gave me these 2 tidbits of advise.
1. It can be hard on your nails but you can fight back. If you notice your nails getting red (generally starting with the thumbs and big toes) starting putting tea tree oil on them once a day to prevent any infection.
2. If you start getting any neuropathy start vitamin B-6. As soon as I started feeling any numbness in my fingers or toes I would go take one and then when it started to wear off I would take another one (100mg). It seemed like it took several days before I noticed it taking effect but then I just stayed on top of it after that. My neuropathy went away after chemo. Even if its slight, there is no need to suffer.
I know you are all saying 'oh, heck No!' to any more symptoms and I wish none of these for you but knowledge is power.
Soft hugs
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Hi Merg - wicking material takes the moisture off of you skin and pushes it to the outside of the material so the clothing next to your body stays dry and that moisture drys. Really helps me.
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Hi all
Getting ready for next week and infusion #2 these last few days I've felt chilled to my bones like I have a cold coming on but can't complain
Scalp still itches and my buzzed hair is really falling out. Soon to be a chromed dome!
Still walking although weather has sucked. Very cool here despite some sun!
Glad that we didn't go anywhere! Plenty of time for that once all of this is done
:-)
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Footballnut - My biggest fear about losing my hair is that my head is really misshapen and has lots of boney (I guess knobs would be how one would describe them. Still, two of my three boys have the same general shapes and they look pretty good. When will I get over being hypocritical of myself?!!
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beigadoon I know that ure beautiful hair or no hair!! I'm thankful that this is happening as we approach the summer months. I am glad that I cut my hair shorter gradually and then buzzed
:-)
Just hate seeing the hair falling out of other places!!
Lol
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Footballnut - No Brazilian waxes for us!
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lol
That's for sure!!!!
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no puff that I can see, Everforward! Rockin the scarf!
Great advice on the wicking garments, Linda.
Hope you all are having a lovely weekend with limited SEs.
As for the hair fall out. ... Pretty much all on my head is gone. Would be smooth if not for the acne that shows up periodically. Brazilian is definitely on its way
More disturbing for me than loss of hair on my head are the eyelashes. Woke up this morning to a section on my right eye missing. I love my lashes and I love mascara!
No chemo pause for me...quite the opposite. Therefore the upper lip and chin keep on keeping on. Dang!
But, I have not needed to shave legs or under arms. Silver lining Sunday!
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My hair hurts. It's coming out fast. "Chair Day 2" is Tuesday. I am not looking forward to it. I brought my wig back but they wouldn't take it at the ACS. It's too small. I have a big head. The lady is trying to get me an xl wig. All of hers were average. Kind of bummed today. That's all. Rest easy ya'll.
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Merg, several of us are in the chair Tuesday. We will be right beside you. Let's all log on and support each other..... We got this!
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Add me to Tuesday - A /C #3
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Me too! Tues will mark my half way: 6 out of 12 Taxol. Then I get a break week (H only). Looking forward to that!
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I am also in the chair on Tuesdays...my 4th round of AC tomorrow. Then I'm doing Taxol for four more rounds, every other Tuesday.
The hair loss has really thrown me...I would truly prefer to stay home and not deal with the wig or the scarf or the hat at all. But this last weekend I braved a day at a festival with the wig, and yesterday I hit the mall with my teenagers wearing just a cute hat. Honestly, I felt better in the hat, as I always feel like people "know" I'm wearing a wig anyways, so why pretend? I was always under the impression that my hair would start to grow back right after my last chemo infusion...but now I'm reading about women who are still wearing their wigs almost a year after?! I'm scared now. I just want my hair back
Despite the hair issues, it was a lovely weekend and I felt good physically. Hope you're all enjoying your Monday!
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Add me to the Tuesday chair - 2nd TCH - so not looking forward to it - had such a good 3rd week - felt close to normal and now gotta start it again. Oh well ...Just got home from my PS - got a 100 CC fill and no pain from that yet - so YAY!! Got my LGFG class this afternoon - we shall see how that is.
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had my 5th TAC last Monday...June 2 is my last chemo...there is a light at the end of this tunnel! Then radiation thru the summer...I spent 300.00 on a wig...wore it a few times...stubble was uncomfortable, so I just shaved my head smooth with a good electric razor. I love my caps and little scarves I tie around them...they were my moms so I feel she is with me all the time!! I also got lightweight bandanas for 1.00 at family dollar! Summer wear!! I never go out bald as it would be a shock to some! My wig lady was great with good tips: best one was for skin care...mix 1/2 avocado oil with 1/2 coconut oil ...helped my rashy skin a lot! I slather it on my face all day! Never had so many compliments on how good my skin looks! I think I have more time to pamper myself so even with the chemo, hair loss and such, I have looked pretty healthy!! I always have face makeup and eyebrow pencil in before I go out so that helps with confidence !
It seems like a lot of us entered the dx thinking lumpectomy/ radiation only....then surprise! Chemo! I learned so much through all of this but mostly that there are blessings through our storm and remaining positive every single day helps us get through it....Pinterest quotes helped me!! Lol...good luck and it will be over soon!!!
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Swiss miss...hey...seems like we are close in our treatments....I will start rads mid June....also had right lumpectomy and have decided to stay with it...no more surgeries...had 3/11 nodes ...about the hair...I have my last chemo June 2...I feel my stubble growing in already...I think the hair grows back pretty quickly...maybe the ladies who are still wearing the wigs just like it better than their old hair?? I always had short and will plan on a cute pixie anyway so it may be easier for me and the hair thing...I do get sad for people with long hair ...but I think it starts to grow back fast!? Rosie
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Hi Rosie!
Thank you for giving me a positive outlook on the hair regrowth...I like having something to look forward to
A year ago I had long, long hair, and throughout my diagnosis and treatment I kept cutting it shorter and shorter, so having short hair won't seem like a compromise in the least. I would have never pictured myself in a pixie, however...but I am very much looking forward to finding out how I'll look. Who knows, maybe I'll end up keeping it short And I like wearing bandanas at home...so much cooler and lightweight than most of the hats I have. Today I am determined to take some time to learn how to tie scarves via YouTube. I am so fortunate to have received a beautiful pink scarf as a gift, but in these Oklahoma winds, I better make sure it's securely on my head...wouldn't want to shock anyone at Walmart with my bald head. LOL!
After tomorrow marks my half-way point in my chemotherapy. I am hoping to move onto radiation in August. With luck and prayers and determination, next summer will be a lot more fun
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Hi ladies. What a great weekend it was, leading up to tomorrow's infusion. The weather was lovely and hubby and I took in a minor league baseball game (complete with a ballpark beer!) where my best friend's nephew plays. Very enjoyable! My toes are almost healed (from that brutal hike the weekend before) so I'm looking forward to walking again soon. Hopefully tomorrow before infusion.
Janet P - thank you for your comments on antioxidants and green tea. I've been drinking 2-3 cups a day and will speak with my MO tomorrow about whether I should stop or not. Since reading your comments I did a bit of research and came up with opposing viewpoints on it. That's why I'm so glad we have each other here - this is the greatest resource for info. Somehow between all our doctors put together, we can get the info we need, lol.
Linda & MMTA let's get in the huddle before tomorrow's infusion. "Easy, Peasy.. Easy Peasy, Easy Peasy!"
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swissmiss..with any luck i'll have my last chemo treatment on July 22, so I'll be with you at radiation in August. I haven't met with the RO since I started chemo, so I'll probably give them a call to make sure it's lined up. I have 6.5 weeks of daily (m-f) treatment. I'm looking forward to getting back to a normal schedule.
I also miss long hair! I got a longish wig so that I can wear it until my real hair grows back more, but honestly, I like the hats and the cap-scarves (with elastic in the back that you tie too) better. The wig is very itchy with my stubble. We'll see how much I wear the wig when I return to work. Happy Monday!!
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tomorrow I have my genetic consult, bloodwork and see my MO. I'm getting very anxious. Some days I am so positive but the past two nights I have cried once again convinced that I'll be gone in a few years
For me the thoughts of taking pills is awful. I hear good and bad about tamoxifen which I'll have to take for who knows how long
What really upsets me is not do much dying but how. I told my DH that regardless of when my time comes - 2-3-5-10-15-20+ years I just don't want to ever be a "head on a stick". We lost a good friend to a rare form of skin cancer last year and he got so sick towards the end. It's thoughts like that that I have to push from my mind
One never knows what will get us or when but having cancer makes me think the worst if I allow it to creep into my mind
And now it seems to be everywhere even when I don't think about it. We watched a rerun of criminal minds and one of the criminals had breast cancer. There she sat bald as she was told to do the right thing despite being stage 4 and not having much time left. I nearly lost it
Then I pick myself up and say f@ck this just live!!!!
Hope the bloodwork doesn't hurt tomorrow. They'll go through the port. The first time they did as well but the needle was put in during the procedure so I was sedated at the time. I bought the emla cream so I might use it
:-)
Sorry if I brought anyone down. I'll try to pick my spirits up by focusing on the hockey game tonight. Go rangers!!
:-)
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Sending good thoughts to everyone for tomorrow - looks like a large part of our April Group will be in treatment on Tuesday.
Footballnut - hugs to you. Never worry about expressing your feelings here - if not here, where? Hope the testing tomorrow goes okay for you.
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Footballnut- I think that one of the best things about this website is that we can come here and say what is on our mind without having to censor it for prime time play. I try to stay positive with my children, grands and friends but every so often we all need to expose our innermost fears or physical/mental state. You picked the right place. I guarantee there are readers who identify with your feelings.
I hope to have many more good years but I have plans for when the end comes because it gives me peace. I don't want a funeral, memorial service or obituary (too expensive). I want my body to go to Medcure but I too worry about being a stick as they won't take anyone under 85 lbs.I believe that we will be posting for years to come. I have worried about a ton of things in my life and 99.0% of them haven't happened. Guess there is a lesson in that. Maybe I will learn it someday.
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Footballnut -Cancer sucks!! Chemo sucks!!! You are allowed to have down days you are allowed to cry and you are most definitely allowed to vent and here is a great place to do all three and you will never bring us down - we are here to support the hard times and cheer the good times. We are super heros and even they have bad days!! Blood work through my port didn't hurt at all and I don't have emla - they sprayed it with some freezy stuff.
Had my LGFB class today and it was very nice - got some nice makeup and meet 7 women going through this - the youngest was 48 and the oldest was 77 - she sat next to me and we had a blast together - I am 57. She has treatment tomorrow at 1030 - so I will be there when she comes in. It will be her third treatment and she is doing great and she hardly had a wrinkle on her face and the biggest bluest eyes I ever saw.
Huddling saying "easy peasy" LOL
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Best wishes to everyone having treatment tomorrow. My #2 is Wednesday. :S This past week was nice and SE-free, with the exception of losing most of my hair between Day 13 and today (Day 20). I still have a tiny bit of hair left, but not much. Last Thursday, I went to a local wig shop and got a new wig. Fortunately, my insurance should be covering the cost of the wig 100% since I've already reached my max out-of-pocket on medical payments!
linda505: I also had a fill this morning and went to LGFB this afternoon. I only went with 60cc though because the 100cc last time was too uncomfortable. The LGFB went well. There were 5 of us and we each got a gift bag of good makeup! A professional cosmetologist went over how to apply each makeup item in the bag as we each applied the makeup to ourselves, and then went over scarf tying and other options to wigs. Very organized and well executed. I attached a photo of the gift bag and the stuff in it. There was makeup from Lancome, Estee Lauder, Elizabeth Arden, Mary Kay, OPI, Smashbox, Kiehl, Cover Girl, Biore, Olay, it Cosmetics, and NYC. It looked like they ordered the gift bags from the ACS, who collected and assembled the makeup, which were donations from the big cosmetic companies.
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I had TC #2 today. Everthing seemed to be going well. I had a room with a bed and bathroom so I fell asleep for awhile. That was the best. The bad thing, I could not make it to the bathroom in time and peed all over the place! I sure hope that SE leaves!
Then, when I was all done and ready to leave, the nurse told me that my tumor markers went up.
Just from 30 to 50 so they want a ct scan before chemo # 3. I thought most drs don't even pay attention to tumor markers because they are do unreliable. But she really wanted a CT scan from the start so i'm going along with it. Anyone here have tumor markers go up
during chemo?
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Looks just like mine MommyQ - my makeup collection was very nice and we had someone teach us too. Funny part - I haven't lost any of my eyebrows yet and since I know they are going to go I haven't plucked nor waxed them in the last month and they are very bushy. So I didn't participate in the fill in the eyebrow part and when they were done one of the volunteers came over to me and said "Oh honey you have over down the eyebrows" and proceeded to try to rub them off - I was like STOP those are real LOL. It was so funny.
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hey there ladies! You guys rock..I'm serious. Every time I feel like it's all just too overwhelming, I come here and learn that I'm not alone.
Looks like a lot of you are in the chair tomorrow...good vibes coming your way {{{{{{{{{{{}}}}}}}}}}}}!!!!!!! It also looks like a lot of you are marking your halfway point. That must feel great!!!!
Thanks for the advice (a few pages back.lol). We all seem to have a lot in common. ColdinCanada, please let me know which nausea meds they switched you to if you can. I think I will be in the chair for round 1 on Tuesday so I'm partying this weekend. Well, as much as possible considering I'm having another surgery on Friday to put my "power" port in. No, joke that's the name of it. Lol. I told them to just knock me out, and my surgeon actually said it before I could. He said, "you have been poked, prodded and through enough. Let's make you comfortable and unaware of any pain or discomfort". I said, AMEN!!!!!
So, I had an echocardiogram today, met with the vascular surgeon and went to a chemo class where I had a small breakdown. The nausea just really scares the shit out of me. Excuse my mouth, I'm originally from NJ, I curse like a sailor. Wednesday is bone scan, genetic consult and cat scan, Thursday is a follow up with my MO where I will find out more details. It's all so scary and really feels like I'm talking about someone else's life.
I'm forging forward, gaining strength from my support team and you great ladies!!
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MommyQ my bag looked very similar from look good feel good today. I had a great time. I may even be able to draw an acceptable eyebrow. Had my onc appt and they just went over the SE's that I am having. Still have the darn heartburn no matter what. I rocked the bald at my appt today and I was chuckling at the OMG you look great bald comments. I appreciate them because it means that I am not looking like crap yet but I kinda like having hair. It keeps my head warm. Lol.
I wish #3 was tomorrow so I could get it done. I have treatment next Tuesday which is also our anniversary.
Speaking of anniversary's Sunday marked my last chemo 5 years ago which made me really sad that I am back in the chair. I know it could be worse and I got over it quickly but I was still super sad about it.
So number queen checking in 21 days to go until last AC infusion.
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Ddkath- welcome to I cuss like a sailor club. Lol. I erase a LOT. Lol.
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Ddkath70 & Jaimieh...I'm right there with you, can curse like a sailor and Pres of the No Nausea club!!! I just had my 1st infusion, I got Aloxi, decadron, Pepcid and Benadryl before Taxotere. To go home...I get Zofran and Ativan. I also have really bad GERD, so I also take Nexiumm twice a day!!!
Ok, WTH with the acne??? Any suggestions? This SUCKS!!!! Acne on top of losing my hair is insult to injury!!!
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Lakegirl, how are the nausea meds holding up? Hope they are working like a charm!
MommyQ, I believe you said in an earlier post that you just recently had a bone scan and CT scan. My itinerary says that I have to show up 2.5 hours early for an injection???? What is that about? I didn't ask my MO yet. I was going to do that tomorrow. Just wondering if you had that as well.
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lakegirl1 I too am having bad acne. Not sure what that's all about. Considering hiw much water I've been drinking I thought my skin would be good. I guess no such luck. I've only had first of four rounds and SE have been pretty minimal.
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I just found out today I'll need chemo as my HER2 was positive- almost 9%. I've found great comfort in reading your stories. I also cried quite a bit when I found out. My hair is looking the best and longest it has in a long time, it figures. I like the comment that one of you made about people who say "it's only hair,it will grow back" yet they're not the ones about to lose theirs! Oh the things people say. We should start a topic thread on things people say because if I don't laugh about it I may want to smack them. I thought I was past this cancer thing. Had a BMX 2/14/11 for DCIS no cancer in lymph nodes, clear margins (though I think they should have been wider). Now I am back after finding a lump. IBC. ER+ HER2 Positive. All this after I had a bilateral mastectomy for DCIS! Anyway, that is another thread that I have explained. But I am really scared of the chemo. I always thought how blessed I was to have avoided chemo and radiation and the drugs. But here I am. We all are part of that "club" now and it sucks. But I know dwelling on the "why me?" doesn't change anything. I am just really clueless of what to expect, BS mentioned the port today. Why can't they just do the IV each time? I don't like something sticking out of my skin for all those months. I'm sure there are reasons. And some of you are talking about a "cold cap" What is that?
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Hi Rosemamma - welcome to the forum - sorry that you are going through this yet again. You are going to be getting Herceptin for the HER2 part of your BC and that is a long program - a years worth of IV's once every three weeks so the port will become your best friend. The surgery to put the port in is minimal with just some discomfort for a few days and I do not feel anything when they access it for blood or give me my treatments.
There is a topic on here on cold caps - they are being used to try to save your hair. I know they are expensive and I am not sure that insurance covers them. Here is a link to that topic - someone there can help you with questions. You will also have to ask your MO if he will allow you to use them - some do and some do not.
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Some advice: if you are foolish enough to change all your website passwords while under the influence of chemo brain, at least have the sense to write them down! Sigh.
Between getting my wallet stolen, chemo #2, and forgetting my new passwords, this is not my best week. Oh, and there are no LGFB classes that are not during working hours, so no cool makeup for me.
Ok, pity party is over.
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Everforward - call the center or ACS that does the LGFB classes and ask them if they can at least get you a bag even though you can't attend. I don't know how that works but those volunteers that work those are usually all breast cancer survivors and I would bet that they would try to find a way to help you
So sorry for all you troubles this week - I think you are getting them all out of the way now and everything will be smooth sailing for you going forward!!
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Hey Ya'll. Today is "Chair Day". It's round 2 for me. I go at 10:00. What time does everyone else go? Happy Thoughts to everyone!(oh yea, I really don't want to go....)
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I am having head acne, too!
Hi Rosemomma, welcome. I do not have a port and have 4 rounds of chemo. Veins working well so far.
Tuesday ladies- here we go! Easy peasy!
Found this on Facebook today. Who knew?
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Ddkath the 2.5 hours are for the tracers to be injected and move around.
Lake girl make sure you take colace with the Zofran. My favorite anti nausea med is compazine. It knocks you put but I figure if I am feeling sick I don't want to be awake.
So I get to work tonight which will be the first time without my hair. I am not looking forward to this at all.
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Good luck to all who are having chemo today. I hope your SE are minimal.
I go this Friday. I feel a bit like a lamb to slaughter as I start to count down the days before my next treatment. I've been feeling pretty good this week except for my energy. I get exhausted easily and everytime I push it, I pay. Hard to find that balance. When I'm feeling good, I want to be doing everything I did before I started chemo. Not possible. I'm normally quite active and am trying to continue but clearly I can't. I'm reducing my work outs to just activities outside with friends. Although I plan on swimming tomorrow morning before work like I used to 5 days a week. It will be my first swim since starting chemo and I am sooo looking forward to being in the water. I don't even care if I do 10 laps. I just want to be in the water. It's more mental than physical for me.
I had a CT guided bone biopsy last week. I have a spot on my pelvis and some on my lungs. The biopsy itself wasn't too bad. They sedated me quite a bit so I would hold still. I assume I'll hear the results at my pre chemo app't with my oncologist on Friday. If the pelvic spot comes back positive, then they assume the lung spots are also positive. The lung spots are too small to biopsy. My pelvis is still a bit achy but tolerable. I did a short hike (3 hours, zero grade) on Sunday in the Smoky Mtns this past weekend. A girls trip to a friend's cabin. Chilly but gorgeous. Had the fireplace going all weekend and just relaxed. I didn't realize how much I needed that. Can't wait to go back. I am going to take advantage of that open invitation to there and another friend's lake house. It's amazing the generosity of friends/family. I'm trying not to say "No, thank you. I'm fine." I am forcing myself to say "Yes. Thank you. I would love that." I'm realizing that I do need my people around me and it's the best advice I can give others. It takes a village to heal a cancer patient.
Thanks to everyone that contributes to this forum. You are all so inspiring. Brave. Strong. Beautiful.
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linda505 & jaimieh: Sounds like the LGFB program has a standardized program and bag and just the goodies in the bag vary depending on what donations they receive. That's cool. Some of the other posters here said they didn't have a good experience, so maybe the program is just now getting more organized??? I dunno.
linda505: That's too funny that the LGFB teacher tried to rub off your real brows! All the ladies at my class still had their brows too, so we all just used the brow pencil to fill and shape. I still have all of my eyebrows, although when I was plucking the straggler hairs last week, I noticed they pulled out with little force and didn't hurt at all! So, while it was nice to pluck with no pain, it was an indicator that the rest are probably going to fall out soon.
Lakegirl1: My MO told me that my acne is due to the Dexamethasone, so if you're taking that, it might be the cause. I broke out all over my upper chest and my upper back a few days after taking it. It's about cleared up today, just in time for my next dose of Dexamethasone! Sheesh.
Ddkath70: Yes, I had the bone and CT scans. The injection is for the bone scan and has to be injected 2.5 hours prior to the scan. For the CT scan, they'll have you drink the special smoothie 2 hours, 1 hour, and right at time of the CT scan, plus they'll inject you with the tracer (?) at the time of the scan.
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golfingirl, I will be with you in the chair this Friday- AC #4 and scared out of my mind as #3 did a number on me. Plan is to take all those steroids / Meds that I so hate to take and hydrate like crazy. Will be last AC and then I move on to taxol, herceptin, perjeta weekly for 12 weeks. Good luck to all of us.
Sandra
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Thinking of all of you in the chair today! You are another step closer to kickin' it!!!
I have had a few irritants on top of everything. Bad case of folliculitis all of my scalp…finally calmed down and then yesterday I broke a tooth! When I got to the dentist he told me the tooth next to it had a crack and would be the next to go so I was in the dentist fair for 90 minutes prepping for 2 crowns. Other than that I am enjoying the "in between" and feeling pretty good. Next treatment is the 29th so I am enjoying the good days while they last.
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I am not sure if this is against the rules but in reading back I found this post. It may help those of you who are just starting chemo.
Sep 12, 2007 03:51AM Angelflight wrote:Hi ladies,
I'm from the chemosabe march cruisers. Finished my chemo about 10 weeks ago. (Taxotere, Adriamyacin, Cytoxin) or TAC. Your questions and concerns are valid ones, but don't be so terrified. I actually breezed through chemo with little side effects.
Emend is not given too often these days although it's one of the newest of the chemo drugs for anti-nausea. Most insurance companies will not cover the cost of it since it's the most expensive. Decadron will do just as well and is covered in almost all cases.
We were all terrified the first time in the chair, but I had no problems whatsoever. Made a lot of nice friends there as well and we passed out jello and munchies to all the others around us. We always had our own little party, and took an ice chest with lunch and drinks. You can get up and walk around and to and from the bathroom as well. You just unplug and your pumps are battery operated too. We even went outside sometimes for an hour or so.
Take a blanket if you want to sleep although most centers have those as well.
Here are a bunch of great tips and if you start on them right away you can curb some of the problems you'll encounter after chemo starts.
Get started brushing your teeth with Biotene Toothpaste as well as using Biotene Mouthwash in place of your regular toothpaste. It will keep you from getting the mouth sores so many before us have gotten. If you do get mouth sores, have the onc write you a script for Magic Mouthwash. I say prevention is worth a pound of cure.
Stock up on Senekot. The first few days after chemo you will usually be constipated. If you just take one every night before bed you won't have a problem.
Stock up on Emodium. Usually after the constipation is over you will follow with diaharrea. The Emodium will work wonders for most, but those who can't control it have your onc. give you a script for Lotrimin. Also yogurt with active cultures is a big help. Just one a day is enough.
Be prepared for your hair loss. Most of us never knew that when the hair would start to thin it would hurt. That's the time you want to do a final buzz. Besides it keeps you from shedding like a dog everywhere you go.
Most of us don't recommend wigs unless you absolutely have to have one. They're scratchy, itchy and hot. Scarves and cool hats are much more comfortable for going out. Ebay is a good source for scarf lots if you need some.
Be prepared for weight gain. Yes I said weight gain. The steroids you'll be taking for the anti-neasua will work wonders but not without it's price. Expect anywhere from 20-50 lbs before chemo is over. If you're one of the few who doesn't gain that consider yourself one of the lucky few.
Expect lots and lots of sleepless nights. Have the onc. write you a script for Ambien. Most of you are probably already experiencing lack of sleep even before chemo; it just gets worse.
Don't be afraid of all of the medications you'll be taking. It doesn't last forever and all of them serve their purpose.
Be prepared for metallic tasting drinks. Some say flavored waters work well although one time it will and the next time something else will work better. Drink at least 64oz of liquids per day if you possibly can. It will help flush the chemo faster and you don't want to encounter bladder or kidney problems. That includes, jello and any liquids you drink, not just water.
Don't be afraid of your port hurting when they insert into it for chemo. I never had mine sprayed or used a cream and never had it hurt once. The nurses are experts in doing it. Some people complain they can see theirs more than other people. Consider yourself lucky as they say the closer they are to the surface the less problems.
Taxotere and Taxol are notorious for causing water retention or nails turning dark. Never happened to me and some say they put their hands in ice water during chemo to prevent it. It's your call.
I can tell you this. When I did my chemo I was petrified the first time. But I only had a bad bout with diaharrea once until I found out the yogurt was my cure. Other than that I had a little fatique once in a while and that was it. Can't say that's what will happen to you, but know it's possible if you don't dwell on it all the time.
Hope some of this will help you ladies.
Good luck,
Angel
I do have one question for anyone. Does anyone here experience urgent need to urinate as a side-effect? I am sure we all drink a lot of water but when I am standing (working around the house) I suddenly know that if I don't get to the bathroom right away I will not make it. It doesn't happen when I am sitting or for some reason when I am out. Weird I know but thought I would ask.
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LovebeingNana - UGH! I don't know what I would do if I had to pay for 2 crowns right now. So sorry that happened. Someone told me that refined food grade coconut oil was good for nursing the scalp. I don't know if it would help but it is cheap and worth a shot.
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Thinking of you all in the chair today! One less to go! I get my last AC tomorrow and don't wanna go...lol. But I had a great weekend with my family hiking the hoodoos SLOWLY and digging dinosaur bones. My mom is here this time to take care of me
Even at 30 there's nothing better than your mom when you are sick! -
brigadoon - I too have to pee immediately. No UTI so not sure why. Hope that goes away!
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rosemamma88: Welcome. Sorry to hear that the cancer is back after a BMX. I too thought that after a BMX, the chances of reoccurrence would be really low or nil. But chemo & rads should get rid of the rest. Regarding the port, my MO told me that my chemo drugs (TC) are rough on veins and didn't want to have to do an IV for me 6 times for the infusions, due to the damage chemo would inflict. That's why she had me get the port. I don't know which chemo drugs they are recommending for you, but like Linda505 said, you'll get the Herceptin since you're HER2 +, and you'll probably be glad to have the port instead of having a new IV done each time for a year. It looks a bit weird but it's pretty easy to cover up and is only temporary.
clarrn: I bet you're glad you're on the last AC infusion! Yay! That's great that your mom can take care of you, too. Hey, I'll be in the chair tomorrow too, and also really don't want to go! Only TC#2 for me, but like you said, I can cross another one off my "to-do" list.
Good luck to everyone!
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clarrn - I did read one other post several days ago about a woman who was at her chemo appt and didn't make it to the bathroom in time. Nurse handled it well for her but still unsettling for her I am sure. I drop everything and RUN!
Thanks for responding.
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Sitting in the chair now for A/C #3. Getting the steroids and anti nausea meds now. "Red Devil" push coming soon
Nice and quiet here today. Was a mad house 2 weeks ago!
MO and I discussed my timeline and we decided to go with 4 treatments of Taxol every 4 weeks instead of 12 weeks weekly as I have been tolerating the A/C relatively well. I have a major event that I would still like to do mid October and this should get me done as I still have 6 weeks of radiation to do after this. So happy that he is so responsive to my needs! There should be no difference in risk or effectiveness.
Good luck to everyone in the chair today and those going later in the week. We can do this ladies!!
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Best of luck to everyone starting their chemo in April. My thoughts and prayers are with each and every one of you!
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Cheering on the Easy Peasy Tuesday Ladies!
Day 6, post tx No. 2. Doing ok. Supposed to go to dinner with friends to celebrate my birthday. Wish me luck.
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Easy Peasy! Merg, Mmta, Linda - ready, set, go! I don't go until 3pm. Once we get today done, we are one less on the agenda! As my bff says, "BE ARMY STRONG!" I'm sure I'll be bitching and whining for the next several days over SEs, but today I'm staying positive and upbeat!
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Hello all! I'm in the chair as I write this. I just started the Taxol…my 6th of 12. Halfway point, yay!! I have to say I really really didn't want to come here today. Not sure why. Just want to be done with all of this!! And, I've been told the Acne is from the steroids, but I'm not sure. It's raging on my head (still) and face, chest and shoulders. I'd say that is one side SE that we should all be able to do without. Although, I know that it could be much much worse.
I have compiled list of the top ridiculous things that have been said to me (mostly co-workers who mean well, but are completely clueless)...that people should just never say to people who have cancer:
1. What are your chances? (Yes, indeed, I got this question, more than once) I had lots of responses going through my head but I refrained.
2. Wigs are all the rage in Hollywood. You'll love having a wig. (Seriously? Spoken by a girl with hair down to her butt, I am quite sure she has rarely, if ever cut that hair!)
3. My [grandmother/distant/insert relative or friend name here] had cancer. She/He died. (Really? thanks for the pep talk!)
4. Why are you still coming to work? (Well, Einstein, I still need MONEY!)
5. Are you feeling sick? (Ugh. I just can't really respond to that.)
6. How are YOU? (spoken with the inflection on YOU and with the hand on the shoulder…again, maybe someone means well with this question, but exactly what response is expected with this question - the list of meds I now take? The SE's? The "I feel awesome even though I have cancer?"
I have to say the majority of people are amazingly supportive, but to those few, who are just so socially awkward, they don't know what to say - I suggest a quick google search - what to say to someone with a cancer diagnosis: http://www.cancer.org/treatment/understandingyour...
Or here:
http://www.thesilverpen.com/breast-cancer-informat...
Hope you've enjoyed my sarcastic little rant.
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Sending good thoughts to those in the chair today. We should come up with an April Chemo theme song.
Here's an odd side effect that I haven't seen anyone else mention. About 5-7 days after the infusion, I get crazy hunger pangs. I have been lucky to avoid nausea, but these hunger pangs are something. Even if I'm eating well throughout the day I will feel like I am STARVING. I noticed it a bit after round 1, but am really noticing it this week after round 2.
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Same thing happened to me yesterday! They had put me asleep with all of the Benedryl and Ativan and when I had to go I could not move quickly enough! It happened twice! Thankfully nothing like that has happened since. Glad to hear I 'm not the only one! I thought I might wind up in Depends indefinitely!
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Ever, do you think it's the steroids? I just went to the drug store to pick up my meds and somehow wound up with a bag of cheddar popcorn,something I never eat! I gained 4 pounds in 3 weeks.
Have to watch it since when I was on CMF I gain 60 pounds. I still have 35 to lose, two years later.
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hi all
Had my bloodwork today. And like a baby I cried before the nurse poked my port but once she did it I was so relieved!! I felt NOTHING! I'm loving the port!! I was told that I would get a call if tomorrow's chemo has to be delYed. No call several hours later so I'll be in the chair tomorrow at 9. Round 2 of FEC
I met with a genetic counsellor today and will have the testing done. 8-10 weeks for results
I met with my MO. He thankfully remains of the opinion that I will do well and move on quickly. I hope that he's right. A year of herceptin doesn't sound great but that just gives me a reason to plan a big party once it's all done!!
I'll try and text from the chair tomorrow. Hopefully I don't get too nausous this time or throw up!
I still have thread hanging around from the stiches around the port which will be removed tomorrow as well. Truly looking forward to that she said sarcastically
Hope all are doing well. We shall get through this and move on!!!!!
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Footballnut - It is nice to know you don't have to wait. I always found waiting the hardest thing to do! Good luck tomorrow!
I just finished my third round of chemo, with one left I received some scary news. My company which has been wonderfully supportive will end my insurance as of June 30th. Yikes! I spent most of my time at the infusion center sending the nurses to get the social worker. I still have to have my final exchange surgery and the PS wants to wait four weeks after my final chemo. My next is scheduled June 10th. That just does not work out on the calendar. I have phone calls into the PS and MO hopefully we can work this out!!!!!!!!! I really just wanted to come home and sleep instead I am by the phone hoping and praying for some miracle answer.
On another note has anyone heard that their MO suggests keeping your port in for a year after your treatments are done?
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mikishelley - I have heard of several people who were told to leave their ports in for awhile. Never heard a period of time though. I think it is really your option.
So sorry about your insurance! That really sucks.
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Hello Beautiful April Ladies!
I hope those of you who spent today in the Chemo Lounge found it as boring as ever, and that your SEs will also be incredibly dull.
Thanks for all your lovely compliments on the scarf! It was a gift from a friend who lives in Florida and shares my love for all things Disney. It's so funny though - at the Cancer Centre I see all these beautiful women in their late 50s and early 60s wearing scarves. And they all look so GLAMOROUS and Hollywood CHIC. And so I try it, and all I see when I look in the mirror is a little girl who tries to play dress-up and ends up looking like a pirate! LOL!
Speaking of GLAM and CHIC, EverForward - WOW! You look AMAZING in the scarf!
Oh, and YES to the intense hunger. Every round so far. What gives? I swear I'm going to gain 20lbs even with the nausea. Blah.Brigadoon - I was super worried about what I was going to find under my hair - like a misshapen skull? Or some weird scars? Or a freaky tattoo my Mom didn't tell me about? In the end, it was pretty anticlimactic. There is one teeny tiny chicken pox scar, and that's all. My kids were actually a little disappointed there wasn't anything cool under there.
Linda - the wicking nightwear tip is wonderful. THANK YOU! I have been hot and cold every night since this last infusion, and no sleep means more nausea for me. I told my husband about it, and he promptly went online, found a store that sells the stuff, and ordered me to buy some. Spend your money on new clothes? OF COURSE, Darling!
Dkath70 - For this round (Round 3 of 6), I was given Zofran for Chemo Day and the 4 days afterwards. I also have Stemetil to take as needed. The Zofran is working...MOSTLY. I definitely feel better than last round, but improvements could be made. I HATE the Stemetil. It makes me feel..."wrong" - light-headed, woozy, super tired, unfocused. Basically I sleep through the entire day on it. So I stopped taking it, and used Gravol instead, which isn't as effective, but I'd rather be queasy than feel what Stemetil did to me. My only advice with regards to nausea is to keep pestering your MO until he/she gets the meds right. I have 3 more rounds, and next round I'll once again be pushing for something better. The GOOD NEWS is that the nausea (for me) doesn't last weeks and weeks. It's really only about 4 or 5 days that it's bad, and then it fades.
clarrn & footballnut - I've got my pom-poms out and ready for you Ladies tomorrow!
jhodro - Oh my goodness! Number 4! It's awful, but I laughed my head off - it's funny cuz it's true!
Regarding the whole anti-oxidant/vitamin thing, what I'm getting is that for those who were doing it before, carry on as usual. For those of us who could barely remember to take a vitamin once a month, probably during chemo isn't the best time to start. It makes sense to me. I know I'm definitely going to be looking at it more seriously once chemo is over, and I'm taking all your tips and recipes with me.
About the acne, I know that the steroid can definitely cause it, but so can the Taxotere. My MO was super upset when I had my HUGE breakout (think WORST ACNE EVER) all over my face and neck, and no one told him about it. The onco nurse on call told me it was from the steroid and sent me on my way. My MO said NO, mine was an allergic reaction to the Taxotere. Just something to keep in mind and mention to your MO, just in case.
Anyway, after writing a novel for you all, I'm off to enjoy some more sunshine. I've finally emerged from Round 3's Dark Place (man, it is UGLY in there), and I'm sitting in the Light. Whew. Just 3 more times.
And can I just say that I love you Gals? No matter how awful I feel, someone here always has something kind or funny to share, and it makes me feel better. So THANK YOU Chemo Buddies. You all ROCK.
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ColdinCanada - You should get an eye patch to complete the look!
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Just got back from the MO. I guess that some of the swelling and pain from round #3 was actually lymphedema. I thought it was just the steroids
Trunk and arm. Boo. Pity party beginning. I guess I was trying to live in the "this is just a bad year and next year everything will be like it was" mentality. I was not expecting this 'souvenir'. Another specialist to see and more appointments. I know that there are lots of things to help me deal with it but for today I am just sad. And worried. It's my dominant arm of course. Going to head over to the LE forum for tips. Another thing to watch for ladies! -
Clarn, So sorry about the lymphedema. That really sucks. I am sure you will find a great group of ladies for advice and support over on the other forum.
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Cold, so glad you have emerged from the dark place. I expect to be heading there in around 24 hours or so. I had round 3 today which was uneventful. I did get some new meds this time which will hopefully help with the nausea. I got Aloxi & Emend added to my IV. The nurse said it's "gold standard" medicine & it should definitely help with the nausea. In addition, I will start Zofran and Decadron tomorrow.
It's so weird and surreal when the nurse puts on the gown and gloves as she prepares the poison she's about to pump into our bodies. Ugh. I try and just remember who we're trying to poison ("Die little f*ckers!").
Linda, Mmta & Merg - I hope your infusions were Easy Peasy!
Half way there and loving that.
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SharonDe: Happy Birthday! I hope dinner goes well for you.
mikishelly: I didn't think employers could just end your insurance. Isn't that illegal? Discrimination? Anyone here know? Sorry I don't. As far as the port, you can leave it in as long as you want, but you have to get it flushed out every 4 weeks if you're not actually using it. I think some folks keep it in for future blood draws. I haven't decided what I'm going to do since I won't be done until August.
clarrn: Sorry to hear about the Lymphedema. I'm sure your specialist will be able to help you with steps to prevent it in the future. I read that one of the things you can do is to sleep with that arm elevated above your heart to help with the fluid drainage. Good luck.
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Hi! Just a quick check in for the easy peasy Tuesday girls. Chemo lounge was in eventful as always.
Big surprise was when my MO brought up 12 weekly taxol after next round of AC
Had it on my list to talk to him about. Ughhhhhh, puts another damper on plans and managing through some work and big personal events. Also means the TEs stay in until October. The gift that keeps on giving.....
More nauseous tonight and a bit of a headache and more fatigue so early than last time. Already have taken emend, decadron, now zofran and will include Tigan in the morning. No Nuelesta shot tomorrow since bloodwork was very good and I got him to agree to extend my next round by a week so I can feel good for my daughter's high school graduation day.
Silver lining was seeingmy college roommate who drove a couple of hours to see me. It's like we start where left off. She is a cancer survivor too and gave me great perspective. Not sure where 30+ years went. Still feels like we are 19 when we get together....
But now I am pooped! I will go back and read all the other posts later....
Carry on, girlfriends!
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I'm half way done as of today...yea me! Last round of AC seemed to take all day, but glad it's behind me. Hopefully my SE's will be milder...crossing my fingers!
Longislandl8y...yes, it is surreal when the nurses get suited up to put those toxic drugs in my IV. This whole experience feels so unreal, doesn't it? And I have to say I LOVE your mantra, "Die, little f*ers!" It is most fitting, and I'll think of it often
Loved reading all your posts during my infusion today...thanks, Ladies, for the inspiration you give me!
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Wow lots of activity in here today - 2nd treatment was long but uneventful. Tired now - hope I can sleep tonight - ughh I hate the steroids. I was in the chair for 5 hours - longer than my first treatment which was about 4 hours - no one can figure out what longer? lol - oh well. get my shot tomorrow even though all the bloodwork has been and was good. Hope everyone elses was "easy peasy" too and good luck on minimal SE to all!! picture of chemo 2 with my LGFB wig!! and my bushy REAL eyebrows LOL
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Oh Swiss Miss, I forgot you were also going today! Sorry! Glad you smiled over my mantra!
I am halfway today too! Who's better than me??? You are!!! I'm in a fog, going to bed in a few minutes.
Good night fellow warriors!
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What a great wig Linda! And an even better smile.
My wig gives me a headache so I wore a beret today, even though it was 8l degrees. It's still cooler than the wig.
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clarrn - SO SORRY to hear about the lymphedema. I, too, was diagnosed about a week ago. Here's what the lymphedema PT told me, and I hope it makes you feel better about it all. Basically, I've had some mild swelling and pain in my arm and hand since my surgery in Feb. My BS blew it off saying it was "normal healing", claiming that HIS patients RARELY get lymphedema (insert eye roll here). After some pushing on my part, and a couple of "there's nothing there" ultrasounds, he FINALLY referred me to a specialist. The specialist was AWESOME, and completely reassured me that while YES, I do have some swelling and YES, it looks like a mild case of lymphedema, it is still very early stage and easily treatable. In fact, she thinks we can likely CURE it by getting full range of movement back in that arm.
I had been faithfully doing my stretches until I found out I needed chemo, and then the port went in, and then chemo started, and suddenly it had been a few weeks since I had stretched out that arm, and it is still pretty stiff. The PT is fairly confident that getting that arm back in shape will solve the whole problem.
IN ADDITION, she told me that chemo causes swelling. Lots of it. So expect to see pain and puffiness throughout your chemo treatments, and don't panic. I was given some stretching exercises, and a follow-up appointment, and a big thumbs up for making it this far.
I hope this helps a little. And I really hope your appointment with the specialist ends the same as mine.
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Finally received my onchotype results from my MO. I am halfway through chemo, so obviously I didn't base my decision on the results, but I was still interested. My score is 11, which is low. Because I had only two lymph nodes positive the score came back as "node negative." But I think any lymph node involvement would be too risky not to do chemo...I mean, I'm planning on living for many, many years! I have kids to raise, graduations, mother-of-the bride or groom gowns to shop for, anniversaries, vacations...chemo seems like the best way to be certain the odds are on my side. I guess I just needed a reminder of why I'm putting myself through this whole ordeal. Especially since SE's are kicking in already.
Be strong, we can do this!
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Mscaruso - I'll be thinking of you this Friday while I'm in the chair. Hoping this round will be easier.
Lovebeingnana - So sorry to hear about your tooth! Miserable.
ColdinCanada - Love your posts. I'm from Calgary too but living in Atlanta. I hope the TBCC is treating you well. I worked at Foothills for 15 years. I sure miss home. Especially now with all my family there. They're rotating coming out to see me. My little sister flies in tomorrow. So excited!
Longisland - May I steal your mantra? I meditate and have been looking for a mantra whilst I receive chemo... it's perfect!
Swissmiss - congrats on being half way done!
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live from credit valley hospital. Round 2!!! One more round of FEC then on to taxotere and herceptin. Rock n roll!! So far so good. Hoping for minimal SEs although feeling strange while being infused
Love reading all of your posts! It would be cool if we could all hook up somewhere in the future to meet!!
Have a great day all!!
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Footballnut you look great!!!!
Linda I hope you got sleep last night.
I hope everyone has minimal SE's!!!!!
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Football, I was just having the same thought about how cool it would be to meet everyone in person in the future!
Still starving this morning, but feeling almost human.
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Wishing all you ladies in treatment now easy infusions and no SE's. You both look awesome in the chair! Thursdays are my chemo day. Tomorrow is the 4th of 12 weekly Taxols. Yea! I'll be 1/3 of the way through -- then onto rads. For those of you with my treatment, 4 AC followed by weekly Taxol, the Taxol is much easier to tolerate - so take heart.
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Good morning ladies. Football, I am in love with your picture! You look great! And the NY gear makes me smile
Golfin girl - Please, use that mantra in your meditation. If we all use it, maybe we can send out a strong vibe to the universe and heal lots of people!!!
Swissmiss - I agree with you wholeheartedly. If those little effers got into two nodes there could be stray cells that the chemo will kill (Die you little f*ckers!). But 11 is a beautiful oncotype score - happy for you!!!
Everfwd - I just started steroid pills today. Hope I am not a ravenous psycho in a few hours, hahaha. But if so, so be it. I'm already gaining weight - I've got to go with the flow here. There will be plenty of time to lose it once we're out of the Twilight Zone and back to our regular lives.
Have a great day ladies!
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we really should try to arrange some type of get together. Imagine the discounts that we would get!!! Lol
Tx for the kind words!!
Home now. They have me extra anti nausea meds today so hopefully no vomiting this time!! Feel tired now so I guess I should rest but thinking about eating first
:-)
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Does anyone get sharp shooting pains in their gut? I'm on T/C.
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Timbuktu - yes to the sharp shooting pains. In my stomach, and other areas as well. In my case, they usually don't last too long, but are a bit scary.
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Footballnut - you look great. I hope this rounds goes much smoother for you. Rest well.
BTW. I like your hat!
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Going to get my Neulasta shot soon. Do you guys get a red face after treatment? I don't need blush now.But I'm not hot or flushed. I'll ask at the docs today. Just wondering. Have an easy day Ya'll!
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Thanks Sharon, that's reassuring. I just spoke to the Cancer Society Onco nurse and she said that chemo can cause inflammation and that can make tumor markers rise. The liver, pancreas, etc, can become inflamed.
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Football: You look great, as always! Hope you get some rest and avoid the nausea!
Merg: My face is always red the morning after my treatment - for about 6 hours or so. I was told it was the steroids for me. It looks like a sunburn - face and chest. It just kind of fades by mid afternoon.
Hope for no SE's for everyone this week!!
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Linda and Footballnut, love the chair pics. You both look radiant given what you are going through. Peace to all of us going through this.
Mommom, thanks for the reassurance on the taxol. I found out yesterday that I will start 12 weeks after my next round of AC. Was assured the side effects and lose dose would be easier on my system than Taxotere. Wish I new this when I switched to AC from TC if nothing more than to get myself mentally prepared. Did I tell everyone this already? I feel like I am repeating myself...chemo brain.
Thank you decadron for keeping me awake all night last night. Slept for an hour. Worked the morning while wired with more decadron and came home to sleep for a bit. Napped for 1.5 hours and off to soccer game. Hope tonight I sleep better.
Nauseau still hanging with me. Forcing myself to eat something every few hours and that seems to help. So many nauseau meds it is hard to keep them all straight and on the right schedule.
Hang in there warrior women. And, Yes a get together would be awesome if it can be worked out!
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For you brigadoon!
See? Total PIRATE.
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You crazy kids! Enjoying all the fun photos.
Good thoughts for anyone going in tomorrow.
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ColdinCanada - I LOVE it!!! Now look in the mirror and tell those nasty cells to walk the plank and jump into Davey Joneses' locker!
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I am stealing the look! I actually have a pirate dinner to go to on the 30th with my husbands work. Should be fun!
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Weird sleep pattern means I'm in bed by 8:00 and awake at 3:30. So here I am. My MO explained about the stomach thing. She said chemo destroys any cells that reproduce often, which includes cells lining the stomach. that's why I feel simultaneously ravenous and like I want to swallow a bottle of Petpto Bismol. I'm hoping this fades away soon. It's amazing how even a slight stomach problem can impact your productivity.
I booked a massage for Saturday!
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5th Taxol treatment today, I hope. My BP was low when I went in for my labs yesterday, so I hope my CBC is ok to proceed this afternoon.
Anyone else in the chair today?
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so cute Cold!! Love it - funny when I got my treatment tuesday I was looking through the basket of free stuff they always have there - hats and scarves and things and there was an eye patch in there and I thought of YOU!!! LOL
Day 2 and feel pretty good - they cut my carboplatin by 15% and I do think it is helping with the neuropathy - last time on day two my fingers hurt more when I typed but we will see where this goes by the afternoon - but I am keeping my less achy fingers crossed.
I had bald spots and what my hubby called racing stripes and I couldn't take the itchy feeling any longer so hubby shaved me and now I am using coconut oil on it and it feels so nice - Not a great picture but it is my "oh is the me look?" LOl
Hope you all having great SE free days or minimal ones that you can manage - and in everyones pocket who is going in the rest of the week!!
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merg - like jhodoro said, it's likely the steroids. I'm flushed all week. My face feels hot but my hands and feet are ice cold. When that flushing fades, I'm very pale, almost gray. I need to try to get some sun so I don't look so darn sick.
JanetP - good luck with your treatment today. I'm in the chair tomorrow.
Coldincanada - I'm diggin the look
Linda - you look great bald!
Just curious, do most people's oncologists put y'all on a strict regime for anti nauseants? Mine does and it certainly keeps it a under control but I also have the flexibility to take two other drugs in between these strict doses incase I require it. I do require more at times.
For example: Decadron 24 hours before chemo I start the pills for 5 days, in the chair: Emend, Decadron, Zofran IV, then Zofran orally every 12 hours for 3 days. If needed: compazine, ativan, zofran.
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Golfingirl-My MO doesn't give any strict regime, decadron and famotadine after chemo but that's it. Although my chemo is a little less than yours.
Just wondering if anyone here will be starting Tamoxifen soon?
My last chemo will be on June 2nd and I have no idea what it will be like to stop chemo have my exchange surgery and start the tamoxifen.
Love the pirate look. There is a pirate ship that does cruises on the Mississippi river here in St. Louis, MO. Just an idea for the "get together". We could all dress up and be on a real pirate ship. I will see if I can find a link to the cruise and post it later.
Have a great SE free or at least minimal SE's week.
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Found the link fairly easy http://www.gypsyrosepirateship.com/
As an avid boater on the Mississippi river it is always fun to see the Gypsy Rose and everyone is always having a blast! Just a thought since the pirating theme seems prevalent here lately.
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Good luck to all of us in the chair this week. I am loving the photos. We will have to create a forum for after chemo photos, when we have hair and don't look like Captain Jack Sparrow. I head to the chair tomorrow and I am going to use the mantra you guys have going - DIE F****** DIE. It will be the only thing getting me through it. I would take a lorazepam during the tx but can't - have my daughters 9th birthday party in the afternoon. I'm sure the steroids will keep me moving until afterwards.
You guys are all so amazing, Will check in once the brain fog post chemo settles.
Not sure if anyone saw it, but the NYT had a great op-ed piece about aspirin use and the potential to prevent cancer and recurrence. A new idea to consider post-treatment. If it can't hurt I am all for it. I intend to pull every trick in my arsenal to prevent this sh*tshow from happening again. Going to see what MO thinks. Not that I will necessarily listen to her if she nixes it!! Ha!
Sending no SE vibes to all.
Sandra
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Good morning ladies. Day two (or three depending how you look at it - was infused on Tues.) and feeling better than after infusion 2 in this stage. I credit it to the Aloxi and Emend added to my IV this go around, in addition to Decadron & my own add of Pepcid.
MMTA - I too had sleep issues with the Decadron, but not as bad as yours. I slept 10pm til 3am and have been up since. I guess that's the payback, but I think it's worth it.
Everforward - I feel the same as you post treatment - famished but nauseated at the same time. I am not feeling as much nausea this time which is good on the one hand, but also means I'll probably be more apt to give in to the hunger, and gain even more weight! lol, oh well. Also, my nausea drugs (Decadron & Zofran) run the same pattern as yours. My nurse said we need to stop the Zofran after 3 days because constipation can become a BIG problem. Not sure about the Decadron but I believe it's a steroid, which tends to run only 5 days for most ailments...
Golfin - Don't go out in the sun without strong protection! My MO didn't even tell me this until my husband inquired and then MO said, "Oh yes! You are very photosensitive on chemotherapy!" Thanks Hubby. These doctors, lol.
Question for all - do you see your MO at your infusions? I haven't seen mine since the consultation and I've had three treatments already...
Oh, and Cold? No offense to anyone else, but you are surely the coolest one in our thread. Thank you for continually making me smile. Your pirate pic is fabulous!
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cold. Love the pirate look!
Funny my onc nurse is a rocker and we started chatting about music yesterday. I told him that I was the "angus" in my ac/dc trib band. He asked if I have the schoolboy suit and if I did the angus moves so next infusion I'm going in the suit with my guitar to freak him out!! I'll take pics!! Lol
I meet with my MO the day prior to my infusion and have my blood work down as well
As for anti nausea meds here is my regimen:
At infusion
- 1 8mg tablet ondansetron
- decadron given as IV while I'm in the chair
At night day of infusion
- 1 8mg tablet ondansetron
Day 2 and 3
- 1 8mg tablet ondansetron at breakfast and dinner
- 1 4mg tablet dexamethasone at breakfast and dinner
I also have my "just incase pill" which is 10mg prochloperazine. I take those every 4-6 hours as needed days 1-3. I took 3 yesterday
So far no vomiting and nausea yesterday was better than first go round. Today so far so good
Now I wait for my nurse to call for my neulasta shot
I was told to use spf30 sunscreen. I he's ombrelle but will try to hang out in the shade this summer. :-(
Tonight is my ranger game so hope that I don't nod off like yesterday! I'll Aldo try to get a walk in
Wishing all a great day!
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I too read an article about taking 2-5 low dose aspirin post chemo and the benefits have been good. I am definitely speaking with my MO about this.
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LongIsland - I seee my MO before every treatment, then my bloodwork and finally my infusion. I assume protocols are different for everyone though.
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A good resource is the Think Pink Live Green pamphlet on this site. I downloaded it and it has great "researched" ideas to help prevent recurrence and help keep us all healthy.
Day two post chemo and I feel like HELL. Fatigue is much worse after round three for me. Leg cramps and I am so Moody everyone is treating me like a queen while I just give the "Hate You" eyes. So glad my family is doting on me because anyone else would throw me in front of a bus today. Hope everyone else is doing ok!
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Day 4 after second infusion. Tried going out shopping in my new wig. Hard to walk. Muscle aches and fatigue. I'm in for the day.
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Longisland - I can't believe you think I'm cool! This is a VERY good day for me!
I grew up as the nerdy weird kid who was bullied from K-12, and then continued on as the nerdy Academic through 9 years of University. I have NEVER been cool. Who knew all it would take was a scarf and an eye patch? lol! Thanks so much for the compliment! I think all of you Ladies are the coolest, bravest, most inspirational people on the planet. Regading MO visits, I never see mine on Chemo Day. But I DO see him the day before Chemo to discuss any med tweaks, blood work, etc.
mikishelley - my SEs were the WORST ever this time around (Round 3). The nausea was marginally better, but everything else was worse. The fatigue was a nightmare- I just slept and slept, and when I wasn't sleeping I was grumpy because I needed to be sleeping. I have heard that Round 3 is the worst, and then things gradually improve (why?). I don't want to get my hopes up, but wouldn't it be great if that was true?
You know what I love? All the pictures showing off our hairless heads. You BEAUTIFUL, BEAUTIFUL women make me smile every time you post a shot of your naked scalps. Because if you've got it, flaunt it, right?
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forgot to ask - is anyone else having ringing in the ears? Subtle. It definitely there for me.
I will add it to the list of things to discuss with MO. (Sigh)
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I'm not having it but the dr warned me that taxol can cause that.
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LongIsland, no offense taken at your comment about Cold. Agree.
I don't see my MO on infusion day. Instead I see her the week after and we go over the SEs. I do blood work the day before the infusion and at the follow up appointment with the MO the next week.
Feeling almost human today! Took a Zantac this morning, so maybe that helped with the stomach problem.
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LongIsland on chemo days I get blood drawn first then I always see my MO, he checks me out, asks about how my SE's were and then sends me to the infusion room.
Ooooooh I am not looking forward to #3 which is a week away....it has a bad reputation.
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Love seeing all the photos of y'all! You all look great!
It's appearing that the pirate knot is very popular this year! It's my favorite scarf knot too! Here's a pic my hubby took of me in the chair for TC#2 on Wednesday with my pirate look (sans patch).
I still have about 5% of my hair, which was buzzed with a #4 razor and just looks weird. I might ask hubby to shave it down shorter.
mikishelly: Sorry you feel bad today. Hang in there and get some rest...it'll help! I think that pirate ship party would be a great idea for a get-together for us! It'd be great to meet each other and party once we are all done with chemo and can all drink again.
BTW, I see a lot of posts on nausea, so yesterday, I asked my nurse what anti-nausea meds they were giving me. I get an IV injection of Kytril followed by a 20 minute drip of Emend right before my T&C. It seems to work for me. No nausea yet...fingers crossed.
LongIsland: On infusion days, I get blood drawn and then in a half hour, I see a nurse who goes over my blood work results and SEs to see if anything needs to be tweaked, and then go to the infusion room next door. I don't see the MO before each infusion or even in between infusions.
Wishing everyone minimal SEs and a good day! Don't over-do it ladies. If you're tired, take a nap. You're allowed to!
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Cold - you are the coolest
, and we are lucky to have so many supportive folks in the April group.Great pic, mommy!
As for seeing the MO - I see mine before each infusion. She actually called me yesterday, concerned about my sugar levels in the bloodwork - said steroids can elevate it, but she is having my GP look at it as well. I admitted to carbo loading of pancakes and maple syrup prior to last bloodwork - that might have elevated the sugar numbers ...
I still do not get a neulasta shot, or any follow up blood work other than the day of infusion.
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Thanks for all the feedback on seeing the MO. My bloodwork has been great all along so maybe that's why I don't see him. I will ask at my next infusion though, when I WILL see him.
Cold, it's not the picture that makes you the coolest - but it surely enhances it, lol. It's your awesome personality & you were probably just too cool for those bratty kids to wrap their heads around.
Miki - boo, sorry you're hurting. I am doing okay but was totally wasted the night of infusion. Slept in a drug induced sleep for sure. I am sure the new anti nausea drugs have helped quite a bit for me this round. But who knows what tomorrow or even a couple of hours from now might hold?
Love your pic, Mommy. And I dig your sandals too!
Football, feel better and LGR!!!
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Looking GOOD MommyQ! The scarf is gorgeous - it's all the GLAM and CHIC I was talking about.
And can I just say I LOVE your bag and I wish I could have it? -
Thanks, Sharon, LongIsland, and ColdInCanada! I definitely DID feel Hollywood chic with my scarf and sunglasses being chauffeured to the hospital by my hubby for infusion day!
Since I lounge around in "slacker" clothes at home, I thought I might dress up a bit to go out, even if it was just to go sit in a chair for hours in the hospital, LOL. Sorry, Cold, I gots to keep my tote bag. It's the perfect size for schlacking all my stuff to my treatments. -
MommyQ love the scarf.
Thanks everyone for the well wishes. I'm having beets and a spinach salad, lots of water, and then meds and bed hopefully for a good long nap!
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Am I just being crabby? Or would you be frustrated too? Typically, on my infusion days, I have lab work, then 30 minutes later I have an appointment (made at least 2-4 weeks in advance) with my oncologist, then I go over to infusion at the hospital down the street. And typically, I spend about three hours, yes THREE hours at the oncologist's office...just waiting most of that time. I have never had any real issues, so no special care or attention, no weird symptoms or things to discuss. He checks my labs, does an exam, and I'm sent over to infusion. A typical day has me spending an hour in the waiting room, then another 90 minutes waiting in the exam room, and then, give or take, about 30 minutes with the oncologist. Thoughts? Am I crazy with SE's, or would you be thinking about changing doctors too? My oncology appointment was set for 8:45 am on Tuesday, but it was after 12 when I finally arrived at the infusion department. My MO gets defensive when I make reference to how long I wait, and I'm just not sure I am happy. Thoughts?
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Longisland I see my MO every 3rd treatment. I saw him on May 9th and will see him again on May 30th.
Swissmiss Wow, I get my lab work done the day before chemo, just takes about 5 mins, then I go in the following afternoon for my infusion. I hardly ever have to wait longer than 5-10 minutes to get either one started. I would be crabby too if everything was taking that long!!!
I just called the treatment center, they said my labs from yesterday "look great" so I will be heading off to "the chair" in a couple hours! Today is my regular weekly low dose of Taxol.
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Hi ladies. Thanks so much for posting your experiences/side effects with chemo. I go for number 3 tomorrow. Feeling a bit more nervous this go around. I am not quite sure why.
All you ladies that have posted pictures are gorgeous. I love the scarfs.
Linda, I think that you are near me. Are you near Nokomis?
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Trina/Swissmiss - I don't think you are being crabby at all. That is an unreasonable amount of time to have to wait - especially every time. I would probably look for a different MO.
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Swissmiss - Crabby would be my middle name! (well it is) I go to hospital 1 hr before my appt. to get my blood work done and then I I go to my appt with my MO. I see him for most of my visits,, on time. Once every three appts I see the PA. Your schedule makes an all day affair out of your infusion. That would drive me crazy and exhaust me.
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I either see my MO or his PA each treatment. I only see the nurses on lab and shot days but they go over side effects and report them to the MO if it is something they think he needs to know right away.
Swiss Miss - I get to my appt at 9:15 and am in the chair for infusion by 10:30 - I think it is long too but sometimes their are peeps having issues that the doc is attending too in the infusion room and sometimes the labs just take a little longer. I have labs the day of treatment.
But I am in the chair for about 5 hours ughhh. So I just know on infusion day no matter what it is gonna be a long long day.
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Hi Ladies,
Cold - Loving the pirate pic!! May have to duplicate that one for my grandkids. They will love it!
Can't remember or find the name of the person who literally got up off the table and ran out of the hospital, but you go girl!!! This is the best story EVER. Loved the follow up pic of the kid running. Miracles do happen:-)!
To Linda and others who posted pics. How the heck do you do that??? Took some pics in the chair today on my cell but can't figure out how to get them here. Another breezy Taxol for me (my 4th), and have pics of how I ice my feet and hands to prevent or lessen neuropathy and nail loss - for all of you who have Taxol in your future.
Decadron rash - yep, that what my MO's office calls it. Usually goes away in a few hours and gives you that rosy glow w/out blush.
Sleep issues - I had really bad sleep issues while on AC & far less with Taxol. During AC I discovered that OTC Unisome works wonders for me. I only take it now the night before Taxol and night of chemo day because I'm taking 2 Decadron (primary cause of my sleep issues) on those two days only. Bendryl is in almost all OTC sleep aides EXCEPT Unisome. Benedryl pumps me up instead of putting me to sleep. I always check with my MO before taking anything and she's OK with the Unisome and generally not OK w/sleep aides in general, particularly prescription ones like Ambien because she's had lots of patients who've become dependent on them post chemo.
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Mommom - I email the pictures to myself from my phone - I have a smart phone or I connect my phone to my computer with a usb and download the pictures - once they are on my computer I just click the little box picture thing in the menu bar above the box that you type in and select where to get the picture from and it puts it on here
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Thanks Linda. Will try that later, obviously very computer challenged:).
OK my chemo brain has officially checked in. My comment above about the woman who was going to have a risky procedure done in the hospital was told just as they were beginning that it wasn't necessary! She literally got up off the table and ran like hell out outta there before they changed their minds. I'm following so many threads; this was is on page 834 from FierceBlue - on the Calling on TNs thread.
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Success! Didn't notice the photo icon in the bar. Thanks Linda! RE icing. Since I'd lost one big toe nail w/AC (very unusual) & about to lose the other, I was determined to do everything I could to prevent or lessen neuropathy and more loss of nails. My MO's office has noticed success with many of their patients who've tried the icing of feet and hands. I ordered the $$ Elastogel gloves & booties, but they only stay cold for about half an hour at most. You're supposed to start icing about 10 min. before, during and 10 min. after the Taxol infusion. I used Lisa's method of making the alcohol & water double freezer Ziploc bagged slushly icy concoction & they are actually a lot colder than the Elastogel!. I started with the booties/gloves and switched about 20 minutes later to the first set of homemade ice packs. You should put your feet and hands in some kind of a thin liner (I used the paper liners that come w/the Elastogel, but Lisa just put her hands and feet in a plain empty Ziploc bag. Several of them got less cold as the time went on, so switched them with a back up set. Feet - one GAL size ice pack on bottom and top of each foot. Hands - one QT size ice pack on bottom & top of hands. Ratio - 1 part alcohol to 2 parts water.
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Forgot to mention that we kept the ice packs from slipping with small adjustable bungee cords. Where there's a will, there's a way.
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24 hours post AC #4..... And feeling better than any other round so far. Tired and foggy brained but I actually got out of the house to buy some veggies and seeds for my garden ( have to start late up here). Flowers and growing my own produce have always been my happy place. Day 3 is usually when trouble starts but I am so grateful for a good day!
I must say you are all looking fantastic!
To
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Clarrn, glad you're feeling well. We share the same happy place My gardens are my church.Swissmiss, yes you are more than justified in your crankiness over time wasted on such a stressful day to begin with. I typically wait 5-10 min in the waiting room, get my blood drawn. Wait about 10 minutes for that to come back. Then we get started on the infusion. I am there around 2 - 2 1/2 hours total. I got back the next day and am in and out for Neulasta shot.
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MomMom - you are beautiful! Keep us updated on how the icing works out.
Tip for rashes/Itching - one of my worst SEs is an itchy rash, mostly on my neck, chest, back, and scalp. It seems to get worse starting day 5 or so. Hydrocortisone anti-itch cream helps, but I hate the greasy feel. I've found the Aveeno Bath/Shower Skin Relief lotion works really well. I put some in a warm tub and just soak for a while, or it can be applied after a shower. Thought I'd share, in case anyone else has this issue. And, would love to hear tips from others.
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what a beautiful thread of women. Just gorgeous!
So far so good after Tuesday infusion. Worked all day today and didn't feel too bad. Kept up on anti- nauseau meds. I get decadron IV at infusion, emend pill at infusion, decadron for three days after, zofran, emend for day 2 and 3 and supplement with Tigran as needed. I sometimes wonder if these meds vs the chemo bring on the fog but it is working. Round 3 so far is easier than round 2. Where is the wood I should be knocking?
As for the rest of my routine, I get bloodwork done the day before and it takes 5-60 minutes depending on what time I get to the lab and number of people.
I see my MO before every infusion and he has his own private infusion area at his office. Usually see him within 45 min of scheduled time on infusion day. Then approx 3 hours in the chair. I plan for 4-5 hours total.
Thanks for the great advice on taxol, mommom. That is the latest addition to my protocol that I will start at the end of June.
So funny, the other thread I am active on is January surgery girls and we have adopted tiaras as the theme sprouting from one of the gals on that thread. We have our pirate theme in full force here! Love, the camaraderie!
Ann
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Thanks mikishelly! The scarf was a present from my MIL. I hope you had a nice nap today!
Swissmiss: Your wait time seems a bit long in my opinion as well. I don't think you should have to wait more than 30 minutes each in the waiting room and the exam room. Your doc could be overbooked.
So, I learned on Wednesday talking to my nurse that when my tongue turned white after my first infusion, it was some sort of yeast infection fungus and I should have called them for drugs to fix it. So, today, when I noticed my tongue starting to turn white again, I called. They phoned in a prescription for Fluconazole, a one dose pill. FYI, in case it happens to you. I just thought it was a regular SE that they didn't tell me about.
Well, I just enjoyed some chocolate ice cream and am ready to call it a night. Have a good evening, ladies!
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SharonDe....thanks for the Aveeno info. I have a rash that would make a 14 year old boy look good. They say from decadron or Taxotere or both!!! I'm adding steroid med dose pak to the mix!!! Aloxi, decadron, Pepcid and Benadryl before Taxotere infusion. Zofran and Ativan to take at home with addl Benadryl for itching if necessary. I am knocking on wood, only had to use 1 zofran for the roid headache. Then, I am just drinking tons of water to dilute and very careful what I eat!!! I seem to have minimal lower GI issues, mild D...some cramping, but hard to tell if that isn't just from putting so little in the system and then asking it to work again...
Hears to minimal SE's to all over the long weekend...this Lake Girl is getting some lake time!!!
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ok... Can't sleep. I ran into a coworker at the store 2 days ago, and I have NO clue who it is. She hugged me multiple times, said they were all thinking of me/talking about me, etc at work. But then she asked what my prognosis percentage was. What? And I was so stunned by the question I answered. Guess that is all over work now. But it bothers me more that I cannot remember who she is. Or even if we worked together in oncology or ICU. And I had left my wig in the car because it was driving me nuts and I only ran in for one thing so it was the first time rocking bald, and without earrings or scarf. Maybe I looked so bad she thought I was dying and that's why she asked the percentage thing. Must be from ICU, oncology/palliative nurse would know better than that. Oh well... lol. Apparently my hubby said that he couldn't tell that I couldn't remember her. Losing my mind and bladder control..... the joys
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Boy, do I hear you! Can't sleep even though I took Tylenol with codeine. Still have pains throughout my body. I went out for the first time in my wig today and felt so weird. Could barely walk. Went home for the rest of the day. This is ROUGH! Bladder control? What's that? Can't think or read.
Can't watch tv. Just existing. And the look on my husband's face says it all. He's scared. He stays away. Just as well, I have nothing to give anyone. Hopefully things will turn around tomorrow. Last time it was 3 days of Hell and tomorrow is the third day. Hard to believe this will pass.
I mentioned to my husband that I had 102 days to go. He was shocked, thought I'd only go through 3 infusions not 6. I need my CT scan next week to determine why my tumor markers went up. They say it could be from diabetes, my sugar is very high from the steroids. WHAT a mess!
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Hey Ya'll! 3 days after round 2. I finally went to a friends house & she shaved my head. That was rough but it's done.A lot of tears were shed.So, I ache , alot. My neck feels swollen. My glands maybe? No fever though. Should I call the doc?
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Merg, congrats on taking the plunge to the bald side. I know it's hard, but, hopefully, you will feel better about it soon and your scalp should be happier. I have found a lint roller to be my best friend the past few weeks to keep those short hairs after the shave to stay off my face.
On your aches and swollen glands I think the aches are normal with no fever. However, with your swollen glands and unease I would recommend calling the doc office. That's what they are there for and will provide you peace of mind or a recommendation on how to handle.
Timbuktu, I wholehearedly understand your husband's reactions. I am facing similar. I think the chemo phase is harder for them because there is no hiding from it. It is very visible 24/7 and there is very little they can do to help us. They are scared and my husband finally admitted recently how anxious he had become trying to get through this. This disease impacts our entire family. One day at a time. Ps. I also found my first outings with the wig more difficult than wearing a scarf. I got wonderful compliments on my new hairstyle, however, I felt like such an imposter. I need to stop qualifying with every person I see that mentions they like my hair that I am wearing a wig. The world does not need to know, but, I can't help myself!
Clarrn, probably a good thing you can't remember the name of the person you saw at the store. What kind of person asks that kind of question??? You look beautiful bald. Your eyes pop!
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Clarrn - I agree with mmtagirl, who asks a question like that? When I read that I literally jerked my head away from the screen. Good thing you don't know who she is.
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Clarrn, you look beautiful! My buzz cut is too long and I really need to bite the bullet and get rid of what's left. I guess I need to buy an electric razor this weekend.
Walking to work this morning a woman came up to me and said, "I love your hair, it's the perfect color." Instead of hemming and hawing or explaining that it's a wig, I just said, "thank you." It gets easier to "lie" with time, I guess.
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Clarrn - agree with everyone, you look beautiful. Shame on the unknown co-worker.
Can sure relate to everyone with the feeling sad/depressed issues, and the concerns of our caregivers. My husband has been great, and I try really hard not to snap when I get "Are you OK?" for the umpteenth time in a day. It helps a little that he went through open heart surgery in October, and our roles are now reversed.
This whole hair thing is a lot more annoying than I expected. 4 weeks past the first treatment, and it still won't all come out. I wanted to avoid the zombie look with little wisps and clumps, but I am rockin' some of that. Finally took a razor to parts of my head, but still have some left. Ughhh.
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Ok - clarm - you rock the bald look!! but...I am sure I am not the only one noticing the placement in the picture of the house decor - I think you are sporting one really cool spike do!!!
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Yes, Linda, I thought that was brilliant also. Made me think of "Wilson" in "Castaway".
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Random acts of kindness still exists,
Just got back from the grocery store with my daughter. We both had our carts. She for her camping trip this weekend and me to get my groceries so I can be like Lakegirl and spend a few days at our lake. Had on a short bandana. A young guy in his 30's walked by me, turned around and came back to tell me I was beautiful. I said thank you and told him he made my day. Felt good for this 51 year old!
Then waves of nausea took hold, grabbed a water bottle, got home with the goods as soon as I could, swallowed a Tigran and going to lay down.
In case I am not back on line before I hit the lake house with no wifi and sporadic cell phone connection I wish all of you Americans a wonderful holiday weekend in honor of the brave men and women who have served. For our neighboring friends in canada I wish you a sunny and pleasant weekend with no SE's!
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Lol... I noticed after I took it, but then I cried so it was better than n the blotchy faced ones
thought it might give a few smiles! -
Yesterday I was talking with my boss about the chemo and all. And in the midst of our conversation I said, "You know what? I'm really proud of myself for the way I've been handling all this!" And later I thought about it. Nobody has said that to me as of yet. So I'd just like to say that to everyone here. I am really proud of all of you (us) for the way we're coping and handling this shitty situation. People should say that more, instead of saying sorry, how are you feeling, think positive, or asking crappy questions. Just sayin'. Day three since third infusion and it's going better than last time. It's probably the addition of drugs. I have my moments, but they are not constant as they were before. Have a great Friday, friends!
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Good morning! or at least I am trying to make myself think that way. I just wanted to put it out there that all of us are strong beautiful women! People suck and people rock it depends on the person their mood their lapse of judgement or clarity of mind in any given situation. So, when that negative thought hits your brain - go out in the sunshine and smile at God, watch a funny movie, remember your child's baptism, your wedding day, that party from college you'll never forget. Whatever positive emotion or feeling you can draw upon to bring you back to the strong beautiful fighting ( kill those f*^&)%$#) woman that you are!!!!!!!!!!
Call the nurse or the doc when the thought crosses your mind whatever the reason
Hug your hubby as much as you can and tell him you both will be fine
Walk when you can
Rest when you can
Party when you can
When you can't...Go back to the above thought provoking paragraph
Lots of love Ladies
Happy Memorial Day weekend!
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all of ur comments are do inspirational!! So what have I done so far? Cleaned the bathrooms. My hubby text me and asked why. I never did it before the cancer ! Lol I said because I can!! Lol
To my us friends - have a great Memorial Day weekend! Always thinking of all of the men and women who sacrificed their lives in the last present and those who will do in the future. My father served in the royal Canadian engineers in ww2 and was just about to be shipped off to war from Halifax when d day came
We all face unknowns in our lives and I am blessed to know all of you so that we can share cry laugh and love!
Keep sharing your stories and pictures! It makes it do much easier!!!
:-)
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Yep. You all make my day. THANK YOU!
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Good morning and happy Friday, ladies! Starting Day 3 and feeling pretty good although starting to feel a little tired. Vision is a little blurred like last time, but without the white-ish filter like last time. Food starting to taste a bit wonky.
clarrn: You rock the bald! I love the placement of the background spikes, even if it was accidental.
And that coworker of yours? How inappropriate. Sheesh. I guess people just don't know what to say to us, eh?Timbuk2: Rest and you'll feel better. When I couldn't sleep, I'd just lay down. It helps. And drink fluids. Flush this crap out!
merg: Call the doc. It'll ease your mind.
mmtagirl & EverForward: I had a neighbor compliment my wig ("nice haircut!") on a walk the other day and I simply said "Thank you."
I didn't want to explain the whole cancer/chemo/wig story. I figured it's ok to keep it simple & just accept a compliment. She might be confused next time I walk by with a different wig though! SharonDe: I too have some hair left and thought it was ALL supposed to fall out after the 1st treatment! What's up with that? My MO said it was all going to fall out on day 14. Oh well. Maybe day 14 after this 2nd treatment the rest will go...
Have a great day!
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Clarn...you are rocking the bald and look great!!! I would chalk up the not remembering someone's name to there is only so much info a brain can hold and something had to go!!!
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Hi, i also started Chemotherapy on April 29, i'm coming up on my 3rd treatment May 27, n when i say i have been up n down with feelings dealing with so many side affects, i just lost all my hair n wanted to scream so greatful that i have people to talk to about what I'm goin through n feeling i have 5 more treatments n I'm just trusting in GOD FRIENDS, FAMILY SUPPORT GROUPS TO HELP ME THROUGH THIS.......
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Welcome, Latisecannon. Sorry you're going through this. I know exactly what you mean about the ups and downs. I'm not normally an emotional person, but I've done a lot of crying since my diagnosis. And then I have days when I know I'm going to come out of this even stronger. And then I cry again. There's no controlling it.
Today at lunchtime I took a stroll along the National Mall and it was WONDERFUL. A little fresh air and sunshine is an amazing drug.
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welcome!!!
I too have my up and down days! This past weekend I cried a lot but my 91 year old mother says don't worry until you have to and that day might never come
A mother knows!!!!
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Football: that is awesome advice!!
Everforward: What a great place to walk! I love DC!
Clarn: If it makes you feel better about your co-worker -clearly there's a good reason you didn't remember her name - your brain is trying to protect you
, I was out yesterday with the scarf (sometimes just don't feel like dealing with the wig), and a complete stranger, do you have cancer? me: yes. Her: my aunt had cervical cancer. And then she proceeds to give me all the gory details of how it didn't end well. I don't get people at all. I wish I would have said thanks for the pep talk. LOL.People! Luckily everyone isn't like that!!
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Hi all!
Clarrn - You are so beautiful! Who needs hair? Lol
Mikishelley - Thanks for the inspiring post! I needed to hear that today.
Welcome Latisecannon! I know you will find support on these boards. But family support means a lot. So glad you have that!
Had a bit of a scare last night. I found a lump in my breast while I was showering. Needless to say, I had a mini meltdown. I was actually gad for once, that my DH wasn't home. I called my BS this am, and he said he would fit me in this morning. He felt it too and did an ultrasound. It is a small fat necrosis. Phew! Total relief. He assured me that I have nothing to worry about. He also told me whenever I have a concern - to call him and he will see me. I am so grateful to have him in my corner. Now maybe I will sleep tonight! I am dragging more than usual today because I was up most of the night imagining the worst. Got a phone call from DH today and he is coming home a few days early! More good news!
Feeling a little teary today thinking of my son who is currently deployed. Wishing a safe return for all who are serving in our military.
Wishing a safe Memorial Day weekend to all! Hugs, lilyrose
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lilyrose thank you to your son for serving!
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clarrn - you look fabulous, darling.
Mikishelley - thanks for your words. I so need them today.
I had my third treatment today. Found out I have a bone met and a lung met. Rough day. Very tearful.
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Golfinggirl-
Rough day is an understatement. Hugs and shared tears. ♥ We are in your pocket.
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lilyrose - another thank you to your son. Glad you got your concerns answered by your BS so quickly.
latisecannon - you'll find lots of support here.
Golfingirl - more hugs and support.
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Golfinggirl - you did have a rough day and I send you gentle hugs!
Mikishelly - thanks for your inspirational post - I need that today - having a tough one here - just feeling so tired - Day 3 afternoon ughs.
Footballnut - my bathroom is dirty - what time you arriving?
Latisecannon - welcome
Speaking of baldness - went to get the mail today with nothing on my head and my neighbor was outside and said - wow you got a nice head for an old girl LOL She is about 90 herself and has no idea I have BC - but she did make me smile.
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LatisseCannon - Welcome! This is a great group of ladies to lean on and listen to.
So ladies as I am nearing the end of my chemo I am now looking into my exchange surgery. It is coming up fast. I have had some issues with my tissue expanders, and I am now becoming a worry wart about the final exchange and some sort of "lap" work that has to be done. A few lil prayers would make me feel a whole lot better.
I am beginning the ritual bone pain after my Neulasta right now too. I took my own advice and went outside and enjoyed some sunshine, but it left me wanting more. I realize I miss my "life". Just wish I could remember exactly what my life was before. Oh well the hubby and I are going to find a funny movie to watch with our grandson. Have a good night ladies!
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Mikishelley-woo hoo - almost done with chemo!! I envy being able to say that - all I can say right now is 1/3 done - sounds better than 4 more lol
Just in case you don't know that it exists - here is an "exchange" thread
https://community.breastcancer.org/forum/44/topic/...
maybe you can find some comfort or help there with your concerns.
I wonder if anything will ever really feel normal again? I think we will all be finding a new normal - maybe a better normal? I hope so for all of us
I have felt not so great the last 24 hours - felt ok in the am yesterday but by the afternoon I had been visited by the dementors from Harry Potter and they are still with me - sucked all the joy and life out of me. I am running a slight temp - only 99 right now but I usually run low so a 99 is more like a 100 to me - keeping an eye on it. I will say on a positive note that my neuropathy does not seem to be as bad this time as the first time - hopefully that 15% reduction on my carbo will hold it at bay. Chemo just sucks ya'll!! Sending you all gentle hugs!
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Get lotsa rest, Linda. Chemo certainly does suck! Hope you feel better soon.
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Linda, I think the third afternoon is definitely the worst. I was holding my own pretty darn well until yesterday afternoon too. Ugh. And next infusion, the third afternoon falls on a grand retirement luncheon for my boss which I must attend
. Oh well. I am just darn happy to know I am half way done now, with 3 more to go. Hallelujah! Today I'm hoping to muster up the strength to participate in a NON GMO protest in front of my local mall. I really believe all the pesticides in our foods have contributed to our cancers and want to do my part to hopefully educate some others about that.
Hope everyone has a lovely Sat. and if we have SEs we need to pamper ourselves and stay proud, strong and inspired.
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Good for you LongIsland!! I agree - I think the GMO's and all the crap that's in our cosmetics. I recently found this app "Think Dirty" that ranks the toxicity of what's in the cosmetics and personal care products. It is a database put together by a breast cancer research organization. I tried to shop at Target with the app and actually gave up, because almost everything is a "10" as in most harmful. Will try again sometime, but I think it's at least good to know. I am trying to educate my teenage daughters about it too, because although I don't have the BRCA gene, I think they are a higher risk now that I've had this, so hopefully they can do some preventative.
Linda: Hope you're feeling better today!!
Take care all!!!
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Hey Ya'll, Happy Memorial Day weekend. I just got up. Rough night.
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It is very upsetting, how adulterated our foods and cosmetics are. My dil is a dr and very up on these things. She bought soap from Whole Foods, thinking it would be safer. Turned out that the soap had bacteria growing in it. So rather than washing herself and her children with chemicals she was washing them with bacteria! Hard to make your way in the world today!
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Linda 505 - I am right there with you. Every muscle in my body aches, my blood pressure is so low I have to have help getting back and forth to the bathroom and the bone pain kept me up most of the night. Sore throat and mild fever 99.9. Gotta keep an eye on that. Looks like a long day. I have spoke with some on various forums about the reconstruction, but you gals are "my group". I guess I'm most comfortable with you all.
LongIsland - Good for you! I am so happy you are able to go! You must be one of the strongest ladies on here. I'm a little jealous, but I am very happy for you and grateful someone will STAND UP!
Everyone else - I hope the day goes well! Tuesday group I know we are all feeling crappy so I'm mustering up my joyous sunshiny thoughts for all of us!
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Golfingirl - Just read your post and I am sending you warm healing vibes. Don't ever forget our motto "die f#&@*^$# die" You too will make it through. This is another obstacle you will climb over! Warrior women like you will always succeed.
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merg - you are looking good for having a rough night. I slept until noon today, so you were up before me!
Soooo tired, with a slight temp, but sounds like I'm not the only one in this boat. Hoping everyone feels better soon.
Longisland - good for you, standing for the causes you believe in, even when you're not feeling the best.
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My yahoo horoscope for today - interesting
- You're fighting against something or someone -- and you may not understand exactly why you're so upset. Just go with it, because sometimes you need to see battles through to their logical conclusion.
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There is something I can only call the "life force" that is returning to me today. The chemo sucks it right out but somehow, a miracle happens, and the body fights back. I cleaned my kitchen! I read a book! I was interested in a tv show. It's the life force returning!
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great horoscope, mickishelley. Glad your life force is returning, Timbuktu. That's a great description.
Realized I hadn't actually posted a baldie photo. Cause, I'm still not bald. I have fuzz on top that I can pull out, but so far doesn't come out on its own. Very attractive! I know I am not a beautiful baldie
and that's ok - it's better than I thought it would be. The brown spots are sun damaged areas that the chemo is actually shrinking. The mutant right eyebrow is leftover from a previous skin graft. 
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Sharon - I have the same hair problem those lil buggers just won't come out. I would love to have the fully bald look! LOL
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Longisland - Good for you! I am anti GMO and and anti Monsanto. Sick of all the pesticide crap and genetic engineering of our food.
My dad always had a huge garden and grew organic before it was popular. He had some of the most creative ways to keep pests at bay. Learned it from his mother. I had no idea how much I would miss eating straight from the garden! Anyway I try to buy organic whenever possible.
Merg - you look pretty darn good for someone who had a rough night! Hope things get better soon!
SharonDe - I haven't posted a baldy pic of myself yet. Two reasons...one, I don't know how to (I'm technology challenged)...and my head is covered in baby fine fuzz! I look ridiculous. Trust me it's not an attractive look at my age. Lol
Here's hoping you all have a great weekend! Hugs, lilyrose
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Well girls, thanks for the kudos, but unfortunately I didn't make it to the protest. I was feeling like I might make it this morning, but then things took a downward turn and I just had to nap to escape the SEs. A good friend did go, and I did my best to encourage my local facebook friends to go, or at least drive by and honk in support. I am glad many of you mentioned your organic and non gmo lifestyles. It's funny I had started the switch over about a year before my diagnosis and am now of course even more strict with what I buy and eat. This chemo kind of makes it hard, but on good weeks I do well and intend to fully switch over as soon as the chemo is done.
I am now convinced that days 3 and 4 are the worst. And I am planning on feeling better tomorrow! I can sort of feel the gross chemo fog lifting this evening so hopefully I won't be disappointed tomorrow.
Sharon you are absolutely adorable. And way to go on the chemo shrinking your sun damage. Finally something good comes out of our misery, huh?
I'm off to have a big bowl of unhealthy ice cream. Chemo week anything goes. Love you girls, hang in there!
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You'll definitely feel better tomorrow. And coincidentally I had a big old hot dog and french fries with ice cream for dessert before reading about the benefits of a low fat, plant based diet for cancer patients. I'm glad I indulged but tomorrow will be a better day!
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Also finding today the hardest one yet. Cranky for sure and my little one has been running a fever for 2 days. All she wants is mom so I have donned a mask and am praying to escape the sickness. I can feel my trunkal lymphedema kicking up again and it makes me discouraged. Maybe ice cream is in order
Onto a better day tomorrow ladies! -
Chin up! It is not that bad. Sleepy on the chemo day, but the rest of the week OK. You might not lose your hair after all. I am still in the first half. Good food and listening the body helps.
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Good morning! Just read this article and thought you all might like it as well. http://www.iflscience.com/health-and-medicine/don%E2%80%99t-believe-hype-%E2%80%93-10-persistent-cancer-myths-debunked. As much as I embrace all the natural and organic opportunities to increase my health and wellness, it is sometimes daunting to hear all the negativities associated with conventional treatments, and this article just made me feel better. The best advice I got was from a friend who said, "You've really just got to embrace both schools" which is what I'm trying to do.
I have been up since 4am since my little friend Jack is afraid of fireworks and had to sleep with us last night. He was ready to get up early today and I was on board with that. Hoping for a great day of gardening and whatnot - really just normalcy, lol.
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I've concluded that in a 3 week cycle, I have about 10 bad days and 11 good days, give or take. Not too bad. But on those bad days, it's hard to feel like it will ever get better. For those of you in the bad day cycle, it's okay to feel crappy and cranky and not leave the couch. Then when the good days come, take advantage! Yesterday was a beautiful day and I did some "normal" errands and got a massage. Today I'm going for a gentle hike with a friend. And just a few days ago I was wondering if I would ever feel healthy again.
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I agree with ya'll. I woke up feeling a little better. 4 days post 2nd treatment. My scalp still is sore.Anyone else? My satin pillowcase isn't great because my other pillow keeps sliding off of it. Have an easy day ya'll.
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Quick ? What do ya'll put on your scalp? Mine is very sensitive. Ok, it hurts.
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Hey Merg, I am putting Coconut oil on my scalp - seems to make mine feel better. I feel better today - ran a low grade fever on and off all day yesterday and that seems to have lifted so i think I am on my way back up again - hopefully. Day 4 seems to be my worst day - at least for two cycles. If I can just feel 50% for the next couple days that will be better.
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I just want to say thank you to all you wonderful ladies for being so open about what you are experiencing. I had joined this thread in April when I thought chemo was first. I ended up triple neg and elected to have the lumpectomy and SNB first to get it out if me!!! I have my MO appt on Thursday, so I will be starting in June. I will keep checking in here to get a heads up on what's coming!
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Hi Mompy. That's what I did. I think it's a great plan. Did you get your surgery and lab reports back? I came back with one node infected (the 1st node) but the following 3 clear. I feel good knowing it's "out of me" and look at the chemo and rads to follow as serious housecleaning to make sure none of the little f$*&#ers escaped. Have a great day!
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my hair still hurts what little I have left. I have been lint rolling it. Yes I look ridiculous but it's helping get it out instead of the stabbing feeling.
So Tuesday I am back in the chair. YUCK. I can almost taste the adromycin
already. I am hoping that number three doesn't knock me down too much. I think the hardest part is once I feel better I feel like I am waiting forever for the next treatment. Hoping for a drama free week with the neulasta shot making it to my house on time. Than 13 days last last AC. ! Clarrn I hope you and you little one feels better soon.
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SN clear!!! Clean margins!! The rest of the report I haven't really looked at too close. They are hard to understand! I will have to remember the coconut oil and lint roller!!! Lol
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Good for you Mompy! Happy to hear!
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good news mompv!!!
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Going to the Look good, feel better class today. Do I go without makeup? I am so excited for this. Like giddy...lol. Do you think it would be okay to take my 13 year old daughter along or would she be incredibly bored? I think it's only me and one other person signed up for it so it should go fast.
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Hey Boobie - go without makeup and I think yes take your daughter - she will learn some tips on applying makeup that I never knew. Hope you have fun!!
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today my temperature is low at 97.7. Feel blah. Tired. Dry mouth and not nausous but something close to it. Just under the weather. Yesterday we spent most of the day outside enjoying the beautiful weather and walked. I started feeling this way last night and nodded off during the hockey game.
I want to walk today to fight this but think that I'll just chill. When I feel like this I get all depressed again and start thinking the worst. My last infusion was wed so I too and 4 days out. 4 more to go!
Since today is the ranger game I better find a way to stay awake tonight!!
As for my scalp it's sore in spots too. Some of the remaining hair is very brittle so I'm afraid to shave it. Can't wait for it to be gone already!!!
Have a great day all and here's to minimal SEs!!
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Yeah Football, days 3 and 4 are always worst for me. Yesterday I felt crappy but much better day at day 5. Get your rest, don't push yourself and you will def feel better tomorrow. You better get a nap so you can watch Rangers
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feeling a bit better after hubby rolled lint brush all over my scalp.
Longisland ure right. Rest is needed before tonight!!
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Sometimes it's hard to remember that this is the "medicine" and not the illness.
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footballnut, sorry you are not feeling well. I dedicated my post on January surgery sisters to you a few moments ago.
Not sure how to paste the thread here but go check it out. My chemo brain thought you were on both threads. AC/Dc was jamming and I thought of you. Feel better.
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glad to see some good news, new "faces" and sad to hear some tough times for us. What a road we are traveling together. I wish I could heal each and every one of us. I always say this is not my breast cancer journey, this is a sh🚨tshow. And it really is.
AC #4 down, nurse couldn't get a good vein, used a tender one, actually cried in chair. So happy it's my last AC, on to THP next week after echocardiogram. Am doing Ok on this round, took the full dose of steroids this time- after my last disaster round with taking less I learned my lesson.
Hope you ladies are all doing well. Keep the pics coming- I will figure it out and post my noggin soon. Here's to better health and better days yo us all.
Sandra
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HERE'S TO ALL MY AWESOME BC LADIES!!! WE ARE AWESOME EVERY FREAKIN DAY BECAUSE WE ARE FIGHTING THE GOOD FIGHT AND HELPING EACH OTHER DO IT!
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It's too bad we couldn't put all the pics together into one big pic! I think days 3-4 are bad for everyone. Day 5 starts to feel "normal" again.Everyone looks great even though they might not feel good. All Beautiful! Rest easy Ya'll.
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mmtagirl - tx!
Tx to all! All day ice also developed a dry mouth no matter how much water I drink! Ugh! Didn't have this last time!
Hubby made awesome spaghetti with "lean" meat sauce Mmmmmmmm
I put lean in quotations because I recall asking my nutritionalist if I can eat hamburgers and she said sure as long as it's. " lean" meat! Lol
She wouldn't have been happy with me yesterday!
Now off to eat some sorbet to help with this crappy dry mouth!
Love you all. Tx for bring there for me!!
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footballnut - I've got one of those lint rollers too - problem is, I've been too tired to use it for the last 3 days. Which make's longisland's mug perfect as well.
Whew - I have been down and out the last 48 hours - temp hovering around 100. Temp finally down and I can sit up for an hour. What's with this nonsense? I thought I was 60, not 90!
merg - I will see about making a collage of our pics when I get some energy.
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Aw, Sharon, I wish you the best in coming back into some energy. So tough to feel all drained and then bummed out. I totally relate, and empathize!
Big weekend, MIL came up yesterday, DS and his GF came today from CA, we all attended a family fest in a nearby town. Very lovely to see everyone, but I had two naps already today, and its only 7:15 pm. Hope you all have weekend activities that allow for the rest you need or want. People have been so incredibly NICE to me, I keep being amazed. Here's to supportive families and friends.
Hugs to all, Mame
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Oops, I did bring my daughter to the class and facilitator said they usually don't allow you to bring guests, but it was okay as long as the other lady was okay with it. She was
. I guess it's a privacy thing. It was a nice class and I was impressed with the makeup kit you get. She showed us lots of different wig/scarves options, too. If you get the chance, I highly recommend the look good, feel better workshop!My girls having way too much fun buzzing my head!
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Hiya. Been offline for a couple days, so trying to catch up. I am in my tired days where I just want to sleep (3 and 4 days after infusion day are nap days for me). Heart rate is up to 100 again and temp hovering around 99-100F. Body aches. Trying to take it easy and drink lots of Gatorade and stuff.
LatisseCannon: Welcome. You'll find great support from a great group of ladies here.
Golfinggirl: Hugs
Mikishelly: Awesome you're almost done with chemo! Woo hoo! I'm jealous. I hear the permanent implants are WAY more comfortable than the TEs.
linda505: Hang in there. The dementors will go away soon!
merg: Looking good! My scalp hurt a lot yesterday, too (3 days after infusion) when I lay down. Today, it's better. I don't put anything on it. If I'm not laying down, it's ok.
SharonDe: I think a lot of us still have the little straggler hairs that hung on. Weird, huh? I call it my zombie hairstyle.
I figure it'll all come out soon (maybe 14 days after the 2nd treatment?), so I'm just leaving them alone for now.LongIsland & Footballnut: I agree that days 3 and 4 are the worst. Day 5 will be better. Hang in there.
clarrn: Hope you and your little one feels better soon. I think ice cream is a fabulous idea.
boobieprized: Glad you had a good LGFB event! I enjoyed mine too. 2 of the ladies in my group brought guests and nobody said anything about it. Looks like your girls are having fun buzzing your head! Gotta have some fun in all this.
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Boobiprized!! you rock the bald look big time!!! Your eyes pop!! Couple of the ladies at mine had guests too and no one said anything - must be one of those unspoken rules lol. Glad she got to go anyway and glad you enjoyed it - mine was good and met some nice ladies - one of them is on the same schedule as me so that is nice.
Dementors have moved on for another round lol - energy coming back - I also ran a slight fever day 4 between 99 -100 - didn't do that the first time. I slept most of day 4. Day 6 and feel much better - a touch of D but I can deal with that. Days 3-5 definitely have been my worst days for the first two treatments - 1/3 done!! woo hoo.
Sharon hope your energy returns and the fever leaves!!
Here is to SE free days for all!!
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just walked on treadmill for 40 minutes. Too hot outside. This dry mouth is driving me nuts. Does this pass after awhile? Drinking lots of water etc. nothing helps.
Ugh!
Still feeling tired but have to keep pushing. Tonight is my turn for the look good feel better class. Lol
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Footballnut..I had the dry mouth too....it did get a little better. Keep up with the biotene 2x a day at least. It really helped me and keep up the water...
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Just had words with my daughter. First time since being diagnosed. I guess it's partially my fault. I downplayed everything to keep her from being scared and upset. But now that I'm at post treatment #3 and feeling damn sick and tired of being sick and tired for a week every third week, I guess I'm getting a little cranky and a little less brave. She is going to be 18 in two weeks, so she's not a little kid. I feel bad, but I need her to step up and cut me some slack. I think she'll come around. Told her I don't have the energy to coddle her right now and that she needs to be okay with that.
UGH, CHEMO SUCKS!!!
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Longisland18y - Sounds like you DD is masking her worry too. I think your honesty and request for understanding will be appreciated once she steps back and looks at it.
I can't imagine having to parent through this. My children are long out of the nest and the dogs put up with cranky as long as it is done with a treat and a pat on the head.
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footballnut, have fun! Let me know what you get in your goodie bag.
Longisland, don't feel bad, it's a stressful time for everyone involved. She needs to hear how it really is and not the sugarcoated version. (((Hugs)))
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Long Island, I've been through the same exact thing with my 23 year old. All I wanted to do was protect her from all of this. I spoke to the social worker at the hospital and she pointed out that by not sharing what I'm going through (she's not a child) I'm separating myself from her. If I want a close relationship then I have to count her in, just as I would want her to count me in whatever she is going through. So I've changed. I don't coddle her as much. It's hard. Last night she came home from a trip to California and I was so nervous that she would see my bald head and freak out that I went to sleep in my hat! Old habits are hard to break. But a mother's love is endless and just wants to keep pain away. Your daughter is younger so you feel it even more. It's hard.
BTW, I don't know if her father is in the picture but my husband was awful and supported her immature behavior. I really had it out with him and he's turned around too. Last Monday he actually dragged her down to the infusion room, insisting that she see what's going on. I would never have done that but I was unconscious! They left quickly. But it hurts my heart, in spite of everything, to think that she had to see me like that. Still, her behavior has improved 1000%!
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Hi All,
I haven't been posting for a couple of weeks, but I have kept up with your stories. You are all wonderful and beautiful, and I want to thank you for continuing to share. My second round of AC was really hard. The nausea was overwhelming. I get emmend and aloxi at the infusion and then have zofran and promethazine at home. My doc allows me to take them every four hours because I get so incapacitated by the nausea. I don't get any steroids with AC, my docs office is trying to cut back on them, but I wonder if they would help.
This might be really weird, but I still use my regular shampoo and conditioner. I like the way they smell (luscious) and I think it is helping to keep my head in good condition. You know how we all worried that our hair was hiding a mishapen head or an unknown birth mark. Well, mine was! I have a pretty good shaped noggin, but have a strawberry birth mark on the back of my head. I think it's pretty rare, so I feel like I took one for the team. :-)
Linda, I'm glad the dementors moved on. Also, thank you for that analogy. It is just right.
Brigadoon, you are so kind and supportive.
Mame, I used to live in Maine too. It's so beautiful there. I miss it all the time, even the snow.
Longisland, teenagers are hard, aren't they? My kids are 15 and 12. Hang in there.
Footballnut, lakegirl is right, keep up with the biotene mouth wash 2-5 times a day. It really works for dry mouth. I use the biotene toothpaste too.
Mommyq, I get the thumping heart rate and elevated temp too. My blood pressure also drops, which I think is weird with the thumping heart, and it makes me so dizzy.
Boobieprize, you look awesome. You're eyes are so pretty.
Mscaruso, I have been referring to this ordeal as I shitshow since I first read it from you. It captures it perfectly.
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I have children 7, 15 and 17. The two older are girls and have been decent mostly, except the times where they want something and my naps or treatment get in the way of their social calendars. I eased them into my baldness too - but I love the advice if you don't share what you're going through it will separate you from them. I plan to take them with me one time to the infusion center when they are out of school, just so they can see what that is all about. I don't want to scare them, but at the same time, because my SE's haven't kept me completely sidelined, I think they have little understanding of how difficult it is to keep everything going.
Footballnut - congrats on the Rangers last night! My hubs is from Montreal, so he was pretty upset.
I do get dry mouth quite a bit on taxol too, I chew a lot of mint gum too. I'm not sure that helps but it masks the taste somewhat.Boobieprize - you look fantastic! Glad you had a good time at lgfb!!
Mscaruso - sh**show reflects perfectly what all this is. Bleh.
Take care all! Hope you all get some restful sleep tonight!!
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Thank you friends!!! I feel so much better after reading your words. What I love about our group is that we can take turns being strong for each other, and feel safe being weak & whiny when we need to. -
jhodro I'm from Montreal too. Never got into the habs. Gotta love the rangers and hope that they go all the way!!
Got my biotene mouthwash and toothpaste so all set to go
:-)
Let's go rangers!!
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I think it's an obsession there.
It's the least the Rangers can do - win one for you! -
I have 2 kids one is 11 and the other is 9 and it's hard. I just rreally feel bad for mine because this is round two of Mom feels like crap.
So it's been a LONG two weeks for me. I feel like as soon as I start to feel better I want to go for the next infusion to get it done but I have to wait. It feels like the days are slowly ticking by. SO finally tomorrow is treatment #3 it's also our wedding anniversary which what a way to spend the day. The crazy part is that I will have treatment #4 13 days later. So tomorrow I will be trying not to throw up as they push AC. I get a weird feeling in my port and the taste in my mouth makes me want to throw up. Uggghh.
Does anyone else that is going thru AC still have some hair ?? It's not consistent but I still have hair on my head and body hair still. I am a little shocked because the first round with TCH by the third treatment I was bald. I am hoping that this means I will have some hair growth during taxol.
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Jamieh, I have been through 2 rounds of AC and am pretty much a cue ball with a little gray fuzz. I started with one round of TC so don't know if that makes a difference. Eyebrows and lashes are thinning fast. Start taxol end of June and not sure what to expect there.
I have an 18 year old daughter graduating high school next week. She came to visit me during my first infusion and asked a lot of questions to the onco nurse who patiently answered them all. I think it helped. Her close friends are used to seeing me bald at home now. When a new friend comes over I ask in advance if I have to put my hair on or not. Every single time her answer has been, "it's just a bald head, mom!" She doesn't care. I did put my hair on for the prom date. Lol. It was the least I could do.
I think she is less scared because we talk about it all the time...it is hard to hide it when we are living together as a family and she is a young adult. If I don't feel well, I tell her. She rubbed my head when it was itchy and sore. I wish she didn't have to see her mom so vulnerable...I was always the independent role model, but, this is our life..... And then, I told her this afternoon she was uber cranky and she told me I wasn't allowing her to do anything she wanted for her graduation party... Lol! This IS life!
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mmtagirl: I have the same situation - with friends coming over. I feel like we always have people in and out. I've pretty much left my hat on except for a few that are here most often. It's more me feeling insecure, I think, than the kids! They have said the same thing, it's just a bald head. They have had a sense of humor about it all, so that helps too. I think it's great that your daughter sees you vulnerable too, they need to know that you're human. I've always hidden hard stuff from them, and downplayed this situation at the very beginning, but that isn't necessarily the right thing to do. Now they know the full story, which is very positive considering, so, they are pretty at ease. My daughters have even said that I should 'play the cancer card' more often, LOL. Happy graduation to your daughter!! Did you know there are some scholarships out there for kids whose parents or siblings are cancer patients?
Jaimieh: On taxol, I lost about 2/3's of my hair after week 3, but then it has been growing in on my head, so i have stubble again, just not everywhere on my head - like patchy. And your kids are going to be strong. Every kid has something to deal with, just like every adult does - - this is just our thing. xo
Oh - and one great thing about being on Taxol in Michigan - - the mosquitos finally avoid me!! Woohooo!!
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mmtagirl - Wow, that last exchange should be celebrated! It shows that you are not keeping her from being normal. You must be doing something right.
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Johndro, thanks for the scholarship tip. I had no idea.
Brigadoon, we all have our moments:-)
Ok, girl, I did play the chemo card tonight for ice cream. DH and DD took the bait and went to get us all a scoop. Whatever works! We all knew it was a scam.
Have a great night everyone.
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Mmtagirl...darn...wish I had thought of that one!
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mmtagirl way to pull the card.
Jhodro- I sure hope you are right about my kids.
. They are two wonderful little people. How is the weekly taxol going ?? I start it towards the end of June. Off to take something so I can get some sleep.
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Jamieh, I still have hair on AC. It's sparse stubble, but I kind of like it. My brows are thinning but hanging in there, my lashes too. My doc said my hair may start slowly growing again about halfway through low dose taxol. I'm doing 12 weeks of taxol starting in July. Are you doing 12 also?
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jaimieh: Taxol is definitely not as bad, from what i'm reading as some of the other chemo cocktails. I still am experiencing SE's…mainly: no sleep the day or two after infusion (from the steroid and haven't found anything that works), a bad case of acne (started an antibiotic - but I was prone to that even now in my 40's), some D 2 days after - but resolved with immodium, a constant runny nose (claritin D seems to help), a dry mouth, my taste buds are off (meat is especially disgusting to me for some reason) and fatigue. I try to take a nap a day, even if for 30 min or an hour, and then I'm usually ok energy-wise. I'd say I feel better than my fears of starting chemo, but not definitely like normal. I have blood work every week and my numbers have stayed pretty constant so fortunately, I haven't needed Neulasta. I also take Herceptin and that's all I'll have this coming week/tomorrow. Hope this helps. Best of luck for you too!!
mmtagirl: anything for ice cream, that's what I say!!
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blueberry I will be on the 12 taxol's also with some herceptin and a side of perjeta I am in for a LONG haul of treatment.
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It's just a bald head! What a great attitude! I wish I could feel that way. I find myself in constant hiding and then i wonder why? Am I ashamed? Am I afraid of scaring people? I keep buying different hats and scarfs looking for one that will not scream "chemo" on sight. But I haven't found one. Every time I see the baldness I think "death" and that people will pity me. I see it in my family's eyes. I want to stay inside and avoid seeing it in anyone else's eyes. But it's beautiful outside and I need some relief. So I wear a hat until I'm in my car and off my block. Then I whip it off and let the wind whip through my wisps.
I can't accept this is happening to me. I've been through chemo before but I held onto my hair and looked the same so I was ok. As long as no one knew, as long as I looked normal, I could pretend I was normal.
But there is no denying this bald head, these scarves and hats, and what they symbolize. I'm really not a vain person. I don't give much thought to appearances. Yet this thing has gripped me.
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Timbuktu- I hate the bald. I work with corporations and kids so I can't really let myself go topless. It's hard to explain to someone that has no clue how people view you and the pity. Oh the damn pity looks. I get angry about the pity looks. The thought of growing my hair back makes me want to hide for the next two years. I had a mullet for about a year last time. I am trying to embrace it but I can't help it somedays I am just pissed and sadly today is one of them. I figured the more I sleep tomorrow the better I will be. It will be one day closer to finishing up chemo set one.
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I have to agree that the worst part of chemo and being bald are the pity looks. For me, the 24/7 visibility of chemo treatment has been the hardest. There is no place to get away from it, ever. I think that is why I had to find my safe place with going bald and find a way to normalize it or I would go crazy. It hasn't been easy. And, as I write this, I dread finishing my coffee, cleaning up and deciding which wig to wear to work today knowing I will get at least one comment from someone complementing me on my haircut or telling me I look good in the wig. Even best intentions don't allow for anonymity.
Jamieh and Blueberry, looks like we will all be starting taxol at the same time this summer. I will be on low dose 12x, too. I live in Michigan, too, and was happy to hear from Jhondro that the Mosquitos stayed away. I will take any liver lining that comes my way.
Have a great day, everyone!
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You guys are so right about the bald head being the symbol of being sick. I could also hide it before that. For me, and I may have said this earlier, I did the surgeries ok. I was just matter-of-fact, but then the day I wig shopped pre-hair loss, I lost it. Then, my MO said, oh, with taxol, you probably won't lose your hair. Then I did in week 4. Then I spent the week losing it again. And got a buzz and felt better. But going in public, it's such a struggle. I hate when complete strangers approach you - and I have had this a few times - to ask - do you have cancer. Or at the elementary where my son goes - now everyone has to know and people are all curious. People have asked what my chances are. People have told me their cancer relative horror stories. And like you guys, people compliment my hair or hat, depending on what I feel like wearing - I know they mean well, but there is pity. Maybe it's that they see us as too close to them, and it hits home that it can happen to anyone and they are afraid. Who knows. I just don't want that to be my only conversation, and especially not with people who are so clueless most of the time (not people that are close to me, these are casual acquaintances, mostly). I still am the same person with thoughts about issues and interests. When you have cancer - that's all the public seems to see. It's very disturbing, and, I feel terrible for kids who have to endure the public interest.
On the positive side, going for H only today. My break week - gonna try to really enjoy it!!
Happy Tuesday!! -
I think the hardest part for me is not that people make me angry but that I remember how I used to feel when I saw someone who was bald. I assume that they will feel the same way. My heart would sink. Yes, I would feel frightened that it could happen to me. I would question God and get angry that there wasn't a cure. And I would see "death" and "suffering" and could not see beyond that, to the person or the hope that this would make them well. I don't blame anyone for being horrified because I was horrified. I think it comes from a good place, in a way. It's empathy. There but for fortune and all that. But I can't help feeling like a leper...I know what they are feeling and why and I hate to be the cause. So I hide.
Reading these posts has helped me, I think. Wigs are the way to go. My husband loves my wig. But it gives me a headache! I think its the closest look to "normal", though, so I'll have to get used to it. I feel as though I'm wearing a mask. I'm afraid it will slip off. I really hate having anything on my head, always have.
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I went to a look good feel better class last night. 2 hours. The first hour was all about the makeup and application - the 2 nd was about wigs and scarves
So here I am in a group of approx 12 women - the majority fighting breast cancer when I hear the idiot beside me saying that she's so thankful that she's not triple positive as it's a death sentence.
Hi there!!
As I always have to say something I turned and told her that I am triple positive and that I'm going to rock this
Oh came the response. I'm so sorry
Whatever! Here we are sisters on a journey yet that does not change who we are. Of course later she went on to volunteer to model the wigs and put on a show about not wanting anyone to look at her because she'd look stupid and how bring bald will make her look like a real cancer patient
Good one again as there was a beautiful woman in the group who came to the class bald. No wig. No scarf. Nothing. And she rocked!!
The class itself was okay especially for someone like me who for my whole life only pit on black eyeliner and eyeshadow. Concealer? Foundation? Pressed powder? Huh ? Lol
They got me to put on lip liner and lipstick. That was it ! Lol. They tried !! Lol. Overall the class was very good
I would say that we got approx $2-300 of high quality makeup, cleansers and creams including suntan lotion. The volunteers packed it up in a box before we left
I don't see cancer as a disease. I view it as a condition. I've been fortunate to live 50 years with minimal health issues. My hubby has been on meds for colitis for 15+ years now. Like breast cancer there is no cure. There's no cure for the common cold either. There's no cute for diabetes and lots of other things. Yet we putter on
So I try to view breast cancer as a condition that I will have to live with. It's not a death sentence and hopefully I will have a good quality of life like many many women do.
My hubby told our neighbour about my cancer yesterday. While he said sorry he added that his family knows cancer including breast and that all are survivors. He also mentioned a woman up the street who has also beaten breast cancer
When my time comes hopefully many many years from now ( I have plans until my 80s), all I want is not to die forgotten or alone
At times I have visions of being hooked up to machines and tubes not being able to eat or remember my name. If that happens hopefully the meds will be good and the rock n roll will be cranked to 11
Have a good day all!!
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Footballnut, Get those last wishes written down and filed with your things, and specify the bands you want to hear! If you last for 35 years, the fam might not remember who your favorites were. I am inspired to think about the way I want to be treated if I get quite ill at the end, get that written down and in a safe place, then forget about it.
I had a good experience at LGFB, I was the only patient there and the beautician was a total sweetheart. I kind of like makeup anyway, but this really felt above and beyond, like a real perk.
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This goes under the category of stupid people comments.
I never wear make-up. Can't stand the stuff.
I went out to lunch with a friend. She looked me straight in the eye and said "I would love to see you with some make-up on. Just lipstick and blush would be great."
Anyone smarter than I with a good comeback? lol
I am sure that my color is not as good as it once was. Chemo isn't becoming. I bet she thought she was "helping" me. But I spent days trying to come up with a good comeback. Any ideas?
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Timbuktu my suggestion is putting on some kiss makeup and going to see her ! Lol.
I remember when I was a kid I asked my history teacher if I could wear makeup to class. He said sure. I came to class dressed as gene Simmons!! I think I was 14 then
Mameme you are right. I should write it down. In 35 years I'll forget the bands too! I'll forget in 5 !! Lol
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LOL! I wish I had the nerve!
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I am thinking that - "I understand your curiosity and if you give me your number I will call you when I have anything I want to share."
Timbuktu - "if I wasn't a natural beauty I would have developed that skill. Good thing I didn't have to." (With an innocent smile)
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Timbuktu: wow. That is so not the right thing to say. I really will never, ever understand people. I love brigadoon's comeback! I can never think of them in the moment!!
Footballnut: I again, can't understand people.
If I could have any super power it would be the ability to mute stupidity.
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Wow - lots of crazy things people are saying. The gal at Footballnut's class takes the cake. Sounds like someone with no filter and a need to be the center of attention.
I made a couple of insensitive comments to friends who were helping me sort through early stages of my diagnosis. Makes me cringe now, but also helps me to realize how someone unfamiliar could easily say the wrong thing. Doesn't excuse the just rude comments like "how long do you have?" or "what did you do to get breast cancer?" ...
Timbuktu - I don't wear makeup and don't intend to. People can take me as I am - or not. I like Brigadoon's comeback and Footballnut's idea of the Kiss makeup.
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after sitting on my ass in our kitchen since 10 THIS MORNING I finally forced myself to walk40 minutes on the treadmill. So tired today!!!!! Still have done dry mouth and feel like eating junk food. The thought of eating healthy makes me feel sick today!
The idea of a small piece of lettuce with a bowl of French dressing and croutons sounds great to me!! Lol
I better be able to keep awake for the hockey game tonight!!!!
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Forty minutes! Impressive!
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Footballnut..40 mins on the treadmill. That's awesome. I have pretty much stayed in a vertical position today. I even layed down on the ride to get my Neulasta shot. This is so not like me. Round 3 has been tough on me. I have had sick kids and fighting off a cold as well.
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40 minutes on the treadmill!!! Excellent.
And, I was so proud of myself for staying awake all day (so far) - mostly in a prone position, and walking the dogs a few times. But, hey - progress is progress.
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Better late than, never, right? Last week I completed the 4th of my 8 chemotherapy infusions, but I arranged to meet with a new oncologist tomorrow. It is liberating!
I'm sure some of you have read about my waiting room nightmares with my current MO--my appointments usually last about 3 hours, with the vast majority of that time spent half-naked in the exam room just waiting, and waiting, and waiting. I realize that every single time I have an infusion, I end up posting these really angry CarbringBridge journals detailing all the waiting and the incompetency of the day, and I am sure the negativity is eating away at my "cure." When I first met my current MO, I thought he seemed competent and smart, and convinced me I'd be getting wonderful care. But as my treatment plan has unfolded, I find his nurse is incompetent (she forgets my appointments and lab orders...the lab techs cannot stand her), and the doctor himself is full of excuses when I allude to the fact that I wait three hours for my 15 minute pre-infusion appointment every.single.time. Yes, the excuse has been made that there "were really sick patients that needed to be tended to," but every time? I feel like I'm the "easy" patient who follows the rules, takes care of myself, and I'm the one they can so carelessly put on the back burner every.single.time. I've had enough, and I'm hoping my appointment tomorrow guides me in a more positive direction.
Has anyone here ever thought of or actually changed doctors midway through your treatment? I'm worried that if I change it up, I might have delays in treatment.
Tomorrow I plan on 1, asking for the oncologist if he agrees with my treatment plan (because I secretly wish he'd say dense dose Taxol is NOT what he would suggest), and 2, even if I'm heading into eight more miserable weeks of chemotherapy, I want to be in a place that is efficient and caring, a place where I can feel positive about my treatment.
It's so nice to see all your photos...I wish I was brave enough to post a picture of myself in all my bald glory
Thanks for being such a wonderful inspiration, you beautiful girls! My SE's have been terrible...the fourth round of AC did have cumulative SE's, as they are worse each time. I hope and pray that Taxol is kinder to me. Although I'm set to do dense dose, which I suspect is more "hard core" than the weekly version. I'm excited about tomorrow, hopeful for the first time in a while.
Hugs to you all!
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SharonDe- I am proud of you too. It sounds like you accomplished enough today. You walked the dogs.
Swissmiss- I wish you the best of luck with the new onc. I find myself getting aggrivated having to wait so long for each appointment. I like my onc but wish the scheduling was a little smoother.
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Swissmiss - When I first started down this road I was going to Dana Farber Cancer Center in Boston. They have gazillions of patients every day. There were lines everywhere and, yet, each department was efficient and friendly. I never waited more than 15 minutes for my MO and even less at the labs and testing centers. There were people there far sicker than I and yet I always felt like the most important person they were seeing today.
I have moved on to a local MO who is working with my DF MO because my treatment is now standard and much easier to get close to home.
I think you are being misused and I hope you can find a solution that gives you peace of mind and more time to concentrate on the times you are not in medical offices. Good Luck.
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you know - what I hate most about being bald is the inconvenience of it all. I don't have the gumption to go without wig, and it's getting hot. Being bald is not only a public reminder that I am sick, but how inconvenient this while damn thing is. The doctors appointments, the worry, the surgeries, the days spent feeling like crap. The baldness is the icing on the cake in my opinion.
Seems like we are all feeling things at the same time! And the triple positive comment! Wow! And to ask to see someone so weary from treatment to wear lipliner! I'm afraid my response would have been kiss my grits!
Jamie- think you asked- I have stubble with AC. It's nothing worth showing, but again, maybe it will grow back a little once I start taxol? Who knows?
Trina - good for you for switching. Not easy and you did it! And from what my onc says- taxol has less nausea, and in my book that's a huge plus. Also means less steroids, from my understanding. And for those of you who mentioned- I too can "taste" the AC- I always thought it was the cytoxan- makes me gag to think about it.
Felt good this morning and went to yoga class, came home and crashed. Been useless all day. One day at a time.
When do we start feeling like we can come out of this and live again?
I miss the old me. One day at a time.
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wissmiss, I think you are doing the exact right thing. If more people demanded good treatment there would be more of it. I live in Chicago but flew to New York for my surgery and treatment. It's a coincidence that you are writing this today. I just got off of the phone. I'm being treated locally now and I can't tell you how many errors I catch. It's not right. They are sloppy and careless. At Sloan they are the ones to catch the errors.
I was just making a follow up app at Memorial Sloan Kettering and the clerk was so fast, so efficient she took my breath away. Before I could find my app in my app book she found it and told me what to do. It's as though everyone there is on a caffeine high. Then I talked to my local hospital and she was so clueless!
She told me I hadn't seen my onco since Oct. I told her I knew I had because my hysterectomy was Jan 29 and I discussed it with him. She insisted that I had not been there since oct!!!! How stupid can you be?
And these are the people I am charging with my life?
Twice they have given me an iodine drink when I've told them repeatedly that I am allergic to iodine.
I feel as though I am on my own. The first infusion they didn't tell me to take the morning steroids.
I called the day before to make sure and the dr didn't mention it either. When I went in the next morning the nurse was angry at ME for not taking them. She called later and told me she had told me. I have her message on my answering machine, no mention of morning steroids!
I'm sure we all could go on with these kinds of stories but bottom line, you have to watch out for yourself.
Sloan isn't perfect but SO much better!
I have a CT scan in the morning... prayers appreciated!!!
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timbuktu...wow, you DO know what I'm talking about. I am sorry you have to deal with this type of stuff...it's so hard to concentrate on healing when you are constantly questioning if you are getting the best care.
My family only recently moved here, to the middle of nowhere, near Tulsa, Oklahoma. We moved here from Minnesota, where they offer world-class treatment at Mayo and the U of M. I question each day if I should have just bunked with my sister and her family while undergoing treatment back in Minnesota, instead of staying here in OK. The bottom line is basic competence. I don't think I have a complex diagnosis, but there are so many things that have been missed, it makes me nervous thinking my LIFE is in the hands of these people who just don't care if they do a good job. I had my initial ultra sound diagnosis of my tumor back in December, and didn't even get a an appointment with an oncologist until the last week of March. I often sit in one of the many waiting rooms I spend time in, and am convinced I am the only person in the office who cares about what is happening to me...it's a very frightening, lonely reality.
I may not find what I'm looking for in the doctor I meet tomorrow, but at this point I need to feel I am doing something to turn this negativity around.
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Every time I have had a surgery I have gone on YouTube and watched the procedure. I have always felt more in control and more relaxed about the surgery. Tomorrow I am having my power port installed and I just watched a YouTube video on the procedure. I am freaked out.
Would anyone who has had a port installed please give me some feedback. I was told that they would be using the same type of anesthesia they used to do a colonoscopy. In the video the patient was awake and could feel all the pressure and probing, etc. Is that your experience? Are you glad you got the port?
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Trina, if I were you (and I kind of am) I would go to Mayo! You should not have waited that long for treatment.
When I needed my hysterectomy I called sloan and told them I needed it immediately. The nurse emailed the surgeon and he operated in less than 3 weeks. I am not a naturally aggressive person but I found that the squeaky wheel gets the grease and being polite and patient is counter productive. You are right, you care more about your life than anyone else.
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I wrote this today and wanted to share it here:
Don't Forget
Don't forget about me
I've lost a bunch of stuff
Dropped my inner compass
Crawling through the brush
Reaching out my hand
Sun behind the clouds
Slowly moving forward
Peering through the shrouds
Smile as you hook it up
Kills all in it's wrath
Knocking down the spirit
As it runs it's ugly path
Actions and reactions
Create a sickly haze
Do you even see me
Can you hold my gaze
Did you see me yesterday
Playing in the river
Naked on the shore today
Crying in a shiver
Don't forget that
Life is love
Strength & hope
A peaceful dove
Today's despair
Tomorrow's dream
Things aren't always
What they seem
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Hello - I usually post on May Chemo but have been reading all of your post often.
Brigadoonbe - I had my port put in 2 weeks today. I was put out with anesthesia and it was easy; I was under maybe a 1/2 hour no pain and within an hour I was on my way home, wasn't too groggy either. I was stiff for a few days but never in pain and now I'm used to it.
I had my 1st AC treatment 1 week today and feel great. Fortunately I never got nausea or too fatigued, I had swollen gums abou day 4 days and gargled with water, salt and baking soda which ended that quickly. I kept waiting for the ball to drop but didn't happen. I have been reading many of your post saying round 2 or 3 are far worse. Has anyone felt the same on all rounds of AC? Staying positive that my 2nd round next Tuesday goes as well as the 1st.
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brigadoon I had a port inserted on April 29 the day before my first round of chemo. Mine is actually the same as what they use for a child because it was inserted on my right dude where I have no breast muscle. I was told that they had to put it on the opposite side of the breast cancer
The procedure was truly nothing even though I was nervous as hell
The longest part was the prep. I was in a room full of nurses who prepped me. They hovered me and prepared the area. They taped me down, put oxygen in my nose, put something on my head, sterilized the area. I think that this took about hslf an hour. Then the radiologist came in
I felt a pinch when he injected the freezing. Then he injected a sedative and next I knew I didn't care what he did. We chatted about hockey. I felt nothing
My hubby said that the whole thing took about 90 minutes.
When they were done they wheeled me to an area where I recuperated for spprox30 minutes then I walked out with my hubby and got my bloodwork done using the port
As my chemo was the next day they left the port active meaning that the needle and IV was still inserted. It was fine
I felt a tad sore afterwards for approx a week and it was a bit difficult to get comfortable when sleeping but I don't even notice it now
I do weights and was told that I can swim. I don't feel needles going in Ike out and live it just like I was told I would
I get nervous before any tests and procedures but this was really nothing
Let me know if u have any other questions
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brigadoonbenson...I went under general anesthesia for my port, and I would recommend it. I did the same as you and saw the procedure online and was so freaked out, my anesthesiologist was more than happy to let me sleep through it. Best of luck to you!
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brigadoon: i had my port the day before my first infusion. it was under general anesthesia, but it took total of about 20 minutes. I was in good shape the rest of the day, a little tired, but no problem. The stitches weren't bad (i have it on the opposite side from my lumpectomy, which I guess is required). I have 'emla' cream that I use over the port (even when the stitches were there), and with most of the nurses, I don't feel much of anything. I didn't want the port (another surgery), but it really is a huge benefit. I also had a little trouble sleeping the first few nights since both sides are messed up, but I'm glad I have it. Good luck!!! Oh - I have had a nurse tell me not to do certain exercises, but the physical therapist, the BS and the MO have all said do whatever as long as it doesn't hurt.
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when I had my port installed they gave me MAC anesthesia, aka Twilight. Some people stay awake, but that stuff puts me out completely. It wasn't a big deal.
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Hey Ya'll, Whenever I am at any docs & it starts to take too long I usually get up & open the door. I stand in the door frame & just watch. The nurses ask what's wrong & I just say nothing, I'm waiting. I had one nurse tell me about patient hippo laws & I told her I could hear everything through the walls anyway. I don't know if it hurries them along but sometimes I think it does. It lets them know that I am still here. I was also told I couldn't read my chart after I took it out of the door. It was mine, I kept reading it anyway. I ask for water, I ask for the bathroom, anything to let them see me.
I think Footballnut is a very smart lady.
I get the pity looks too but if people want to help me then I'll take it.
I've been trying to use all the dumb comments to remind women to get their mammos. If they ask about my cancer then I tell them all about it. Too many women have stupid excuses not to get it done.
Feeling good today. Rest easy Ya'll
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I love it Longislandl8dy. Very true.
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Blueberry4: My guess is that our hearts are pumping faster since we have fewer red blood cells than normal, so it's struggling to get oxygen everywhere. I'm a bit concerned about the long term effect to our hearts, but I guess there's nothing we can do about it if we want to kill those cancer cells. And we do!
mmtagirl: Hey, we did the ice cream run last night too! My husband and 10 year old picked it up and brought it back. It was good. We had turtle sundaes. Ice cream seems to be one of few things that still taste right to me with my chemo tongue, so I'm going to keep indulging in it!
Timbuk2: I don't like people seeing me bald either. I guess it just feels weird. At home, I don't cover up, but as soon as I need to leave the house, I cover up with something. Even to check the mail, I put on a hat! I guess I don't want the looks and don't want to have to explain to everyone what's going on. I like my wigs though. They look very realistic, so I wear those when I am going to be out in public for any length of time. I was fearful originally of them falling off, but have gotten more confident since I've been wearing them a couple weeks now, that they aren't going to fall off. I'm not normally a hat wearer either, so wigs are an adjustment. Best wishes and good vibes out your way for your CT scan.
Swissmiss: Good luck with the new MO. I'm glad you're ditching the old one, who wasn't providing very good care.
Brigadoonbenson: My port was installed under local anesthesia with sedation. I was freaked out about it before the surgery, too! It took 45 minutes total. I remember nothing from the time the sedative went into my IV drip to the time I was in recovery. Immediately after the port install, I went to see my PS to get my mastectomy drains removed and my first TE fill. I felt pretty normal...no nausea or sluggishness. I had bruising in the area right under the port, which remained yellowish for about 4 weeks. The first few days after surgery, I had muscle pain in my neck due to the way they positioned me to get the catheter inserted into my vein. I took ibuprofen for it. Now and then, I get the neck pain again, but it's not as bad as the day after surgery. I don't feel the port now. I'm glad to have it so they don't have to find a vein for each infusion. The needle stick into the port isn't as painful as the IV needle stick. Plus, I was told the TC drugs really damage the veins in the arm and hand, so they didn't want to do that. Best wishes on your port surgery. Don't worry. It'll be fine. It's pretty minor as surgeries go.
Well, it's my bedtime. Have a good night! I hope tomorrow's a better day for everyone!
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Why can't people just be nice and compassionate? I want to be shocked at all the stuff people have said to y'all, but I've experienced it too. I never have a comeback, so I just stare at people. And the looks of pity with the "but how are you really?" comments, I can't stand them. It bothers me that I am somehow put on unequal footing with people because of the visibility of this "condition" (thank you footballnut). People know something about me just by looking that I maybe didn't want to share.
Longisland, I love your poem! It captures so many feelings about this ordeal. Are you a writer?
Swissmiss, good for you pursuing a new MO. Those wait times are unacceptable.
Brigadoon, my port was put in under general anesthesia. I really didn't want one but my MO and BS ganged up on me and talked me into it, and I'm glad they did. The surgery was 20 minutes, and the recovery was pretty easy. I had bruising, a little soreness, and a pulling sensation for a week or two. I use emla cream about an hour before it is accessed and never feel any pain. If you use emla cover the sight with plastic wrap to keep the cream in place and from getting on your clothes. I hope this helps. The description of this procedure was so much worse than the reality. I will be in your pocket, as they say, with prayers and good thoughts.
Someone is getting a CT scan tomorrow, but I can't turn back the page or I will lose my post. I will flip back when I post and find out who, and will be in your pocket with good thoughts and prayers as well.
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Timbuktu, I flipped back and found you. Prayers and good thoughts for your scan.
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Thank Blueberry! Flipping back just to see who it was...that's so kind. Prayers for all of us!
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Good morning April sisters.
Timbuktu - in your pocket today - sending positive thoughts on the scan today - clear clear clear.
Brigadoon - I love my port and make them use it for blood draws and tx - so much less pain and less invasive to me.
Swissmiss - good for you on getting a new MO - hopefully you find one that you feel comfortable with and have confidence in.
Feeling better this am - went to MO's yesterday - RBC and HGB were both low - but not horrible - but that explains the extra fatigue. Bad news is that I have a UTI or start of a kidney infection. I was pretty sure that was going on but hard to distinguish SE from other symptoms now a days. I don't think I have had a UTI for over 10 years. They are sending it out for culture but MO prescribed bactrium for me - UMMMM - I am highly alergic to it - think emergency room can't breath allergic - told them that day one - should be in my charts but no LOL - so then he tries to give me CIPRO - had very bad reaction to that after taking it for one day a few years ago - told them all about that also - apparently also not in my charts - ughh. Nurse then said well what does work for you for a UTI - I said ummm - idk - haven't had one in so many years that I have no idea. Lost a bit of confidence in my team yesterday over this.
I think that at times I am in a cancer factory - going to a cancer center - I watch people go in and out - so many in a day - i think it is sad. The nurses are wonderful though - so caring - give you whatever time you need - really listen to you. And I do like my MO - although I really think that he sees way to many people - I know he doesn't remember the details of my case from one appt to the next - although he does remember me as a person - he does reread my chart each time and rehashes everything. But as in all things medical - we have to be our own champion and guardian in this.
Footballnut - that lady at your LGFB class - what a jerk - can't believe that someone with BC could say that in a room of women with BC - and she couldn't be more wrong about her statement. I mean how can a positive be a negaitve??? LMAO. Anyway - you know and I know that we have a very good prognosis - and we have magic herceptin too!! No worries my friend.
Wishing you all many SE free days
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football nut the lady I. Your LGFG class has obviousy had her head in the sand to long to know that triple + has a ton of highly effective weapons. Hang in there she a donkey.
Timbuktu- hope your ct is nice and boring today.
So
Is in the books. One more AC to go. -
good morning!
Just to continue the chat about people and comments; staring etc. being born the way I was I've experienced this my experirnced life.
Oh you poor thing. - I'm not poor and not a thing
How do you mange? - same as you
You look so wierd /different/strange/funny - that's what makes me unique. I am different and proud to be
Then I went through things like not getting picked in school to play sports in gym. I've heard you can't catch a ball, swim etc Well I was a goalie in hockey and will STILL play, played baseball, football, play guitar using a prosthetic to hold the pick, swim, do weights, ride a bike, tie my shoes, cut a steak and on and on. Lol
Comments and stares all made me stronger. It pushed me to never give up or give in to others. If I want to do something, I'll find a way
Did I have escape mechanisms? Sure. I dressed up as gene Simmons of kiss which forced people to look at something else first other than my arm
Now I've survived breast cancer and comments continue. If I want to go bald I'm going. Will I feel a bit uncomfortable? Honestly - yes. But people will be looking at something other then my arm. Lol
Overall I don't think that people intentionally mean to hurt us with their comments / stares. It might scare them - force them to recall an experience close to home - or they just don't know how to handle things and don't know what to say. Or they ARE just stupid and ignorant
Isn't it human nature to focus on the negative? I know that I've done that and still do. How often do we write a note to compliment someone yet are ready to share a bad experience? It doesn't make us evil - just human
I have a big mouth and am always ready to share my opinion. Now I've tried a different approach. If I get stared at - yes I STILL have to say something - lol - I'll say do you have something that you'd like to ask? Depending on the person sometimes I might be a bit sarcastic. With children I'm very understanding. They are the only innocents
The dumbbell who was at the LGFG class that I went to said domething stupid. I agree with the comment that she wanted attention. I believe that she is scared stiff of her condition and inside is very scared and weak. Of course I STILL wanted to say something but the glares from my cancer sisters did it for me
So I believe that I have a slight advantage of dealing with the " idiots of the day". Lol
Try to be strong - let the comments and stares fuel your strength. Remember that you are unique and special and beautiful. You are loved. You are friends, mothers, sisters, cousins, aunts and on and on. We are united and we rock!!
It is for reasons like this that I always shared my message when playing with my band - don't judge people by how they look
And honestly wouldn't you glance at this? I sometimes catch myself looking !! Lol
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I mean really?!!!!!!! I got my period again!!!! Seriously???!!!!!
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Hey Footballnut! Oh No! Not that!!!!!Other than that you sound good. Just saying hi.
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footballnut- you are beautiful. And laughing about your period! I agree! Could that one variable be off the table for us?
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Good morning ladies! There are so many posts on here since the last time I posted I can't catch up. Must be the smartphone thing. I don't have one! Anyway I hope everyone's day is uneventful, positive and beautiful. Stay strong and beautiful!
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I called my nurse and said really? I just got my period. She spoke with my MO while I was in the phone. Yup. Nothing to worry about. Worried? No !! Pissed? Yes!! Lol
I started getting cramping yesterday in my lower back and stomach and thought - eh - just more SEs. And then this thing!! Lol
My body was starting to "change" last sept prior to all of this nonsense and my MO said that this is normal
I want to file a complaint - I thought that this would stop! Plus I just spotted 3 weeks ago ! It's not even a full month!!
Lol
I just ate my sugar frosted flakes - remember sugar can feed cancer - and I'm going for a walk!!
Lol
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I just a text message from my sister in law explaining to me how I need to stop chemo and start essential oils. She went on to explain to me that the chemo is killing my good cells. BLAH BLAH BLAH. I already feel bad and somehow this text made me feel worse.
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apple, i had a friend who, after i described the difficult time I was having with side effects wrote me "stop the chemo!" So strange! It puts me in the position of choosing to suffer. If I didn't want to suffer I would just stop. Does she realize she's telling me to risk my life?
When I was on arrimidex and taking a class, a classmate (a therapist no less) saw the pain I was in and told m to stop taking the drug. I tried to explain why I couldn't do that but she was still certain that I should stop. lol
Luckily we were with a mutual friend who is an ICU nurse. She said "She wants to be around awhile and this was prescribed". People can really be puzzling. When I saw the mutual friend a week later, she told me "I hope you know that I will respect any decision you make." Huh? Therapists can be scary!
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Timbuktu- I just thought what would she do if she was in the same situation. I certainly do not want chemo, but kinda feel it is necessary if I want to see my kids grow up. I could be wrong.
I want to feel healthy again.
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hi girls...I will have my last TAC infusion Monday June 2!! Woopwoop! Coconut oil has been my saving grace for rashy face..1/2 avocado oil...at grocery...and 1/2 coconut oil...my scalp hurt due to stubbles...I tried scrubbing my stubbles with a wash cloth in the shower...it was still such a mess! So I asked my smooth shaven husband how can I get my head to feel smooth like his? (As much as he would sit in the car with his electric shaver and shave his head on our way somewhere, I should have remembered)...so I took electric shaver and shaved a smooth head...now, about 5 months later 5 treatments later ...I feel the stubble growing back...it hurts a little but you KNOW I am not shaving it now!! So if your head hurts due to stubble...maybe shave it?? It didn't bother me emotionally as I know this is all temporary...patience is a virtue they say...Rosie
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Apple, that is a fantastic response. These people are just not thinking.
I had a similar experience with an onco. she was telling me how I really didn't need chemo.
It will "only" give me a 7%-10% protection against recurrence. In frustration I finally asked her, point blank, "If it were you, what would you do?" That changed everything. She stopped in her tracks and thought really hard. Then she said "I'd do it. And I'd do all 6 infusions." I have to remember that for the future, make it personal to them and everything changes.
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I am still lurking here as I don't start until June, my MO appt is tomorrow. You all have been an encourgement to me. Your positive attitude despite your SE's and peoples comments are helping me not dread it as much. I still dread it but not as much. I just had someone this morning show me an article from John Hopkins on how sugar feeds cancer, it was actually an email and is debunked on snopes. I had another person show me an article on how cannibus oil is a cure for cancer. I know people mean well but...enough already!
So, thank you to all of you for sharing the good, the bad and the ugly of this.
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Best wishes Mompv.
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It's very easy to jump on the "anti-chemo" bandwagon until you're faced with it. I am a very strong believer in a nutrition based approach to help in the battle against cancer, however I am also a very strong believer in doing anything/everything I can that will enable me to live a long healthy life and to be here for my family. I have taken a position where if you can show me that it can likely help my fight, I will do it. A good friend said it best when discussing some naturo-path extremist friends of mine, "You've got to embrace both schools." And that's what I'm doing. But we can't hold it against people because their viewpoints are different. If they didn't care, they wouldn't say a word. Try and remember that.
Day 8 and I'm battling diarrhea bigtime. Starts with constipation, then the Senokot and now diarrhea, talk about full circle, lol. I am thinking it's more that my digestive system is just in a tailspin than it being the actual chemo. Next infusion I am going to discipline myself more towards a bland (chicken/rice) type diet. And maybe no more ice cream, lol. I took off work yesterday and today. Today a bit better - actually ran a couple of errands... before I had to run home to the toilet anyway, lol.
COLD - I miss you! You okay?
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Yes, that John Hopkins hoax made me upset yesterday
I know people have great intentions, but it really bothers me when people automatically believe what shows up in their google search results rather than excellent research studies. I really might make a facebook post on what constitutes great research and if you want to send me an article on cancer it better meet the criteria! The public needs an education! And I need a break from the nonsense! -
Football- I just got my period too, but I'd like to have functioning ovaries at the end of this so I was happy
And I just wanted to say after my research rant that of course we should all avoid known and suspected carcinogens.... like shift work! Afterall this I am going to find a new job!
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I have been lurking and reading Ladies! You all make me laugh and cry and feel not alone. I haven't had a chance to actually post, because Life always interferes. And this is good - it makes me feel Normal, you know? We are wrapping up our Homeschooling year, and our Facilitator comes next Monday to review what we've done, and I've been scrambling trying to REMEMBER what we've done. Curse you, Chemo Brain! I can barely remember what I ate for breakfast this morning. lol!
Longisland - I'm still here! Just...phew! Round 3 lives up to it's reputation, I'm telling you! Nausea still hovering (albeit MILD nausea, so I can live with it), EXTREME fatigue, all sorts of digestive issues, body aches and pains, low-grade fever at then end of week 1, and new this time, mouth sores and a constant burnt tongue. I'm like the poster child for getting every single SE you can get, right?
And Ladies, the whole bald thing? Isn't it UNFAIR how men can wander around all bald and no one suspects THEM of being "sick"? I see all your bald pictures and all I see are gorgeous women with big, beautiful eyes, striking cheekbones, and brilliant smiles. It's a SHAME that bald on women is such a social no-no. People are missing out on such beauty. BOO.
footballnut - I love your comment about lodging a complaint. Wouldn't it be great if there was a Chemo Complaint Line? Ha ha ha! That would be one busy call centre, right?
As for all those ridiculous comments people around us make? Some people don't know what to say, so they fumble. But they mean well, and we can be the ones to teach them the best way to react and respond. But SOME people are just STUPID. And NOSY. And we should feel sorry for them, from afar.
A few posts back, Longisland mentioned that no one had told her they're proud of her for the way she's handling this. And that STRUCK me like a bolt of lightening. I am so blessed to have friends and family tell me that on a regular basis, and I completely took it for granted. But no more. SO, like Longisland, I am passing those words on to all of you Ladies. I am so PROUD of YOU. I am PROUD of US. We are FREAKING AMAZING!
Sending a Virtual GROUP HUG to you all!
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chicken and rice will constipate you more won't it?
I have the same problem. It ain't easy. I take 3 stool softeners a day and at least one dulcolax.
I hate all of these pills so I've been trying to eat a few prunes instead and thank goodness I think
things are smoothing out. We have to figure out the right amounts for us. The diarrhea I was getting was worse than the constipation if that is possible.
Where else could we discuss this without blushing? lol
BTW my husband who is always regular as a clock, has been having the same problem!
that's why I looked up how chemo affects those around us and found out that it does!
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ahh the constipation/diarrhea battle. This drives me crazy. I always start with 4 days of constipation which I end up over treating I guess and end up with diarrhea - the first cycle it was really only about 48 hours of the D but this time I had it for 4 days - not really bad D - but there enough to prevent me from going out of the house for much time at all. Not looking forward to this part getting worse with cycle 3. I hate all the pills too - drives me crazy as I generally don't take pills. Now with battling this UTI I am taking and antiboitic and wondering how that is going to mess with my digestion which just finally seemed to get back close to normal.
I too am getting alot of messages from friends on how bad chemo is for you and why am I doing it if they got all the cancer. I know they have good intentions and just really care but don't they realize that I KNOW how bad chemo is LOL. We live it. I have written a paragraph about why I am doing chemo and i just copy and paste it back with the standard "thanks for your concern". I am thankful that they care enough to write to me but it does get annoying.
Sending all my wishes for SE free days
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I have one answer for such friends. Steve Jobs.
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Timbuktu: I am so glad not to be the only one experiencing these comments!!! I mean - stop chemo. Don't do chemo - it's only reducing your recurrence risk by 10%. Well, if someone told you you could cut your risk by 10%, you'd do it, right? Then the conversation totally changes. And, all the people with zero medical knowledge who want to give you advice.
Your pic and writing is awesome Footballnut. You're going to be my hero, I think.
And if sugar is feeding my cancer, I'm in big trouble because that's the only thing that still tastes worth eating. Well, and bread and cheese. So I'm going to eat. And I'm going to do my chemo. And I'm going to kick cancer's A$$ because that's what we all have to do to get back to living the life that was interrupted with all of this nonsense. Best wishes Mompv!!
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Well said, Jhodro!
I'm happy to say that I haven't had many thoughtless comments thrown my way, but I do get lots of looks when I go out wearing a scarf. I can live with that.
When it comes to food, my philosophy is to eat what I can handle. I figure between the wonky taste buds and the digestive system that can't make up its mind whether its constipated or urgently needs to be emptied, I should eat whatever I can manage to get down. No guilt whatsoever.
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jhodro thank you for ur kind words!! Funny I am getting junk food cravings like crazy!
Together let's grab some sugar cubes, toast life and pop them in our mouths and enjoy!!
Lol
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I'm back! Sorry I haven't posted for a few days. I had chemo on Friday and my sister from Calgary came down to help me out. I haven't seen her since my mom died in December so we had a lot to get caught up on.
I read all the posts and you all are so inspiring and beautiful. Thank you for being so uninhibited. I'm tired of being treated like glass.
Not much else going in here except I saw a cardiologist today because I've been passing out or almost passing out frequently the first week post chemo. So frustrating. Otherwise, just trying to wrap my head around the stage IV diagnosis. Carrying on.
Die little f#*%ers, die. I love my new mantra and have been using it
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Hi all!
Today was round four of A/C. I am now DONE with that crap! Hallelujah! I start Taxol in two weeks. I decided to make a list of 'silver linings' in honor of completing my A/C. Here goes...
1- I have had some of the NICEST nurses on the planet taking care of me.
2- I have met some really nice women at the cancer treatment center.
3- My DH has been spending much more time working at home so he can spend time with me.
4- I have wonderful friends that call and stop by to check on me.
5- I found out that I have very caring neighbors. They come and help me with my horses when DH is away.
6- When I am out running errands, people have been more courteous and friendly- probably because of my bald head! Lol
7- I have become more brave about everything.
8- I have learned to speak up and ask questions. Nobody is a mind reader. If I don't tell them-who will?
9- My oldest daughter has been regularly bringing me big containers of her fabulous homemade chicken soup!
10- I found this website and met all of you FABULOUS women who support each other!
There are a lot more things I could add but I'm starting brain fog. Lol. Tomorrow. When my SE's start and I'm feeling cranky, I will need to be reminded of my silver linings. Lol
Wishing you all well, hugs, lilyrose
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Met with a new MO today...I think I'm going to make the switch! His office staff was going to verify that my insurance is ok with the switch (I guess he does need to get paid, right?), then I'm officially his newest patient
I feel sort of bad about switching...I'm loyal to a fault, and I know my original MO was a good doctor. But waiting around three hours in his office before my infusion was just too much. My new MO has a much smaller practice, and it's a new office, so not many other patients. His office has its own infusion room (two chairs versus 40 at the hospital), and he shares his practice with the radiation oncologist my surgeon referred me to. The nursing staff seems very efficient, kind, and very much invested in their patients. I'm happy! Although I was secretly wishing my new MO would suggest not going ahead with the dense dose Taxol, I understand it is standard care, and I just need to get it done. Damn those two stupid lymph nodes!
One thing he asked me about was the fact I didn't have a pet scan done. He said with positive lymph nodes he would have called for one. Is this standard with everyone here? We didn't talk about me getting one done, but I wonder if I should expect to get one. I didn't even know about pet scans...now I feel like I missed out on a something that would have at least given me peace of mind.
The infusion nurse at my new cancer center said the biggest, most annoying SE with Taxol is diarrhea, which I've thankfully missed out on with AC. I was worried about nail problems, but she said very few of her patients have had anything more serious than discoloration. This made me feel much better about Taxol. My previous MO told me to not worry about SE's until they actually affect me...I love that she answered all of my questions and concerns.
It's still going to be a crappy chemo summer...but at least I won't be spending ALL DAY getting my infusions. Yippee!
Have a wonderful evening, you beautiful girls
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I'm on Taxol and my problem is constipation but laxatives take care of that, sometimes too well.
I'm so glad you made the switch.
I did not have a Pet scan. I had a micromet in one nodewith my bc. They considered that node negative which makes no sense to me but they say that micromets don't effect prognosis
At Sloan they told me they don't do ct scans or any tests unless there are symptoms as too much radiation is dangerous.
I just had my CT scan here in Chicago. They did everything differently than Sloan did. Honestly no two places are alike. At Sloan I heard they were going to more MRIs than Ct scans.
About loyalty to drs. I'm remembering when my children's pediatrician got sick. I loved him.
I considered him the third parent. Everyone left his practice and I thought I would stay and be loyal. Until I went to the pharmacy to fill a prescription for my son. The pharmacist looked at it in
horror and said "Dr. Shultz wrote this, right?" I said yes. He said it was written for the wrong dose. He'd been doing that a lot. Of course this is a different situation, your doctor was good. But I know the pain of having to leave a dr.
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Great news Swissmiss!! Sounds like it'll be going better with the new MO. If it makes you feel any better, I have not had any problems with my nails except they grow more slowly and the D is just a bit -- usually two days after for 2 days, but if I take Immodium at the beginning of the day, for me it is ok. Best of luck and enjoy your two weeks!!
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I only received a pet this time to verify it was a local recurrence however I will continue to get them for the same reason.
. It doesn't make me so happy. So AC #3 is kicking my a$$. No other words for it. I just want to sleep, sleep and sleep some more but I have to get up to eat so I don't feel sick to my stomach. So it's a little frustrating to say the least.
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good morning!
I hope everyone is hanging in there with very little SE today.
swissmiss - sounds like a good move to a new doc and infusion centre. I couldn't imagine waiting three hours. My max wait time has been ten minutes except Tuesday for my neulasta shot. Busy after Memorial Day. They let me jump the line because I was simply getting a shot.
I think a PET scan is pretty standard with positive lymph nodes. Some insurance companies won't cover it. Very expensive but will order a CT scan and bone scan as an alternative. It's a really good test. Very quick and easy scan. If you have a choice, do the PET... one versus two tests is much better with all the other shit we have to go thru. Much easier than an MRI, IMHO. I had one and will continue to have them due to my mets (only two though) to follow them.
Jaimieh - sorry round 3 is rough for you. Hang in there. You can get through this. I'll be checking in.
Any one else having syncope out there?
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You ladies have been on a roll these last couple of days, as I've been out like Sleeping Beauty. Feeling ok, just sleeping a lot.
Lillyrose - your silver linings are a good reminder that there are some positives in all of this.
Swissmiss - hoping the new oncologist works out for you.
Wishing everyone a good day, as I sit here sipping on my Biotene flavored coffee...
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golfingirl- are they going to maintain your current treatment ? I agree the PET is much easier than the MRI.
So I decided that I am just going to pace myself this week. Nothing crazy like last week. I am just in the finally count down for this last AC. If I even think about it I need to take anti nausea medication no psychosomatic symptoms here. Lol.
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hello everyone!
How are we doing today? It's Thursday so I'm anxiously waiting for my rangers to beat the canadiens tonight and move on!!
Still have a bit of a dry mouth but not so bad. I started using biotene toothpaste and mouthwash. The thought of some foods is making me queasy like chicken but I can still eat anything thank goodness
Still have this constant desire for junk food but only have it 1-2 times per week
Round 3 - the last round - of FEC is wed June 11. Then on to 3 rounds of taxotere and herceptin. Time is definately moving!!
Have a good day all !!!!
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good luck mompv!
I have been told about the miracles of flax seed oil twice now - once just on its own, the second time to eat it with cottage cheese.
And people mean well, but I do get tired of being asked how I feel sometimes.
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I think I have made it through AC ladies! Day 9 post #4 and I feel a little bit better with a big side of hope
Tired and dry mouth but woohoo! I am going to try to make it out of my house today.My daughter is finally over the fever, but still clingy so I am getting extra cuddles.
Tomorrow is a pirate dinner fundraiser for the rotary club. I will be rocking my headscarf and thinking of my pirate sisters here!
Here's to an SE free weekend! On to Taxol on Wednesday!
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Jaimieh - yes, I am continuing with my current treatment. Still planning on mastectomy and radiation following chemo. They added a drug used to treat osteoporosis. It's a monthly injection that has been shown to slow bone met growth. My silver lining us I only have two mets. Statistically, less than three mets, life expectancy is greater. So full throttle! I'm glad you're taking it easy. I paced much better this round and feel stronger for it.
Football nut - I'll be cheering in your Rangers! Not much of a Habs fan either.
Makelemonade - getting asked how I'm doing is a much greater reminder that I'm sick than this cute bald head I'm sporting!
I was out for dinner last week on a patio with my peeps. It was warm so I took off my hat. A guy walked by and said I love your hair. I looked at him in the eyes and said thank you. Then I looked at my sister and asked 'what hair?'
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clarrn. Yay for finally starting to feel human again.
. Footballnut- I think the dry mouth makes things worse than normal
. I still can't believe how awful I feel today. I thought yesterday was bad but today is much worse. I want to sleep but I can't. My arms feel like I have done about 50 push ups and I am just spent. Blah. Starting to worry because after my next round I am photographing a wedding 5 days after my last AC. I need to start planning for it now.
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So, I met with the MO today and I have 2 choices of treatment. I am like wait...I have choices???
#1 Taxotere and Cytoxan every 3 weeks for 4 treatments (been told this reduces reaccurence for my triple neg from 30% to 20%)
#2 Taxol, Cytoxan, Adriamycin every 2 weeks for 8 treatments (reduces reaccurence to 17%)
I can also participate in a clinical study for Herceptin.
Leaning to #2 just for the odds factor. My odds for even getting this were slim as no incidence in the family history.
My next appt is June 5th to let him know my decision with a start date Mid-June.
I am really stressing at this point...good thing I have work or trying to anyway.
Any thoughts?????
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mompv - what is the study with herceptin ??
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Mompv - i think that decision is one that only you can make. The only thing I would ask prior to choosing is "what are the possible long term side effects from the two choices". I do know that that adrmycian can be hard on your heart so make sure that they do a echo or muga scan before you start if that is your choice.
Footballnut - yeah for one left on your first course. I have six of this course - then 12 more herceptin after that. Go Rangers!!!
Clarm!! congrats!!
Feeling pretty good today!!!
Hoping for SE free days for all!!
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The study for the Herceptin is to see if it effective against Triple Neg. Right now it is used for HER+.
I did read the adriamycin is hard on your heart, my MO said the risk is 1% I would have problems.
I hate this.....
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Mompv - you just have to trust in your own judgement on these things and not look back - I hate every decision that I have made on BC since day one but I just keep looking forward!
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Damn, third round is hanging on with vengeance. Geez! I'm back to work today which is good, but if one more person tells me I look like I'm wiped out... Yes, I've been to the mirror lol. I know I look like crap, thank you.
Heading on a road trip Sat. upstate to my niece's college graduation party. That will be good. I think getting away for a couple of days will break me out of this post-chemo mode that I can't seem to shake this round.
Cold, glad to see you're okay
I'm just too darned tired to reply individually to everyone, but I've been reading diligently and sending healing vibes to all while I chant the mantra in my head (DIE LITTLE F&*$KERS, DIE!!!)
We're almost into June, ladies! Crazy, right? But look at us!!! WE ARE AWESOME!!! WE'RE DOING IT, and WE'RE DOING IT WELL!!! xoxo
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Personally, I would go for the best percentage. If you can't tolerate it you can always switch. but god forbid you have a recurrence you say you did everything you could to prevent it.
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Mompv: I know these decisions are hard to make...there's no right or wrong choice...just trust your gut after you have all the facts you can find.
I was in a similar situation to you. My MO told me that my 2 choices of treatment were TC (Taxotere and Cytoxan) every 3 wks for 4-6 treatments or dose-dense AC (Adriamycin and Cytoxan) every 2 wks for 4 treatments followed by 4 treatments of Taxol every 2 wks. I was also given the option of participating in the NSABP B-47 Herceptin study for HER2- patients.
My MO recommended the TC because like linda505 said, the Adriamycin is hard on your heart. My MO said if I were older, she might recommend the dose-dense AC+Taxol, but since I'm only 43, and will need my heart to be in good shape for many many more years to come, she recommended the TC. I also confirmed this recommendation via a 2nd opinion from another doctor, who told me that these 2 treatments are very similar in results with AC+Taxol being maybe 2-3% more effective (essentially the 3% improvement your MO quoted also) but with more heart risks. Now that I've had 2 TC infusions, with my resting heart rate at 95-120 bpm for the full week after infusion, I'm personally glad I didn't choose the AC+Taxol to tax my heart even more. That's just my experience. Everyone is different.
As far as the Herceptin study, I chose not to participate, due to my own selfishness in wanting to be just done with chemo after the 6 TC infusions. Participating in the study would have required me to come in every 3 weeks for the Herceptin until a whole year after my first infusion, AND I would have to come back regularly for years afterwards to submit blood samples for the study. It was hard enough dealing with having to do chemo for 4 months, after having a BMX, and knowing I had radiation, an implant exchange surgery, and 10 years of hormone therapy to follow. Just too much for me.
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ct scan results: NO EVIDENCE OF DISEASE!
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Timbuktu: THAT'S AWESOME!!!!!!!!!!!!!!!!!!
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Timbuktu that's awesome news!!!
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wooo hooo timbuktu!!! and love the tshirt longisland!!
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thanks guys
hope this is an omen for everyone on here!
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awesome, Timbuctu!!!!
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that's so awesome Timbuktu!!!!!
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Yay, Timbuktu!!! I hope you do something awesome to celebrate.
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Happy Happy Dance to you, Timbuktu!
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I posted in May 2014 just wondering if anyone can give me a little advice?
:Hi guys! I am not sure if I am posting in right spot but have a
question. I meet with oncologist tomorrow and am wondering if there is
anyway I may not have to have chemo or is it a good probability I will
have to have it? I know we are not Doctors but am wondering others
opinions on it. Here is the info I know, again not asking for medical
advice just a opinion on what everyone thinks. I am 34 years old I have
DCIS in right breast nearly 60% of breast was grade 3 dcis, I also had
9mm of IDC in the same breast, which was grade 2. No lymph node
involvement and had a double mastectomy and I am also BRCA 2 +. I do
not have a onco type yet I am just trying to see if it is a big chance
of chemo. Thanks for any advice. ER+(85%) PR- HER 2 - -
Hello Cammychris,
I am nor familiar enough with stats on BRCA+ and no lymph node involvement to comment intelligently.
However, as you read through this thread of amazing women you should feel some comfort in knowing that if you do need chemo you will get through it. It is no walk in the park, but, manageable. It is always scarier before you get started. Good luck tomorrow.
Congrats, Timbuktu!
Long Island, I need that shirt!
Mompv, I was given the choice of TCx4 or CMF over 6-8 months. I went with TC and landed in the hospital because of the Taxotere. Was switched to AC for 3 rounds and will have low dose taxol for 12 weeks. So I will be 6+ months on chemo anyway. There are no perfect answers. Just don't look back once you make a decision. Will be thinking of you.
A few days or maybe a week ago several were discussing chemo pause or the lack thereof. I have experienced 3 periods and spotting on off weeks since starting chemo. Interesting that so many of us are experiencing heavier and more frequent periods. My mo thinks my body may be going through its final adjustment before pausing. I am 51. I figured I would be paused for good by now! It irritates me every time I am asked to take a pregnancy test and have to pay for it. Really? I am 51!
Weird question, everything I read indicated that my skin would get dry and I should moisturize my skin extra well during chemo. However, my skin has gotten much smoother. Like baby soft skin. Not dry at all. Maybe it's the hair loss? My skin also feels slightly numb when I touch it. Face, arms, everywhere. Not a bad feeling , just strange.
Wishing everyone a SE free weekend!
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mmtagirl: I haven't noticed any change in my skin despite also reading that it would be dry. I guess we should consider ourselves lucky with that!
As far as my period, one started on the day of my first infusion (yuck!). It's been just over 4 weeks since infusion #1 and my period hasn't started yet. Since I'm usually on a 25 day cycle, I'm 4 days late and wondering if it's going to just stop or if it's going to go into some weird cycle. I'm kinda hoping it just stops. I wouldn't miss it. -
mmtagirl - the skin on my face is very smooth, and actually looks better after 2 TC cycles than it did before - I apply moisturizer, but it really isn't dry at all. Skin on my arms does get very dry - and I'm seeing more spots / blotches. Legs are normal, not too dry at all. My dermatologist said this is all normal, and she scolded me to moisturize even if I didn't think I needed to.
Mompv and Cammychris - I know making the decision on which chemo, or whether to do chemo, is hard, but like others have said, you can only get as much info as possible and make your decision - then move forward without second guessing. I think we are all learning there are no absolutes in this game.
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Hooray Timbuktu! Wonderful news - celebrating with you!
Cammychris - it's hard to say whether you will need chemo or not. As you said, we are none of us doctors, and many of us were initially told "no further treatment needed" only to be sent on the chemo train once the final pathology came in. In my case, I had only 6mm of grade 3 IDC, but the HER2+ result changed everything. My advice to you is to prepare yourself for the worst case scenario. As mmtagirl said, chemo is scary, but absolutely doable. And there are a truckload of women on these boards who will support you through it. Best of luck tomorrow.
Regarding periods, I got mine the day after Infusion 1 (SERIOUSLY? is what I said). It was heavier and more painful than normal, lasted one full week, and then...NOTHING. At all. Since April 11. I'm celebrating that, by the way. Happy Dancing and Woo-Hooing CELEBRATION going on. Of course, NOW I have hot flashes and cold night sweats to deal with, but I will take them over the period.
Longisland - I NEED that t-shirt. Love, love, LOVE that.
mmtagirl - my skin is only drier on my face, and I seem prone to breakouts near the end of each Round. But everywhere else, my skin is softer than before - even on my hands, which are normally very, very dry. I thought maybe it was the all-natural organic soap I'm using, but if others are experiencing the same thing...A Chemo Bonus maybe? A roundabout chemical peel for the skin?
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Cammychris - I'm no expert, but as I understand, the higher the grade the more likely you will need chemo. Do you know the makeup of the grade 2? Using the Nottingham histologic grading, there are 3 things they look at. My biopsy at diagnosis came back with a grade 3 tumor. After the mastectomy, the grading came back at 2. When I looked at the 3 subsets for grading, my grade 2 was on the higher side (3+2+2) if that makes any sense. My ki67 score was also high at 55% so I suspected I would need chemo all along. My Oncotype ended up at 34 so was definitive for chemo. My MO told me that even if it came back at the low end of intermediate (18-31) that she would have recommended chemo due to my age (38). All this said, you are also lucky in that your tumor is less than 1 cm so may sway to no chemo.
Fingers crossed your Oncotype comes back very low, but in case you need chemo, its very doable. I am 1 week out from 2 of 4 treatments and have worked full time, taking off only 3 days, 2 of which were for infusion. My first round was rough, but this time around everything has been manageable with OTC pain meds.
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excellent news, Timbuktu!
Long Island - see if we can get a bulk discount on those t shirts for us
Footballnut - yay, Rangers!!! That was a great game.
Welcome, cammychris - good luck with your appointment today. Hopefully your doc will guide you through everything and you will be at peace with whatever treatment is necessary. We are here to support you through it all. Chemo is tough but manageable.
I think it's always easier to go full force and if not tolerating it, back up or change game plans. Easier to try then regret, IMHO. For me, there is very little options. It's kicking my butt but im getting through and can feel the tumor shrinking. That's the amount of hope I need to welcome more into my body.
Happy Friday everyone!
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Timbuktu - Congratulations this is wonderful news!
Cammychris - I was not going to have chemo until my Oncotype test came back. Chemo brain forbids me to remember my score but my chemo was elective to reduce recurrence. Whatever you are faced with I believe we all now instinctively what we will do. Also, I think the worst part in the beginning of all of this was the waiting. Now it is getting through the rough days and celebrating the good ones. Whatever you go through just remember there is a whole world of ladies out here to help you through every part of this journey.
Happy Friday everyone!
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Cammychris - I was also not supposed to have chemo, then the MO felt that he couldn't let me not do anything because of my age and how quickly it had appeared. Plus mine was multifocal. So I talked to another MO from University of Michigan and he pointed us to a study that just published in December 2013 about the benefits of weekly taxol (for 12 weeks) in reducing recurrence for tumors under 1 cm. Plus, I have HER2+, so I will get the benefit of a year of Herceptin. I figured I'd go the route with no regrets - meaning I'd do the Taxol, then I'd have done everything possible to avoid recurrence.
Best of luck in the decision. From experience, the decision agony was worse than the treatment. Whatever you decide, no looking back!!
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LADIES! My new wig came today, and I just HAVE to share it with you. It's pink and looks WAAAAY better on me than on my husband (as per a Facebook poll).
Isn't it AMAZING what you can get for $8 on amazon?
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ColdnCanada - That is a great wig. The Hunger Games! -
I just saw this article that was released today. Thought I would link it in case anyone missed it.
http://www.eurekalert.org/pub_releases/2014-05/uotm-wwm053014.php -
Pretty in Pink, Cold !!!!
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Cold, you look HOT!
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colinincanda...love it!
Question for you all: has anyone caught a bad cold or worse, strep? My husband has been dealing with strep throat this week, and now we suspect my 11 year old has it. Along with my husband's strep, he has a terrible cough too...which I think I've caught. I am currently "in between oncologists" until Wednesday, so I called my super-busy, never-time-for-me old oncologist, told his nurse about the cough, and was told that I should go the emergency room for a chest x-ray. Is this just him brushing me off, or is it necessary to incur the cost of an emergency room visit for a cough? Even with chemotherapy I think this seems extreme, don't you? I don't have congestion, just the cough. Not a completely dry cough, but nothing that I think has moved to my chest. We moved here not long before I was diagnosed with BC, so I haven't had time to establish a regular family doctor yet either. What to do? I think ER is a little over the top, and I suspect it was just an easy answer to give on a Friday afternoon when the nurse just wanted to get to happy hour. Thoughts?
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Hmmm...don't know why my random sounding post came up here when the discussion was about chemo and NOT stubble on a bald head!! Lol...
We endure the chemo....we are strong....we are fighters! Yes, chemo sucks...but if it sucks the cancer out of you then YEY chemo!!! (That was in a card I got)...peace and good health to you all!! Rosie
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Swissmiss - do you have a fever at all? A fever would indicate an infection and then YES, the emergency room is a good idea. Where are you in your "chemo cycle"? Are you at a low WBC point? The only time I was told to go to the ER was a). a fever of 100.5F, b) signs of an allergic reaction, or c). I start to feel really, really sick and "not right". Maybe wait and see if a fever develops or if you start to feel really, really bad?
Disclaimer: I am obviously not a medical expert, so feel free to ignore everything I just said.
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you are gorgeous. can't get that on amazon for $8.
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swissmiss- I have had a productive cough for 5 weeks now. I cough up tonnes of pretty green stuff every day, but my onc is ok with it. No fever. Had my last 2 rounds of AC with it. Like cold said, if you get a fever go, but otherwise I'd try to stay away from the germy ER!
I happen to have my own stethoscope at home and so I listen to my chest every once in awhile to see if my air entry is ok, do you have a a nurse friend who could stop in for a quick listen?
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Swissmiss, I had a pretty bad cold just before my first infusion that led to a cough. I coughed for about a month. Since I never ran a temp more than 100, my MO didn't think it was a big deal. He listened to my lungs at each visit, but there was no treatment from him. Because the cough was driving me crazy, I went to my PCP, and she prescribed me a super duper cough medicine containing antihistamines and decongestants. My MO was okay with me taking it ,and the coughing eventually stopped. The ER is so full of germs, I think I would avoid it unless I was running a temp of 100.4+ or if I thought I had strep, but it's really hard not to go when a nurse tells you to. Good luck, I will be thinking of you.
Cold, I love the pink! You rock.
Timbuktu, yay, on a clear scan.
Clarrn, yay, for finishing AC. I go for number 3 of 4 next Tuesday. I can taste it just thinking about it, yuck.
Mompv and Cammychris, I really feel for you. The decisions and waiting are so hard. I had high ki67 and high oncotype scores so chemo for me and lots of it, 6 months. Although my MO disagreed, my BS called me from home just before the oncotype score came back to tell me that if it was his wife, he would want her to have chemo unless the score was very low. The two opinions muddied the waters a bit, but my oncotype was so high it didn't matter in the end.
So, my heels have been stinging and have been really, really itchy. I called my nurse and she said it was likely neuropathy cause by the cytoxin. Has anyone else experienced neuropathy with cytoxin? I knew taxol and taxotere had this side effect but not cytoxin. :-(
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Cold -love the wig LOL!!! You can have some real fun with that.
Swissmiss - do you have an urgent care center instead of the ER? I know that my copays for urgent care are alot less than emergency room and then at least you are being looked at by a doctor who can order a chest xray if deemed needed. But if you are running a fever and it is 100.5 or above then I agree the ER may be the place to go. Strep is nothing to mess around with even without our compromised immune systems.
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Thank you everyone for your feedback on my cough. Ugh, I wish this wasn't happening during my usual "feeling good" week. I do not have a fever, just the cough for now. My daughter is counting on me for her recital tomorrow, so cross your fingers that I'll still be ok to watch her dance. Of course I'll be the one coughing like crazy and getting dirty looks
I'll have to stop by urgent care tomorrow, I think. I just have the feeling it's going to get worse I'm wondering if this could prevent me from getting my first round of Taxol on Wednesday. Thanks again, so nice to have you all here for me -
Swiss, I had a bothersome cough after my first round. It stayed mostly in my throat not my chest. It sounded worse than it felt. I never got a fever but it stuck around for almost 2 weeks. If you don't feel that a trip to the ER is warranted, maybe make an appointment with your primary care physician.
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Cold, Looks really great, Thinking Pink!
This is a "good" week. I feel this huge sense of urgency, in other words I am rushing around trying to get things done.
Swiss, I think you should go to the doc in the box.I hope you feel better.
Have an easy day today, Ya'll.
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nuelasta pain, any help or tips would be appreciated. I took a clairiton yesterday right before then took some Advil this morning, now just took another clairiton. Anything else I can do? Pain is intense.
Thanks,
Dd
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I took 2 aleve every 12 hours. Dd.
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so I should be starting my good week but I feel like crud. My skin is sensitive to everything I feel like I have sun burn from my torsos to my knees my throat feels like it's coated with Adromycin and I am approaching the DONE point. Monday is going to be interesting at my oncologist appt.
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Jamie, that is the pits. I am seeing how unpredictable chemo can be now. I felt pretty much ok for the last two weeks, at 8 out of 12 Taxols. Recently I am having heartburn despite a daily Pepcid, a lot of fatigue and ever more disappearing hair. Hang in there.
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ColdInCanada: LOVE the pink wig! Such a great idea to have some fun!
Jaimieh: Sorry to hear you don't feel well. On the bright side, you have an appt for Monday to ask the doc for some help. Hang in there. Maybe try some cool towels to soothe the skin???
Starting my good week here. Pulse has finally dropped from the high nineties/low 100s to a normal 75 bpm. Went to the dog park to let my dog get some exercise, since I can finally catch my breath just walking!
Ice cream is still just about the only thing that tastes right so I just enjoyed a bit of Ben & Jerry's Cherry Garcia. Mmm. -
thanks Jaimieh, I will try that. Here is me in my chair on Wednesday. It's been a blur ever since . Getting better now though,
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Hello all,
Cold your picture gave me a much needed smile. I appreciate you….
DDkath I love your pic too.
Round 3 was Thursday and it has truly kicked my behind like no other. On Day two which was last night I started with severe chills…then at about 11pm I took my temp and had a fever of 102.3. Bad headache and fatigue were the only other symptoms. My MO had given me his pager number in case fever went over 100.5 so I called him and he told me to start taking my Levaquin that he had me fill before I ever started chemo. No idea what caused the fever but I am kind of wondering if it is my sinuses. Last night was kind of scary. Today was terrible too… fever did not break until 4pm today. Can I just say this is making me petrified of doing this again???
I hope everyone is doing OK.
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Dd I hope it helps.
I have decided my new name is hot mess. Yup, I am a hot mess. Tomorrow's another day I just sure hope it's better.
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I wish everyone at least one night SE free! This rate I'm my mouth is rancid.
I loved your wig, Cold! Just an fyi, we spoke awhile back about nausea and I had emend, Zofran, compazine, and ativan. Ativan was my friend because it basically acts as an amnesia drug. I don't remember shit. Lol.
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MameMe: I too have some nasty heartburn, and I'm even on a break week. I am doing Pepcid, but I am thinking of asking for something stronger, if it exists. I was wondering if it was because of the doxycyclene they gave me for the nasty acne I have on my head, but I guess it could just be the taxol. I have also lost 90% of my eyebrows at 6 of 12, and about 90% of the hair on my head - - I have a little peach fuzz and that's it. Looking forward to getting this done!!
MommyQ: Ice cream is the best medicine.
Ddkath: my MO gave me ativan to try to sleep on chemo nights since the ambien didn't do a thing. Have you used it for that?
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I use ativan when I need to. I've found it to be very powerful, much more powerful than xanax.
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Cute pic, Ddkath. I'm also fan of Ativan.
Jamieh - sorry you're having a rough time. It's no fun at all.
Jhodro and MameMe - my onc nurses told me to use OTC Prilosec for heartburn / reflux. It's stronger than Pepcid. I find I've got bad heartburn even in Week 2 and 3 after TC no.2 if I eat anything spicy at all. Prilosec takes care of it.
LovebeingNana - glad you checked in, was wondering how you were doing. Sorry to hear No. 3 is starting out so difficult. Hopefully the antibiotics will take care of things and glad your fever broke.
I dreamt last night that I threw a temper tantrum when they were trying to give me the IV for TC No. 3 next week ...
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Sharon, That's exactly how I feel about this whole thing! Great dream! As far as Pepcid vs Prilosec, I thought they were the same thing. I have an rx for Famotidine 40mgs, take one daily. What is Prilosec generic?
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I'm not sure what else Prilosec goes by - it's sold over the counter as Prilosec. It's definitely stronger than Pepcid, but so far I've had no ill effects from it.
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Cold Great wig you look awesome!
Blueberry - I too have neuropathy in my feet. I also have been peeling chunks of dead skin from my feet. It was scary at first but then I realize it was just dead skin nothing but a makeshift pedi. The tingling and stabbing pains come and go. I don't have any answers about how long it will last. I plan to talk to my MO on Tuesday.
DDKath70- My MO gave me a prescription for percocet for the Neulasta pain. Mine was so bad I cried for three days the first time. The second chemo the MO decided I should skip the Neulasta. BIG MISTAKE. My Neutrophils and WBC's vanished and I got so sick and weak. So, back to the Neulasta and lots of Percocet. I worry about taking strong Narcotics, but I will get through the pain anyway I need to.
Went to my Uncle's funeral yesterday and it wiped me out. An hour drive there, two hours for the service and an hour drive back. Glad I went though it was worth the exhaustion. He lived a wonderful 90 1/2 years and is now reunited with the love of his life. Smiling down from heaven together.
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Thanks Sharon. Miki, sorry to hear about your uncle, although its wonderful that he lived such a long time!
I just had an almost fainting episode, just leaning over to pick something up and then whoosh, practically passing out. DH is gone til tonight, and its scary to feel that vulnerable. I am going to be really careful the rest of today. Man, this whole thing is for the birds. : (
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MameMe- Be careful today. Anemia which can make you feel dizzy is a real SE. Use slow purposeful movements and eat some proteins. Hope your day is uneventful.
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That's scary, MameMe. Being careful is best. My DH was planning to fly to Maine for a few days to check on our house there, but I think he's concerned about leaving me alone.
Mikishelly - sounds like your Uncle lived a full life - 90 is pretty awesome.
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My onco recommende acetyl-L
carnitine for neuropathy. I've also heard that b vitamins can help.
I take the carnitine every day but how would I know if it's helping?
I take the b viatmins on and off, I've heard vitamins fight the chemo.
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For neuropathy my MO gave me the go ahead on L-Glutamine powder 30 g a day - I do it 10g at a time mixed in juice - he said only the pure cause some of it is mixed with antioxidants which in his book is a no no during chemo. He also gave me the go ahead on B6 and B12 - but I think the best thing he did for my neuropathy was reduce the carboplatin by 15% - both taxotere and carboplatin can cause neuropathy and he thought in my case it was the carboplatin - not sure why he thought that - but it was much better the 2nd go. I also have been doing the b6, b12 and L-glutamin through the whole cycle this time which I was not the first time - so who knows what worked or didn't.
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thanks everyone. Yes, I'm a fan of Ativan as well. It's like amnesia in a bottle. Lol. I took one last night, but it didn't last. I probably needed 2. The pain is just dull today, but my temp rose a bit too. 99.7. Keeping an eye on it. I also woke up with white disgusting crap on my tongue, is that thrush? I have been rinsing with salt and backing soda, is there something better for it?
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Ddkath70: The white stuff on your tongue could be thrush. Call your MO and describe it. If it is thrush, they can prescribe either Fluconazole, a single dose pill, or a prescription mouthwash that can get rid of it.
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thanks! I just talked to the doctor on call and he is calling in the prescription to my pharmacy. Thanks for the help,I can't stand this for one more minute. Ugh!!!!
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Ddkath70: You're welcome! I hope the Rx clears it up for you.
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Just curious, is anyone have a worse time with the mental SEs vs the physical?
I am extremely frustrated with the IDRS syndrome. I am misplacing important documents, getting in arguments with my DH about things he said I did and HE WATCHED ME and I don't remember it. Not big stuff but little minutiae that adds up. I really am beginning to thing I have chemo induced bi-polar syndrome. I am either extremely positive and manically upbeat and getting sH$t done at home and work or I am in a room by myself with tears coming from nowhere. Or, I have no filter and say whatever is on my my mind No matter what the circumstance.
When I feel good I try to accomplish as much as possible but I am finding that my body isn't telling me when I have over done it but my mind is. I get extremely irritable and overly sensitive. And, most likely cry. Maybe, the hormones kicking in with chemo pause? I don't know but it is extremely frustrating. I hate it that I now second guess myself on everything and can't defend my answers or decisions anymore because I freaking can't remember! I told my DH yesterday that I truly thought I was going crazy....I have never been like this before.
I know I have a lot going on between all this BC stuff, working, my only child graduating high school this week...lots of things to get emotional over. But, geesh, I think the chemo brain is worse than the neutropenia and colitis.
Thanks for letting me rant....
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mmtagirl: Yes! maybe not to the extreme you describe, but I find multi-tasking is impossible. I forget stupid things, I have ZERO patience for anything, I cry over too much (not something that I generally do at all) and I'm not able to focus at all. I have 3 more weeks left of my master's program, and honestly trying to do my final paper is excruciating. My poor family. I know and they know I'm not myself, but how long will this last?
And, thanks everyone for the input on the Ativan and Pepcid. Heartburn is so unpleasant!
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This was great to read as I was just diagnosed 4 days ago. How is it all going for you? Thanks, VeraAnn
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This was great to read as I was just diagnosed 4 days ago. How is it all going for you? Thanks, VeraAnn
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Hi Long Island, just wondering who you chose for your surgeon? I am getting second opinions after always going to NYU in Manhattan. Feel that I may want to be closer to home for this. Thanks, VeraAnn
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I wouldn't go so far as to say I'm bipolar, but I do have emotional swings. During chemo week, I'm cranky and cry a lot (and I am not normally an emotional person) and it is hard to focus. During my "good" weeks, I find myself overly enjoying things I normally take for granted: nice weather, flowers, a sale at Ann Taylor.
Switching topics, Zantac has helped with my acid reflux and gas.
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Thanks Jhondro and Everforward. Good to know others are experiencing similar symptoms. Jhondro, wish you well on finishing your masters!
Jamieh and mameme, I hope you are both feeling better today.
I get an extra week off from chemo this week that my mo allowed so I can feel good on Friday for graduation. It will be last round of AC the off to taxol. Good luck to those that are in the chair this week.
Oh, I have tried both Pepcid and Prilosec when I was on the one round of Taxotere. Prilosec worked much better for me.
Welcome to our board VeraAnn although sorry you are here. Your diagnosis is still very fresh and I am sure you are still a bit stunned trying to figure it all out. You will find these boards of wealth of information. Most of us will also tell you that the waiting for a plan is the hardest part. And, if you need chemo, you can see from this thread that you can manage through it. It helps to have others like these great women to talk to and keep your sense of humor when you can!
Happy Monday!
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mmtagirl - I think some of the emotional ups and downs can be exacerbated by how much else is going on in your life as well. As you said, you have lots of other potentially stressful situations going on as well as treatment. I do think it's definitely an effect from the chemo drugs and the overall situation, and you are not crazy.
For example - I haven't shed a tear over diagnosis or treatment (feel very lucky how it's all turned out so far). BUT, I find myself crying when the heroine gets the guy in a silly romance novel. I knew something wasn't quite right when I started tearing up because a couple got their dream house on Property Brothers. So, either I am just a batsh!t old lady, or these drugs are affecting emotions ...
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I guess we're all rooting for the couple to get the dream house on Property Brothers, so no worries there!!
Definitely not you, Sharon, it's the drugs!! -
mmtagirl - I can completely relate. My meltdowns don't always fit the scenario. In fact just today, I went to Physical therapy and all it took was her asking "How are you?" I had a good cry. And then my nose would NOT stop running thanks to having no nose hair.
Hugs
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thanks Mommyq, I'm only on my second pill and it's already helping. I had a weird night with fever spikes up to 100.4....almost go time.
I wanted to share something that my husband made for me. I may have mentioned it in an earlier post, if I did I'm claiming chemo brain. Lol. He wanted me to have something that not only shows the magnitude of the journey ahead of me , but something that would give equal weight to showing the progress. My silver lining is that there are more good days on this schedule than bad, I have to remember that. Anyway, here it is, so very special to me:
I get to pop one balloon every night, each day representing one of the 84 days on my journey. Those 6 little days that I popped have been pretty darn tough. I never imagined that amount if pain from the shot. I can deal with pain, but that was worse then when I broke my leg and reset it. Everyone is different, but whoever doesn't feel anything from that shot, I envy you!!
Gnight
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I am in the chair tomorrow (Tuesday) with AC number three. I really don't want to feel sick and go into that dark, dementor infested place again. I'm wishing you all the best and many SE free hours.
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good luck Blueberry!
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Ddkath70 _ I love what your husband made you!!!! What a great visual…I hope you will share more pics as there are less and less balloons left!! I am with you on the bone pain. Tonight was almost unbearable. Claritin really did help it I can tell now that I haven't taken it!
Blueberry4 - Go get 'em!!! I hope SE's stay away!!!
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thanks beingnana, it's only one clairiton a day, right? I will have to pay more attention next time.
So I'm going to sign up for the look good...feel better class. It seems like people were tornon the success of it and the quality if cosmetics.
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What a wonderful husband! With support like that you will breeze through this, one balloon at a time!
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Blueberry, I am not in the chair with you this round, mine was pushed back a week so I could feel decent for my daughter's graduation ceremony on Friday. I will be thinking of you!
Kind of glad I have another week. I left work at 2:30 yesterday to come home and take a nap. I also had some mild hip and leg aches. Unusual for me at 14 days out.
Ddkath, what a creative and thoughtful husband. Hope your feeling better.
Take care everyone,
Ann
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Ddkath, Your husband rocks!!! Love the balloon wall - what a lovely thing to do! Yes! You should post again as you pop more and more balloons. May all of you suffering with SEs have fewer and fewer of them.
I never had any boney pain warned of with Neulasta, but had been taking a daily Allegra for mild seasonal allergies for years. Same idea as Claritin. Don't know if all that anti-allergy stuff in my system had anything to do with it.
The LGFB cosmetics were pretty awesome. I'm one of those who never leaves the house w/out make-up and had used Bare Minerals for years and loved it. However, back before my first chemo in late February I went to the session and started using their make-up - liquid Estee L foundation, Avon compact, followed by some kind of Avon bronzer/blush multi color stuff swirled on with a brush. It looked great! I get lots of compliments on my skin. One of my friends from book club who went through ACT 12 years ago (still cancer free!) swears that the chemo does something flattering to your skin. Really?? She says that she was constantly complimented on her skin while going through it. If true, very weird silver lining. Lol
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Blueberry: I'm in the chair today for number 7 of 12.
Ddkath: Great, great idea! Love it!! So motivational to see the progress.
Mmtagirl: I was having leg aches and movement especially at night. If that sounds like what you're experiencing, my MO suggested Magnesium, which I've been taking about 10 days and it's much much better. Hope it's not too bad for you. Glad you get to have an extra week. It's so important to be able to enjoy such an important event!!
Happy Tuesday!!
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hi all
Just caught up on the posts and am sorry for those having issues with SEs. I truly can't complain about mine so far. My next infusion is next wed. The last of FEC. This week I am finding it harder to get out of bed but once I get going I seem to be ok. My dry mouth isn't nearly as bad as last week thankfully. I find that my 2 nd round was easier than the first. My period lasted one whole day!! Lol
Now I'm all freaked out about diet again! As a triple positive I have heard it all. No dairy. No sweets because of sugar. No meat. Eat like a rabbit.
Well I had cream of wheat this morning with brown sugar and bran buds. Strike 1 - added sugar. I had a dark green salad with salmon for lunch. Ding - that's good. I can't live like this!
Hubby and I are going away to Niagara Falls tomorrow night returning Monday. I plan to eat like I always do and did. Pizza? Probably when watching the hockey game. Oh oh! Cheese! Steak? Yes, we have to go for a nice steak while away. Burger and fries? Probably! Even so we both don't eat burgers and fries 7 days a week! But we did have smoked meat, fries and chopped liver on Saturday with my 91 year old mother
So, am I killing myself? Some claim to know so much, others say we know nothing. I plan on eating from the four food groups which does include junk every now and then
Argh!!!!
Had a band practice last night ! It felt great to play guitar and sing again! I also will be volunteering for the Canadian cancer society as an outreach volunteer and am so happy about that!
Cold love the pink wig! I want one!! Lol
Ddkath your hubby is a king! What a wonderful thing to do!!!!
I hope that for those of you with difficult SEs recover soon! Let's keep counting the days!!!!!!
And then.......LETS GO RANGERS!!!!!
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Crossposting because this forum seems a little more active.
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I am due for round three on Friday, but I have a pretty bad cold. Stuffed up and coughing up a bit (sorry if tmi!). Will they proceed with chemo? Do I call now to see what they say? I *really* don't want to postpone this.
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Hi boobie - I would make them aware - are you running a temp? Them may be able to give you something that will prevent you from having to delay treatment.
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No temp, just a yucky cold that hit like a ton of bricks. Perhaps I will give them a call. Thanks!
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I have a terrible cough and cold, but no fever, and my new doctor just ok'd my chemo for tomorrow. I'm a little nervous about this infusion. First, my new MO told me to take literally twice as many steroids as my previous MO prescribed. Why the big difference? I have to take five tablets 12 hours before, then five more 6 hours before my infusion. I'm getting dense dose Taxol for the first time and I am worried about new side effects. Also, a new nurse that I'm hoping won't have trouble accessing my port. I'm already on red alert because the nurse who did my lab work this morning blew the vein in my arm, then had to draw blood from my hand. Four hours later I still have a huge bump on my hand from it...should I be worried? Ugh. Can I just quit chemo?
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Hi girls. I haven't posted in a while. This is my good week but I'm just exhausted. The chemo hadn't really affected my energy until this third round. I'm just exhausted in the afternoon. This coming weekend we celebrate my bday, my daughter's 18th bday and Father's Day since I know I'll be sick as a dog next weekend. My bday is Sat. the 14th and my daughter's the 12th, but I get infused on the 10th, so... yeah. I got tix for the three of us to Belmont Stakes for this Saturday as an early Father's Day gift for him, so that should be fun. He is excited about the possibility of California Chrome winning the Triple Crown. Honestly though, all I can think about is having #4 behind me. I can't wait to feel like I'm on the other side of the hump.
My doctor also approved B6 and B12 as well as D and my multi.
Ice Cream - I ate quite a bit of it the week of my infusion and am now wondering if that's why I got such bad diarrhea. I'm not going to do that next week. Just something to think about. Dairy will do that.
I also take Pepcid for the heartburn. I did not know that Prilosec was stronger. Thanks for that info.
It's really warm here in NY today. I wanted to go for a walk after work, but now I just want to go home and take a nap.
Hope everyone is hanging in there today...
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We had a steroid mixup here. First the dr said to take 20 mg at night. when I got there in the morning the nurse said they only wanted me to have 8 mg at night and 8 in the morning because I had an ulcer. I was curious and called the American Cancer Society and talked to an onco nurse.
she said that some places give no steroids now. It's very flexible, apparently.
I think it's to prevent nausea but she said it can make you feel better all around.
Taxol allergy can be bad. I wonder if that has something to do with it? they give me a lot of benedryl because rarely people can stop breathing from the allergy. they cut back the dose on the second infusion but I made them aware that I had some itching between my toes and fingers, even with the big dose of benedryl so they did not cut back the dose the second time around. actually, they did but I reminded them so they didn't. I find I have to watch them very carefully. I've caught mistakes like that every time.
I'm having an awful day in spite of it being week 3. We went out for Greek food last night and it did not go down well. I wound up taking a couple of dulcolax and a couple of prunes and OMG, the whole day I've had terrible cramps.
I so know how you feel about quitting chemo! I'm counting the days...89 to go for 6 infusions. The dr did mention the possibility of cutting it to 3 infusions which would mean this Monday would be the last. I really feel between a rock and a hard place. The fear of those nasty cells vs the fear of these side effects. No fun at all!
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I can't believe the dosage differences with the steroids...my MO has me taking 20 mg twice, so 40 mg altogether before my infusion in the morning. AND I get more during my infusion! Crazy...I wonder if it's because I'm doing high dose of Taxiol. The nurse said it was to prevent allergic reaction.
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Are there a lot of different types of steroids? I hate them and wish I could do away with them. That is quite a discrepancy.
Called my onco and no fever, no problem. Thank goodness.
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Footballnut enjoy Niagara Falls! I live 30 min from there.
I keep following everyone here's progress. You are all being a help as I will be scheduling my treatments soon. My MO appt is Thursday. This is the day I tell him which treatment option I chose.
Keep on staying positive I keep telling myself!!!!
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I'm taking Dexamethasone 8 MGs twice a day the day before chemo, chemo day, and the day after chemo. So far I haven't had any nausea.
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With taxol, the first infusion I took 8 mg three times a day - the day before, day of and day after. And got an injection with my infusion (all decadron). It kept me up for days. So the next time, I just got it with pre-meds prior to the infusion. Now I am up for a day or two, even with Ambien. I'll try ativan tonight to see if it works better. I'm surprised that he is so adamant that I use it - - it really has been the source of many SEs for me. I've asked about stopping it my MO said it is much better than the side effects you'll have from straight taxol. I guess I'm going to take his word for it as I have only 5 more treatments.
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Hello Ladies! I've been MIA, I know, but I just caught up on everyone's posts.
Thanks so much for the compliments on the wig! I'm glad it gave everyone a big laugh.
SO, the SEs for Round 3 were terrible for me. I'm in what is SUPPOSED to be my "good week", but I'm still battling mild nausea (it just never went away!), and the FATIGUE. Geez. I've never been SO TIRED. And my muscles are always screaming at me. You know that feeling the day after a really good workout, and your muscles are sore and tired and weak? That's me ALL THE TIME. GAH! And don't even get me started on the dry mouth and chemo tongue. Blech.
AND, I have gained 8lbs so far! EIGHT POUNDS in just 3 rounds! I know, I know, better to have chemo-induced weight gain than cancer. But STILL. EIGHT POUNDS. And most of it appears to be water retention. I haven't been this puffy since pregnancy - even my ankles are swollen. And my pants don't fit. Which annoys me more than anything. Stupid pants. It's a good thing cancer patients get a "Wear Yoga Pants All the Time" card, right?
Footballnut - I have a friend who is a cancer survivor who keeps throwing the "don't eat this and don't use that product and avoid these things" lines at me. If I followed all the "advice" out there, I think I'd have to live on lawn clippings. Seriously. And in all honestly, I've been a very healthy eater for a long time, but I still got cancer. So I say enjoy your weekend away, eat delicious foods, and be sure to tell us all how fabulous it was when you return.
mmtagirl - I haven't had so much the emotional SEs, but I do forget things. A lot. Like VERY a lot. Losing words is the worst. It's common for me to start a sentence and then forget what I was going to say a few words in (trying to carry on a conversation with me is a HOOT). And during certain weeks, I really don't even like driving anymore, because my focus is just GONE. It's like my brain just decided to let me handle the whole chemo thing without it.
Ddkath - Your husband is a rock star. Give him a big HIGH FIVE from me.
And regarding the bone pain? Taxotere can also cause some serious body pains, and in combination with the Neulasta, it can get pretty nasty. Be sure to mention it to your MO. If he thinks it's due to the Taxotere, there are things he can do to help. Anyone else's nose run ALL THE TIME? Seriously, it's too bad there's not a market for snot. I could totally cash in.
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Thanks for the support about my treatment today. It ended up being postponed until next week due to low WBC. My neutraphils were 1000 and I guess they need to be 1500 for treatment. I didn't have the neulesta shot last time, because I guess some people's counts come back up on their own. We learned that I am not not one of them so I will be getting the shot next time.
I haven't had any steroids with treatment yet, but I haven't started taxol yet either. It's so strange that treatments can be so different.
I told my doc atoday about the depths of my nausea in the days following treatment. He said I am getting all the meds and put me on ginger pills twice a day for the rest of treatment. For those with terrible nausea, what is the strongest med your doc prescribes? I get IV a aloxi and emend and then zofran and promethazine for home. What else can help? There is a study on this site that showed a link between ginger and less nausea, so I'm hopeful.
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Jhodro, I'm on weekly Taxol now (#6 of 12 tomorrow) and take two 8mg Decadron the night before and 2 the morning of, which cause sleep issues both nights. I discovered OTC Unisome for sleep during my AC - it really helped me then & now. My MO is anti sleep aides - nurse told me she's had too many women who can't sleep without them post chemo. Unisome is just about the only OTC sleep aid that does NOT contain Benedryl, which hypes me up instead of making me sleep. I take one about an hour before I want to sleep the day before and 2 the night of Taxol. Works like a charm. Before I take anything I always check with my MO office. Good luck! Everyone needs good sleep - especially us.
Footballnut - I say eat whatever you can tolerate! As for me, a little ice cream before bedtime is my daily treat. Now's not the time to go on a health food kick if your taste buds are off, and it sounds like you were eating healthy before bc anyway (me too:-). Speaking of taste buds, mine were shot to hell on the AC. I was ravenous when I did eat, and couldn't wait to gargle with my baking soda & salt water mouthrinse and brush my teeth after - felt like there was a slimy taste in my mouth and struggle to find something that tasted good to me. Happy to report that Taxol is different in that regard. Food tastes so much better.
May all you brave ladies struggling with SEs have fewer and fewer of them.
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Blueberry, sorry to hear your neutrophils were to low for chemo yesterday. If you were pushed back to next Tuesday we are back in the chair together again next week for my last AC. Woohoo! The on to taxol.
For nausea my doctor has me on IV decadron and something else IV I can't remember. Oral emend, zofran, decadron for 3 days following chemo and trimethobenzamide. I also sip on yogi brand ginger tea.
Cold, I totally get the forget the word thing. Happens to me all day long. And, don't get me started on the runny nose. I can't go anywhere without a wad of tissue. My nose hair was the first to go and it has been nasal drip city. My DH won't let me drive out of town. I am too stubborn to say I shouldn't drive. I am like the old lady who doesn't want to give up her independence. I haven't found myself in unfamiliar places yet without knowing how I got there so I think I am good to go. Never mind that sometimes I take alternate routes I never imagined to get to work. Lol.
Speaking of which.....better get up and go to work!
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I have trouble remembering things and I know it. But my husband has taken a new tack that drives me nuts. When he hasn't told me something (and he tends not to) and I say "I didn't know that" he says "I told you". It's like Gaslight. At first I believed he really had told me and I remember NOTHING which is a scary feeling. But now I'm wise to him. I know he hasn't told me some important things and he's just saying he told me to get off the hook.
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cold loved the reference to lawn clippings! You gave me a giggle with that! I just told my DH yesterday that some would have me live like a rabbit and I just can't do that!
I am so excited! I will be volunteering with the Canadian cancer society as an outreach volunteer! This will give me the opportunity to share information about cancer as well as my own story!
Whoop!
Hockey starts again tonight ! Can't wait!
It may sound silly but I feel so good sometimes that I get scared that the chemo is not doing anything. So far SEs have been minimal thankfully but it makes me wonder
Silly where our thoughts go!
Tonight we leave for Niagara Falls. Going to the shaw festivsl Friday, stomp on Sunday and we must hit buffalo!!
Have a good day all and thanks for being there!!
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Cold, You should write more, your observations are so funny and your word choices are the best. I would read your blog if you did one. Everyone here sounds like they would, too. Not that you need to be doing that as a public service to us, but it would be wonderful!
Nose hair and drips, fatigue off and on, check, check. As far as impassioned advice to eat this way or get this skinny or work out this much goes, I suspect it comes from a fervent desire to control what is otherwise still a huge cluster of unknowns. A beloved MD here who was all into alternative diets, meds and lifestyle succumbed to cancer recently, as have other local folks whose lifestyles were impeccable. It makes me feel that good health practices are still good, but not curative. Michio Kushi's family, total macrobiotics, had cancer in two generations. Its frustrating and hard to grasp the complexity of this disease. Do the things that make you feel your best.
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Good morning Ladies!
Yesterday I rang my bell! Yep I have officially finished my chemo.
It has only been two weeks since my last chemo, so I didn't get a good week this time. I went with mild leg cramps and a little nausea, and I came home with severe leg cramps and bad nausea. The good news is this morning I feel semi-OK. My daughther's fifth grade graduation is in an hour,so I am going! YES!
I will keep you all posted as to the "when does this happen after chemo" moments as I reach them.
My upcoming schedule is this
3 weeks my final reconstruction surgery Bye Bye Tissue Expanders and port. Thank God!
6 weeks I begin my Tamoxifen.
My MO says two to six weeks and my chemo side effects should be gone. The Tamoxifen's biggest side effect is hot flashes. Since I am and always have been cold I am not sweating it (not Yet LOL).
Have a great day ladies. I'll check in later
DDKath Love the balloon wall what an awesome way to help you through your journey.
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Congratulations on completing chemo, mickishelley!!!!! I think you are the first from our group to make it through. Good luck with the upcoming surgery.
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Football, I've had similar thoughts about the chemo "not working" because my SEs are relatively moderate. The most awful SE has been terrible bone pain from the Neulasta. But the chemo has only resulted in moderate SEs: hair loss, a sensitive inner mouth, but no sores, uncomfortable digestive issues, but no nausea, no neuropathy, and my fingernails are fine, some fatigue. I feel like I'm getting off easy and my neurosis scares me into thinking that the chemo isn't doing its job.
Congrats Miki! I think the rest of us will try to live vicariously through your post-chemo self!
In the chair today for round 3. Die you little f)(#%*s, die!!!
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congrats miki! So happy for you!!
Everforward I am with you! I'm in the chair next wed for round 3 which will also be my final round of FEC. Like you I've yet to have mouth sores. I notice that I have more fatigue now and if I don't push myself I can sit and do nothing all day very easily
The worst SEs for me was round 1 with nausea and a bit of vomiting. Since then a bit of stomach cramping, feeling wired, dry mouth and the hair loss. Other then that I've felt great
The worst is when I sit at home alone and let myself veg. It's then that I start to go to the negative
I have to kick myself in the ass and remind myself that I can still have a long life and die of something else other then this cancer shit. Breast cancer does not get is all. When my day comes I just hope that it's many many years from now as go we all!
Enjoy your day all!!
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Mikishelley congratulations!!!! You did it!!! I am really looking forward to reading about how your days & weeks PFC go!!!
Football nut have a great time at the falls! I love it there.
Everforward I hope #3 is a breeze for you!!!
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Congrats Mikishelley!!! Celebrate like you never have before, but take small breaks LOL.
Ever - good luck I hope #3 is a breeze for you and you continue having minor SE's (lucky!)
I passed all of your comments on to my husband, and he was so happy that y'all liked it. It has been really helping me with progress, and it's a nightly ceremony now. "Time to pop my balloon!", I get my hubby my MIL, and my 5 fur babies in the room and I pop it!
Its the little things -
Congratulations Mikishelley!!! So happy for you!
Ever - good luck I hope #3 is a breeze for you and you continue having minor to no SE's. I too have been lucky with minimal SE and feel the same way as you and Footballnut. Hair loss, yucky mouth, but no sores and a little fatigue. My DH says its the positive outlook and all the love and prayers from family and friends. I'm pretty sure, I'm just lucky, so far.
Here's praying for minimal SE for all today and through the rest of this journey.
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mikishelley- Congratulations!!!! The swap is gonna be a piece of cake and it is almost like instantly you can breath again
As for me I will be starting Taxol, Herceptin and Perjeta on Monday. I am not looking forward to being in the chair all day BUT I will be getting my trusty friend Herceptin which is gonna keep me dancing with NED forever.
My side effects have been out of control and at this point I just hope my digestive track can recover. I am hopeful and so in my oncologist. Now I move onto the target drugs to kill the beast.
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I am resting this afternoon after my fifth infusion! I started Taxol today, and for several reasons, this infusion was the easiest I've ever had. I feel a bit drained, with some mild stomach uneasiness, but not the same as on AC. I'm sure the reason I can't sleep is due to the overload of steroids in my body right now!
My decision to switch MO's was a good one. One of the main issues I had was the long wait times and overall crowded atmosphere. This morning I arrived for my infusion at 8:30, and was home by 12:15. At my old MO's office I would not get home until 4 o'clock. Plus, my new MO is focussing on me, whereas I felt ignored or forgotten before. Yea for taking matters into my own hands and making the change
Hope side effects stay away tonight, I've got to attend a parent meeting at my daughter's dance studio in a bit. Hope you're all having a good day!
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First, I would like to thank all of you who gave me feedback on the port procedure. Your assurances made me feel quite positive about the experience and it did go very well.
I had it installed in the AM and then went to start my 2nd round of taxol (3 on 1 off) I have had a few side effects but nothing really bad. I am losing my hair albeit slowly and I still have overall coverage. It is just thinner. My fingernails are bubbled from the cuticle out about 1/8th of nail. I have a lot of bone pain in my hips and spine and my gait is causing stress and so pain in my knees and feet. I did have a lot of swelling in my feet but I took parsley tablets and that went away. All in all I feel pretty lucky when I read of what so many are going through.
Here is the kicker. Today I had my appointment with my MO just before my treatment. He said my blood count was lower (2.7 or 1200) and my C-125 was down for ovarian cancer but up for the breast cancer. I just let it pass when I was in the office but the more I think about it the more I am freaking out. No one has ever mentioned ovarian cancer to me before. I was sure that at my age they had dried up and blown away.
Has anyone else had this happen? Any feedback?
I am also going to post that on another discussion board. Thanks
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Last app my tumor markers (c-125) went from 30 to 50 so the dr ordered a ct scan that came back normal. There are lots of things, like diabetes, inflammation, etc. that make make the markers go up. I'm getting chemo for endometrial cancer. My ovaries were removed in January and they were clean. Too bad there isn't a test that can detect those rogue cells we're going after.
Btw, I learned when I had my hysterectomy that at 64 my ovaries were still producing some estrogen. apparently they don't turn to dust after menopause.
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Mikishelley - Congrats!!!! So they really DO let you ring a bell - love it! Will have to find out if my MO has one. So cool. Glad you felt well enough to go to your daugher's 5th grade graduation. Everyone of those milestones is important. We have 7 grandchildren who all live nearby ranging in age from 22 month old twin boy & girl to my 13 yr old granddaughter. We are always going to one milestone event, recital, game, concert, you name it for them. Makes us feel like we are going through our kids' childhoods again. All those moments are special. Enjoy!
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JaimieH What do you mean by Herceptin which is gonna keep me dancing with NED forever. What is NED? I will be doing Herceptin in July through next May and was wondering what you meant. Thanks -
Amyo: Ned is no evidence of disease. For those of us Her2+, it's really supposed to help attack any cells that might be producing the HER2+ (rogue ones).
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Mikishelley, I am doing the happy dance for you! Congratulations.
Blueberry, my bloodwork this week showed WBC of 1.0 and ANC of 270 which would mean had I not already moved chemo back a week it would have been moved back anyway like you. I did not get a neulasta shot this past round. My doc thought counts would rise on their own with the extra week off. I hope he is right. I am worried now about being in a large crowd of people on Friday at the graduation ceremony. I will not miss that! I guess I will douse myself in anti-bacterial lotion.
Anyone run into low WBC on weekly taxol? Do you get neulasta shots weekly?
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Thanks Jhodro!
amyo- Herceptin is used for Her2 ladies to prevent recurrences. NED= No evidence of disease (also teased as my boyfriend) who left me in March. Perjeta is also a new drug that was released in October of last year supposed to help prevent recurrences of her2+ breast cancer. Ask your oncologist about them if you are Her2+.
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mmtagirl: I have not needed neulasta on taxol, and my counts have stayed within the limits. Usually they are lowest on the third week, then bounce back on that week off, 3 on 1 off. I consider myself lucky.
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First taxol today and so far so much better than AC! I know it's a little early for the happy dance but so happy for way less nausea, headaches, dizziness, etc. Just a sort of uneasy feeling in my stomach but that's without taking anything for nausea!! And because I didn't have any reaction to the taxol next time I drop my steroids by half and then off if all continues well
I had some brief burning in my right foot and hand twice today, lasted for less than 5 minutes, but I will mention it to my MO and talk about icing next time.Could it be? Is there really life after AC?
Two people in Calgary rang their done chemo bells today, and one did a video and dance. It was encouraging to see, but I have a question. What about those in the chairs that day that won't ever get to ring the bell? I am thinking about ringing it at the end of all this, but I would hate to hurt anyone that doesn't get to ever stop chemo. And I could always celebrate away from the centre too. Any thoughts?
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Oh and is the 3 on 1 off usual for Taxol? I don't get a break...
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Thank you all for the congratulations. Wow I thought #3 was bad. I can hardly move this morning. Hello my old friend fatigue!
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Hopefully you can sleep off the fatigue, mikishelley. Then on to recon.
I go in for Treatment No. 3 at noon, assuming all my bloodwork is in order. I do not get Neulasta shots and no blood checks in between chemos. And I have no port. Kinda feel I'm getting the K-mart version:)
If I am any more fatigued after this tx they may need to hook me up to IVs to take care of feeding and other bodily functions.
Good Luck to all who have already had treatments this week, and those going in today and tomorrow.
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SharonDe Thanks but I can't seem to sleep. Good luck on #3. It does kinda seem your version is a K-Mart version, What is going on with that? How many chemos do you have scheduled?
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Mickishelley - sorry about the sleeping. I finally got some Ativan after no. 2 and that helped immensely.
I don't know what's up at my center. I think they treat conservatively. The nurses are good, and so far I have had minimal side effects. Am going to have a discussion about the bloodwork with my MO today. The steroids have my glucose elevated so I am now on the borderline for diabetes treatment.
Only 2 more to go. I wanted to have these last two treatments in Maine, but DH was nervous about switching midstream. I tried to explain any center could hang IV bags and drip 'me in.
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clarrn...I'm with you on the Taxol. I woke up this morning after my first Taxol dense dose infusion, and I'm in shock how normal I feel compared to the miserable hangovers I'd get from AC. Could be the steroids, but I'll take it!
I feel like I can see the light at the end of the chemo tunnel...three more Taxols, and I'll be done middle of July. I'll have two weeks of summer after my last infusion before my kids head back to school. For the first time since I started chemo, I'm having positive thoughts
I think we will take a trip back "home" to Minneapolis if I'm up for the drive. Life after chemo...can't wait! Now if only I'd have a head of hair to really be back to my old self Funny how the hair loss is still the worst part for me.... -
Sharon I only get blood work if something is wrong in between treatment or else I get it on chemo day. They believe it is one less poke for me.
Clarnn- I am glad to here you say that taxol seemed easier so far. I hope that I follow suit because the AC SE's are going to destroy me from the inside out.
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Swissmiss I totally relate about the hair loss. One of my first thoughts after ringing the bell was I wonder when the hair will start to grow back. I'm thinking a month or so. Not sure. I will be sure to post on here when I begin to see some growth.
SharonDe- Do they draw blood before they start your chemo?
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Yes - I get blood drawn before Chemo. Basic info is ready within minutes. They also send a sample out for more complete analysis. I believe my center is competent, just no frills. My DH doesn't like my MO, so that doesn't help. I'd rather he didn't go to the appointments, but he wants to help
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clarrn: my taxol is 3 on and 1 off. So glad you're feeling good! As far as ringing the bell, I don't think it is bad in anyway for someone to celebrate. Maybe it gives some hope?
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SharonDe Hope all goes well!
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Thanks, Mikishelley.
In the chair now, getting premeds. Blood work was good. I seem to bounce back each time without the neulasta shot. Good visit with the MO. She said she will cut taxotere dosage down for no. 4 if cumulative fatigue is too much after this one. Now, for a nap.
Hoping everyone else is doing well.
2nd of several wigs sent by the kids:
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Cold, I am right there with you regarding the 3rd round side effects. I never bounced back from it, and I am just tired all the time now. Have said goodbye to exercise for now - need all my energy just to complete a somewhat productive day. And I too have gained a bunch of weight which pisses me off bigtime. Had to buy new pants... ugh. I am actually looking forward to, and wishing I could push up my 4th round to now instead of waiting til Tuesday. But not really - this weekend we have a lot of fun plans.
SharonDe - my center is like yours. Only I haven't even seen my MO since the original consultation. My bloodwork is always good and the nurses are awesome. I imagine he'll pop in at some point. Btw, love the wig!
Mikishelly - I am super stoked for you!!! Woo freakin' hoo!!! Yes, please keep up in the loop on post-chemo stuff.
SwissMiss - I feel similar to you. I am actually getting a little excited thinking about August and how I'll be getting back to fitness and fun, sunshine and beaches, etc.
I was really ticked off at the timing of this in the beginning, but now I am grateful. The worst of the treatments will be in summer when I'm not really needed at work since school is out. I also can just sit around and watch my garden grow. No holiday stress in the mix, etc.
Hope everyone is having a good day.
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blueberry...your post was awhile back, but I had HORRIBLE rashy red heals and couldn't sleep so I went to see doc and he did lower my taxotere dose...I also put cortisone cream on it and it helped but it was unbearable at night! He Didn't mention neoropathy but I had a bright red line of rash around the back of my heal/foot and peeling...I always called my onc for weird side effects and he usually helped me with either meds or lowering drug dose. Rosie
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Clarrn, thank you for posting about taxol and life after AC. You gave me hope. Once I begin taxol I will be weekly for 12 weeks with no break. I think all the different schedules have to do with dosage and duration. Is your MO supportive of icing? Mine is skeptical, but has said I can do what I want when I start.
Congrats, mikishelly! I hope you feel better soon. Keep us posted on life after chemo.
I hope all the ladies with tx this week are feeling okay.
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I had forgotten to ask about icing so will ask next week. Day after Taxol and NO meds required for anything other than heartburn
Able to keep my 3 year old busy by myself and even cook/warm up meals. And hubby and I puffed around my 1 km loop again today. I know it's nothing compared to what I used to be capable of, but right now I'm happy to be off the couch, even if it doesn't last all the way through. I know that the fatigue will come! But today I can smile.Encouraging thoughts with all of you in treatment this week too! We are doing it! One day/step closer to finishing. And I think I will ring the bell. Celebrate what we can!
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For those of you taking Neulasta, have you noticed any change in the degree of bone pain as you progress through treatment? Round 2 was worse than round 1, and I'm already feeling the effects this morning of yesterday's round 3 shot. I haven't found anything that helps with the pain and muscle ache. When it gets too bad, I just take a couple Percocet and try to sleep through it.
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A Brief Timeout from the Serious Stuff - I present the
Adventures of the April Chemo Club - a Pictorial Overview (apologies for the length of the post - I tried to do it as a slide show, but having some issues)
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SharonDe How wonderful of you to make this! Beautiful!
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SharonDe that is amazing!!! Thank you for doing that!!!!
Everforward my bone pain from Neulasta has definitely increased in intensity with each round. I had round 3 a week ago and this time it was almost intolerable. I didn't take claritin as long this time so I don't know if that has anything to do with it. I am going to try and take it longer after 4 because this was bad. I hope you feel better. Mine usually improves after day 5.
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Sharonde: that is really awesome...Thanks for putting it together!! Everyone looks amazing!
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SharonDe, that is AMAZING! Thank you SO VERY MUCH for the HUGE SMILES this morning! A great big HUG sent your way!
P.S. Your wigs are AWESOME. I love your sense of humor! Clarrn - SO happy that you're feeling better!
EverForward - I DID find that the bone pain was more severe after the second Neulasta injection, which for me was Round 3 (of course, I found EVERYTHING worse for Round 3), and I alternated Tylenol with Ibuprofen (as long as my temp stayed normal) to help with the pain. I think the Taxotere body pain combined with the Neulasta bone pain just made everything worse. And I took Claritin EVERY SINGLE DAY up to RIGHT NOW, which is Round 4 Chemo Day for me (BLAH).
In the Chemo Lounge in 3 hours Ladies, waving to all those who join me. And to those in the Dark Place, sending hugs and healing and strength.
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Sharon- I love it and all the strength and support that it represents!
Everforward - hope the pain subsides soon!
Cold - good luck today, hope round 4 treats you better!
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mikishelly - that is awesome, girl!
SharonDe - thank you for sharing. Made me smile!!!
ColdInCanada - good luck in the chair today. I hope everything goes smoothly with very little SE.
I had some good news, for a change. I was at my surgeon's office the other day. Had an ultrasound and it showed all my tumors are smaller. the biggest one initially was about 5 cm and now is closer to 3 cm. My surgeon was super pumped. She high fived me. The chemo is working and I'm half way thru treatment. Very reassuring that I'm responding. Not bouncing back from treatment #3 like many have posted. Exhausted.
I hope y'all have a great and easy weekend!
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Sharon - A sisterhood of amazing women. You captured it so well. If one picture is worth a thousand words - this is a volume of inspiration. Thank you!
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Golfingirl - What awesome news!!!!!! Congratulations.
Ever- My Neulasta bone pain is worse every time. Matter of fact Round #4 is kicking in real hard right now. I just hope it subsides before I go back to work Monday.
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Sharon- ty ty!! so very nice
Everforward - my bone pain was less for round 2 than the first time - but I got the shot in my stomach for round 2 versus the arm. Debiann had heard from someone that the bone pain was not as bad if you got in the stomach so I decided to try it - not sure if that was the reason but it definetly was less intense this time. I am going to continue that - I do take the claritan for 10 days and I start the night before the shot - so the night of chemo
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Nothing seems to help with the Neulasta aches & pains. This is easily the worst part of my treatment. I'm seriously thinking about ditching it next round.
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SharonDe - Awesome job! Thanks for fabulous montage!
For anyone reading this post looking for guidance who has not yet started Neulasta, I guess there are some lucky ones out there like me. I never had any of the bony pain associated with the shot ever. I was told that if you do not get pain after the first shot, it's unlikely you will get it. I do take a daily Allegra for seasonal allergies (like Claritin, which many are advised to take day of shot), and have for years. I've no idea if that's why I never experienced any pain from the shot.
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Golfingirl that is great news!!! I am so happy for you!
Cold I hope your treatment goes really well and you have less SE's!!!
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Home from the Chemo Lounge, and feeling pretty good. I am SO medicated right now though. My oncologist added Emend to the never-ending list of drugs to combat the never-ending nausea. SO, this morning I took Claritin, Dexamethasone, Zofran, AND Emend. This will be the regime for two more days, and then I *can* continue with the Zofran if I need for Monday and Tuesday. AND, I have Stemetil to use "as needed". Whoa. And WOW. I'm feeling good right now, but slightly LOOPY.
And, most likely, with THAT much medication in my system, even if I DO feel awful, I probably won't remember it anyway. Win-Win, am I right? Mikishelly - CONGRATULATIONS! You are my GOAL, Friend!
Golfingirl - Such awesome news! Happy Dancing for you!
Waving to you all from the Chemo chair!
Happy Weekend to you!
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Way to go Cold! I am scheduled for #4 on Tuesday! Let's hope things level out this time. With only a one week window now of feeling good, we can't afford for the window to get any smaller! Good luck, girl!
Golfingirl - I am ecstatic to hear your amazing news! Keep at it girl! "Die little f&#)kers, die!"
I too did not experience any SEs from the Neulasta. But like you, MoMom I take Zyrtec for seasonal allergies.
Today I got into a heated debate on Facebook with a guy who is anti-chemo and trying to push alternative medicine. I got so ticked off because he was bashing chemo and the people who take it, on a breast cancer site that posted an informative video about chemo & what to expect. Ugh. I get that other people have opinions and different viewpoints, but choose your forum with a little compassion. He actually said that people who take chemo are lazy and misinformed. Jackass!
ANYWAY... this weekend I plan to get a bunch of chores done and I'm having family over on Sunday to pre-celebrate the upcoming bdays and father's day since next weekend I'll be in another dimension... lol, the dark side not the twilight zone.
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cold The Emmend will make you say Amen.
. I hope 4 is kinder on you. Golfingirl- that's great news!!
Long Island I delete and go head to head with idiots like that. The majority have never heard the words you have cancer. Grrrr
Well I am excited my next rounds of treatment are approved and I start on Monday. Crazy how I had to argue to get the insurance to pay for them.
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Sharon, thank you for including me in your collage! Everyone looks great - it was nice to see all the smiles
Clrrn - happy you are doing better!
Cold - is this your last?? Are you celebrating?
Love your ty-dye scarf! I had to go to urgent care today due to a UTI. I called my MO and they just said to be sure to get there today and start the antibiotic if it was positive, and it was. So, I'm home taking it easy tonight. I can't complain really, I'm on day 10 and I have felt great the last few days. Tired in the PM, but I'm able to get out and do a little retail therapy which was something I didn't think I was going to be able to do. #Grateful
Hope all you ladies have a great weekend!
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Glad y'all liked the photo collage - it was fun to do while on my steroid high. Keep the new pics coming.
Longisland - can't stand those anti-chemo blowhards. Like we are doing this for fun.
Day 3 after tx No. 3 and doing very well. Fatigue has not set in yet, so I am going to see if I can move around more instead of succumbing to it.
I am still surprised at how much hair I have. No regrets about shaving it, it would be clumpy now anyway.
Wishing fewer SEs for everyone.
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Sharon, that collage series was INCREDIBLE! You really socked it to us, I can feel this upsurge in loyalty and my sense of being in this all together. What a treat! How long did that take to put together? Are you a techie?
My desk top computer will not let me sign in, and I can't add pics from my ipad, so once I get that figured out I will share more of the progression of hair with you all. I no longer look like the avatar, that's for sure. : )
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Wow Sharon, That was a great collage. All the pics are beautiful. Thank You for that.
The bad week is coming up for a lot of us. I know I am dreading it. Prayers that it won't be so bad.
Thank you all for listening & being here.
Here's to easy SE's!
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Thanks, Mame. I am a little techie, but these were done with an iPad App called Pic Collage - the grand kids taught me how to use it
I think they were mentioned earlier, but I am in love with the Original Buff head covers. The most comfortable thing I've found yet. I finally get my chance to play Survivor.
Added - hugs for an easier week, merg.
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SharonDe: GREAT collage. Nice wig too!
Golfingirl: That's great news from your ultrasound that the chemo is working! Woo hoo!
mikishelly: Congrats on finishing treatments! That's awesome. Looking forward to your posts of life after chemo.
Taxol Ladies: I'm happy for you all that the Taxol treatments have fewer SEs. That's excellent.
Ladies with Nausea: I read that sniffing a little isopropyl alcohol helps relieve nausea for post-op patients. I also read that it helps some chemo patients as well:
Here's a link to one of the articles about post-op nausea relief: http://www.ncbi.nlm.nih.gov/pubmed/15632723
And here's a link to a page where at the bottom where people wrote comments, some chemo patients said it helped and some said it didn't, so it's probably worth a shot, since everyone has some around the house, right?: http://www.earthclinic.com/CURES/nausea.html
Enjoying the good days until I go back in the chair on Wednesday for TC #3, which will be my chemo halfway point.
Have a good Saturday y'all!
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SharonDe: Is it BuffUSA.com? I am looking for some lighter weight scarf/hats for our vacate in a couple weeks. I'm just worried some of these won't cover the back of my head, or am I looking at the wrong thing? Thanks!!
Hope everyone is able to enjoy their weekend, or some parts of it. I'm headed for an afternoon nap now.
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Yes - Buffusa.com
They are actually quite long, so you have lots of options. Check out the short video on the site for 12 ways to wear them.
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Thanks, SharonDe!! I just watched and ordered two. I find that all the head covers I have are very hot, and it hasn't really even gotten much over 80 here...
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I love the collage, Sharon. We all look awesome and strong. Thank you.
I don't understand the anti chemo bunch. I would never tell them not to have vitamin C infusions or coffee enemas or whatever they think will work. I'd keep my judgements to myself and wish them the best. Why must they push their choice on us. We all have done our best to choose the best path with the best possible outcome. The world looks completely different when you are faced with the choice of chemo/no chemo when you actually have cancer. As someone else already said, I think many make the statement of, "I would never do chemo," without having faced cancer. Nobody chooses this for fun. Perhaps what they really mean is, "I would never have cancer," as a way to put the fear at bay that this could ever happen to them.
I purchased buffs from Amazon and love them. They are light weight enough to wear in the brutal Texas heat. Go buffs!
Have a great weekend ladies!
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Thanks for the links, mommyq. I am one of the severe nausea ladies and will check them out. Hopefully, the ginger I am taking will help to lessen it next week. I smell like a ginger snap all the time now. :-)
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Ddkath70 - I WISH I could say it was my last, but sadly, I still have two more to go.
On the upside, I have now officially finished more infusions that I have left! So, YES, I am celebrating THAT. Go ME! Emend seems to be working. I'm definitely more tired the today, the day following Chemo Day, but there's almost nothing in the way of nausea (as long as I don't let my stomach get too empty), so I will take that as a WIN.
Blueberry - YES. What you said. EXACTLY, because you expressed it so well. Until you're actually faced with cancer, you can't begin to know what choice you would make regarding chemo. And the "coffee enema"? HA! You totally cracked me up with that one.
P.S. PLEASE tell me there's no such thing. Wishing you all a Happy, SE-free weekend. I'm hoping The Dark Place won't be so bad this time without the nausea. And THEN, when I come out on the other side into the Light, I will only have to do it TWO MORE TIMES. YES!
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Well said Blueberry!
I have one friend who said "no chemo" and I think she is coming from her heart, not her head.
She can't handle it.
Others have this crazy political thing where they think that the medical community is making a bunch of money off of us.
There is a kind of arrogance about it that blows me away. Steve Jobs was a genius. He'd probably still be with us if he'd had the humility to believe that drs. knew more about cancer than he did.
And there are a lot of quacks out there telling vulnerable people that tomatoes or blueberries will cure them.
To tell the truth, it's hard to believe that all of this poison is "good" for me. lol So yeah, I'd rather have blueberries. Problem is, I was eating a lot of blueberries and broccoli when I got cancer...
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Ok, I'm thinking twice before I drink coffee anymore! I needed a laugh today. Thanx Ya'll.
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Coffee enemas are real! Definitely told by a few of my palliative patients that they had tried it!
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I think Princess Diana used to get those.
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Cold - so glad to hear the emend is helping. I hope it continues and you can get some rest.
Blue - good luck with the ginger. Now I'm craving ginger snaps!
SharonDe - thanks for the buff idea. I have two I use when backpacking. I forgot all about them. I'm going to find them!!
For the record... that's a total waste of good coffee. The only place coffee is going in me is in my lips!
Quite tired here this week. I feel pretty good in the morning and fade quickly as the day wears on. I took advantage of it today and took my motorcycle out for a couple hours with a friend. That's my idea of therapy. Fantastic. Made me feel 'normal' for a little while. Until I took off my helmet off and had some funny impression on my bald head!
Have a great weekend everyone. I hope it's easy and restful.
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I just got palpitations and felt I was going to pass out. Lunged for the sofa and lied down.
It all went away but it was so scary I'm thinking I might stop chemo. Has anyone else ever had something like this happen? I'm on Taxol and Carboplatin.
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So I had to google coffee enema. Don't do it. But it was definitely great for a chuckle. Luckily I'm not a coffee drinker, could have ruined it for me.
I feel like the anti-chemo peeps are similar to the no-vaccinate peeps. I know it is political too. The whole thing frustrates me. I lived next door to a non-vaccinator when my son was an infant, she chose not to vaccinate and her two kids got whooping cough while my son was too young to be vaccinated. We were terrified he was going to get it because it was during the summer and my kids had played with her kids, blah blah. So yeah, don't vaccinate. Don't do chemo. Doctors only want to make money. I don't know about you, but the team that I'm working with, they are definitely not in it just for the money. Plastics, maybe. But oncology, I don't think so.
Timbuktu: I'd call the doc. Who cares if it's saturday night - - you should put your mind at ease. Hope you feel better. And like you, I was eating pretty clean and definitely organic when I got cancer too.
![:\](https://breastcancer.vanilladevelopment.com/resources/emoji/confused.png ":\")
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Timbuktu, I hear you, sister. The dizzy thing happens to me when my blood pressure drops. I run low to begin with, but with chemo I'm usually 90 something/60 something. When it drops I get really dizzy and sometimes the world goes grayish purple, and my heart pounds. My MO says to stay hydrated, so I do. I have no solution or advice, but you are not alone.
Jhodro, I don't get the feeling my docs are in this for the money either. I hope they make a lot of it, but they never make me feel that it is a factor. I even think my plastic surgeon truly cares and wants a beautiful outcome for me. His office is gorgeous, and he is clearly made out of money, but still I don't think it is only about the dollars. It doesnt make any sense that docs would routinely give treatments that don't work, because then, even if they were in it for the money, they wouldn't make any. Sometimes people say such hurtful, uninformed things. Also, I'm sorry you had the scare about whooping cough.
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Timbuktu- I had those issues last time on TC. It was my red blood cells were WAY too low and I need a blood transfusion.
. I would call your MO and let them know what is going on.Golfingirl - glad you were able to get out on your bike.
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Timmy, I had a near fainting episode last week, also. Its no fun. Scary. Call the doc.
So, I solved the problem of getting onto BCO on my desk top rig, and have been changing avatars because I can... Now to settle on one for awhile!
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Timbuktu - that sounds very scary. I have also been getting syncope and pre syncope ( passing out and almost passing out). Call your OC for sure. It could be caused by many reasons. Palpitations are often caused by low electrolytes. Hydrate well. Gatorade could help. Hopefully it's an easy fix. They don't know my cause yet so I'm getting a heart monitor before my next round.
I'm with y'all. It's not about the money. If there was a cure, I know they'd be glad to be out of business.yes, chemo is barbaric to some degree. I don't want to go thru chemo. Give me an alternative that has actually, scientifically proven to save lives and I'm in! When it's your life, you don't mess with 'it may work'. You take the stuff that is proven even if it's tough.
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I really appreciate everyone posting about their experiences. It's nice to know that you've all survived!
I see my onco tomorrow, supposedly for another infusions but I think we'll have a talk first.
It's very reassuring to know that I'm not the only one. I did have diarrhea so it's possible my electrolytes were off. Or my iron is down. I just didn't bounce back from round 2 and I do mean "round 2" because it feels like a prize fight and I'm on the ropes. Trying to stay in the moment...
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I wanted to share this picture and the story of the shirt. It the shirt offends you, I apologize and I will remove the picture.
The story is I received this in the mail yesterday from a friend. Her husband just finished treatment for Hodgkin's lymphoma. He received the shirt from my friend Krista who went thru treatment for BC and is now 2 years cancer free, she in turn received the shirt from another mutual friend who is also now cancer free. It was their good luck charm going thru treatment. I hope I don't have to pass it along.
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Not offensive. Great shirt!
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Golfinggirl - the shirt is priceless. I doubt it will offend anyone here
. What a great idea to pass along the shirt, although I can see where it would be nice to retire it.It will be in our next updated collage, if that's okay.
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sharonde, AWESOME collage!
Love the shirt, not offensive at all. Could be a little more to the point though without all those extra letters...lol.
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Golfingirl: Love, love, love the shirt and the meaning behind it. I really hope you don't have to pass it on, too. I hope it does it's job for you as well.
Good luck tomorrow, Timbuktu!
Mame: Love the avatars!
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Had my first of four dense dose Taxol on Wednesday...since Friday I've had muscle and joint pain. The nighttime pain is so bad I've been taking my leftover Percocet. Ugh. Honestly, nothing is working and the pain is terrible...even my toes hurt! Anyone else have this with Taxol? I didn't think anything could be worse than the nausea I had with AC. I'm in the Dark Place
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Golfingirl, -- I think we all would wear the same shirt. Don't take the picture down. It's all good. Where do you get your treatment? I go to Kennestone.
Here's to Easy SE's.
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Thanks everyone. I'm glad the shirt is okay with y'all. I'm glad to have a good luck charm with such great heritage.
merg - I go to Northside. I see Dr. Bowen & Diane. I really like their office so friendly and efficient. I feel like I'm in really good hands and don't have to fight them for anything. It's a total team effort.
Swissmiss - sorry you're in that dark place. Please keep trying to remember this too is temporary and I know you're strong and will get thru it. We are all here cheering you on.
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Ladies,
I didn't start my chemo in April but on March 28th so I read this thread. Am sharing on of my tee shirts. I have a few to wear to treatment that make me smile.
This is how short my hair was before treatment. Still have some left but very thin.
Love your shirt Golfingirl.
Dee
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Swissmiss- bone pain kicked in for me last night. I'm only on weekly so I can't imagine the dose dense pain
Hot bath at 2 am helped a little... Then I took my ativan and drifted off for a bit. I hear days 3-5 are the worst of it. Hope you feel better soon! -
Oh boy did I have it! It was so bad I thought I was ready for hospice! But it left after 3 horrible days and nights and then I felt great. It's good for you to take pain killers. I didn't and it was dumb.
The first time is the worst so it's all downhill from here.
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Swissmiss, I'm so sorry you are hurting. (((((((Hugs)))))))
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wow, what a busy few days! So sorry a few of you aren't feeling well.. Hope you have a better week. happy dancing for others like Mikishelley!
Love the collage, Sharon. We are an amaZing bunch!
Blueberry, we still on for Tuesday? Wow, the extra week off felt great for me! I have felt great the past several days. Did the grad party circuit and ate and drank too much...like a normal person! I went over the top and drank more than my share of wine this weekend, too. Back on the wagon. Final AC on Tuesday and then on to weekly taxol.
Footballnut, haven't heard from you in awhile. Hoping you are doing ok. Love how Sharon's collage had your face on the super hero body!
Wishing all of you a great week!
Ann
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Mmtagirl, we are on! I'm in the chair for AC number three as long as the counts are up. I'll have one more in three weeks and then on to taxol for me too. So, I guess I will meet you there. Good for you having a normal time at a party. I'm not there yet, but sometimes I can pretend everything is normal, and it's almost the same. Was it you daughter that graduated? Congratulations!
I saw Edge of Tomorrow this afternoon. It was a great escape. I have seen most of the big movies this spring with my kids, and have taken to binge watching Netflix. What do you all do to escape from reality when you need to?
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I'm thinking of going to the movies after the infusion tomorrow if I can. I watch a lot of tv but reading, which used to be my love, is hard to do. No concentration. Walking seems to help even though I never have the energy. If I force myself I feel better. The best escape is sleep.
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Even though I haven't left my apartment since coming home from work on Friday, I'm taking today off, too. The pain dementors are finally slipping away, so I may force myself to go outside for a bit. I don't know what I would do without Netlix streaming. I can't wait to be on the other side of this.
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Good Morning to my April sisters. Just had my fill at my PS - I am now past puberty and seem to have a little cleavage lol. I am so not looking forward to tx 3 tomorrow. This last cycle I never really got back my energy in the last week like I did with the first one - so I am fearing how much fatigue I will have with #3. I wish I had a life remote control and I could fast forward to August.
In the meantime - I think I do a good gypsy impression
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checking in from the chair this AM. Ready to get today do e and kill and stray little f***ers. I am also wearing the same shirt I wore to my last chemo last time. I am going to start wearing it more. Maybe this will help with the pity looks and stares.
Timbuktu- what movie are you seeing. ??
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Thanks so much for the well wishes, girls...I think I might be coming out of the Dark Place this morning, and your kind words certainly helped! I kept hearing how Taxol would be so "easy" compared to AC, and I think I let my guard down. Wow, Taxol is definitely not easy! I've never been in so much pain...I seriously would have been up for an epidural if one was offered to me. I hate to speak to soon, but thankfully the worst seems to be over. I'm going to talk to my MO about getting some sort of pain relief for next time. I have a handful of Percocet leftover from my surgeries, but it just didn't work. Tylenol and Aleve didn't work either...I had a bit of relief after taking Ibuprofen, but not much. The nurse had specifically said to take only Tylenol unless I had Percocet, so hopefully it was ok I took the Ibu.
clarrn...how are you faring?
I LOVE all your tshirts....I think I need to get me a sassy shirt to wear too!
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Linda and Jamie, Great photos!! Its so fun to see you guys in the room we all hang out in. Its such an unknown to people who aren,t in chemo, at least it was for me. I used to freak that I was going in the office marked Oncology, but I thought, " At least I don't have to do chemo!" I used to avoid looking in the chemo area, as if I would catch it, somehow, if I really connected with what was going on in there. Silly me.
Taxol is only markedly easier in the weekly dosing, from what I understand. And that is only for some people. I am so sorry for anyone getting leveled by the treatments. Its barbaric. May recovery from infusions go quickly for you, SwissMiss.
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Good morning ladies! Love to see your pics and smiles!
Jaimieh - I can't quite make out what your shirt says, but it looks cute!!
Linda you look great!
Swissmiss, hang in there - I'm sorry for your pain. I know exactly what you are going through and dread my next treatment because of it.
It's a sad day for me, I'm really trying to keep it together, but my hair is starting to leave me.
I'm prepared (scarves, wigs, etc) but not as emotionally prepared as I thought I would be. I know it's temporary, but as you all know it just sucks. My privacy is about to be out of my control, and I will soon be a neon sign. -d
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Ddkath70...I'm so sorry!!! That was the one time in all this I have truly "Lost My Shit!" I likened it to labor, you know it's coming and once it starts there is no going back!!! Hang in there... Mine started coming out all over and it just started to feel gross! That us when I knew, it had to go. I never thought I would say, "let's shave it", but I did. I couldn't handle watching the strands, the clumps fall out. I don't know if you noticed, but it is very tender. When you are ready...it helps to not hurt so much to get it gone. Big hugs, this just sucks...just one of the things we can't control. If you plan to get a wig, find one of those nice salons, some wig places are just scary!!! You will thank me in the end!! Also, don't forget sunscreen, I've been using the same for my head that I use for my face.
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Ddkath - Happening soon for me too. Every time I touch my hair its like petting the dog. It is even but thinning more every day. My hair was my shield. I look totally different and certainly not quite as attractive (at 70 I should worry?) I think that may be the underlying fear. I have to see who I really am without the dressing. It is a psychological challenge for sure and may be responsible for some of the attitude changes that cancer patients talk about.
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my shirt says we deserve a lifetime
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Lakegirl - Couldn't agree with you more about just getting it buzzed. It's one of the most empowering things I've done through this whole thing. I was told I'd lose the hair about 2 weeks after beginning the AC. So one day before the 2 weeks, I went to the wig place where I'd purchased it and left for styling. Most wig places will give you a free buzz. I had support with me and felt great about getting it buzzed. That hair didn't start coming out for another week or so, but it wasn't so bad as I'd gotten used to it by then. I couldn't stand the idea of my thick hair coming out in clumps in the shower. Ugh. Bonus, I had no head pain whatsoever.
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I see what you mean about the tender spots. It's not my whole head, but in some places it feels like I've head a pony tail in too tight and too long. UGH! This sucks.
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Swissmiss - better today! Still sore but not near what it was
Going SUV shopping so we can haul a trailer and get to the lake more... tenting is so not my husbands cup of tea. And being by the water is so soothing. Maybe I could just head to the lake after Taxol in a few weeks. -
Had my infusion and it was a breeze. I slept through most of it and my husband stayed with me and helped me when I needed anything.
The BIG news! the onco thinks 3 infusions are enough!!!! She says I'm DONE! What a surprise!
She said that's the norm at her hospital. I asked about the data of 3 infusions vs 6 and she said there was none. That makes me nervous. OTH, after my near fainting episode, I had come to the conclusion myself that enough is enough. She said I should deal with that with my internist. She said anything is possible with chemo but she was doubtful that the chemo caused it. If not for you girls on here I would think it never happened to anyone before!
We went out to celebrate with a dinner and then I came home and quickly went to sleep. Just woke up after 2 hours. I can't believe I'm done!
What do you guys think? I feel I'm between a rock and a hard place really. If it recurrs I'll really kick myself for not having done all 6 infusions. OTH, this is my second go round with chemo and it seems to be hurting me, what good is getting rid of the cancer if the rest of you is demolished?
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Girls, you are rocking the scarves. Makes me want to surf the net for more cute ones like yours!
Dd and Brigadoon, once you take the plunge to the bald side you will feel better. Really! The first few days are the hardest. I find it more difficult to wear a wig. I feel like an imposter even if people that know me say they can't tell. As time goes by I find myself getting bolder and being bald with more than immediately family, especially at home. Today, I went to the fitness center where I work to take a step class. Usually, wait until no one is around and whip off the wig to put a scarf and hat on before I exercise. Not today. I took it off when other women were around and put on a do rag. No ball cap and proceeded to the class. I felt empowered. I still change in the bathroom stall. Not ready to change into a sports bra and have strangers or coworkers see the scars and TEs as I change yet. Baby steps.
Tomorrow is my last AC infusion and then I move on to taxol. I am seriously more anxious about the taxol given my first round with Taxotere. Having learned from you gals, I will not let my guard down.
Timbuktu, congratulations on finishing up early. I have heard of others that stopped early because of SEs. My doc told me he wants me to do a minimum of 9 taxol if I don't handle it well, ideally 12 infusions so there is definitely a range they work within.
Good luck to all this week!
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hi everybody!
Just returned from a few days in Niagara Falls and trying to catch up on the thread.
Sharon tx for the great photo collage. Love it!
We had a nice time away but unfortunately I couldn't forget about my cancer. Whenever we went out and I saw older couples id cry thinking that we will never get to spend our retirement years together
Then I remember the advances that have been made with herceptin and think why can't I live into my 70s or 80s? I know many 20+ year survivors with NED . So we shall all be there too!!
Despite the tears we had a nice time away. Saw a play in Niagara on the lake at the shaw festival called we are married - very funny about three couples celebrating 25 years of marriage who are told that their marriages might not be real. We saw stomp last night - awesome. We rented and rode bicycles 15 miles along the Niagara river. We threw money away in the casino. We ate too much. It was great!!
Lol
Tomorrow reality hits. Bloodwork and meet with my MO. Then wed my 3 rd and final round of FEC. Halfway done chemo!!!!
Little bumps have been forming on my head and I have a bump on my earlobe. What the heck !!!!
Is taxol the samething as taxotere? I start taxotere with herceptin the first week of July and after reading about the aches and pains that some of you have experienced I am terrified !!
As far as neulasta is concerned I've never had any pain and have always had the shot in my stomach
Hubby goes back to work tomorrow and I try to stay positive. The hardest thing for me is to be alone. I try to stay out of the dark places and I sometimes find it easy - at other times it is so hard!
I thank you all for belong me through the tough times and laughing with me through the good
You are all awesome!!!!
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Mmtagirl - I am sure you are right about the hair. Thanks for the encouragement.
Footballnut. I am glad you had such a nice trip. As for your old age, you never know. I was at a family gathering this weekend and both my brother-in-law and I were two people who had Stage IV cancer. He was suppose to be dead 3 years ago. He is 74 and has been in this cancer battle for a decade. My sister-in-law had just come from a memorial service for the husband of a friend of theirs who had flipped his car. Perfectly healthy, 58 years old. We can fight a long time. Life is unpredictable.
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You are never alone. We are always here for you footballnut.
The trip sounds fabulous...I WANT TO GO!!!!
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Mmtagirl...I absolutely get what you are saying about the wig...except, I'm not an imposter...as my girls would say...I am Spy Girl...undercover when I put my shades on!!! It's my alter ego....everyone says, mine looks just like my short hair, but blonder....but I'm still not convinced. So, Spy Girl it is!!!
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I've also been struggling with wig vs. hat/scarf. It's getting warm, and I think I'm having serious hot flashes, so often the wig is just uncomfortable, especially for long periods of time. I feel like I can be more private with the wig - no questions, no looks. But with the scarf/hat and no hair, I get looks, questions and comments. Or, I feel like I have to justify why I have no hair with an explanation.
Brigadoon: You're so right about not knowing how much time anyone has. It's all we can do is fight.
Footballnut: Glad you had a great trip! Hang in there. This is a marathon, that's for sure.
Ddkath: The hair is definitely traumatic. I felt like it was one of the worst parts, in some ways. But, believe me, you'll feel better after it's out, just not having to worry about losing it. I've even shaved it again to get rid of the peach fuzz that was growing in. It was growing in like a horseshoe, old man hair. And when my hubs shaved it, it looked like the hair you get off a cat or dog when you brush them. Completely not normal hair.
I'm back to the chair tomorrow, #8 of 12 taxol, could the end be in sight? I have some mouth sores forming. I don't think I drank enough water the last few days. Will not make that mistake again!!
Let's kick cancer's A$$!!
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Good morning April sisters! Today is round three for me and of course the dang steroids have kicked in and so here I am wide awake at 2:45 am lol. Appt is at 9:15 am. I hate starting off exhausted.
MMTAgirl - I got alot of scarves at Goodwill and also quite a few at walmart - they were on clearance for 2 bucks a piece. They also have bandana's there for a buck a piece - many colors. I wear my wig now and then - always bald at home but mostly scarves or hats when I am just out and about. I have gotten stopped and asked what kind of cancer and how am I and may I pray for you - it doesn't bother me - it is a part of me now - it isn't who I am but it is changing me. I have had some small children look at me a laugh - I laugh back - haven't flipped the wig to show them what is under it yet - afraid to traumatize them lol.
Football nut - taxol is a cousin to taxotere - I believe they basically work the same and may have similar side effects. I am doing taxotere and herceptin with my carboplatin right now. I am not sure what SE come from what - but I really haven't had any serious pain - mostly some muscle aches the first few days and this dull back pain. I think you will do fine with SE because I believe the taxotere isn't as bad as the FEC and you have done great on that. From what I have read - the SE are very minimal from the Herceptin - the biggest being heart concerns but we will be monitored for those issues.
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Looks like several of us are in the chair today. Good luck to all.
Lakegirl, I love Spy Girl. You are a super hero to your kids! I have names for my wigs. The one I posted the pic on is named Veronica. It is my DH favorite and the style/color everyone tells me I need to consider PFC. My other wig is Sporty Rachel. She is lighter and more comfortable and can handle the wind better if I am outside more. I was given some long hair wigs from my hairdresser. One is Ginger ands she comes out for fun with friends and family when I really want to rock an alternate personality.
Taxol vs Taxotere....they are both in the taxane family. My MO is telling me that low dose taxol will be much easier on my with fewer side effects than Taxotere. I am banking on that. I found AC much easier than TC. Or, I say that as I ready myself for 3rd and final AC in a few hours. Then on to taxol.
Linda, thanks for the tip on goodwill. Mi will check them out.
Wishing all a good day!
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Good Luck to everyone going for treatments today and this week. Glad to see more smiling faces being posted - will update our photo collage when we get a few more.
I'm on Day 6, Tx No. 3. - this is the worst time for me - can't concentrate, achy, bored crazy. And, Dr. called yesterday to say I was going on metformin to control my glucose during the rest of treatment. Chemo - the gift that keeps on giving.
Footballnut - I think your feelings are perfectly normal - hang in there and stay out of the dark!
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In the light of eternity, time casts no shadow. - Written In My Own Heart's Blood. Prologue to Diana Gabaldon's new installment of "The Outlander" series - out today. I will be busy for about 800 pages!
Good luck to all this week whether you have treatments or not.
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Time to see if I can lay hands on the first book in that series, Brigadoon. I had never heard of it, but notice that it will be a tv series in August. It sounds good, and I will report back my research after 100 pps or so. Thanks for the lead. Hope we don't lose you amongst all those 800 pages!
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Brigadoon, I am a Jamie and Claire fan, too!
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The Chemo Dementors took me to a dark place after round 3 and I'm just now crawling out from under them. I'm still a little fuzzy brained, but before I slide backwards, I thought I'd try to trick myself by listing a few things that are good about this chemo crap:
Hairless legs and armpits all summer!
No periods!
Doing my hair in the morning takes 30 seconds.
The good days feel really good.
Finding this group of remarkable fighters.
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mmtagirl - I knew there would be fellow sojourner's on here!! How exciting.
mameme - You will love it with its Scotland theme. I learned so much about Scotland's history. Diana Gabaldon is a great researcher.
If you two are on Facebook there is a group that you can join under Outlander.
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EverForward - It is always good to find a silver lining. Wishing the good days to come.
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Diana Gabaldon is one of my favorites, too.
Everforward - looking at the silver linings is helpful. I love the no muss, no fuss hair.
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SharonDe - We may have to start a board
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hi all
Thanks for your never ending support! Blood work at 12:45 today the. Meet with my MO at 1:45
My scalp broke out with all sorts of bumps that has since cleared up but I still have a bump in my right earlobe. Hurts to the touch but not as bad assay week. We shall see what he has to say about that
I find myself more tired in the morning and it's hard to get myself going being in the house alone. I have to getexercising although hubby and I did walk a lot while we were away and it felt great!!
I turned off my gym membership temporarily before surgery and have not turned it back on as I was not sure what my SEs would be like. I'm thinking about re activating it as this will force me to get out of this house!!
Tomorrow is my turn in the chair!
Hope all are well today! I love having you all as my sisters!!!!
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My MIL did the Jamie and Clare tour in Scotland. Her pictures are amazing!
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Today's agenda DONE. I finally went and bought a wig.
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What a great wig! Does it feel secure on your head? That's my problem with my wig.
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Hello Beautiful April Ladies!
I have emerged from the Dark Place once again. I saw you there Swissmiss and EverForward. I tried to wave, but I was Just.So.Tired, and all that came out was a weak finger-waggle. And the rest of you all, I can not tell you how much it helps me to log into this board and read about how you all are faring. Life goes on outside the Dark Place, right? Thanks to all of you for always helping me to remember that, even when the Dark Place is trying to suck out my soul.
So, THC gals, Round 4 is a doozy. I WILL say that the Emend helped A LOT with the nausea, but the FATIGUE? Oh man, that's another issue altogether. Physically, mentally, emotionally, I have never, EVER been SO TIRED. I literally slept through yesterday. ALL DAY. I just slept and slept and slept. My husband woke me up to feed me and make sure I was getting some fluids, but mostly, I SLEPT. And today, I feel better. I do. Although I can NOT IMAGINE what Rounds 5 and 6 will be like if the fatigue is cumulative. Eeek!
clarrn - Coincidence! We're SUV shopping too. After being housebound for much of last winter due to incredible amounts of snow and not being able to get out of our driveway, and then being housebound for much of this spring and summer due to feeling like CRAP and being immuno-compromised, we decided that I will NOT be doing "housebound" again this winter. Plus, the one of the first things my husband said to me when we found out I needed chemo was "I am SO buying you a car after this." I thought he was joking, Turns out he was not. So YAY! for me.
Keep us posted on the SUV hunt.Footballnut - SO happy you had such a lovely vacation! Also very jealous too. More happy than jealous though.
EverForward - "The good days feel really good." YES. THIS. Exactly THIS.
Aaaannd, now I'm ready for another nap. Whew. Typing on the computer keyboard really wipes a person out, right?
Hugs and Healing sent your way Ladies!
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Mmtagirl- I just got my first weekly taxol yesterday and so far it has been easier than the taxotere (aka taxoterrible). This is subject to change because I have 11 taxols to go but so far much better.
Everforward- Loving your list! My leg hairs have started growing back
. Footballnut- You will be retired with your DH traveling and stolling around with him.
Sharonde- Sorry to hear about the additional medication but as a positive it is known to help prevent recurrence.
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You have a GREAT husband cold. The only upside of all this is that we do appreciate the good, a lot more than before.
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A tale of chemo brain - So my mother is coming in for round 4, which falls near my birthday. I was working out some scheduling issues while she's here and I spent a good 10 minutes thinking that my birthday was a COMPLETELY DIFFERENT DAY THAN IT HAS BEEN FOR OVER 40 YEARS. Oy.
Cold, your last post made me chuckle. Thank you!
Jaimieh, your wig is awesome. And I love "taxoterrible." I'm using that from now on.
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Jaimieh - Love your wig - it looks great!
Cold - Congrats on emerging from the dark place! May you stay in the light.
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Your wig looks perfect, Jamieh - as in, not like a wig at all.
Have fun SUV shopping, clarrn and Cold. That will give you something to look forward to.
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Haven't been around much ... was busy last week and the week before. Well, busy compared when I started treatment ... nothing like "busy" used to before all of this started! :-) New normal :-)
Did my final round of A/C last week - yay! Found #3 and #4 easier than #1 and #2. However, my hemoglobin started dropping and I have tremendous fatigue today and yesterday. It was low two weeks ago, came up a bit, but tanked today. Had my blood work done, it's only 7.3 so I have to have a blood transfusion tomorrow. Not happy about it, but am SO tired and fatigued ... hope I feel better afterwards
Start dose dense Taxol next week ... every 2 weeks for 4 treatments. Herceptin will start next week .. .that will be weekly while I am on the Taxol, then every 3 weeks to finish out a year.
That collage was GREAT!!!! Thank you to who made it ... I saw the name a few pages ago and am so low on energy that I can't remember now :-( I couldn't even read the last few pages ... this low energy really sucks :-(
I think there was a bone pain/Neulasta discussion? I take Claritin every single day ... they had me start the day of my first treatment and continue on. Until this past weekend, didn't have any bone pain. This weekend I was sorta kinda running an event (we have an RV and I stayed in that most of the time) However, it meant I sort of got off of my schedule and only took one Claritin over 3 days ... bone pain yesterday, but it has subsided now.
With Taxol, one is supposed to take Benedryl. I am allergic to Benedry ... break into hives! Ironic, eh? :-) So, supposed to take Zyrtec the day before, day of and day after treatment and they will be giving me something else in the IV. Hoping that bone pain doesn't start because I can't take the Claritin at the same time. We shall see!
Plus, they usually give you Benedryl with a blood transfusion ... or so I am told. They will be giving me Claritin from what I hear ... again, we shall see tomorrow! So hoping for no complications!
Wish I could remember everything I read just now ... sorry! Yay for those that are having good treatments. Wishing everyone few side effects!!
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I've officially made it back from the Dark Place. If only I had a head of hair, I'd feel kind of "normal." So not looking forward to Round 2 Taxol, but it's a week away so I can catch my breath. It is so good to read all your posts here...I'm wishing you all a week in the Light
How often do y'all do blood work? My new MO wants me at the lab weekly, but today I called his office and said no way. I actually still have bruising from my last venipuncture...she blew the vein in my arm, then had to draw from my hand. I had a marble-sized bump on that hand for two days...she had one job, for goodness sakes. Because of those stupid cancer-laced lymph nodes, I only have one good arm. I think weekly lab is too much...just wondering what the standard is.
Wishing you all a great day!
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A chemo brain tale of hope! My short term memory has been shot since my first round of chemo 2 years ago. Today I had to call Costco and did not have a pen to write down the number. I gathered all of my brain strength, at least what is left of it, and determined to remember the number. And I did! This is a first in almost 3 years! So there is hope!
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SwissMiss - I get bloodwork every week. Right before my treatment and then the following week (I get treatments every 2 weeks)
However, I have a port and it is all drawn through there since my 3rd treatment. The first blood draw (the week after first treatment) I didn't know that I could ask for an IV specialist to access my port. I am a very "hard stick" and it took forever. The second blood draw (week after treatment #2) I did ask for an IV specialist but she couldn't access the port after 3 tries. Back to the hand. I spoke with my MO and was told I could get it done at my infusion center ... the gals there are always good at accessing my port. Plus, I can wait for my results. Did you not get a port? I also am down to one arm and am SO THANKFUL for my port!! I could not go through this otherwise. Have always been a hard stick even if I hydrate a LOT for 24 to 36 hours before.
Timbuktu - yay!! :-) Always good to know there is hope :-)
I had SUCH a good few days last week before A/C #4 ... other than the lack of stamina, I felt like my old self, pre surgery, pre chemo! What a great feeling to have a CLEAR head! Then treatment #4 and back to that fuzzy feeling again. It was nice while it lasted :-)
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SwissMiss,
My labs are weekly before each treatment. If I am not having a problem I see my MO every three weeks.
I spent two weeks in the Dark Place. Just awful. My MO gave me a week off treatment and I felt so good! The good does feel better after the bad. I am back on schedule this week and taking naps every day but no Dark Place. Only three more Taxol/Herceptin to go. I can do it!
Looks like radiation will start in July along with every three week Herceptin.
Me in my wig:
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DeeC - Your wig looks so natural. I need one with short bangs because I wear glasses too. I got the free wig from TLC but it is not quite the look I want. I am going to have it cut in hopes it will look more like yours.
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Deec and jaimeh your wigs look GREAT - would never think wig!
Well treatment 3 is in the books - long day at the center - arrive at 9 am and leave at 230 ughh. Not looking forward to the next few weeks and the dementor visits!!
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Lemonade...I have a port, but I didn't think to ask the lab techs to try that instead. I go to a freestanding lab near my home since my infusion center and MO are a 30 minute drive away. Honestly, after what the lab techs do to my veins (they truly don't inspire my confidence) I would be frightened to see what they may do to my port. This might be because I had an infusion nurse stick the giant port needle in my chest one time rather than my port. I try everything, and I just can't win in the needle department. I read recently that I should work out and then get the blood draw...makes the veins easier to access I guess? My old MO did labs biweekly before my infusion, and I'd truly prefer that
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Dee - another perfect wig. It looks so natural.
Swissmiss - I get blood drawn once every 3 weeks - just before treatment. Sorry you are having issues with the nurses/techs finding a vein. That just adds insult to an already not fun situation.
Good Luck keeping the dementors at bay, Linda.
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SwissMiss ... if you go to a lab, they might not have an IV specialist on staff and that is who you need to access your port. Really sorry you have to go through that!! Also sorry about the trouble accessing your port by the infusion nurse!! Was that at your old cancer center? Hopefully they are better at your new one ... I love all of the nurses at my cancer center. Each one caring and understanding and does a great job.
I have weekly blood draws ... thank goodness. Ended up in the hospital a week after the first treatment due to extremely low counts and temperature, now need a blood transfusion tomorrow after a week after the 4th .... if I didn't have the blood draws, who knows! My counts go way down the week after each treatment. Hoping it won't be as severe when I am on Taxol.
DeeC - I would not have guessed that was a wig!! Looks very natural.
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DeeC and Jaimieh: Great wigs!! They look very natural. My avatar pic is my wig. I wish I could wear it a little more, but it's oh so hot. I also feel like it isn't 100% secure, not that it will fall off, but it shifts, especially if it's windy. I tease my kids that I'm going to wear it half-way back. It looks so funny on like that!
I also have weekly blood draws. Because my chemo day is Tuesday, originally the infusion center wanted my blood draws on Saturdays. I'm fortunate to be very close to the center, but Saturdays I usually had to sit with the crowd that was waiting for the Urgent Care (Same area) and had to wait as long as 90 minutes. I complained finally and they said, oh you can go on Friday - when they use my "fast pass" and I'm in and out in 15 minutes and I don't sit with the crowd in general waiting!! Why they didn't tell me that first, I have no idea. I also am starting to get some track looking marks and bruising on my arm from the blood draws, but was told the techs could not use the port, I'd have to wait for an RN to come down to do it through the port. I'll just keep using the arm as long as possible, I think. It usually isn't too painful as long as you get a decent tech.
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Hello friends! I've missed you all. I loved reading the feedback about the alternative medicine guy who I had the argument with on Facebook. And Timbuktu you hit the nail on the head about the arrogance. That's what pushed my buttons - that and him saying people who do chemo are "lazy & misinformed". I felt better after I told him he was a judgmental fool.
ANYWAY... had #4 today, which means only two more to go! My fingers and toes are crossed that the SEs don't get any worse this round like they did after round 3.
Sharon, I love the collage. Thank you so much for including my furry friend, Jack. He is such a joy. I have another dog as well and the two of them are so loving and fun. They offer me such great company when I'm visiting the dark side.
Sadly, I have horrible news. My 22 year old niece died in a car accident on Sunday morning. I will be taking a 4 hour road trip on Thur. to attend her funeral in upstate NY. It will be awful, and compounded because my SEs will be kicking in that morning. Not sure how that's going to be riding in the car either... But I can't wait to see my sister and give her a big hug. This is the worst tragedy to face our family & there will be a lot of healing for years to come.
Merg, I know we're chemo buddies. Hope yours went well today.
Golfin girl, great shirt and great tradition behind it. Very cool. And BTW, you are gorgeous without your hair.
As far as coffee enemas go... I don't even know what to say, lol. I'm pretty sure we have enough issues with digestive upset to not even entertain such an idea, so yeah I too will be ingesting my coffee orally thank you
Have a nice evening ladies. Here is a pic of my other dog, Cali.
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I finished AC number three today, one more, and then on to taxol. I thought I would post now before I fall down the rabbit hole.
Jamie and DeeC, your wigs look great! Very natural.
Brigadoon, I am an Outlander fan as well. Thank you for reminding me about the new book. I can't wait to lose myself in the story and visit my friends, I mean characters.
Swissmiss, my blood draws are weekly. My counts drop really low and they monitor to know when to put me on antibiotics.
Cold and Clarrn, I am car shopping too. We are looking at SUVs and crossover vehicles. I like the Toyota Highlander today. My friend just bought a Yukon and loves it. It's huge. What are you looking at and liking? I never know what the latest/popular cars are.
Lemonade, congratulations on finishing AC. You did it! I hope your transfusion goes well tomorrow.
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Long Island, I am so sorry for your loss. I can't imagine. Thank goodness you are able to travel to be with your sister and family. ((Hugs))
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Thanks for the reco of the Outlander series. I need some books for when I'm able to concentrate again (hopefully!!).
I'm car shopping soon too! Must be a trend. I have a GMC Acadia, which was great, but now that I have one driver and one soon to be driver, I no longer need that big thing and am considering downsizing. Can't wait to test drive some smaller SUVs or Crossovers. Let me know what you guys like!!
Good luck to all with treatments this week.
Longisland: Cute puppy pic!! I have a black lab and a black cat…both love the fact that I sleep so much - - they are always right by me.
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Longisland - so sorry for your family's loss.
We had a Toyota Highlander - liked it a lot. Currently have a Jeep Grand Cherokee - it's a little larger which I like, but the Highlander was very nice.
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Longisland I am so sorry for your loss.
I start chemo on Thursday and have a couple of questions. When do I take the Claritin? The morning of the neulasta shot? How about the ativan? Can I take it before I go Thursday?
I got my Port yesterday and boy is it sore. They won't let me use the EMLA cream this week... I totally want to whine about that!!!!
Have a good evening ladies! And Footballnut I am glad you had a good weekend with DH. I always liked Niagara on the Lake. Lewiston on this side of the border is nice as well, though not as many shops! Next time you come across come to Lockport and see the Erie Canal.
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Long Island, that news knocked the wind right out of me. And it comes with a terribly true message. With all of the fear we have, the cancer, the chemo, etc. life is so unpredictable and at any time something from left field can take you down, so why worry? Ha! But I've found that to be true.
My father died of an ulcer after years of battling cardio vascular disease. An ulcer was the last thing on his mind, even the dr thought the pain was from his heart. Somehow, someway, we have to come to terms with uncertainty. I'm deeply pained by your loss.
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Long Island - I agree with Timbuktu. Such a tragic loss. I am so glad you can be with your sister to help her through this. I hope your trip with be SE free and safe.
Again, the bond of shared experience leaves us more open to celebrations and losses of the people we support and get support from. There is a family feeling here that is separate from all the issues that might divide us in other venues. I hope you can take comfort from that and know that we are here to listen and care. -
So true Timbuktu. Wishing your family peace in this difficult time.
It just reminds us all that we have to try to enjoy each day - - which of course is difficult at best some days. But the good days, they are really really good.
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Longisland I am so sorry for your loss. I hope you have extra strength for your trip and that you do ok in the car. I will say a prayer for your family. What a tragedy.
Mompv - I usually take it starting the day before the neulasta shot and then for 6 days after the shot. As far as the Ativan, I only take that to offset the steroids when I need to sleep but you can take it before chemo too if your Doc says it's ok. Best wishes for your first time in the chair!
Cold sorry you have had such a hard time with #4. I am there next week and I am DREADING it.
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Longisland, I am sincerely sorry for your loss. Your family is in my thoughts and prayers and I pray that you have minimal SE during this truly devastating time.
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Longisland- It is good to be with family at a time like this. My heart goes out to you and your sister, we will all hold our loved ones a little closer tonight. Prayers for a safe journey on Thursday and that the SE's would be tolerable. And so many hugs sent across the internet. ♥
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Longisland- I am also sorry for your loss, but happy you will be there as support for your sister (and she for you). Families need one another in the face of a tragedy, and loosing a young family member is one of the hardest things a family must face. Plan your trip wisely. I traveled for a family funeral four days after chemo, and I gave myself extra everything. Time, meds, fluids, snacks. It is easy to focus on getting there, but you want to BE there when you do. Just be careful. At the services I found myself hiding so as not to be the focus of peoples attention, but then again I hadn't seen most of my family for over twenty years. My cousin (whose father passed) actually put her hand out to me and introduced herself when i walked in. When I told her who I was she broke down in tears. My entire childhood all I remember is spending time with my Aunt Uncle and cousins (they were more like sisters to me). Anyway I am rambling. Point is take the extra time you need to get through the day emotions are a powerful force and you will need all the physical stamina you can muster.
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I get weekly blood draws, too. Infusion day is Tuesday and I get draws on Monday.
Last AC was yesterday. Woot woot! Out of it afterwards. So loopy I forgot to get my appointment to start taxol July 1. Feeling clearer today even if the stomach is queasy. Took my emend and decadron and hoping to head to work for a bit.
Doc was accommodating so I could push back taxol by a week since I have 150 of our closest friends (lol) in our back yard for a graduation party June 27. What was I thinking? at least by then I will be feeling good and hopefully no important detail will be missed so long as the caterer shows up with food and the tent guy with tables and chairs. The rest is just a bonus!
Great day everyone!
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Ladies, So I wanted to give a post-chemo report. It has been eight days now, and I seem to have developed chemo associated peripheral neuropathy. It started Saturday night and I had hoped yesterday this would be a SE that would say hi and bye. I will be calling my MO today. Other than that the good news is my chemo brain (which was really bad after round three) seems to be clearing up! The fog is lifting! Yeah. Bad news the hair under my arms and on my legs are growing back. Darn it! I was looking forward to a shave free summer. Also I believe I am growing the Fuzz on my head. I never thought things would happen so quickly. I still have a lot of fatigue. Combined with the neuropathy I have a lot of difficulty getting around. I am working four hours a day, but that depletes all the energy I have. Not a whole lot else to report other than round four was easier for me than round three. Maybe it is psychological that I knew round four was it for me. Have agreat day ladies I'll let you know what the MO says later.
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MMtagirl- Congrats! 150 people? You are a brave woman!
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DeeC ,Jaimieh, You look "Marvelous". Great pics.
Round 3 is done! Just going back for the horrible bone pain shot today. I am dreading it.
My friend took me yesterday & she brought a picnic basket with us filled with cheese, crackers, grapes, sparkling grape juice. We had real napkins & plates. The hospital has food donated but it's always cakes, doughnuts, cookies, chips. That's ok, but after 3 hrs I want real food. Anyhow it made a long day fun.
Easy SE's for everyone!.
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Mikishelly - I got neuropathy after round 1 - mine lasted about 6 days - I take B6 100 mg, B12 1000mcg spray, and L- Glutamine powder -- 10 mg of the powder mixed in a little juice 3 times a day to help with it. Ask your MO if those are ok for you to try.
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Linda Thanks I already started the B vitamin regime. Last week. This just snuck up on me
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LongIsland,I'm sorry about your family's loss. Prayers & Thoughts to you all.
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longisland I am so sorry for your loss I am sending you hugs and support and hope that it somehow helps to know that you and ur family are in my thoughts!
Had my bloodwork and met with my MO yesterday. We had a great discussion about my prognosis as I explained to him that I am getting very down at times. He said that with my type of cancer he expects that I will be fine and live a long life. He did mention that they never know what cancer might do 100%, however he said that in my case things look very positive. Then he gave me some medical jargon to support his view. He also mentioned that they can unfortunately tell with some women that things do not look as positive
I find it funny that even once he explained this to me I still feel worried. I feel like it's not good for me to feel relived because I'll jinx myself into having something bad happen. Crazy I know!!!!!
Today I will be in the chair for round 3 of FEC. My final round! 3 weeks from today my cocktail changes to taxotere/ herceptin for the last 3 rounds with herceptin continuing for a year
Last night I doctored up a tomato sauce and added too much garlic. My tummy was not good for most of the evening and this morning it's killing me! Great timing!!
Love all the pics! It brings us all closer together!!!! Here are two of my hubby and me. One with the wig and one without. I must admit that I loved sitting on a park bench in Niagara on the lake with the breeze blowing through my fuzz!!!!
Lol
Have a good day all !!
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Footballnut - you both are just too darn cute!!! Good luck today!! Here is a somewhat blurry image of me doing round 3 Hubby is a good auto mechanic - not so good photographer - the hat and socks were sent by a friend so I wore them in her honor yesterday. I am having a CT scan of my liver and abdomen as soon as it is scheduled, to see why my liver function tests continue to rise. I must say I am scared. Could be just a result of chemo - which is what my MO "thinks" but also could be a sign of liver or bone mets - ughhhhhhh.
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Linda I hope that your Ct shows nothing.
Football nut great pics
. Weekly taxol side effects check in however I am skeptical because I still have AC floating around in my system. Heartburn is still number one issue,my taste buds are off, dry mouth is still hanging around and I have a little bit of an upset tummy. None of this is stopping me from getting out and about though. Hopefully my list will not grow at all.
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Linda, sending good vibes your way for a happy test result. Btw, it looks like I'll be in Tampa next week briefly. I get in Wednesday evening and leave the next afternoon.
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Longisland - I'm so sorry for your loss. I hope you're feeling strong with very few SE so you can be there for your family in the way you want to be. My best friend's step daughter (17 years old) died in a car accident the week I started chemo. It was really hard not being able to travel home to be there for her. It sure made me count my blessings.
DeeC & Jamieh - love the wigs! I've been mostly going bald or with hats. They look so great I'm rethinking that startegy.
Linda - fingers crossed for a clear CT
Mikishelly - I hope that neurpoathy is temporary. Sorry about the hair growth. We can't have it all!
footballnut - glad you had a great trip. I love Niagara-on-the-lake. Such a quaint town. Cute pictures of you two. I'm very glad your OC is positive. That's wonderful news. Good luck today in the chair. Go Rangers!
I'm in the chair this Friday. I've had a rough week. The last two times week 3 was awesome. Almost normal feeling. Not this time. Exhausted. Short of breath. Had to take yesterday off work to try to get some rest. Glad I did. It helped. My energy is about 50% of normal. Dreading the chair becasue I haven't bounced back. So beaten down.
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longisland- my thoughts and prayers are with you and your family.
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LongIsland - I am SO SORRY for your loss. How awful. Sending prayers and hugs to you and your family.
Ladies, I LOVE the sense of family on this board. How amazing that we can all "be" here for each other in everything. This makes my heart so very, very Happy.
Looking good Footballnut!
And the WIGS! LADIES! I would never guess. Ever. They all look so natural!
Linda - Sending prayers for a clear scan.
Having some serious numbness in my fingers and feet the past couple of days. Also really chilled. *sigh* Yet ANOTHER side effect? You could put my face on a poster for THC side effects. Seriously. I'm like a walking ad.
Also, I miss FOOD.
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thanks all for the prayers and good wishes - Having the test tomorrow afternoon at 3:30 - glad I didn't have a long wait for the test and hopefully the results will be quick and clear - the test is done right at the cancer center!! Golfinggirl - I didn't get my bounce back week after round two - only had a couple good days but my reds never really fully recovered and I got this liver issue that can make you tired.
Only one day after treatment 3 and starting with a little neuropathy - ughhh - hopefully this doesn't get worse - 1st treatment was bad for neuropathy, 2nd was much better - don't want a repeat or worse of number 1.
Longisland - so sorry for your loss!
Everforward - sorry you are in town on my bad week and for short a time - let me know if you come back this way sometime.
Hope everyone has minimal side effects and many good days!!
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Hey Footballnut! We're chair buddies today!
Sorry for the long post but I've been offline for a couple of days and trying to catch up. Here goes:
Sitting in the chair right now for TC#3 of 6, sucking on ice and eating a Lorna Doone. MO said my white tongue sounds like it wasn't thrush, but instead just the chemo killing off the cells in my mouth, so she said to try to ice my mouth during the T&C drips, to reduce the amount of chemo that attacks my mouth cells. Hopefully it works.
EverForward: I too look on the bright side with the good things you listed. Well, except for the no-period because I'm still getting mine (boo!).
Jaimieh: Nice wig...looks like real hair! They've gotten so much better with the wigs these days, which is so nice.
Timbuktu: If your wig feels too loose, try a smaller size. Wigs seem to come in 3 sizes: petite, average, and large. Mine all seem to stay pretty well, even when I drive with my convertible top down.
Good job remembering a phone number on chemo. I couldn't even remember phone numbers even before chemo!MakeLemonade: Congrats on finishing A/C! Gotta celebrate each milestone. I too am exhausted right after my infusion, usually the first 11 days after chemo, but then I have 10 good days afterwards until my next infusiion. We gotta enjoy the good days and look forward to them on the bad days.
SwissMiss: I only get blood work the day of my infusions (once every 3 weeks). But I think that's because I get the Neulasta shots. Once a week is a lot of vein sticks. Yuck. Sorry you have to go through that.
DeeC: Wig looks great and just like real hair! Hang in there...only 3 more to go! You can do it! I'm looking forward to hearing how radiation goes for you since I will be doing the rads in September when I'm done with my chemo. And enjoy the good days!
LongIsland: So sorry for your loss. I hope the drive goes well. Just plan a lot of rest stops and I think you'll be fine.
Cold, clarrn, Blueberry, and jhodro: I like my Toyota RAV4. It's a good size for me (family of 4). Good space but not too big as to be hard to park. I have friends and family who like the Honda CRV, the Toyota Highlander, Honda Pilot, Lexus RX350, and Acura MDX. The Subara Forrester (more of a tall wagon) is also a favorite of friends. I'm a car girl so ask me anything about cars.
I love to talk cars.Mompv: Good luck with your first infusion. You can take Ibuprofen for the soreness..they let me take them for my port installation soreness, which helped. Start the Claritin right after your infusion and take for several days afterwards (I only take for about 3 days but I think others on this board take it for a week).
mmtagirl: Congrats on finishing A/C! Whoo hoo!
You're brave to have that many people over! I'd be afraid to do that even if I WASN'T on chemo!MikiShelly: Thanks for the postchemo report. Sorry to hear about the neuropathy. I hope it goes away for you soon. As far as hair regrowth, I'd gladly take that over chemo anyday!
DId you know the Komen Race is this Saturday? I can't go because I will be exhausted and be spending my day in bed, so I signed up for "Sleep in for the Cure," which I wasn't even aware of until this year. It lets me support the cause but not have to physically go downtown. I plan to go next year to walk for sure though! Footballnut: Great pics!
Linda505: Good luck with your CT scan. Hope it turns out well.
Cold: I miss good food too! Only ice cream and cheese taste good for a week and a half after infusions. Things we'll appreciate more after chemo is done...
Wishing everyone a good day, whether you're in the chair, out and about, or enjoying some sleep.
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Chair buddy today too!
My DD puked 3 times overnight, I am so tired. With the benadryl I should drift off soon! Poor girl is at grandmas but asked if she could come with me bc she is sick too! She loves the hospital.
SUV shoppers - so far we have test driven the
the Chevy trailblazer, nissan murano, mitsubishi outlander, hyundai sante fe, jeep liberty, mazda 7, and ford Escape. All used, some loaded. So far the Santa Fe is my favorite, nice ride, decent mileage for the size of engine. Some of the 4 cylinder ones were nice but couldn't tow a small camper trailer which is what we want.
And looks like hubby is going to buy me a boler!!! I love those cute fiberglass eggs! Pin it if you don't know what I mean. I am vintage camper obsessed. A 4 cyl would pull that but I think we will get the santa fe anyway.
Oh and while we test driving on an unfamiliar road we got pulled over going 87 in a 60 zone!!! Yikes, we had just come off a 90 road and didn't see the sign. I whipped off my wig before he got to the car and he just wished me luck. Not sure if it was the fact that it was a test drive or my obvious chemo head but glad not to get a ticket. Lol. Oh the chemo perks.
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MommyQ, I just finished chemo, but I'm still lurking here. My tongue turned whitish/gray for about 5 days after each of my dense dose Taxol treatments. I called it "dead tongue". I knew it wasn't thrush. I asked the MO, his assistant, and 2 chemo nurses about it and none of them had ever heard of or seen that! I'm so glad I am not the only one. I took a picture this time to show my MO at the next appointment. DD Taxol takes 3 hours to drip, so sucking on ice would have been hard that long, so I just lived with it. I had no pain or taste changes, just an ugly gray tongue for a few days!
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A tip from the woman at the wig store. Use Scotch double sided tape to secure wig. Sounds weird but she used it herself. Put it on the back of her neck. You could also put it on top. I haven't tried it because I still have some hair left. But I bought some just in case.
Dee
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ladies, I finished my AC and Taxol 20 week ordeal on Thursday. My hair started to grow about 4 weeks ago and it's good to have the chemo behind me. I am here to give you encouragement and to let you know you WILL get through this!
I also want to share that when I was bald, I started 'bedazzling' my head. I just couldn't be comfortable in a wig and I preferred to go topless, but was a bit shy about it. It was SO wonderful to decorate my head and have people stop me to chat instead of give me that sympathetic half-smile and a nod. I could not get through a shopping area or public place without being stopped or complimented . More importantly, I was having wonderful conversations with people about their stories, their cancer experience. It made me proud and confident.
Anyway, through lots of encouragement, I launched my own product and I call it Sassy Head. I only have one design now, but I REALLY need some people to give it a test spin for me. It works wonderfully on my skin ( I could sleep in mine and get 2-3 days use) but everyone is different.
I have a very simple website (not pretty, but it works) if you would like to try one out. I am selling these for $8.00, but if you use the dropdown next to word Standard and select BCO, it will give you a price of just $2.00 (plus 3.00 for shipping).
Below are some pics. The first group was my head when I was bedazzling, and the second is my available design. I plan to do additional designs, including a pink ribbon and designs for children. Your suggestions are welcome!
www.sassyhead.com
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Mikishelley - Thanks so much for the post chemo update! I am so sorry about the neuropathy…I started getting it in my hands yesterday so I started on the B's & glutamine powder. It was good to hear that #4 seemed better than #3. That gives me hope!!!
Linda - I hope you get great news from the test!!!
Footballnut - I love the pics! You look beautiful!! I know how it is to worry about the future. This kind of diagnosis really makes us feel vulnerable. I just have to change my thoughts when I start the negative thinking. Just keep going back to the good report your Doc gave you!
I woke up with a head cold today.
It's is the week I am supposed to be feeling good so I am really down about it. I have round #4, which I am dreading a week from tomorrow so hopeful the cold will be done with by then. -
hi all
Appreciate your kind words! So today was round 3 of FEC and my last one. Next 3 will be taxotere and herceptin
Today was a bit difficult. Felt nausous for most of the infusion and still feel off now. I've taken my anti nausea pills so no vomiting. Dry mouth is starting already. Ugh! I've noticed that I've had some tingling and numbing in my right foot and hand. Weird! Comes and goes
Hoping that it doesn't get worse then this!!
Let's go rangers!
1-0 now for the good guys. Life is good!! Lol
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Great pic Footballnut!
Had my blood transfusion today ... uneventful, LONG and BORING. This wasn't done at my usual infusion center but in an office on the same floor as my center, but next door. They had heated chairs and heated blankets! That really felt nice as it was pretty chilly in there :-)
Actually had a little more energy by the time I was finished ... first thing this morning just lifting my arms caused my heart to race, so my hemoglobin was REALLY low. This should top me up, plus the Neulasta will kick in by Friday so should have an okay weekend. Just in time for my first Taxol/Herceptin treatment on Tuesday :-) But we all know about that roller coaster by now, don't we :-)
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clarrn: Woo hoo, another chair buddy for today!
I hope yours went well. Mine went well, although my TEs got uncomfortable during the Taxotere infusion. Don't know why. Well played chemo card with the cop, BTW! Footballnut: Congrats on finishing your round 3 of FEC! Hope you feel better soon.
Macintx: I too am glad I'm not the only one with this weird white-tongue-not-thrush thing going on! My T&C is 1.5 hours long, so I was able to manage keeping ice in my mouth. However, all that melted ice meant a bathroom pit stop between the T & C.
I'll let you know if this keeps the white tongue away in a couple of days. You're lucky you didn't experience any taste changes. -
My taxol went well
weird taste this time and terrible stinging so they ran some saline concurrently which helped. My veins are getting bad and I have 10 infusions left... Not sure if they will make it. The lab is already having trouble getting blood. I do wish my PiCC had survived. They considered using my lymph node removal arm today. I told them about the lymphedema and they said "you really do have bad luck" lol ... Only for the last few months and even so, there are definitely silver linings. Football- I had tingling in only my left hand and foot intermittently. I didn't have a n MO appointment before this dose. They said the weekly doses are only considered partial doses so I only see him once every 3 weeks. And if it continues then we might decrease the dose.
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MommyQ - I get the tightness in the chest muscles around my TE's after my infusions also. It usually lasts a few days. I don't know your feelings on this but my PS gave me a prescription for valium to help with the muscle issues. So on those days I take one before bed and it really seems to help with that night and the next day - just enough to make it mostly unnoticiable. He gave me a prescription for 60 pills right after my surgery and I still have enough left that I could take one everyday for 3 weeks - so you can see I don't use them every night. They also seem to help take the edge off when I am taking the pre chemo steroids. My MO ok'd this usage.
Makelemonade - how low did you hemo go before they decided to transfuse you? My red and hemo did not really recover between treatments this time - so I started off a bit low - not transfusion low - but low enough that I have more fatigue. They told me that fluids may also help with the exhaustion - I might ask if I can go in for one Friday - maybe help me feel a little better this weekend.
I go today at 330 for my CT scan to look at my liver and mid- back - hope they see nothing - or if they see something it is just a normal bad thing not a cancer bad thing. ughhh stress.
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Linda- I'll be in your pocket!
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Right there with you, Linda.
Footballnut should be happy with her Rangers.
*sigh* Week 1 - try to prevent constipation. Week 2 - like clockwork, C is solved and D starts ... Trying some Immodium now. I have never taken so many medications in my life.
Happy Thursday, everyone!
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oh steroids..... 521 am still awake
Will be thinking of you too longisland
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Linda - Sending you good luck. Do they call you right away or do you have to wait through the weekend? We are here for you - listen, rejoice, hitch- whatever you want.
SharonDe - I know. My nightstand is so full I feel like an old lady. Wait, I am!!
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Linda _ Good luck today. We're here for you. I had my first no sleep steroid mania last night. Finally got to sleep around 3:30. I need to switch from Ambien.
SharonDe- I know! I need a bigger nightstand. The thing about. The C. & D for me is the Big Hemi's! I read that if you do the touch your toes bends 3x day it helps.
Clarrn - I have had better luck on taxol. Hope the tongue thing goes away.
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thanks for all the positive thoughts I am hoping and praying that this is just one of those SE from chemo - all my test prior to starting chemo were normal so I have that to hang on to. I don't know when I will get the results I am gonna try to get the radiologist to give me hints LOL - doubt he will but we will see - maybe if I wear fake eyelashes and bat them at him LOL
I had bad C first infusion but no D - then lesser C with 2nd infusion but then had 3 days of D. So far it seems as if I am going to skip the C for the third infusion or at least be minimal as I had a small bowel movement this am. So lets see if I can skip the D too! We always seem to go to these conversations LOL - but where else could we talk about this shit - pun intended!! I did this for my second treatment and for this treatment and it may help with the C - but you got to be patient Accupressure points for constipation
http://www.youtube.com/watch?v=F3OOdpJup-8
Yeah for the Rangers!!!
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Linda, here's to a clear scan!
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Linda505 - I was down to 7.3 on Tuesday when they said I HAD to have a transfusion. 2 weeks ago I was 8.3 and they were talking about it but I wanted to try to see if I could make it through the last cycle of A/C. MO said they usually like to do a transfusion if it gets to 8.0, but would let me go a bit lower due to my age (56). 7.3 wasn't considered a "bit lower". It only went up to 9.0 by the time of treatment last week. I was anemic before I started chemo, so I guess that didn't help.
I didn't want to have it done, but felt worse yesterday morning than I did at blood work on Tuesday, so didn't fight it. Everything was an effort that got my heart pounding through my chest.
The nurse there told me I might end up having another one as I was so low. The RBC don't bounce back like WBC as Neulasta doesn't affect them.
Also ... Good luck with the scan!
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Positive thoughts your way, Linda!!
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Good Morning to all of you beautiful girls! Hope everyone is able to enjoy a summer day, with NO SE's, or at least staying out if the Dark.
I had my first dd Taxol 8 days ago, and the one lasting SE is constipation. I have never really experienced this, and I'm trying to figure out how to deal. Anyone have a good remedy, besides the obvious prunes and fiber supplements/additives? Something natural...or after a full week of feeling like this, I would consider ANY suggestion. Help!
I ended up getting a callback from my MO's office, insisting I had to do weekly blood work. But, I ended up with a sweet gal who suggested I request a butterfly needle each time I go to the lab. She actually said many on staff there are stingy with those needles for some reason. Why, I don't know. But the venipuncture went well, and now I know what to say to make that happen more often
Enjoy your day!
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Three colace a day and Dulcolax, 1-3.
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sennakot is natural and maybe a glycerin suppository, yogurt helps some, if you can walk it helps but if nothing soon you might end up needing an enema. Which is the last thing any of us want to go to the hospital for but you will feel better and its 100% natural.
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Smooth Move organic tea - bought mine at the grocery store - link shows you what the box looks like
http://www.amazon.com/s/?ie=UTF8&keywords=smooth+m...
Also read up to my post a couple of posts up about the accupressure points - that really helped me after my 2nd infusion.
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Good Morning April Beauties! I love going back and looking through the photos on this thread, because we are a GORGEOUS group of women, you know? Not to toot my OWN horn or anything, but...TOOT! TOOT!
Linda - here with you all day today. Been PRAYING and PRAYING for you!
Nana - BOO on the head cold! I hope you feel better very, very soon, and get to enjoy some of the good days!
Swissmiss - I, too, have issues with blood work. The lab techs here are NOT certified to access the port, so all they have to use is my left arm. After bruise upon bruise, and then an idiot tech taking blood from a bruised vein and causing a whole heap of trouble, I was told by one very experienced lab tech to ALWAYS "order" a butterfly needle, and if the tech refuses, then ask for a different tech. Apparently the butterflies are more expensive (by mere cents), so some will be stingy with them, but I've found I get my way on this with little to no arguing.
Oh, and as to constipation, Senekot tea is helpful. Also bran crackers and muffins, Activia yogurt, and scads of water and gatorade. I find I deal with C the first few days following chemo, and then D for a few days after that. Although, this time around, those two side effects have been pretty mild. *crosses her fingers*
clarrn - *Love* the story about the speeding.
I'm always telling my husband to "play the chemo card", especially while shopping for a vehicle. "It might even help if you take the kids and they cry a little," I said. HA! Blueberry - Regarding SUVs, we're looking at the Honda Pilot very seriously. I test drove it last summer and LOVED it. The Highlander was nice too, but is really more of a 4-seater, given that the back row is virtually unusable unless you're a hobbit, and the middle seat in the second row is really more of an armrest. Clarrn - what are your thoughts on the Nissan Murano?
Today I woke up with the "burnt tongue" as well as burning ALL the way down my throat. Ugh. HOW does one EAT when it feels like you've poured scalding water down your esophagus?
Have a great day Ladies! Thinking of you all!
Nita
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sitting here with my dry mouth wasting my day waiting for the home care nurse to come to give me my neulasta shot. Good grief!!
Feel a bit better nausea wise. I notice that my fatigue has increased and I'm dying to exercise but won't here the phone from the basement!
C'mon nurse - please call soon
And yes, hail the ny rangers! Believe it or not I fought fatigue all night!!!!!
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Blueberry - to add onto what ColdinCanada said, my DIL has driven her Honda Pilot for 2 years and she has never had a bad word to say about it. She just loves it. The ride is very smooth, the interior is very ergonomically friendly, there have been no mechanical problems and it is very spacious. We are often 7 when we are going out to dinner, etc. and no one ever complains about being uncomfortable (of course we are 7 adults so we would probably complain more ;-) ) She has taken it on quite a few long trips and it is comfortable and quiet so that you don't have the road fatigue.
Nana - have you ever tried a neti pot? You do have to be careful to use sterile water and keep it clean. Usually I just use tap water from our deep well but with the chemo and WBC's I am very careful to make sure I boil the water and renew every 24 hours. I use plain, fine ground table salt. I always do this when I have a head cold. I never have to take OTC's or prescription pills and I never have trouble breathing. My sinuses never hurt. It sounds terrible but it is easy. Just a thought.
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clarrn: Glad your Taxol went well. Sorry your PiCC line didn't last and they're having problems accessing your veins. I'm sending good vibes your way that the next 10 go better.
linda505: Thanks for the tip on Valium. I've don't know much about and have never been on Valium so I don't really have an opinion.
My doc gave me a muscle relaxer (Flexeril) after my BMX, but I'm trying not to take so many meds, so I guess I'll just suffer for a few days. I hope you get clean CT scan results and more energy back on Friday.Nita: Sorry to hear about the burning throat. Would something cool and smooth like a milkshake work? I hope it gets better soon.
Footballnut: You have a home nurse bring by your Neulasta shot? Wow, that's nice.
I have to drive to the hospital to get mine. In fact, just got home about an hour ago.Well, I think the fatigue is starting in now, so I should go rest. Wishing everyone well with their treatments and recovery.
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Just home from my CT Scan - will not have the results til Monday ughhh - so a weekend of not knowing
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Linda - That is just "UGH". Hate the wait.
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linda. That sucks! I had my results back in 4 hours. I would call docs office tomorrow to check....They may have only told you that rediculous turn around time.
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Linda: Ugh! So frustrating!! If there was one thing that technology could offer all of us, I wish it was to take away the waiting. I hope you have a great book or something planned that can take your mind off it (if that's possible).
We're all here with you. Prayers.
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Just found out that my CA 125 tumor marker is up to 67. Three weeks ago it was 50 and three weeks before about 35. I'm trying not to panic.
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Timbuktu - keeping you in my thoughts and prayers. My MO only ran those once and will not run them again on me. I had two active cancers - one in each breast - this is before my BMX and/or any treatment. My tests were normal. He said that they are not very dependable and that inflammation anywhere in your body can cause them to rise. Are you have any symptoms of anything?
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Good wishes, Linda!
Quick question, Anyone's blood sugar count go high? And does steroids make that happen? Thanx Ya'll.
Here's to easy SE's for everyone.
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Hey Merg - yes the steroids will mess with your sugar big time. I am type II diabetic and mine goes high for the steroids days. I have cut my steroid intake way down - with my MO's approval.
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Merg, my blood suger has also been high. The tech said it can be because I'm not fasting before the blood draw.
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High blood sugar is relative. If the test is done and not a fasting test - then normal for a none diabetic could be anywhere between 80 and 120 ish depending on how long it was before the test that you ate. A non diabetic rarely will get above 120 and will quickly return to normal, no matter what they have eaten and when - unless you are taking steroids - then you can throw that out the window. In my case, I am a diet controlled diabetic, I don't take any meds - my normal fasting sugar - first thing in the morning is 90 ish. On my none steroids days if they test my sugar, whether I am fasting or not, I am usually still under 100 as I eat low carb, use no sugar and therefore rarely allow my sugar to get above 120. On steroid days - even if I am fasting - it has been as high as 200. I can feel it when I am that high - but I return back to my normal levels a day or two after I am done with the steroids. Chemo can cause temporary diabetes and can also cause permanent diabetes in those who may have been pre-diabetic prior to chemo. If you are interested in testing your sugar, - Walmart has an inexpensive tester and inexpensive strips that work quite well - It is there Relion brand. But in general, unless you are going really high I wouldn't worry about this during chemo but I would monitor it after chemo to make sure that you return to normal.
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More on sugar. My levels were high after the steroid use - more than 200. After more testing, GP and MO conferred and I am now taking metformin ( a drug for type 2 diabetes). The plan is to take it through chemo and for 2 months after, then see if I can get off of it.
Prior to chemo, I was controlling sugar with diet. Things did get out of whack after my DX, when I ate a little too much comfort food. So, I did not help myself.
Sending good vibes for your results, Linda, and hoping all is well Timbuktu.
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Thanks Sharon for the well wishes. I considered going on metformin during treatment but decided I wanted to see how out of control it got and for how long - I really was trying to avoid going on diabetes meds prior to BC - but I may end up on them anyway - there are some studies that metformin MAY be beneficial in preventing a recurrence- but last I read on it wasn't that hopeful that it was actually helping. I am going to try to see my endo next week and have her run an A1C and a few other blood tests and talk to her about the met and see what she thinks.
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good morning all!
I'm soooooo tired this morning! This is the most fatigue that I have felt since these cocktails have started. Ugh!
Last night I awoke to major hip and lower back pain. Cuddling with the hubby for heat helped. This morning it's not too bad
I've noticed that my eyes were crusty this morning. Oh the fun of it!! Lol
The bump in my right ear love persists but seems to be improving. Polysporen here I come!!
Now to brekkie, walking and weights! Then guitar practice!
Wishing all a great day!!!
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Have some energy this morning, so thought we could use a little pick-me-up going into the weekend. Note - still waiting for some pics of our lovely MameMe and Brigadoon
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sharonDe love it! Our journey in photos! Look how far we have come! Thanks for the laff - I love the " hockey nut"! On a day when I have no energy I needed this and will now push my butt out the door for a walk!
Many thanks!!!!!
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football nut I hope you got out the door.
. I actually got out and had lunch with a fellow breast cancer survivor. It was wonderful. The best company and I just LOVE hanging out with my friend.
. I am still a little drained today but better than yesterday. I did find out that my big toe is infected already . So soaking it is now a must. Chemo the gift that keeps on giving. . -
well I walked 2 miles in 45 minutes. Felt good. Doing arm weights now. Man I'm soooo tired but it feels great to work out!
Chemo sure does keep giving doesn't it!!
Lol
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Happy Friday the 13th ladies!
I wanted to do a quick scan and see how all of you beauties are doing. I should confess that I thought I would be doing chemo again with all of you (starting in April) but I decided to do a clinical trial instead (no placebo) and am doing well on it.
I noticed some low RBC comments and hope everyone is eating as much protein in your diets that you can stand. I would say I just about doubled my protein intake during chemo. Adding greek yogurt, protein bars and nuts helped a lot. It was the one thing I felt I had control over in my life.
Timbuktu- 67 isn't extremely high, but its the trend they should be looking at. What does your MO say about it? I would be asking for a scan about right now. Be a squeaky wheel. If you need to be changing treatment wouldn't you want to make that change now? Does anyone else get cancer antigen drawn? I get CA 27-29 and CA 125 and I find them to be very accurate for me (based on scan evidence). One exception is during radiation, most RO's wouldn't do them during radiation as it is blasting those up and will show a very high number of those proteins in your system and it will not be an accurate.
You guys are an amazing team!!!
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Thanks Lovie. I called my onco today and she said that she wasn't worried at all. I have had a clear scan and she said that others have had much higher scores with no cancer. so, I relaxed.
My hemoglobin is doing well, 11.8. I try to eat red meat and I cook it in a cast iron pan so some iron will leach out into the meat. Then I take a vitamin C pill to help me absorb it. they told me tc isn't as hard on the bone marrow as some other chemos.
I'm also going to have another opinion with the onco from Sloan. I'm trying not to be too nervous but when opinions differ it's hard.
Have a good weekend all of you wonderful women!
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Went to work today only made 1/2 day. I had to work so slow so I posted properly!!! I am a bookkeeper, and the office manager! I am trying to drink 64 oz of fluid, wondering if a banana smoothie counts since I am sick of waster and the sparkling. Oh well.
Did eat a hamburger patty for dinner and and added Greek yogurt to my instant breakfast smoothie and a banana. Should be good protein.
I plan on taking claritan tonight since I have my first neulasta shot tomorrow morning.
I hope everyone is resting and doing what they are supposed to.
My youngest dd, who is 21 just did a complete Lysol spray of the house...,she is so paranoid I am going to get an infection. Well it shows she cares!!!!
Good night all.
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Hello everyone,
I hope you're all hanging in there and have had a good week. I'm just checking in. I was in the chair today. #4 of 6. Long day. Fatigued and nauseated. The usual. I have my heart monitor on. I'm so short of breath, I was surprised I wasn't anemic. Makes me think the ticker is suffering though. Sigh. One day at a time.
The silver lining is my other sister is here from Canada. She's very upbeat. That sure helps.
Have a great restful weekend.
Love the pictures SharonDe. Keep em coming!
Cheers,
Laura
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Hey Ya'll. Thank You Chemo for all the bad pain in the last 2 days. I feel so much better. Owww, it really has been hurting. I'm just having a pity party & anyone can come. Sorry for the whining. Shoulders, neck, arms are also whining.
And I forgot to mention that my chemo tongue says thanx. yuk. sorry.
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Narco helps.
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Merg, you never have to apologize here. In fact, I'm declaring this board an apology-free zone. This is the place to whine, complain, throw a tantrum, and cry without guilt or apology. Pity parties welcome!
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Good morning ladies. Thank you so much for all your kind words and prayers regarding the untimely passing of my niece. The funeral was beautiful with many of her young friends in attendance and lots of good memories being shared. My sister and bro-in-law exhibited remarkable poise and strength, and I'm not sure who was comforting who as they received guests. It was truly beautiful. We are home now. My SEs were very tolerable, except for the C which I'm still battling. I did not want to transition into the horrible D I experienced after round 3 (especially knowing I had a 5 hour road trip ahead) so I cut the Senokot dosage in half and now I'm just trying to get regulated. We are home now. Today they are having a party to celebrate her life - a request she asked of her dad in a vision he had the morning after her death...
ANYWAY...
Linda I am praying for you and hope you get your good results sooner rather than later. The waiting can consume you, so just try to keep distracting yourself with good things.
I woke up at 3am today and am waiting for DH to wake so I can go take a walk. I think that might help get things moving... ugh. I thought if they start moving too quickly I can call him to pick me up, lol. Plus my two puppies would be very upset if I go for a walk without them since nobody else is awake here yet to keep them company.
Football - sorry about your NYR. They had a great run, that's for sure. I love your recent picture. When I was at the funeral on Thur, I had to get up and use the bathroom and my right food was acting up. I don't know if it was from standing for 4 hours during the wake before sitting down. But it was turning in with every step I took. It corrected itself soon after. Hopefully not neuropathy rearing it's head.
Today is my 50th bday and all I want to do is kick back, take a dump (hahaha), and putt putt around in my garden. I have had no nausea as of yet after last Tuesday's round 4 which is a beautiful thing.
Thank you again girls, your words about our angel meant a lot. Here is a picture of her.
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What a beautiful angel, indeed, LongIsland.
I hope you can find a way to celebrate your birthday today and find a silver lining. I remember not turning 50 with grace. It was more saying the age out loud than being 50 that bothered me I didn't feel, don't feel, middle-aged. I got over that quick and turn 52 in August and now I say bring it on!
Wishing you the ability to have the taste buds to enjoy some cake and ice cream or a nice glass of something to celebrate this great age.
So far so good for me. Not nearly as nauseous with this final round of AC. However, had DH bring me home from the grad party circuit because I was just too tired and didn't have it in me for idle chit chat for party #3 Went to bed at 9:30 and have been tossing since 3am with no dog to walk like LongIsland.
I could smell the chemo from Tuesday lall night through the pores in my skin. Wasn't wxactly night sweats, or maybe it was...but, yuck! Couldn't stand that odor all night! I seem to get it every time but this round was worse. Glad to be done with AC. Bringing on the taxol in July. What a fun summer!
Wishing those of you waiting on tests, not feeling well or generally in need a pick me up a weekend of sunshine and distractions to get you through.
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Happy Birthday LongIsland. Wishing you a great easy happy day.
Your niece is a beautiful Angel.
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LongIsland - I am glad you were able to make your trip without too many SE's. Twenty-two is so young and she was a lovely girl. It makes me feel lucky to have had a full life even with the BC.
You will soar at 50. I find the older I get the more honest I am with myself and the less I care about superficial things and other peoples opinions.Happy Birthday from VT.
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Happy Birthday, Longisland! Wishing you 50 more
And your niece is such a lovely angel.Mmtagirl...I remember telling my old MO that I could smell the AC for a week after infusion, and he said he'd never heard of that. Man, I'd love to give him just one AC infusion so he'd grow some empathy
Hope it passes soon. Although Taxol has other SE's, there is virtually no toxic smell. Much easier on the tummy!Wishing everyone a great weekend!
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LongIsland - Happy Birthday! And Yes what a beautiful Angel!
Good morning ladies- My post chemo report- I am now week and four days past my last chemo. The Neuropathy is still hanging around. It has moved into my lower calves. The MO put me on Gabapentin 300mg three times a day, so far it is helping with the pain a little. The fatigue is sticking around. I can still only do so much each day before I am exhausted. Other than that I have no other changes. Oh and the I can't taste or that tastes like poo poo mouth has not gone away. I am dying to have a Sushi feast!
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Your niece is a beautiful angel, longisland. Glad you did ok with the travel, and Happy Birthday.
Sorry about the Stanley Cup, Footballnut. I'm not a hockey fan, but our 14 yr old granddaughter is obsessed with the Kings. She's very happy today:
Wishing everyone a nice weekend.
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LongIsland, I am so sorry to hear of the loss of your niece, and appreciated your sharing of the family event in her honor. What a picture. Beautiful.
As far as your 50th goes, the best of wishes for a year that gives you more of what you want. Hope you can celebrate in some good way, not necessarily moderately, either!
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OK, here is a current pic, hot off the press. The pixie cut I had 5 or 6 weeks ago is getting longer but also thinning drastically. I had a wig styling yesterday, will gussie up in one of those soon to compare. Had chemo Wed., and am beat today. Very strong taste of chemicals in my mouth, which happens well after the actual infusion. Why is that? Its a huge reminder of being in treatment, esp. when you want to forget that for a day or two.
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well since we are allowed to whine here I come. I soaked my toes yesterday like the PA at my oncology said and now both big toes are infected.
. So I have earned the oncologist office a call tomorrow on a Sunday because of my stinky toes. . Grrrr. Great thing is I made it shooting an 8 hour wedding today with only one back cramp and one Charlie horse in my hand.
. This was a huge boost to the ego and three people who have meet me before told me how great my hair style is. -
Mameme- You are beautiful! What a great smile. My hair is really getting thin now. I took a picture yesterday that I will try to post later.
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That must have felt great, Jamie! Feeling weird-looking with chemicals in my system and hair falling out DOES cut into a girl's self esteem! I'll have to take note of when I feel ok and focus on that.
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mamame- such a beautiful pic. Just make me smile!
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Hey MameMe, You look Fantastic!
I think I've lost about 1000lbs with this nasty chemo tongue!Quick story, couple years ago hubby broke his head from a fall & has lost his sense of smell & taste. He can't tell the difference between any foods, good or bad. So I finally told him I can totally understand that with this chemo tongue.Yuk!!!!! Any good suggestions? Happy Dad's Day to all the Moms who are both. Easy SE's for all.
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MameMe Your hair looks great! I still have the chemical taste in my mouth too. I will be reallly happy when it goes away!
I woke this am with numbness in both of my hands. Just a little, but it is very bothersome that the Neuropathy may have spread to my hands as well as my feet. Typing is proving mildly difficult. Oh well another bump in my road.
Here's to a SE free day to all you beautiful ladies!
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Hey mikishelley, I am sticking my tongue out at everyone now if they're bad. They all go ewwwww....
Have a great SE free day.
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Beautiful pic, Mame - you do have a lot of hair still.
Jamieh - am impressed you could do an 8 hour wedding photo shoot!
I hear everyone on the no taste / fuzz mouth. Yech. I wonder when taste buds come back?
Sorry about the neuropathy, mikishelley. Mine comes and goes, mostly I am feeling like my nails want to lift away ... Another pleasant outcome.
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Sharon De - That is exactly how My nails feel. Does it help to cut them down?
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OK, one thing I'm really frustrated with is the darn cold I have! My "feeling good" week for my last two infusions have been plagued with this horrible cough and cold. I don't have a lot of congestion, no fever, but the nagging cough just keeps on keeping on. I can't go five minutes without coughing. By the end of each day, I feel like someone has been banging on my head with a hammer because of the full day of COUGHING. I go for my next infusion in three days, and I feel like this chemotherapy is preventing me from getting over this common cold. Will I be stuck with the horrible cough through the duration of my chemo treatment? I've used OTC cough medicines, which aren't very effective during the day. I take Nyquil every night so I can sleep, and also to deal with the aches and pains the Taxol gives me. Is anyone else experiencing anything like this? If my chemo goes as scheduled, I'll be done in a month, but I don't know that I can do this coughing routine every single day for a month longer. Honestly, it's wreaking havoc on my bladder control, and with the C and D I've experienced with Taxol, I'm literally a mess
Hope you're all having a SE-free day, and that you are enjoying Father's Day with loved ones!
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swissmiss, I'm sorry you are suffering. When I had CMF, three years ago, I caught a cold that lasted two weeks. My husband got over the same cold in 3 days. Thats chemo for you.
My bladder control is awful too. I hope it improves after chemo but I don' t think it will go back to normal and that will entail more treatments, ugh.
The aches and pains are horrid and for three days I was on hydrocodone, round the clock. Then yesterday, I realized I was really feeling depressed and out of it. I looked up side effects of hydrocodone and eureka, that's where i was. I decided to endure the pain but I had to take an ativan to get to sleep. That was the best thing I did because I slept for 10 hours straight and woke up a different person. there is no way to overestimate the need for sleep.
My neuropathy is pretty constant now but as it's not yet been a week since my third infusion I'm hopeful it will ease up soon.
It all sucks. be easy on yourself. I know it's hard but we really have to lower our expectations at this difficult time.
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Hi all,
Just stopped in to say hi and check up on everyone. Haven't been on here in about two weeks. I thought I would catch up on everything but I can't read through all the pages I missed! Wow! You guys have been busy on here.
SharonDe- I hope you are doing well. I did see the montage you made. So cool! You are the best!
SwissMiss- I hope you changed oncs. I know you were unhappy. I see you have a bad cough. I had one and my PCP gave me a prescription cough medicine that actually worked! It tastes awful but I was having very bad rib pain from all the constant coughing. It is Promethazine VC.
I started my Taxol last week. It was definitely easier on me than the A/C, but I now have new issues. No nausea with the Taxol, but body aches and fatigue. MO told me I am slightly anemic, but will check my blood weekly to keep an eye on that. Also started having very bad edema in my lower legs and feet. MO put me on Lasix for that, also potassium as mine was already low. He also put me on a B complex and Calcium and Magnesium to try and stave off neuropathy. So my kitchen counter looks like a pill factory! Eleven more weeks...
I am having so much trouble with my eyes that I called my eye dr. He said that our corneas have fast growing cells so that is why the trouble. Great. But it should clear up after chemo.
To everyone else - I wish you all the best, a good nights sleep and minimal SE's.
Hugs to all, lilyrose
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Timbuktu...I'm sorry you're feeling those aches and pains. I agree, sleep is so very important. I'm determined to get my MO to to write a prescription for a sleep remedy. Between this cough and steroids, sleep eludes me. Are you doing weekly or DD a Taxol? Have you suffered from neuropathy the whole time?
Lilyrose...yes, I changed MO's. I am much happier, and feel changing docs was the best thing I've done since having a mammogram six months ago. I'm going in for my second DD Taxol infusion with new MO on Wednesday, and I feel confident my treatment is going in the right direction. Thanks for asking
And I wrote down that cough medicine you received...I need to get with a family doctor and take care of this before I drive myself and everyone around me crazy! Believe it or not, I don't have a family doctor. Seems only a couple months after we moved to Tulsa from Minneapolis that I was diagnosed with cancer, so never got around to it. So hard to get on the ball with all this stuff whirling around me. I can't wait until the day when I feel like I'm not climbing up a hill. I look forward to the day when I'm done with chemo, radiation is behind me, I have a new crop of silky hair stop my head, and I can say I survived this. I can't wait to see us all there
We can do this! -
You guys are so sweet! Thanks to all for the kind remarks. I love seeing you all in the collage that Sharon did, and some of the ind. pics people posted. Its hard to get much out of the tiny avatar shots, at least for me.
I was so wiped out yesterday, I couldn't get out of my own way. Two long naps, got nothing done, felt trapped by cancer treatment. Today was totally different, no naps, no real fatigue, took a two mile walk, got seedlings planted into big pots and took DH out to dinner for Father's Day. I did not feel stricken with side effects, at all. Up, down, up, down... I guess its the nature of the beast.
Nice to have your company through this peculiar adventure we are all on.
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I'm doing Taxol/carboplatin every 3 weeks. The dr thinks i'm done after only 3 infusions.
I had another opinion that I needed 6 infusions so I'm uncertain but boy would I love to be done.
today was a lot better. although I got palpitations. palpitations are scary and the dr wants me to see my pcp about them.
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Timbuktu- what chemo did you have last time ?? I hope you can find put where your palpitations are coming from. I get them from low RBC's.
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Longisland - your niece was beautiful. I am so glad you got to make the trip and that SE's were not too bad.
Mameme - I think your hair looks beautiful.
Mikishelley - thank you for another update on your post chemo status. I hope the neuropathy goes away soon!
Jaimeh - so sorry to hear about your infection, I don't know about you but every additional thing just gets hard to take!!
Brigadoon - thanks for the advice on the netti pot….it really does help, and I believe acupuncture helped too. Cold is much better.
My newest issue is hives and itching. It is driving me crazy. They are showing up in all different places. Top of my feet, hands, then back, then neck. Benadryl is helping but then they show up somewhere else. My husband thinks it's from chemo, but they didn't start until about a week after my last infusion. I am going to call my MO tomorrow….I have to say I am really worried about round #4. It is my last one, but round #3 was so bad and now hives. I'm so discouraged.
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I had cMF for breast cancer. the tc i'm on now is for endometrial cancer.
My hemoglobin was 11.8 last time. I try to make sure I eat red meat and I make it in a cast iron pan so the iron will leach into it. then I take a vitamin c so my body will absorb it more readily. I'm not sure this is why my hemoglobin is ok but it's worth a try.
I think the palpitations may have to do with my blood pressure meds but I'm not sure. I forgot to take one last night and the palpitations were bad today but when I took the meds it went away.
I also took a xanax for good measure.
My onco said "anything is possible when you're on chemo". Ugh!
btw, I get itching after my infusions in spite of the benedryl. I take over the counter benedryl for a few days and that seems to help.
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LovebeingNana,
Sorry to hear you have hives and itching. I am having the same issue with the hives and itching. It started 11 days after my 2nd treatment. It's pretty bad, hands, legs, neck, arms, pretty much everywhere. I've been taking Benadryl and using calamine lotion, and I get a little relief, but then it comes back. Each day has gotten worse. I will calling my MO tomorrow. I got a small rash/hives after the 1st treatment but I thought it was a heat rash. This time there is no doubt that it's an allergic reaction to either the Cytoxan or Taxotere. Not sure I can take this much longer.
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good morning all
Just catching up. My plumbing has shut down so took 2 senekots last night. Sort of got things moving a bit but my tummy is killing me as is my lower back and hips. I feel so bloated! Having said that whenever I've had issues in the past my tummy was always affected
Dry mouth and fatigue were my two worst SEs this past weekend besides my stomach. Yesterday was the worst! No mouth sores but I can relate to the cardboard taste. Perfect way to describe it!!
I feel like I've blown up like a balloon. So bloated! Ugh!
And now no hockey! Well it was a good run!
My hubby and I are considering reuniting our acdc tribute bend for cancer benefits only as I suspect that we will get a good crowd out and hopefully raise some. $ for research. We are targeting late fall so hopefully it will work out
No chemo until July 2 so hoping for reduced SEs as summer approaches
Have a great day all!!!!!
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Hey Nancy, I just left a message at my MO's office so I will let you know what they say! I have read some that Taxotere can cause this so we'll see what they say. I am so tired of taking Benadryl! It just makes me even more fatigued!!
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Nancy - I have a problem with itching too. I am convinced it is the opiates. Do you take them? I did some research online and itching was mentioned as a temporary SE.
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well just got the call from the hospital for the results of my genetic consult. When my hubby and I met with the counsellor 4 weeks ago she alluded to the fact that she would be surprised of I was BRCA + due to the fact that my mother had cancer in her 70s and that neither my sister nor any of my cousins or blood relatives had cancer at younger years. My aunt had bc at 80 and my paternal grandmother had colon cancer at 80
So now I have to wait until then end of June for my results.
If I'm positive I suspect that this would mean a hysterectomy and having my right boob that never developed but that just hangs there removed
Would that assumption be correct? Anyone test positive for this? If so what were your next steps?
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lovebeingNana: I put a call in as well. I'll update once I speak with my MO. I'm on day 4 of these hives and it really sucks.
Brifadoonbenson: I'm not taking any opiates so I'm thinking it has to be the taxotere.
Ugh. This is miserable. This is supposed to be my good week before my next treatment. Oh well. Hopefully my MO can give me something to stop this itching.
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mikishelley - my nails are short. I don't know if that will help or not. I'm not icing my nails during taxotere, but I do suck on ice chips which seems to have helped with mouth sores.
About the hives and itching - I've had 3 tx and had bad rash/ itching after each. Usually stats Day 5 and is mostly concentrated around chest, neck, back area. Haven't really had any large hives, so it may be different. Dermatologist gave me a prescription cortisone cream and recommended Aveeno Rash/iItch relief oil that you put in your bath or use in the shower. These things helped.
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3
1
I had a long nail that broke in the middle and since them I've been keeping them short.
I woke up today, alive! I couldn't believe it. Today is one week since the last infusion (3), and darned if the life force hadn't sneaked into my body! don't give up girls, better days are ahead
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feeling like garbage today ! Couldn't poop so I took senekot last night. Since 7am I've been pooping, cramping and then shivering. So I've gone from the big c to the big d in a matter of hours!! No fever. What a day ! Trying to drink some g2 and eat some crackers. This is the worst that my SEs have been since this started.
My last round of FEC was last wed
Have a call into my nurse
:-(
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Hi girls. Today is a better day than yesterday. The awful
constipation followed by severe diarrhea is really getting old! Boo! I do think I'm turning a corner though today... we will see. The good news is that Round 4 was definitely better than Round 3 - next to no nausea as of yet. Tomorrow will be one week and I'm hoping to get back to work tomorrow. Today I got outside for a bit - did a little planting and went food shopping. I was worried about being in the grocery store and having to "go right now" but fortunately that didn't happen. Next month I will take the two senekots for the 3 days for sure - never cutting back on that again. I really don't think it's the Senekot causing the diarrhea - I think it's just a course we suffer digestively from the anti nausea drugs and the chemo.
I was interested in something a couple of you said about your nails feeling like they were lifting away. Back in May I did a long hike where my toes got severely injured. Consequently I ended up losing 4 toenails and I attributed it to the hike and the shoes I wore. Now I'm wondering if the chemo played a role in that... (things that make you go hmm..)
Summer is upon us ladies and we need to remember to stay out of the sun. Luckily it hasn't been crazy hot here yet in NY. And I have a big old oak tree in my backyard which will help keep me in the shade.
Hope everyone is faring well today xo
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Wow our pooping issues are really ramping up
. I have had the big D since last week. It's just there and not going away. I added mouth sores to my list yet again so far I am totaling up 4 of them which is getting old. Tomorrow I head in for taxol and herceptin which hopefully will not be too bad. I started taking vitamin B and l glutamine and co Q 10 to try to stay ahead of the SE's. Is anyone else taking any supplements ??
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I take magnesium to help with the restless leg situation that has amped up since beginning taxol. I also take Vitamin D and Glucosamine. All ok'd by the MO.
I have been struggling with rotating between C and D throughout the last couple of weeks. It's rough. Feel like my diet is the worst, but I do not want to eat fruits and veggies with this stuff going on!! Bread and cheese, that's my go to. LOL.
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feeling a bit better but being tied to a washroom from. 7 am - 2:30 pm is not my idea of fun! Been sitting outside in the shade since 2:30 reading and drinking my g2
Hate the sensation of throbbing cardboard in my mouth. Atleast the cramps in my tummy are dying down. What a day!!!!
My nurse told me that I should take colace for a few days if it starts up again and to keep drinking the fluids that I don't feel like drinking!
As far as supplements I'm taking b12 and vitamin d
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My MO's nurse called back and said he is going to check my thyroid when I go in for chemo this week. I guess since the hives are in different places at different times, he thinks it could be the thyroid. I guess it is possible for chemo to damage the thyroid.
They also moved my chemo up a day from Thursday to Wednesday....it is my last chemo so I am glad to get it over with sooner...but round #3 was so tough on me I kind of felt like I needed an extra day to be ready. Oh well.
For supplements, I take Vitamin D, Vitamin B6 & B12, and also L-glutamine powder.
Today I started taking prilosec because now I have new GERD issues.
Anyone else have new GERD or heartburn issues? -
Hey all,
FInally got a call from my MO about my CT results and Hep blood tests. CT was clear - nothing on liver and abdominal cavity looks fine. Bloods test neg for all types of hepatitis. So he is almost 100 percent certain that my elevated liver tests are just chemo related.
Relieved!!
Thanks for all your well wishes!!
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Linda505...congrats to you on your GOOD NEWS!!!!
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I was told that the twitchiness and restless leg syndrome was a side effect of benedryl.
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Thank God Linda
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excellent news, Linda!!!
No new GERD issues here, just the same ones I've had since beginning tx. I take a Prilosec every day to keep it at bay.
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Linda that's great news !!
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Linda - I am celebrating with everyone else. Great news.
Timbuktu - I get RLS when they give me Benadryl but I have had it often without the Benadryl. Guess it's an equal opportunity occurrence.
I have taken Protonix for GERD for years. Maybe that is why I haven't had any stomach issues.
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So happy for you, Linda!
I'm still dealing with residual stomach issues (approaching two weeks post infusion). It feels like hunger, acid reflux, bloated gas, and a general funny feeling all at once. I take Zantac every day starting on chemo day, and Tums once in a while. Has anyone found something that works for this?
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Everforward ...I have GERD even when I'm not on chemo. You may want to try a diff med, like Prilosec or Nexium that is now OTC in the 20mg dose. I typically take Rx protonix, but MO bumped me up to 40mg Nexium, which is still Rx. it is helping tons, but I still have chemo cough from irritated esophagus and a nice raspy voice to go with it, which is another se of the irritation and acid. May also want to continue taking something all the time, while still getting chemo. That way, not playing catch up.
I have a lovely steroid rash, like a teenager. MO gave me Rx for that too, like you would use for acne! NICE!!!
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Yay, Linda!
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Somehow even though it shouldn't, it feels better knowing I'm not alone with the relentless D. As far as supplements go, I take B6, B12, D3 and a multi. All ok'd by MO. Jhodro, I feel exactly the same as you. The healthy diet takes a complete 180 during SE time. Sux. Pasta, crackers, cheese, bread, cake... ugh. Oh well. We do what we have to in order to get through.
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Linda Woot! Woot! I've been actually thinking of you today and waiting to hear you got the all-clear. I got mine 2 weeks ago and know too well that hellish waiting.
CELEBRATE!
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Congratulations Linda 505. That is indeed great news!
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LBN, I had never taken a GERD med in my life, and the number of times I'd had pepto bismol or the like, you could count on one hand. Enter Taxol, and man, did I get a wake up call! I recently resolved to take a Pepcid AC rx daily, whether I thought I needed it or not, because the heartburn is SO bad, I thought I was dying! It got worse as the infusions mounted up, and maybe that happens with all the chemo mixtures.
I take a Natrol one daily multi, calcium with magnesium, a baby aspirin and a vit D3.
I am excited because I walked three miles down thru the woods and thru our tiny town, to a friend's house with DH tonight. It felt like hiking, was almost all downhill, and I made it! There's hope for me yet! The YMCA has a Livestrong program for cancer pts that costs nothing and involves trainers and some former can cer pts. I am looking into that tomorrow.
Linda that news was really good to hear. Thanks for sharing that. Phew, huh?!
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My MO called back and doesn't feel the hives/rash is from the Taxotere because it was delayed for 10 days, but says he can't completely rule it out. Either way he prescribed Prednisone and told me to continue taking the Benadryl. Hopefully this clears up soon.
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Thanks MameMe - I do think the prilosec is helping…hopefully it will get better when chemo is finished.
Nancybel - that is pretty much what my MO said but he didn't give me prednisone yet. I am taking benadryl and steroid cream. It's so annoying!!! I hope you feel better soon!!
Linda I am so happy to hear your news!!!! Yay!!!!!!!!
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Congrats Linda!!! Wonderful news!!
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Congrats, Linda, on the wonderful news! Time to celebrate!
Footballnut: I did the gene testing too, and fortunately am negative for any markers for cancer (good news for my 2 daughters). If I had been BRCA positive, they would have recommended removing my ovaries and possibly a prophylactic mastectomy on the non-cancer breast to reduce reoccurrence. I went ahead and had a BMX anyway. Looks like we'll be chair buddies July 2!
Sorry to hear a bunch of y'all have the digestive issues. I've been hit by the big D on prior infusions around day 8 so I'm expecting it tomorrow. :S My biggest issue today is my TEs are super uncomfortable and I am out of breath as of day 5. I can't sit comfortably and after a short walk across the room, I have to rest! My heart rate is about 105 resting. Anyone else?
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MommyQ-I have always had a high heart rate so guess I probably wouldn't be able to tell.
Does anyone have hemorrhoids? I had a terrible case after a bout with the D that put me in the hospital. Now every time I get D or C it comes back. I did make it recede by doing toe touches 3 times a day.
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I had tremendous pain in my rectum. Still do from time to time but it seems to be receding.
Is there anything that doesn't hurt during chemo? I think it would be easier to list those!
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Brigadoone - I have had hemorrhoids for years but it flared worse than ever after round 2. I didn't have to be hospitalized but it was extremely painful.
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Timbuktu & LovebeingNana - I know. Between UTI's, C,D,H, e t c. A roll of toilet paper would not be long enough to list our daily reminders.
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Oh, brigadoon - your last comment made me laugh out loud. So true. Yes, I have had the H problem as well. I find using medicated wipes helps, and a tub soak every few days. This is one of the reasons I try to keep on top of the C & D roller coaster.
I never expected "normal issues" - hemorrhoids, constipation, heartburn, and the like - to be some of the worst Chemo side effects. I dunno what I expected, but I thought we'd be hit by more exotic problems (not complaining!).
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Hi all,
Linda-great news! Yay!
MommyQ- my heart rate has been high ever since I started chemo. Just normal housework tires me out. My MO is keeping an eye on it. He told me to worry if it becomes erratic. But I also have times when it feels like my heart is going to jump out of my chest!
Brigadoon- I never had hemorrhoids or any bathroom issues until chemo. My poor system swings between the big C and the big D. Going to the bathroom is just painful! To top it off I'm on my second UTI.
The good news is that my gene testing came back BRCA negative!
Also taking Prilosec has been wonderful. No more heartburn!
Wishing you all well, hugs, lilyrose
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For the H issue: my husband has dealt with this for several years. So we purchased an add on to our toilet that is a heated seat, like a bidet - the seat is heated, the water is heated. He had lived in Japan for a couple years where he first got hooked on them. I never bothered with it before this…but it has been a God send. Highly recommend if you can swing it. He no longer has H problems and it has really helped me avoid it with all the problems rotating from C to D to C again.
Sorry about SE's…hope you're all feeling better. I just woke up from today's cocktail. Now I'll be up for a day or two from the steroids.
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Omg girls, I am apologize for being so MIA - been trying to get through each round, go back to work in between rounds, and try to have as normal as possible home life with the hubs and kiddies :-)
Last week I finished round 4/6 - finally seeing the se's subside (except for those pesky mouth sores and hot flashes which last a bit longer grrr!). I have my bilateral masectomy surgery date - 8/20! Eeek. Ive met w my plastic surgeon and I think have settled on just saline implants (although I have spent time considering the diep flap and latissmus dorsi too)
Now that I see the light at the end of the chemo tunnel approaching, I will admit ive let myself worry and get caught up in alot of "what it's" for the future (ie/reoccurring, etc) and sometimes those worries really get the best of my mood - I assume this may always be a lifelong worry or struggle, and that scares me a bit more than I realized it would.
Whew - sorry for the mini vent!!!
love and hugs to all!!! You girls amaze
Jen
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Since we are discussing bathroom issues let me refer you to a solution for the big C that I think will entertain you -
http://www.amazon.com/Haribo-SUGAR-Classic-Gummi-Bears/product-reviews/B006J1FBLM/ref=dpx_acr_txt?showViewpoints=1
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I think I mentioned this before but when my nails started to lift I put tea tree oil on them every night to avoid getting nail fungus. I am not aware of anything to keep them from lifting once they start. This was probably my worst side effect because I kept bumping them. Your brain tells you they are right where they always have been and even a nano higher you constantly bump them. I'm so sorry any of you have to get this 'gift'.
Footballnut - I'm BRCA1+ and had my ovaries removed as a precaution.
It sure is nice to hear good news on here too!
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Hi Jen! Nice to see you again! I hope you have had some good family time!
Football nut- my BRCA just came back negative. Yay! My MO told me that if I was positive he would recommend a double mastectomy and removal of my one remaining ovary. I had a hysterectomy a few years ago. But I am Triple Negative and he said for my type of BC that would be recommended, as there is no targeted therapy for it. I'm not sure what they would tell you.
Hope you are doing better! Hugs, lilyrose
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Brigadoon, I just read that review on the gummy bears...hilarious!!!!
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Those are the BEST reviews ever. Thank you so much for sharing. Needed a good chuckle!! LOL!!!
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hi i am looking for answers too- i had a mastectomy on my right breast April 28th have not felt right since-i have HER2 neo positive they want to start Chemo July 3rd i have to do Chemo once a week for 3 months and then Taxpol for 12 weeks every week and then Herceptin for 52 weeks every week- does anyone else have to do this and has anyone gotten 2nd opinions? or even thought of doing alternative medicine? i am terrified of chemo cause i am just starting to feel good and now i am going to be sick for 3 mths so not happy about that at all
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increased heart rate goes with anemia, especially with exertion like climbing stairs. On the flip side...exercise that increases your heart rate improves low red blood counts!
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brigadoon: My heart rate has always been high too, but normally around the low 80s. Hey, thanks for that link to the Amazon reviews for the gummy bears. My daughter & I both had a good laugh reading them.
Lilyrose: I guess a rapid heart rate is just another SE for us. It's just scary to me. I can't wait until chemo is over so I can do normal activities again!
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Nice to see you, Jen. Have enjoyed your FB posts, but haven't been on there rmuch.
Had to stop back in to say I just had a chance to check out the gummy bear reviews - truly LOL material. I imagine some of those creative review writers drive the Amazon staff crazy
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Jen I started with implants and then went with a hip flap. If you nap have any questions let me know. I can give you the pros and Von's of both of these.
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So tomorrow morning is my last chemo. The hard thing is I don't feel physically ready for it.
This is the first round the fatigue has remained the whole time - I think having the cold last week didn't help. I am so glad I am almost finished but I am dreading the next several days. I have been thinking way too much about recurrence today too. I should be so happy right now that I am almost done! -
I know what you mean love. My dr tells me I'm done and I'm so nervous about that while at the same time I'm thrilled. Only 3 infusions when 6 is the norm? As much as I hate this, I want to do what I can now to prevent recurrence. I'm between a rock and hard place, just trying to be happy that she thinks I'm done. But I'm still getting another opinion....
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Thanks Timbuktu….it really helps to know I'm not the only one.
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I could have written your post, LovebeingNana. Even though no.3 wasn't worse than the others, I have been so tired, I can't imagine doing it again - I'm a week behind you. Took an Ativan to help the sleep tonight, since I keep thinking about recurrence and questioning treatments to date. This is unusual for me, but perhaps a normal part of the process?
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Sharon it is unusual for me too!!! And I don't want to feel this way! I do think it is part of the chemo funk….just don't feel strong physically or emotionally.
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Took a xanax and still can't sleep. ...
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Hi Ricanbabe,
Your treatment seems the norm for HER2+ type BC . Do you know what your first course will be? After that going to weekly taxol and weekly herceptin is used often. I know there are people here who have used natural products and alternative meds and the choice to do that or not do chemo is totally a personal decision. But you need to learn about your type of BC first. HER2+ is an aggressive form of BC and luckily we have a target therapy to utilize. Before you make any decisions get a couple opinions from doctors on your choices and what difference doing chemo and herceptin will make to your odds of reoccurence and/or survival. Good luck.
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I'm in the chair as I type...wish I was brave enough to post a photo
It's a good day so far...taking a break from reading my latest book: Outlander. Thanks, Ladies for the recommendation, I'm hooked already and I'm only on chapter 4!
My new oncologist prescribed some cough medicine and I've been sleeping well, except for dealing with my new night sweats
I also received a new rx pain medicine (Norco) for the anticipated joint pain from my Taxol infusion. He also said ibuprofen is probably the best OTC for this type of pain. And I'm determined to stay ahead of the C, and hoping D skips me altogether this time around. I felt like either the Taxol or the steroids, along with the pain meds, just completely stops my entire gastrointestinal function...such a lovely new side effect, isn't it? Crossing my fingers the SE's can be better tolerated for this infusion. Wishing you all a wonderful week with no SE's!
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Sounds like things are better with the new onc, Swissmiss. Wishing you minimal SEs in the coming weeks.
Thinking of you today, LovebeingNana, as you get your final tx.
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Ricanbabe, Not everyone gets really sick on chemo. I'm 67 and have had relatively minor SEs from 4 DD rounds of AC and, so far, 7 weekly rounds of Taxol. I consider myself one of the lucky ones and am grateful this has been my experience. My heart goes out to the brave ladies here whose experience has been otherwise. I think everyone is pretty much terrified of chemo before they begin, but please know that some lucky ones like me have a relatively easy time of it. I have exercised fairly strenuously every day since I've been in treatment. I was an avid exerciser before bc, so I'm sure that helped. I didn't join the threads here until well after chemo was underway. I have two friends who had been through the same chemo as me for bc - one 12 years ago & one 23 years ago. The one who was first dx'ed 23 yrs ago, had a recurrence 17 years ago. Both are completely cancer free today. Both of them had relatively minor SEs like me. I held onto their experiences for dear life. It really helped me - just knowing there were some women out there who did relatively well. Best of luck to you.
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Hello everyone! I'm coming out to the other side from chemo last Friday. Just checking in with everyone.
Linda - I'm so glad about your CT and hep results. That's awesome!
Swissmiss - good luck in the chair today. Sounds like you're in good hands now.
Sharon & Lovebeingnana - I can so relate. I'm sick of being sick.
For my GERD, I take Prilosec 20 mg every morning. Works for me and I have a small hiatal hernia. Sorry to hear of everyone's battle with C and D. I've been taking senekot s every night on the days I take the zofran. Only those days or I get D. It seems to be what works best for me.
I had a typical post chemo few days except I stayed in bed all day Sunday with compression stockings on to avoid another syncopal episode. Instead, I passed out in the car on the way to the get my neulasta shot on Monday. It's the worse, most scary feeling. I truly feel like I'm dying. My heart rate drops very low and I break a cold sweat and I go out for a minute or two. Takes me all day to recover. At least I was on a heart monitor this time. If I could avoid this SE, I think I could handle chemo better. It just scares me now anticipating these episodes.
Feeling stronger today though. Watching the World Cup! Stay strong girl friends.
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Ladies! I just caught up on a whole lot of posts here! It's been an eventful week!
First of all, LINDA! Hooray for clear scans! I am SO HAPPY for you. I paused and did a little happy dance when I read your post. Awesome stuff.
Brigadoon, the gummy bears. Ba ha ha ha ha ha! Thanks so much for the belly laughs today. Too funny.
Nana, Yay for the LAST ROUND!
But I totally get the whole "not being ready" thing. I have two rounds left, and while I'm super excited to be done, I'm also worrying and worrying about whether everything I've done will be enough to keep me alive to watch my babies grow up. Cancer is just so unpredictable, and really, just so UNKNOWN. So, YEAH, I get you. Excited to be done, dreading the side effects, and SCARED that it all will be for naught. Sending hugs and prayers your way. Praying especially that the last round will be totally anti-climactic and that cancer will leave you alone from now on. Ricanbabe - I second what Linda said. Her2+ cancer is not something to mess around with, and we are so SO fortunate to now have a targeted therapy to treat it. Herceptin is a God-Send; it really, REALLY is. Chemo is a matter of personal choice, so get a second opinion if you wish, but it sounds like your MO has given you pretty good advice regarding the standard treatment. My cancer was also HER2+, and chemo was a no-brainer for me. I just turned 39, I have a husband and 2 children, and there was NO WAY I was going to give cancer the upper hand. As hellish as chemo side-effects have been (and I have had them ALL!), it is DOABLE. And in the end, I will know I did everything I possibly could to win the fight. Good luck with your decision.
Ah, Ladies, the TUMMY TROUBLES, right? I feel like my entire digestive system is rebelling. It not C, then D, then back to C, followed by D. And then there's the ever-present queasiness, stomach cramps, and BLOATING. Plus the dry mouth/burnt tongue and food aversions - makes eating kinda tough. Oh yeah, good times, right?
Speaking of food, you know those little apple sauces you can get - they come in a whole bunch of flavours, all of which taste like baby food? WELL, if you FREEZE them, they taste not so bad AND feel awesome on a chemo tongue. WIN!
I discovered this weekend that I only have SIX WEEKS left of chemo! In just SIX WEEKS, I will have crawled out of the chemo fog for the very LAST TIME. And six weeks really isn't so long. It's NOT. And now I'm getting all excited.
Oh, and we test drove the Honda Pilot yesterday. I think I'm in love. I told my husband I want it delivered in SIX WEEKS. With a big bow on it. And a "Congratulations! You're Finished Chemo banner". And maybe a choir.
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Here's a question for all: does anyone that is bald or with wisps of hair ever feel like their scalp is sweating or damp?
I feel that way all day especially at night when the back of my neck feels clammy to me but fine to my hubby
Thank goodness for a much better day today. No pooping but I'm cool with that. I can use the break. It gives me time to see the rest of my house!! Lol
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I kind of like being bald, it's so cool and my hair is never messy. No shampoo needed.
I just realized this thread began in April and June is more than half way over! I see the light at the end of the tunnel!
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Timbuktu : check out my webpage www.sassyhead.com.
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Linda - Wonderful News
LongIsland- I have heard loosing nails is a se of chemo. I was very worried about it before I started, but I never lost a single nail.
So I am now two weeks and a day past my last chemo. Neuropathy in my feet seems to be doing better at least I do not have the pain anymore. My biggest issue is weakness. I can't seem to walk 50 feet before my legs feel as if I have run a marathon. Also I have muscle twitches little ones that constantly move all over eyes, feet, stomach oh and they never stop ever. The MO said I have at least another week before the SE's stop. Darn!
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Footballnut: I'm bald and have the sweaty scalp! I didn't start feeling this until infusion #3. It's on and off. I just assumed it was because the weather just got hotter.
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Hi Golfingirl, OMG I am so scared - start next Thursday. Never had a thing wrong with me, never took a pill, test or had surgery. This came all at once! What is the Tough that you are finding with the Chemo? I do understand that we are all different but it's good to listen to others. Thanks, VeraAnn
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Had to wear my "beach attire"
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You look so young and healthy! Congrats!
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nana congrats! Awesome pic!!
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Big Applause and many congrats to you, Nana, for finishing! Wishing you the best in the upcoming weeks.
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Yesterday the D was so bad, and I was out of Kaopectate. I got in my car, drove to the grocery store and got a bottle. I opened it in the car and swigged it. As I did, I looked across the lot to a vagrant sitting on the ground swigging who knows what, and tried to find some irony. It felt like a very low moment. At that moment, Tom Petty's "Don't Come Around Here No More" came on the radio. Then the verse... " I don't feel you anymore. You darken my door." I almost choked and spit as I laughed out loud and sang the verse again directed at the big D. You gotta love a moment so low that can turn around into something hilarious. Humor is the best medicine. I told my bff this story and when he said good night to me he said, "Sleep well and don't go drinking kaopectate with any vagrants tonite." This morning I sent him this picture with a text, stating, "Me and my new friends last night".... yes, being home sick all week leaves waaayyy too much time on my hands. Hope that made some of ya smile or laugh. We gotta laugh, girls xo
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Congratulations Nana!! Here's hoping for minimal SE for your final round.
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Longisland - Hysterical - love it!! Lol!!
Linda - Fantastic news!
Nana - Big congrats to you!!!
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Longisland - Love it!!!! Strange how our chemo brains work and where we now find humor and irony.
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I was thinking along similar lines, Linda - It helps us stay sane.
Loved your pic, Longisland.
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lol... Love it Longisland
Nana - congrats! Beautiful picture in so many ways!
Football - yes, I am having the sweaty head, especially at the back of my head.
Just had #3 of my weekly Taxols - so far I am still doing well. Some bone pain, muscle aches , and occasional burning in hands and feet. Chemo mouth continues but I still feel so much better than on AC. Night sweats have come out of nowhere and I can t sleep, Ativan doesn't seem to make a difference.
Had one of those nights last night where I realized that nothing is guaranteed and that I REALLY want another baby, but it doesn't look great ( fertility specialist said that we had secondary infertility prior to chemo so I think our chances are slim). Woke hubby up with my sobbing at 4 am. This disease just takes so much. And sometimes I get tired of the brave face. I should be so grateful that we have a beautiful sweet 3 year old, and great church, family, and friends. And I am. But I miss my breasts and the possibility of breastfeeding if by some miracle we can have more children, I miss when I could lay down or hug someone without pain, I miss work, the gym, my hair, nipples, etc. I miss fitting my pants...lol. The lymphedema scares me, and how does one properly scrub in with a lymphedema sleeve when I can go back to work. Not sure I am ready for a desk job away from the patients and families I love but there might not be an option. Yuck. One day at a time right? Thanks for letting me vent, you ladies rock! I have so many people who love and support me. It's just such a huge adjustment. I have to get away from the TV. Hair commercial, followed by pregnancy test, then weight loss commercial! I will get through this and learn to love my new life, even if it looks different than what I wanted!
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But here's something happy... the new to us 1971 vintage boler... can't wait for it to stop raining and get to the lake!!
They nickname boler's up here... ours is the batmobile...lol.
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Oh Clarn - in many ways I could have written much of what you wrote. It is all so hard and everything else that isn't usually hard is hard on top of all of this. But you know I think we need to allow ourselves to grieve. I know I am in the process of it and for me that means good days (or sometimes only 1/2 days) and then times when I just need to sob. I grieve the changes brought about by surgery and by chemo and I grieve the old "ignorance is bliss" before I was confronted with my own mortality. But I am grateful for so many things too. It has really helped me to write it out in a blog I started when this first began. It is real and transparent as I have walked through this and I know it is ok to feel what you feel and learn what you can from it. I think you are doing a great job.
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Nana that is a wonderful picture with sign!
Clarrn, You mailed the losses from this STUPID cancer, it was soothing to read that entry. And really sad. I had a hard time after menopUse, accepting that I really could not have another baby. Having cancer while young is brutally unfair.
Boler, on the other hand is exactly the kind of antidote needed! An inexpensive way to travel in style and comfort. You are setting up the possibility for some wonderful days on the road and in the campgrounds.
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bravo nana!!!
LongIsland- just hysterical!!
So funny. My sassy head designs for bald women are taking on a life of their own. Some drag queens are using them as body art and a pregnant nurse in my PS office used one one her belly for a photo shoot!
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clarrn/ love the interior! It really looks inviting!
I just flew for the first time since November. I normally travel internationally for business so I am well seasoned. Today was Orlando to Denver. I was a little nervous about my stamina but I went. Put on my little compression sleeve and even asked someone to help me put my bag in the overhead. Done people took a double take at my excruciating short hair. Bad weather forced us to pass over Denver and in Amarillo. Checked into hotel late and dinner was a bag of veggie straws. Ahh the glamorous life. I'm exhausted but All in all it felt good to be traveling and beats the shit out of sitting in a barco lounger with chemo!! Wish me luck. I'm interviewing for a new job within my company I lost my old job when I was DX.
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Great picture, Nana!!
Clarn: you're definitely not alone in your feelings. This whole thing has so many ups and downs. On one hand, I know I should be grateful for what I don't have to endure, but on the other hand, I'm still struggling. And like many I've read about, I'm starting to get toward the end of chemo then I start to think of what's next. How do you live your life to the fullest when you have this monster lurking in the back of your head, relapse? I guess it's part of it - getting through the emotion. I think lately the emotion has become almost as difficult as the treatment, for me at least.
Best of luck - everything will work out for you one way or another. -
Nana-Love the sign! Great to hear you are finished!
Footballnut-I get that clammy feeling on the back of my head too. I don't like that sweaty feeling it bugs me.
Clarrn-I love your Batmobile! It is SO cute! Have tons of fun at the lake! We have a living quarters horse trailer and I always loved going with my DH to endurance rides. I do so enjoy camping with the horses. I hope I will be able to do that again this winter.
Had round 2 of Taxol this morning. Ten more to go, ugh. It is definitely easier on me than that awful dose dense A/C. But the big D just about wiped me out today. Slept between bouts all afternoon. Now the darn steroids have kicked in and I know I will be up all night. Got an antibiotic for the UTI today. My MO wants me to have another urinalysis done and get it cultured to see what's going on. Upside is my phlebitis is finally clearing up. U/S shows no blood flow in that section of vein though. Oh well. My hair is trying to grow back. It is a real fine fuzz. I don't like it, but I am going to wait and see what it looks like. I can't figure out the color...it doesn't look the same to me...hmmm.
Wishing you all well, hugs, lilyrose -
Clarn - we all need to find our new normal. It sucks and we have every right to mourn our loss of ourselves. That is what is feels like sometimes to me, that a big part of me is gone. My biggest emotional issues right now revolve around not knowing what to do about work. I have a job that I loved but has gotten very stressful for the last 3 years due to the economy and has been a challenge just to keep the company going. I don't think I can deal with that stress anymore but I need a job as I need to be able to pay for insurance and household costs. My hubby doesn't make enough for me not to work - I am the main bread winner. Prior to BC the old me wouldn't even consider not working where I am - I have been there for 27 years ughh...
Don't give up hope on a child Clarn - there is always that possibility and I hope you have a miracle in that area. NOW - I am totally jealous of your Boler - I have seen them before online - where on earth did you find it???? My hubby and I want a camper and that is just as cute as can be!!
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fluids? Water tastes yucky and too much makes my stomach feel bloated and almost nauseous . Ice chips? Juices? Fruit bars? All good alternatives? Thrush didn't help. Last Thursday was my first AC. Anyone else notice hair tingling almost right away? Ok one more. I have the option of giving myself the neulasta shot at home. I would save the 39 min ride and parking plus the one copay. It would only cost me 30.00 to do it myself as opposed to 65.00 plus time !
You all have been so awesome!!!!
Thank you
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Clarrn - your bat mobile is sweet. Looks perfect for getaway time.
Footballnut - I woke up with a clammy head. I still have quite a bit of hair on the back of my head which is also weird.
Lilyrose - good luck clearing up your UTI.
Mompv - I've never given myself a shot, but would learn to do so for the savings in $ and miles. Or maybe you have a neighbor or friend who can help you?
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Nana - CoNgRatUlaTiOnSSSS!!!
Clarn - You will make a lot of memories in your new Batmobile. I have always wanted an Air Stream. At my age it won't happen unless someone turns it into a home for the aging and parks it in their backyard.
We have all lost so much. I wrote this poem right after I had my dmx and DIEP.. It expresses the losses I have felt and have to work through in unguarded moments -
Do you know me?
Come here you say. Come across the expanse of sheet that never gets dirty and share my blanket.
Come into my arms and let me hold you.
Who are you asking? Are you asking me? I don’t recognize me when I look in the mirror, when I dress, when I touch myself. I bind myself with the veil that keeps it all in. All the fear. All the unknown. All the changes I am getting to know.
Will you know that it is me? Will you recognize the me that is part of the changes? The me that never changes? The me that you have known so intimately? Can you tell me if I am still there?
When I make that journey across the white expanse and feel the familiar engulf the new me I begin to feel a little of the old me. The tears come and I wish to know for you, am I still there?
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Clarnn - im sending you the biggest hug right now. ((((( xXxX ))))
I am SO happy to at least know that im not alone in this wierd, bittersweet, approaching the end of chemo sadness. A few months ago I was so excited at all the things id be feeling approaching my last round, but now, knowing only 2 rounds left (then my bilateral m 8/20) has me scared sh*tless. Did I do enough? Wil it really be all gone ? Will I ever feel normal? What if it comes back ? How do i stay positive and enjoy life if im worrying every moment of reoccurrurance
I know the first few years are scariest and most worrisome, im trying to find the balance of being realistic and being optimistic. A cancer diagnosis pulls the rug from underneath us, and I fear ill never get my "innocence/ignorance is bliss" back.Anyone have any advice on getting that aweful little voice out of your head? I really want to celebrate when my chemo is and my surgery is done - true celebration, not a smile hiding fear!!!!!
I've decided to start working out again too, in hopes to shake this funk a bit. Ive alwayd been a runner and very active person, cancer and chemo really took my mojo away, but I think some summer sweat endorphins should help! My MO said I could completley start running again as long as im sensible and safe, but I may just try some good ole' power walks in the evenings and wknd mornings while the hubs and kids are snoozing :-)
Ps sorry for the mini vent. This last round really put me down in the dumps!!!!!
Ps - hoping everyone an easy se-free enjoyable day!
Xoxo
jen
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Thanks everyone for all the kind words. It helps to know that you all understand.
The boler we found in Edmonton, they were made in Canada from 1970 to the early 80s before they sold the design to Scamp in Michigan. Scamp is operating again but I like the old ones. They remain popular bc they only weigh 900 lbs and just so cute. But they are 3 times what they cost when they were new! Lol.
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Good Morning Ladies! We are Day-I've-completely-lost-count of RAIN here in Calgary. Last year at this time, we had so much rain that it flooded a significant portion of the city and small towns surrounding, so I am praying it lets up soon.
clarrn - I have Boler Envy. I do. Your little Batmobile has some serious AWESOME going on.
mompv - I give myself the Neulasta shot every round, and it turns out it's not a big deal. My oncology nurse gave me visual and written instructions, and then my mother-in-law (who is a retired nurse) talked me through the first one. Honestly? My husband has a harder time with me doing it than I do. Even sitting down and NOT WATCHING, he gets light-headed. Which is pretty hilarious.
So, yes, I say save yourself the time and the money. And regarding fluids - have you tried freezing fruit juices in cubes and then blending them into ice chips to suck on? I also spend quite a few days each round just sucking on regular ice chips, but the juice chips make a nice change. Aw Ladies, we have lost so much, haven't we? I try to stay out of That Place as much as possible, but sometimes it just creeps up on you, right? Here are two ways I pull myself out of the I've Lost So Much Zone: 1). Find the humour in every situation. There is always a Ridiculous that will make you smile. And if you're laughing, the Bad doesn't seem quite so bad. 2). There are WORSE things in this world than what is happening to me. This doesn't lessen what is happening to me; it just puts it into perspective, like "Whew! At least I'm not THAT GUY". Examples? One of my children could be going through this instead of me. Or one of the many Monsters in this world could have targeted one of my babies and hurt them in UNSPEAKABLE ways. Oh yeah, I'll take breast cancer over THOSE options ANY DAY.
The thing is, what has happened to me, to US, really, really sucks. It DOES. And we NEED to mourn everything we've lost. But this morning I woke up and I thought "WOW. I am not the same person I was BEFORE." You see, Before, I had reached a plateau in my life. I wasn't UNHAPPY, but I wasn't HAPPY either. I was restless. And I remember getting down on my knees and asking God to "snap me out of it." And He DID. In a big way. And now, I feel Better than Before. I feel I am now somehow MORE. Refined through the Fire. A better person, no longer restless, LIGHTER, and HAPPY. As someone else commented a few pages back "the good days seem SO GOOD". I take nothing for granted. I smile more, laugh more, hug my family more, tell them I LOVE THEM several times a day. Life is fleeting, and I want to enjoy every single second I have left (which is going to make for a very busy next-40-years!)
Do I wish it had happened in a different way? OF COURSE. I see Round 5 looming (just one week away) and I want to CRY. And, yeah, I am SO AFRAID that cancer will come sneaking back into my life just when I think I've beaten it. But that fear, while normal and completely fair, will NOT rule my life. Because then Cancer gets the power. And NOPE, not gonna happen. I have done everything I can to be cancer-free, and the rest I have to leave up to God. Faith plays a big role here, and mine will not be shaken. This is MY CHOICE. And it means, I WIN.
Something Ridiculous to take with you: I had a right-side mastectomy back in February, and I still haven't been fitted for a foob. So a wonderful friend of mine KNITTED ME ONE. I opened up the gift bag, pulled out this ball of knitting and THEN? I realized what it was, and we had a huge LAUGH. Seriously, it's AWESOME, and super comfortable, and I giggle every time I wear it. I'll have to post a picture of it. BEST. GIFT. EVER.
Hugs to you all!
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Coldin Canada, I absolutely love your attitude and philosophy about this whole cancer thing. As one of my favorite punch lines says, with all this sh##, there's gotta be a pony in there somewhere! You are so right. The good days are re so much more meaningful now.
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Cold, yes I think the constant reason is playing with my mood too! Thanks for the uplifting post, just the encouragement I needed. Much better me than my daughter, and I pray it never has to be her in these shoes.
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oops... constant rain
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Mompv - any fluid count except ones with caffiene is what the nurses told me - so drink whatever you can - I mix flavored vit water with my water sometimes 1/2 and 1/2 and that seems to help. Lemon squeezed into my water helps. Ice chips would be fine. Anyway you can get fluids is important - also if you think you are dehydrated at all call your MO and see if you can get fluids. I got a fill up on Friday and even though I was and am drinking alot I think it REALLY helped with the SE's this round.
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Cold - What you've written has hit the nail on the head. Thank you so much for articulating it. I've been going around and around in my head about this: It sucks. It could be worse. What if? It's very difficult to get through the emotional process, I'm finding.
Having you ladies to chat with has made all the difference. I appreciate your perspectives so so so much.
Thank you.
Went back to work yesterday, now day two. It's a lot harder than I expected. Not the work, that's the easy part, I think. The emotions. The fatigue. The wig. All. Day. Long. All of these things. But I'm going to get through it. One day at a time. And for those of you who have been doing this throughout - wow - I'm in awe.
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You ladies are all amazing, and have an eloquent and honest way of expressing yourselves.
LovebeingNana - you are a talented writer, as shown by your description of this experience in your blog.
Brigadoon - beautiful and haunting poem.
My heart aches for all of us dealing with this, for those with young children, for those with jobs to worry about, and for those with other problems piled on top of dealing with breast cancer. At the same time, I have faith we will deal ... I don't know if it's correct to call us survivors, fighters, or warriors ... I do know we are all stronger for having come together to share our experience.
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I know I have been Mia. Busy time, but, Have been reading everyone's posts
Brigadoon, your poem was so perfectly spot on. Brought me to tears. Eloquently expressed.
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Thank you Coldincanada you really said it all quite well. I am gratful it's me and not my beautiful girls! Yes we are being refined by Fire! He will NEVER leave us!!!!
Good tip on the fruit chips. I made some pomegranate juice ones to take to work today!
On another plus side the thrush is almost gone!
I still havent decided on the shot at home... Would be nice to be home if I am feeling poorly but if I am feeling poorly can I do it myself! Sheesh!!!!
Good day everyone!
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good morning all!
Pretty challenging week with tummy issues after third round of chemo the week before. Ugh! Interestingly I've been through similar bouts prior to diagnosis as everything tends to hit my stomach
Now I'm left with an abdomen that still feels a bit off - sensitive I guess - and a bit of discomfort in my lower back. When I sit back it almost feels like I'm pressing against concrete
My tongue has gone from dry to cardboard to a burning sensation but not too bad
I think that my eyebrows and arm hair is starting to fall out but hair grows on my knees! Too funny !
Hubby and I are going to orillia this weekend. Orillia is approx 2 hours north of toronto and is considered the beginning of "cottage country". The drive will suck but there's a nice lake up there and I miss the water!! Going to see the comedian that plays mike in mike and Molly at casino Rama. Hoping for some good laughs and weather. Maybe I'll take a dip in the lake !
Have a great day all!!!
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Getting out and about sounds like a good idea.
Anybody deal with ingrown hairs / infected follicles in the nether region? I don't have much hair there to begin with, but my Brazilian has been slow to come. Now this to deal with? Will try hot compresses - I really don't want to have to make a Doctor's appointment for this.
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sorry to hear Sharon! I have had no issues with that
I find it funny how my hair has fallen out. Still wisps on my head and " done there" as my mom would say. Lol
The hair growing on my knees is funny and I still have hair under my arms. Nothing growing on my face
I'm sure that my eyelashes are starting to go because I often feel like there's something in my eye and when I give a gentle tug on the eyelash in the vicinity, a bunch come out
Can't wait to see what grows back!!
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My turn to whine…..I had #4 (my last chemo) on Wednesday…well in the week before that I had started to get hives. My MO didn't think it was from the chemo because they came so long after I had chemo. SO he checked my thyroid which came back perfect. Now yesterday, after my chemo Friday, the hives are here with a vengeance. Last night I was covered from head to toe in massive hives and swelling. I ended up going to the ER and they gave me a shot of solumedrol and beaneryl - It took a long time to help but it finally calmed down. He also gave me a prescription for a prednisone taper down and for pepsin. I guess I should call my MO and make sure it is ok to be on more steroids??? I woke up this morning itching like CRAZY. I am really at my wits end. I have a bad feeling these hives could last a while. ANy suggestions?????
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Call the oncology dept STAT.
Allergy to chemo is important to address with them.
Good luck, keep us posted!
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Sharon, This is a little off topic, but can you share some more pictures of those adorable pups of yours?
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Nana Congratulations Welcome to the "I'm finished club"!
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Thank you MameMe, I called my MO. He wants me to get in to see my oncologist ASAP. I called them and they can't get me in until July 2rd. Is it just me? I have a long standing relationship with this dermatologist and they are making no attempt to see me any earlier?? Maybe I am just too grumpy…but that doesn't seem right.
Oh and thank you Mikishelley.
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LovebeingNana - I am sure there are some vacation days and a couple of tee times filling up the schedule - Fellow Grump.
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Right???? Brigadoon I am so frustrated. I mean she did not even try. She was short and uncaring. Not what I needed today. SOOOOOO I called my PC doc, she said give me 5 minutes and I will call you back. I now have an appointment at 2:40. Hmmmmmmmmm.
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Allergies can be dangerous. Hives are the least of it. I'm glad you got the app. I've found that you really have to be agrgessive. The nurses and clerks try to protect the dr. You have let them know that they have to deal with you. In general people will do as little as they can get away with. It's so awful that when you're sick you have to fight for yourself but that's what I've found to be true. Good luck, thank goodness there is benedryl! So sorry you had to go through this! My itching was minor by comparison but as soon as they would start I'd pop some over the counter Benedryl just to be safe. I have a lot of allergies and when they go into asthma, they are scary.
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Thanks Timbuktu…as of yesterday Benadryl was not touching this. Even after steroids, IM benadryl and pepcid I woke up itching. When my lips swelled last night that is when I got really nervous.
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For you Ladies! This has been my theme song from the beginning of this journey. We are Overcomers.
http://www.youtube.com/watch?v=b8VoUYtx0kw
P.S. Nana, my son has a peanut allergy and what you're describing sounds very much like a serious allergic reaction. Sending prayers your way. Be FIRM and TOUGH and DEMANDING with the docs. Oh, yes, it's time to be THAT patient.
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Nana, congratulations on the last treatment, and boo for the more aggressive hives. I'm pretty worried about them as mine have not gone away and my MO prescribed prednisone, along with OTC benedryl. This helps only mildly and for short bouts of time. If I miss my benedryl, I start itching again. My MO, also thinks that because of the delay (10 days later) it can't be from the chemo, but I have not changed anything in my life, as far as soaps and food. Argh! I have my 3rd chemo on Monday and am really concerned now. I've been taking pics to show my MO on Monday. I hope you feel better soon. I know how bad this itching can be.
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Clarn. Well said. You said everything I'm feeling. I hate that this cancer has already taken so much from me, and fear that it could take more. I've decided to just let go, and give it to God.
Cold, you are right, in that it can be way worse, and I am thankful everyday that it was me and not anyone I love.
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I wonder if you need more steroids? I only get 8 mm the night before and 8 the morning of because of my ulcer and diabetes. They tell me 20 mg the night before and 20 the morning of is the norm. I get none in the IV because I once had a terrible steroid reaction that way...my heart when crazy.
Good luck to one and all and here's to the day that this is all in the past! I don't know how I could have gotten through without you girls.
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nancybel after my third TC my hives start on Day 10 and my MO said the same thing. They started to improve by the time I went for #4. Now after number 4 the hives came on fiercely in under 24 hours. I hope your MO listens….this is terrible.
Thank you Cold…I definitely got pushy and now feel a little embarrassed, I'm sure the receptionist is not happy I went over her head. Uggggh
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I'm so sorry to hear some of you are having really bad reactions and side effects. Isn't it enough to deal with the drama of cancer without having to deal with the drama of the side effects? I hope you get some relief soon.
Being a warrior is exhausting.
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Football, I don't want to rain on your parade but as a friend I want to mention that my MO told me no swimming. Worries of bacterial infection...
Just felt it my responsibility to mention that. Hope you have a nice wknd away. Mike & Molly is funny and I can bet he's great doing standup! -
Nu-uh, Nana. No way. Do NOT feel embarrassed or guilty or ANYTHING like that for taking care of yourself. I think one of the hardest things we have to learn on this journey is how to put ourselves first. This is a foreign concept to most of us; we spend our lives putting others' needs before ours. But NOW is the time to put OURSELVES first. It's not selfish. It's self-preservation. So YOU GO GIRL. Get pushy and demanding. YOU are worth it.
"Being a warrior is exhausting." I'm stealing this EverForward. It just sums everything up so nicely, right? A friend of mine (and fellow cancer-survivor) said to me: "YOU are a tiger, and we're going to hear you ROAR. But even tigers need a rest now and then." Oh, YES. Because "being a warrior is exhausting."
We have SUNSHINE here today Ladies! I am going to SOAK IT UP (as much as one CAN soak it up under a sunshade and layers and layers of sunscreen, but SEMANTICS, right?) and enjoy my GOOD WEEK. By the way, Round 3 WAS the worst round for lingering SEs. Round 4's Dark Place was worse, but the SEs let up right on schedule, and other than being a tad more sleepy than usual, I feel pretty awesome. The Good Days are so, SO good.
Sending hugs and prayers. Hang in there Warriors!
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Nana - im so sorry and mad you're dealing with this reaction!!!! Like, im kinda pissed for you!!! You should be celebrating your last chemo and working out those se's , not hives and appts! Im sorry , but hopefully theyll figure out what it is and you'll get it out of your system soon. Hugs!!
Hey cold - did anyone ever tell you that you should be a writer?! You write in the best narrative, so witty and funny, but real and entertaining! You have a gift for writing and I love reading your posts and msgs!!
Love u ladies
Jen
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Nana I agree with Cold. Do not be sorry for standing up for yourself. I will definitely make sure my MO hears me out. Thank you for the information. Stay strong and try and rejoice in the fact that once these SEs go away, you are free.
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Thanks so much friends. Cold you are so right and how you put it made me cry….good tears.
It is all sooooooo exhausting and everforward I love that too. Sunshine I hope they figure it out soon too….I have seen on these board that if it is from Taxotere is could last 3 months.
I agree Cold, you should write a book. I LOVE reading you.
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Yes Cold, I agree. You have a talent!
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Aw shucks, Ladies. Thank you so much. Confession: When I was a little girl, I wanted to be a writer when I grew up. Who knows? Maybe that dream still has a chance.
Here's a little something to make you smile. This is my knitted foob:
It has a nipple and everything. So. Awesome.
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That's amazing. I hadn't pictured anything so (sort of) real.
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http://m.youtube.com/watch?v=L5bLvVjJ4MA
Cold and other who are leaning on God! This is one of my songs!
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Cute foob, Cold ( psst - you already ARE a writer!)
Checking in to see how LovebeingNana made out at the dermatologist's. Hoping the reaction has been resolved.
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Spending the morning catching up on medical bills. The good news is I've just about reached my annual out of pocket maximum. The bad news is my insurance company hasn't yet paid for my first round Herceptin so the provider added that to my bill - $6,000! According to the insurance statement, they asked the provider for more documentation, so I hope that will be adjusted soon.
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Thanks Sharon….it was a bit frustrating. He said with hives you just don't know how long they will last or exactly what is causing them…although it is a good guess it is the chemo. So I will stay on prednisone, benadryl and claritin for a while…..and with all of those I still have hives and I'm itching.
And my back went out. Not my week. Sorry to be a Debbie downer -
LovebeingNana - I have a terrible time with itching at night. No hives or rash but enough to keep me from getting into a deep sleep. The cumulative effect is tough. I have empathy for you.
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Actually I also itch, although i haven't seen hives. Sometimes I take Benedryl and sometimes Ativan so I can get to sleep. But its nothing compared to what you're describing. All of this will pass...eventually.
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Timbuktu_ Does the Benadryl work for you? I still itch. I have a script for Ativan but having trouble getting it filled as my prescriptions have to go through ExpressScripts and my MO doesn't send them electronically. I have to mail them in and then the wait is two weeks.
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My itching isn't extreme but it seems to get worse at night. The benedryl makes me sleepy and I think it helps the itiching but either way, if I can sleep, I don't feel it. Today is day 12 of the last infusion and I don't feel itchy today but it's unpredictable.
Ativan is very strong for me. If I take one I'm zonked very quickly. However, sometimes it feels as though it's difficult to breathe, which is scary. If it's not one thing it's another. Xanax isn't as strong but I think it makes me feel better.
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Thank you Brigadoon…I have to say that sometimes the Bendadryl works and sometimes it doesn't. Ativan definitely helps me sleep.
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Darn. Sorry nothing definitive - that seems to be the case with the skin side effects.
A cortisone cream helps my itching, but I have not had actual hives. Most of mine occurs around my neck, and is accompanied by a slight "weeping" of a clear fluid. After 10+ weeks, many of the skin tags and small moles in that same area have disappeared. I'm guessing we may all have slightly different things going on, but Nana's hives sure sound like an allergic reaction to one of the drugs.
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I've been reading your posts about itching…that is miserable. Sorry you guys are having issues with this. Hopefully it'll resolve soon. I know you've tried a lot of different things - but I'm wondering if Witch Hazel would help? It sometimes helps with things like bug bites or poison ivy, depending on how bad. I know it's yet another thing, but if you haven't tried it. Plus, I'm not sure how it interacts with everything else, but maybe something to consider.
It is amazing how we each react so differently. Ativan doesn't do a thing for me.
When I could enjoy a glass of wine and it didn't burn all the way down, I think that made me sleepier. LOL. -
Nana sorry to hear about the hives and continued itching. The prednisone helped me some but I'm still taking Benadryl as well. I hope this goes away for you soon.
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It took until day 10 after round 4 to finally be resolved of digestive issues and recognize myself in the mirror again. It's like, "Oh, there you are! Welcome back!
" At this point I don't even care much about SEs anymore, I'm just wanting to speed up the calendar and get done. With only an 11 day feel good window, I'd rather just get to #5 ASAP. During my sick days this is pretty much all the activity I could muster. Jack on the left is a fetcher while Cali on the right is a tugger. So when I found some energy on those dark days I could be found throwing the ball and wrestling an old garden glove and looking into these two sweet faces.
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Sorry, LongIsland. Hope your good days are really good. Your pups are just adorable.
Here's the face that gets me out to walk…Maddie had gained a ton of weight due to winter and my diagnosis. So since I've been able, we've been walking as much as possible and she's lost 5 pounds. She should be about 70 and she was up to 82 pounds, now back down to 77. She's a fetcher and a chewer at 9.
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I LOVE seeing your dogs! The little white ones are adorable and the lab is really sleek and handsome. They are such good companions.
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Too cute, Longisland and jhodro.
We also spent time with the dogs this afternoon. Went for a swim, while they watched from the sidelines:
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Hi ladies,
I've been reading your posts and many times I think I could have written them myself. It's exactly how I feel too. I started dose dense A/C in April and I felt I did okay. I just started Taxol on Wednesday and it's giving me different side effects. I had hoped Taxol would be easier. Has Taxol been easier for anyone?
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I love seeing everyone's puppies!!!!!! Here are my two guys…..they are so sensitive to what I am walking through…..
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love all the dogs. Heartwarming!!
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Firekat, It will be interesting to see how the Taxol affects you. Most people think its a lot easier than AC and other combo's. Taxol is all I have ever had, so can't help much.
Sharon, Cocker spaniels?? So dear! They must want to swim with you, or don't they? Some dogs can't resist pools. My BIL has a Jack Russell that swims for literally hours in his backyard pool. The little fellow is a machine!!
Nana, Your pups are border collies? Aussies? Great faces. They look very empathetic.
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MameMe they are Aussies! The white one is a toy, and the red one is a mini
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Hello, Firecat. I did a different regimen, but I've seen where some have said taxol is easier - but others say the opposite. Like everything, we all react differently. Best of luck to you.
Sweet pups, Nana.
Yes, Mame - Cocker Spaniels. They like the ocean, but not the pool - go figure? We had a Golden who lived in the pool, and would push his tennis balls in so he could dive in and fetch them.
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Oh - almost forgot. I shared a photo of my bald head with family and friends. My brother said I looked like a pumpkin with dimples ... LOL.
And, my insurance company (BC/BS) has invited me to join their Complex Care program, where I will have my own personal nurse coordinator. Kind of like getting that first AARP invitation ...
You have to laugh. Thursday will be my last tx - whew.
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I love dogs. Most any dog who captures me with its eyes. (except the ones who look like they want to eat me. Which means I love all your dogs - AAUUUJHHHHH! How can you resist those eyes!!! It was the eyes on our own that brought them from the rescue facility to our home. Hannah and Chloe rule the roost.
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Sharon! I have BC/BS…they've "invited" me to the same. I also have UHC as a secondary, got the same call from them. Funny thing, they were asking me all kinds of mental health questions and then asking if I have any 'cost' concerns. What? Of course, because they don't pay claims for months and months!! LOL. They say they are there to 'help' me manage costs. Um. I think they are worried about their costs!!! I guess it's just another 'club' no one really wants to join.
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Love the carpet!
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I have BCBS too...they just denied my Oncotype!!! Also, invited to same program, just haven't called back.
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Firekat - I am one of those that did really bad on AC, but way more manageable with Taxol. I even went to the lake for the day!
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Ooooooh, I see we are sharing fur baby photos. Excellent. Here's my Perri:
Love her to PIECES.
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Ahhh... First time out with our boler
Feeling well enough to enjoy it....priceless. Got a bit weepy at the campfire, just so grateful for great days and fantastic weather. So good. Where to go next weekend? -
Longisland, Your dogs are adorable! What breed?. Love the cockers too- that's the breed we've had-last one was a cocker golden mix. So sweet. Love all the dog pics. We are dogless now but when this is over, want to get another. Would have been so comforting to have had a dog through this!
Taxol so far is very tolerable. I did fine on AC too, but more energy on Taxol. Have exercised daily since beginning treatment and think it has helped me tolerate it well. I'm icing hands and feet during infusions to hopefully prevent or lessen neuropathy and nail loss. Big toe nails affected on AC, which is unusual.
Paula
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Clarn- Idyllic!
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I did the 4 DD AC then 12 Taxol. Taxol much easier but the fatigue by treatment 7 kicked my ass!
I am about 17 day PFC and my nails are tender, not too bad. However, still retaining water with the left foot and ankle swollen. Finally took a water pill last night and was up all night peeing. Feel much lighter this AM!!! - anyone relate?
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Brigadoon - it looks like your two love each other. They are beautiful.
Cold - Peri puts a smile on my face. Personality plus, I'm guessing.
Clarrn - that photo could be on the cover of a travel magazine. I'm jealous, but glad you are feeling well enough to enjoy.
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Dog heaven, I tell you! Wow! So fun. Little Perri looks like a puppy, but I wonder if she is? Brigadoon's pair are so photogenic, a great domestic image.
RE: Camping out, I wish we could meet at a state park somewhere and spend a weekend in our folding chairs, munching good food, taking walks and sharing stories. Of course, I would have to insist on perfect weather like we have right now... and cute little rigs for everyone to sleep in. Clarrn you have the right idea!
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Hi all!
Since we are posting pictures of our dogs :-). Love all of the pics' and clarrn that could be a travel magazine shot :-)
The pic is of my dog Blaze and me when we earned our Agility Dog Championship 1-1/2 years ago. He is a mostly border collie mix.
I did 4 dose dense treatments of A/C and started Taxol last week - that will also be dose dense. So far I feel that it is less harsh than the A/C. My head feels clearer and I am not quite so fatigued. I did have some bad pain, numbing, tingling in my lower legs and feet on Day 3 and 4, but that is mostly gone now. The MO had recommended a B Complex to take but I didn't have a chance to pick it up before treatment. Started that and legs feel better. So, either the Vit B's helped, or that is an SE that doesn't last long for me. Will find out next week I guess! Hoping it is the Vit B's as couldn't sleep for 2 nights
Hoping I don't get itching or hives .... I am allergic to Benedryl! (Break out into hives ironically)
Tomorrow is my bloodwork day plus will also be the weekly Herceptin. Taxol is not supposed to be as hard on the blood counts, but I can feel that they have dropped somewhat ... Will be interesting to see if they go as low as they always did on the A/C
For those going through bad SE, here is hoping they lessen or go away altogether.
I try to stay positive but it is hard sometimes. But, then I realize I only have 3 treatments left so got more than halfway through this somehow!
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I LOVE, LOVE all the pup pictures. We have three. Two hound dogs and a corgi who is the BOSS lady.
Taxol has been more tolerable for me but my good days are not as good the the after AC days that I felt good. Tomorrow I am in the chair for taxol #3 and herceptin followed by Wednesday back up to the hospital for my echo and onc appt. I am sick of doctors appointments already. I seem to be more tired but I can't fall asleep.
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I have to share as I believe there are fellow Outlander fans on this board. I just received this as a wedding gift from my friends in the Highlands! I am now the proud owner of a 1 ft sq. piece of Highland property making me a Lady! So perfect because my nickname is Lady J!
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We really do need a like button. The dog pictures are wonderful.
Makelemonade - I am always entertained by those agility trials. The dogs are so quick and SMART! I saw a video of a dog that threw its own ball with a contraption that someone made. If I can find it I will post the link.
Food tasted horrible when I was on Xeloda. I could only eat scrambled eggs, spinach, pork sausage, dill pickles and olives. I could drink only cider and orange juice. I drank water but it tasted flat. Oh, and I could snack on Good and Plenty candy.
Taxol has given me back food and an appetite. I am surprised I haven't gained weight.
When did those who have cut their hair make the decision. I have the same coverage all over my head but it is very thin and my scalp is quite visible. I did wear a wig the other night because I didn't have time to wash and arrange the head so that it looked like I had hair cover.
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Lady J...love it! I just started the Outlander series, but I've always had an obsession with the Highlands...I don't have a Scottish bone in my body, but oh I would love to visit one day!
I adore all your puppy photos! Wish we had a dog...we had actually purchased a beautiful viszla puppy right before my treatment began, but had to back out since we knew I'd be his main caretaker. A new puppy with surgery and chemo would not have been a good idea for us. Maybe next year.
I had my second DD Taxol last Wednesday. I feel grateful that the nauseous tummy is a thing of the past. Muscle and joint pain is quite severe, but by day five it is tolerable. I think if I only ever had Taxol I'd be in a good place emotionally. But after those long weeks of DD AC I feel worn out, both physically and emotionally. I feel like I started this journey a healthy woman, but today I feel only a fraction of the strength (emotional and physical) I used to feel.
I see that there are many treatment plans that include naturopathy. My treatment plan is very bare bones, and I feel like I could have benefitted from supplements or other complementary care that would address my ever-sinking emotional and physical state. Thinking out loud: I wonder if I should try to seek complementary care on my own?
Thank you, Ladies for all your wonderful posts and updates. You all keep me above water! Wishing you all a beautiful summer day to enjoy!
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jbokland - Yes, an Outlander fan here! Have you read the latest? I am half way through. Have grandkids this week so not much time to read. Perspective!
There is a great Outlander group on FB if you are interested. Jamie and Claire and escape go together.
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Happy Monday Ladies! Feeling SO GOOD this week. Enjoying some quality time with my babies. More on that in a minute.
clarrn - My boler-envy has increased dramatically. JEALOUS and HAPPY for you at the same time.:)
MameMe - Perri LOOKS like a puppy and most days she ACTS like a puppy, but she is, in fact, FOUR-years-old. I hope she never loses her puppiness.
Sharon - YES. "Personality-plus" describes Perri perfectly.
SO, when I met with my oncologist after Round 1, I asked him a very important question. We homeschool, and one of the things we had planned on doing this spring was raising caterpillars to butterflies. So, I asked my MO if this was something I could do. The LOOK he gave me, and the SILENCE that followed - I couldn't help but laugh. I am the ONLY person who has ever asked that question, and he had to think about it for a minute. BUT THEN, he asked ME a question. "Is this important to the children?" he asked. "If it's important to the children, then you should do it."
THAT. That RIGHT THERE puts his name on the list of Angels I have met on this journey. WOW, right? He saw me as more than just a patient; he saw me as a PERSON.
And, OF COURSE, we raised the caterpillars. We started with nine (and the children NAMED then all), got nine chrysalids, and NOW we have nine beautiful Painted Lady butterflies. The children are DELIGHTED (as is their Mama - how COOL is this?), and I am SO thankful the butterflies emerged during my Good Week. We'll be releasing them on Thursday, the day before Round 5. Awesome.
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Lemonade, I love that you went for agility trial competition. That is wonderful. You have to really know your dog and know your leadership skills to get that ribbon. Nice going!
C in C, You also get a medal for being creative and engaged with your bambinos while undergoing chemo. That takes commitment, stamina and LOVE. The little fellows will be learning a lot, and not just about butterflies.
In case I hadn't mentioned it, I am super inspired by so many of you, and also, can identify with all who share so candidly of the difficulties on this path. Hugs all around.
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Your furry friends are all so lovable and love your butterflies and the story of them Cold!
I had my first consult with an occupational therapist today to see what can be done about my lymphedema. Not excited to have to wear compression garments but at least hopefully it will decrease the swelling and keep it mild when I go through radiation. And physio will start soon to help me regain all my range of motion and keep it. Bonus: I mentioned that I was frustrated with the weight gain during chemo and the OT said the physio lady will make me a personalized workout plan
Finger nails really sore this week.
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Cold, I raised butterflies too! But not on chemo! You deserve a medal!
I want to get that butterfly kit for my grandkids, it was a great experience.
Anyone experiencing neuropathy? It comes and goes randomly which I'm hoping is a good sign that it may just go for good at some point.
Today starts the last week of chemo if Sloan agrees with my local doctor. It terrifies me to stop treatment.
I want those evil cells zapped, all of them. But the chemo does take a toll. Waiting for the consult to come through...
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Timbuktu: Today is the first day when I think the pain in my feet is more than just not wearing the right shoes. It feels like the skin is literally scraped off. I hadn't been wearing sandals much - - but since being back at work, I have, and today it was not a good day for walking. Ugh. I'm still hoping it's not that - that it's just bad shoes. But they are not new. I don't think I can be in denial any longer. But I have no Taxol this week (H only) and next week vacation, so I get two weeks off before my last 3 Taxol, so maybe I'll get some recovery going on. Good luck to you in deciding how much further you have to go.
I heard this saying today and I love it: In the end it always gets better. If it's not better, it's not the end.
XOXO ladies!!
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Do you have tingling? Pins and needles? Sometimes it hurts, especially in the beginning, but now it's more like when your foot or hand falls asleep. It's weird because it has nothing to do with anything I do. It moves from one hand to the other, one toe to another, with no rhyme or reason. I just hope it goes!
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I have the random pins and needles and tingling too. Lasts 5-10 minutes for me and moves around too. Also hoping that means it won't be a permanent souvenir!
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I am now wishing I had a dog after seeing all these fabulous pics!
Today would have been a good day for some Luvin' on me, too!
Blaming it on chemo pause which has finally arrived and hormones making me overly sensitive. I'm at the end do week 2 so can't blame the SE's. Best I have felt in a long time, except for being so dang emotional!
Just get tired thinking about 12 weeks of taxol starting 7 days from today. I am anxious knowing I didn't tolerate Taxotere very well. Ok. Maybe having my only graduate high school, have her party on Friday after attending a gazzillion other grad parties, and next Tuesday sending her off to Eastern Europe on an educational tour. Oh, and attended university orientation last week. So many beginnings and endings but all blessings. Not sure why all I want to do is cry today.
Thanks for listening. That's all I needed ....
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MMTA, That roster of activities would be totally overstimulating for me, esp. since I would feel I had to show up no matter how I felt. Tuck in for awhile if you can, rest up, get yourself back. Your emotions make total sense to me!
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mmtagirl - you would probably be crying about all of that without the added chemicals. That is an emotional time. My kids are in their 40's and I still cry when they leave.
I just heard from my DIL that they are getting a puppy, a Great Dane! It will be so great to have another baby on the property. I see more dog pictures in my future. I have never been a dog grandma before.
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Just wanted to say it was nice to see Swissmiss and Make Lemonade check in, I was just wondering how they were doing. Hope the other gals who haven't stopped by in a while are doing well.
Mmtagirl - agree - you've been through a very busy and emotional time, even without chemo effects.
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thanks for the words of encouragement. I am not usually like this. Woke up in the funk. Hated having to put my wig on, get my bloodwork, go to work and have to act like everything is great knowing I have three more months of this same routine. I have to keep reminding myself, one day at a times! Thanks for listening!
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mmtagirl: I totally get it. I've been way emotional too. And I don't have a graduate. I have a senior now, though. Like Mame said - - get some rest. Everything usually feels better after some sleep.
Timbuktu: I'm not sure. It's definitely not like the pins and needles I was getting in my arm before PT. It's more like the skin on the bottom of my feet is super sensitive, like when you walk a lot without shoes or whatever. Maybe like when you're getting a blister. But there's nothing there. I hope I just wore the wrong shoes and walked too far on my way to the client office today. I have an H infusion tomorrow, so I'll bring it up with the nurse. I hope yours goes away permanently and soon!! You too Clarrn!!
Brigadoon: I love great big dogs! Great Danes are so cute. I would love to have a Great Pyranes (sp?) but I don't think I could stand the hair and drooling. Although my lab does plenty of shedding. I would imagine being a dog grandma has the perks of being a kid grandma - all the play, none of the harder stuff like potty training!
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mmtagirl - Just let it out girl. Looking ahead to 12 weeks of chemo and having your daughter graduate and sending her away are enough to earn you some tears. I have just come to realize during all of this I just need to really let it out sometimes. Actually a lot lately. Can I say though great job Mom, sounds like you have a wonderful daughter.
Timbuktu - I don't have any of the pins & needs but I have taken L-glutamine & B6 from the start.
Jhodro - I hope your feet get better with the break - that is miserable.
I leave on vacation in 3 days. Need the vacation but I am a bit nervous….I don't have energy yet. AT ALL. Traveling seems exhausting to me right now.
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To all the cryers out there. (myself included)
My sister called me today to tell me some bad news about a close friend of hers. She felt so bad because she can't cry. She hasn't been able to cry for a couple of years because of some medications she takes.
I don't want to be on a jag for days but I do think crying is a good thing. Sometimes words just don't express the depth of our feelings - happy or sad.
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Thanks, Lovebeingnana. I hope you get some energy so you can enjoy vacation too!!
Brigadoon, you are so right. I guess we take for granted certain things. Sorry for your sister and her friend.
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Timbuktu - I suffered from "hand and foot" at the beginning of Taxol. My skin DID slough off my feet and very tender. The doc gave a specific skin care kit, I did foot soaks everything night and icing during taxol to resolve.
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cold good for you for homeschooling! I did it for 7 years. My DD' s went on to high school and college. My oldest even spent a semester in Spain studying Spanish . My youngest is a senior in college this year and getting married next summer. They tell me some of their favorite memories are mummifying the chicken and the numerous field trips we were able to take. So many advantages!!!!
I have my 2nd AC this Thursday! Head has been tingling but still there! Less stubble on legs though.
Good day to all of you this week! Hang in there all! We can do this!!!! One day at a time!
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I used to work for a retreat center that had a very dynamic weekend workshop for grieving and resetting one's emotional self. They had the best collection of music for crying, it was amazing! I think of that sometimes, because I resist my own tears like crazy, and could use a soundtrack to get me over my substantial defenses and into the emotional flow. Anybody have tunes that help bring the tears?
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Mameme - Any protest song - We Shall Overcome, Where Have All The Flowers Gone, etc. Also Imagine, Vincent, Un bel di, La Mama morta, In My Life I Ove You More, - the list goes on.
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My little guys are "designer mixes" (aka fancy mutts, lol). Cali is a cava-poo (Cavalier spaniel/Poodle) and Jack is a hava-chon (Havanese/bichon). They are the sweetest dogs in the world and they definitely help me get through the dark days.
Someone on here mentioned that their YMCA offered free classes to cancer patients so I decided to do a google search to see what might be free here. Lo and behold I found free exercise classes which are actually being held at my cancer center! Would have been nice if someone mentioned that to me sooner. I am very into exercise but I had to stop after the 2nd infusion because of sickness and fatigue. The classes I took pre-cancer treatment were too high impact for me to participate while on this little adventure. My cancer patient classes start this evening and run every week for 8 weeks. I'll let you all know how that goes
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Longisland, They are adorable and look very similar. I go directly to a free Life With Cancer yoga class following my weekly Taxol treatments. After that I stay for a guided meditation class. Twice a month I have a Reiki session - all free thru LWC. I still go to the gym every day or get on the treadmill at home and take a Pilate's reformer class. I've always exercised and my MO thinks it's a big factor in tolerating the chemo well so far. Good for you that you've discovered the free classes and hope they give you extra energy!
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Hi all, just popping in to let you know I am much better today. Got in some good exercise two days in a row and I think that has helped a lot.
Really appreciate all your support and helping me feel ok during my downer time.
Namaste!
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Great for you mmtagirl!
I had my first gym work out with the PT person at the BC survivors place. It felt really good to get an hour in. And, as a bonus, I met some other fellow warriors, 2 ladies were there working out, who are more than 10 years out!! They were talking about their chemo experiences as well. One recommended Accupuncture for the neuropathy, which I'll try.
MomMom: great that your center offers those services for free!! I do Reiki a couple times a month, I do have to pay, but I feel like it's the best way to relax. I would love to do it more often!!!
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Jhondro, I used acupuncture last summer for some pain down my arm and hand caused from cervical disk herniation. I had some neuropathy in my fingers and the acupuncture really helped. After about 4 sessions the pain was gone. It was also a completely relaxing experience....even more so than a full body massage for me. I highly recommend trying it. Good luck.
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mmtagirl, At the advice of several, I began getting weekly acupuncture treatments to prevent neuropathy. You are so right, it is completely relaxing! However, yesterday some of the needles seemed much more painful at insertion than in previous treatments. I asked him why and he said it may be because my chi was strong. Have you ever experienced that? Once they were in though, I totally zoned out as usual. Thanks!
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Greetings, all. Thanks for the reminder on exercise classes - I believe we have a place that offers them for cancer patients.
Had a visit from a good friend we haven't seen in years - she came by last night and I managed to stay sitting up for 5 hours! That's an accomplishment given the fatigue I've had. Starting pre-chemo steroids today for my last infusion on Thursday.
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MomMom my acupuncturist told me when I have that kind of pain it is because there is a problem in the area the are treating.
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Round four today. Anyone else in the chair today?
My "chemo guru" (a cancer survivor the hospital paired me up with) is coming by later with lunch for a chemo picnic.
And there's the Benadryl. So I will drift off now.
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Go get 'em Everforward!!! Enjoy your picnic! (And your nap
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I'll be in the chair at 1pm too! Taxol #4. Feeling pretty great today
And my MIL is coming over to clean my house while I am in chemo. BONUS! Of course I am frantically pre-cleaning...lol.. the dust bunnies are taking over! Step MIL is taking me, we are closer to the same age and she brings all the trashy celeb magazines that I never buy but are oh so entertaining! Always a good time on benadryl Hope your chemo guru picnic was encouraging Everforward!
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She really knows how to throw a chemo picnic! Here is the appetizer course.
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Wow!!! Looks like quite a party, Everforward.
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hi all!
I've just caught up on the thread - wow so much activity! Today I found out that I am negative for the mutated BRCA 1 and 2 gene.
I also found out that my mothers "down there" cancer was uterine. So I called her to give her the news.
:-)
Next wed is my 4 th round of chemo. Taxotere. I am ao nervous about SEs although I know some women that breezed through it. I knew what to expect with FEC and feel like I have to start all over again
Any advice would be most helpful
Have a great day!!
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Happy Wednesday Ladies! To those who are in the chair today, I wish you minimal SEs!
Mompv - Homeschooling is one of the best decisions we ever made. And we sort of fell into by accident.
Once we got started though, we never looked back. We learn together as a family, and get so much quality time. And NOW, having to worry about germs and viruses, etc, it is just so much easier than having to send them off to school every day. Well, it's Round 5 for me on Friday. Blah. I KNOW it's my second last round. And I KNOW that a week from today I will have crawled out of the Dark Place for the second last time. But I. DON'T. WANNA. I really, really, really, REALLY do NOT want to do this again. The mental temper tantrum is taking over, complete with curse words and kicking and screaming and fist pounding. *SIGH*
I envy all you ladies who are able to exercise so diligently through this. The chemo is doing a number on my leg muscles - every day I wake up feeling like I've run a marathon the day before. I'm so STIFF and SORE and stretching said muscles almost brings me to tears. All I can manage is a walk. Sometimes only every second day. A slow, shuffling walk. Like people with walkers pass me. I miss being strong and fit and being able to walk up the stairs without stopping to catch my breath. Also I miss FITTING INTO MY PANTS.
And that's today's whining. Thanks for tuning in.
Does anyone else notice the Pity Looks when you go out in public with just a scarf (or sans headgear - though I haven't been so brave yet)? I mean, REALLY, I like a good Pity Party as much as the next chemo patient, but do we need to go there even when it's OBVIOUS I'm having a good day, smiling and shopping and hanging out with the kids or friends or even solo? Like, HIGH FIVE me or telling me I'm ROCKING THE SCARF, but leave the SAD EYES at home. They're annoying, and they make me want to punch you in the throat.
And NOW, you all have gotten to see my violent side.
I've taken photos of the children delicately holding the butterflies on their fingers and I can't wait to show my MO the JOY he brought into our household by allowing the caterpillars. And I confess they have done wonderful things for me too. No matter how awful I feel, no matter the anxiety or the pain, every time I walk by that butterfly cage I am reminded that the BEAUTY in the world far surpasses the UGLY.
Have a wonderful day Warriors! Hugs to you all!
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Cold - I want to do some throat punching too!!!! I just got back from the grocery store and seriously....CAN NOT TAKE IT!!! I am so grateful for the people who intentionally look me in the eye and say hello even just smile!!!!
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Yep, those pity eyes get to me too. I went from the backyard to my front walk with my daughter on her bike yesterday and didn't realize that I wasn't in my hair. One of my chattiest neighbors on his front porch gave the the eyes, didn't say a word. And after that awkward pity stare, just walked inside. I thought maybe he didn't recognize me but, he knows my daughter well too. And she looks the same. Lol. Just shocked maybe? Nothing he can't fix with a plate of cinnamon buns. Maybe now that he knows I can get some treats to go with the pity. But still a hello goes a long way
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Mommom, yes, there were times when some needles pinched going in while others I couldn't feel. It changed each time. Once gently inserted I was fine. Don't want to scare anyone....the pain at insertion is no worse than an awkward phlebotomist during weekly bloodwork. Lol!
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Cold & Nana: Yep. I get it. Those looks from the people at my son's school. At the grocery. I don't like wearing the wig (HOT), now I only wear it when I go to work or out to dinner. I HATE those sad looks. I'm convinced it has nothing to do with us. It's actually FEAR. I got this at work today: "You look really well…" in a surprised voice. So you haven't seen me in 10 weeks. You know I have cancer. Couldn't you just say - it's nice to have you back. The weather is great - - WHATEVER - - you look really well, pffft. Because, no, I don't look WELL. I have a wig (everyone knows, small office), I've gained weight, my skin looks - well- not good, I have these giant circles under my eyes, and drawn-on eyebrows. LOL.
So - about the acupuncture - going out of town, on a cruise - would anyone trust that person, because it's offered? Or maybe I should just wait until I return? I am anxious to get it started before I have another date with the chair.
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Clarrn: I hope you get the best neighborly cookies ever after that! And I was in my car pulling out of the driveway this morning before realizing I forgot my hair. LOL. Had to go back in and throw the rug on.
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Uhhhh, the pity looks go hand in hand with punches in the throat for sure. Like clarrn's neighbor, I have had people that I know really well from my daughter's karate class pretend they didn't know who I was when I showed up at an event in a scarf. I think I still look like me, but even so I was with my daughter and she hasn't changed. She's really noticeable too with blazing red hair. I waved and said hi. They looked away, jerks. People really show you who they are in times of hardship, good and bad. On the good side I have had some friends step up with meals and rides for my kids and just because presents far beyond anything I could have imagined. They never look at me with pity either which is so awesome.
I homeschool my two kids too, Cold, and love it. Thank you so much for sharing the butterfly story. How fun! We raised ladybugs from larva one year and released them into the garden. We had 12 I think, and my son named them all Jeffery. What a good memory the Jefferies are. He wants to start an ant farm now. I have the equipment and just have to order the ants. It's a completely self contained kit so hopefully we won't get ants everywhere.
Re going out without hair or scarf: We had a tornado watch last night and in my head I kept repeating, "grab a hat and get the kids" so I wouldn't forget if we had to rush for shelter. (I mean my hat, not the kids, hopefully I wouldn't forget them) What strange things we are forced to think of these days...
A wish for no pain and minimal SEs for us all...
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Jhondro, have you gotten the you look great and I love your hair comment at work yet? Makes me think my real hair looked like s$it from all the positive wig comments. Have to say, at least once a day I am in the stall with my hair off scratching my head for relief. I am like you, wear it to work and minimally after that. I live in a small town with a big global company headquarters so I can't go anywhere without knowing someone. Getting used to it outside of work but at work if I wore a scarf I think I would lose the position leadership as a more senior leader. Not ready to handle that yet.
I wear two wigs to work and tomorrow I am off to the wig bank for a new one. I figure I might as well have fun with them and change it up if I have several more months of this.
As for acupuncture, don't know if I could go to someone that at a minimum doesn't have a reputable refferal that I could count on.
I live in Michigan, too. Pm me if you want to share where you live, and if close, I can share with you who I have used.
Enjoy your cruise!
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Mmtagirl: I totally have! I even got from this woman-girl (she still has the same high school hair cut down to practically her butt) saying "wigs are all the rage, you're going to love having one" Seriously? I can't.
And yes, I am in a very small office that is not temperature regulated (old building), and I go in our restroom a few times a day taking the wig off to let my head breathe. Don't get me wrong, I'm happy I have it, but it is so hot. Some of us need to get together and invent a ventilated wig system, like the cooled seats in cars. Flip a switch and an internal fan kicks on!!
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Pity looks... I always wear my wig to church so I look completely normal (whatever that is:), and I've been on the prayer list for months. I've gotten some wonderful support there from a few,but I've also been ignored by some "stalwarts" of the church - I'm talking making eye contact and looking away like they didn't see me. Makes me feel hurt and angry - and at church of all places. So I don't go all that often.
My wig is human hair, highlighted to look like my hair b4 chemo, so anyone not knowing about the cancer is surprised its a wig (happened to me yesterday). It has a vented base and I use a Velcro closing wig band so that helps with heat, but its still like going out with a hat on your head when its blazing hot & humid. I wear little colored skull caps to the gym every day and to my classes there. Everyone there knows my story and they've been AWESOME and nothing but supportive. I've never felt the least bit self conscious there and I see lots of people, some I don't know.
All you ladies facing issues are in my thoughts daily. You are all amazing and strong.
Thanks for the feedback on the acupuncture. I love it and feel I'm doing something positive and extremely relaxing for myself. I wanted to know about the little bit of pain on insertion last time because one friend who's had lots of experience with it told me there shouldn't ever be any pain if he is doing it correctly. I know he's good and he goes to China every year to see his family and train. I'll. stop worry about that. Thank you!
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Going in for my last treatment today. I'm taking my Mom along as my chemo buddy. She's been gone for ten years, passing from heart problems, after being a 25 year breast cancer survivor, having to deal with it in the days of radical mastectomies, severe lymphedema, peripheral neuropathy, and a dicey prognosis. She toughed it out, worked every day through chemo and never complained. I know she's been with me on this journey - love you, Mom.
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Sharon, absolutely beautiful picture of your momma! I agree, one tougj cookie
(((hugs)))And yes ladies, the pity looks are the worst. They make me so uncomfortable, making me feel like I have to look away or avert my eyes, or be sorry that im making "them" uncomfortable just by my mere presence
I wear my wig to work mostly, but weekends and runnjng errands I wear just hats or scarfs and I just feel embarrassed sometimes in public. I hate THE LOOK. So, I thought I was in the clear after the round 4 se's winded down, but no
on Monday my mouth sores began to appear, but this round, far worse than any previous round. Painful to talk or eat, evem drinking tiny sips caused me to wince. The magic mouthwash is great, but only lasts about 15 mins or so for releif. In between, I used orajel on the sores and it foes help, but now today, as the sores are healing, the inside of my mouth (gums and cheeks) feel like they just went 10 rounds with mike tyson, and my cheek is actually swollen on the right side (visibly swollen on the outside). Alittle bit of jaw pain too. Which completley scares the hell out of me. No fever at all (thankfully) and its not my teeth at all. Its my inner cheeks and gums were the sores and redness were ; (Called the mo this mornjng and just waiting to hear back. Im just freaked out by the swelling and alittle emotionally beaten down as I thought I was in the clear after round 4, but this is by far the worst bout of mouth sores ive experienced ; ( I did ice my mouth during infusion, but not as well as I should have I guess ; (
I won't complain any more as I know there are some experiencing far worse than me.
Hugs to all
Jen
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Sharon, absolutely beautiful picture of your momma! I agree, one tougj cookie
(((hugs)))And yes ladies, the pity looks are the worst. They make me so uncomfortable, making me feel like I have to look away or avert my eyes, or be sorry that im making "them" uncomfortable just by my mere presence
I wear my wig to work mostly, but weekends and runnjng errands I wear just hats or scarfs and I just feel embarrassed sometimes in public. I hate THE LOOK. So, I thought I was in the clear after the round 4 se's winded down, but no
on Monday my mouth sores began to appear, but this round, far worse than any previous round. Painful to talk or eat, evem drinking tiny sips caused me to wince. The magic mouthwash is great, but only lasts about 15 mins or so for releif. In between, I used orajel on the sores and it foes help, but now today, as the sores are healing, the inside of my mouth (gums and cheeks) feel like they just went 10 rounds with mike tyson, and my cheek is actually swollen on the right side (visibly swollen on the outside). Alittle bit of jaw pain too. Which completley scares the hell out of me. No fever at all (thankfully) and its not my teeth at all. Its my inner cheeks and gums were the sores and redness were ; (Called the mo this mornjng and just waiting to hear back. Im just freaked out by the swelling and alittle emotionally beaten down as I thought I was in the clear after round 4, but this is by far the worst bout of mouth sores ive experienced ; ( I did ice my mouth during infusion, but not as well as I should have I guess ; (
I won't complain any more as I know there are some experiencing far worse than me.
Hugs to all
Jen
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I am wondering what the pity looks are! Where I live no one, I mean no one, will make eye contact with me at all if I'm out and about with a hat or scarf. Makes me feel invisible. Honestly, I think pity just might be better than invisibility! I didn't get a chance to get to know many people here in OK before I was diagnosed, and I think people have just shut me out. At my daughters dance studio not one single mom would make eye contact with me, and since we were new this year, it was very lonely. One of my younger sons friends moms has been great and offers to help out, but she is the only one. It seems once my teenagers friends found out I had cancer, the parents of those kids just disappeared for me. No ride offers, no invites to get togethers, just completely ignored. It has been a strange year, as I imagined folks offering to help. I'm not sure what to make of the negativity, or rather, indifference. Is it the culture down here, or have I not reached out appropriately?
I had to laugh yesterday outside our local library. I was wearing a scarf, walking out of the library, and the woman walking in with her young children looked at me like I was caring a bloodied chain saw rather than a stack of books...then she made a point to herd her children all the way to the other side of the walkway, so her kids were having to jump over shrubbery. Did she think she and her kids would "catch" something from me? I should be more worried than her! So, clearly, this dark time of cancer treatment has been quite lonely for me. I have tons of support flowing my way from Minnesota, but I wish I'd have some friendly faces here in Oklahoma too. I'd even take pity...seriously!
SharonDe...what a beautiful photo of your mother.
Wishing you all a good day, loaded with sunshine and free of SE's
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good morning all
I've once again been catching up and noticed your comments about pity looks
Ladies I've been stared at with everything from pity to disgust to eyes of awe as long as I can remember. This was due to how I was born. They'd look at me - then my arm and shake their head.
To this day I still get looked at but I've learned not to care less. You don't like it - don't look.
Since I've been dealing with this my whole life throwing my bald head into the equation doesn't seem like too big of a deal for me
Then again I don't often go out bald due to the sun and heat. I either wear my sports caps or wig. But when we were in Niagara on the lake a few weeks ago hubby and I found a nice shady spot where we sat on a bench under some trees and I sat bald. People walked by - some did double takes. I just laughed. I couldn't care less
Next wed I go for round 4 - my first of 3 rounds of taxotere. Hoping for the best. I'm just getting over my SEs from round 3 of FEC so bring it on
Unfortunately my hubby's employer has decided to be a dick and told him that he can't accompany me to chemo anymore. My hubby felt like garbage yesterday. Like he would let me down. He would still go if I wanted him too but he has enough pressure
His employer is the owner and a "friend" of his for the last 25 years. My hubby has worked there for the last 3 as a warehouse manager. It's a smaller company and they have been very good with him over the years. They just aren't polished. He was so upset
So his cousin will go with me which should be fun. I told my hubby that I think that it's good that he gets a break. I can't imagine the emotions that he has been dealing with. He will be telling his employer that he must go to the appointments with my onc and that if I can't get anyone to go yo chemo with me he's still going
Fun stuff to have to deal with in the middle of all this!
The weather is getting so beautiful! I hope that you can all enjoy!!!!
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I have to admit I'm feeling a bit guilty after reading how you feel about avoidance. I'm the one who avoids people. I so don't want to discuss what's going on or get those looks or have gossip going around that I do everything possible to avoid people I know, who don't know about me. I drive miles away to shop in neighborhoods where I know no one, when I can shop, that is. I avoid neighbors, not making eye contact, just slipping quickly from car to house. I don't go out for walks where I might meet someone I know. I just don't
feel up to dealing with this stuff with everyone. I expect them to be shocked and feel pity. I know that's how I used to feel. It was painful to look at people I knew who were suffering like this. Before I lost my hair I bumped into a couple I know, the husband was diagnosed with brain cancer years ago. It was an awful prognosis and we all suffered along with him. When I saw them looking so fit and happy it made my day!
The universe was saying to me "See! It wasn't the end. Even the drs can be wrong. Don't give up hope."
I absolutely could not tell them what was going on with me. I knew it would ruin their day.
I just don't want to inflict this on anyone else. It's just a reminder to everyone what can be in store for them the next day or the next. Once my hair has grown back and I'm feeling a bit better it will be different, I hope.
But right now I want to protect myself from their sad looks and protect them from that sadness. But now I'm wondering if I've hurt their feelings by my avoidance?
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Footballnut, yes, it's official, your husband's boss is a total dick! So sorry u have to add this issue to others. I really think there are SO many more good people in the world who are not clueless as these clods we are dealing with.
swissmiss, So sorry that these Moms are not kind and caring people. As someone said, I think they are scared. Hang in there. Hugs to you both.
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Sharon, Your Mom is beautiful! What a lovely idea. I will bring a photo of mine with me to my last chemo 3 weeks from today. She died of bc 16 years ago.
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Swiss - girl, I wish I lived in ok, I would be knocking on your door with a box of donuts and balloons and hug you! Im sorry you're feeling isolated. The women's reaction at the library makes me sad
you would think she would want to teach her children compassion for others??! Grr. I have a few friends, good good friends, woman who were in my wedding and I in theirs!, women who held my newborn babies and ive cAlled family, ive had a few completley run in the other direction since my diagnosis. Will get the obligatory text "hi how are you feeling" every few weeks, but even after my reply, crickets. I known sick people make others uncomfortable? But it still hurts. Swiss, im sorry you are experiencing that
Timbuktu - I sometimes feel embarrassed in my own neighborhood too, now when I go for a walk or run, I try to go out 6am ish before most neighbors are out. Even though my neighbors have all been great and supportive and brinkng meals, I just feel embarrassed sometimes
ugh!!!!Football - sorry that your hubby boss won't let him go wjth you
that just sucks but happy you found a good replacement buddy! Xoxo -
Hello Ladies,
I'm trying to catch up. It's my good week, so I'm trying to do all the stuff I can't do on my bad week.
Regarding pity looks, honestly, I don't really pay attention to whether people are looking at me or not. I guess ignorance is bliss???
But that's horrible the stories here about being ignored or left out. Maybe people are scared and don't know what to say to us?Everforward-Nice picnic!
Footballnut-Congrats on being BRCA negative! That's excellent news. I'll be in the chemo chair July 2 with you, also getting Taxotere, but I will also have Cytoxan. Side effects of Taxotere include the potential issues with nails and the tongue. Try to keep ice chips in your mouth during the infusion to minimize that. Some folks ice their hands and feet too, but I haven't and so far, I only have the dark rings from the Taxotere. Sorry to hear that your husband can't go with you anymore. That's awful of your husband's employer to deny his support of you. So wrong.
Cold-I have the tight, sore leg muscles too! I thought it was only me. I can't reach my toes as easily anymore.
SharonDe-congrats on your last infusion! Yay!
Sunshine-sorry to hear about your mouth sores and swelling. I hope the doc can help you feel better.
SwissMiss-That is pretty awful about the mom who routed her kids around the bushes. Rude. Some people are just ignorant.
I have a new topic - PROTON THERAPY vs conventional photon Radiation Therapy. Anybody know much about it, or been through it, or is considering doing proton therapy? It sounds safer than the conventional radiation therapy, so I'm trying to learn more about it. I'm supposed to have radiation therapy after chemo is done.
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Sharon - hurray on your last infusion! I hope you do something wonderful to celebrate.
Swiss, I often feel the same way. I live alone in DC and my family is on the other side of the country. I have friends here, but they work, have young children, etc. I did rounds 2 & 3 on my own. In a way, it was good because I could flop on the couch when the SEs were bad and I could have a breakdown whenever I wanted without needing to put on a brave face for anyone. But spending too much time alone with myself (and the Chemo Dementors) is just not emotionally healthy. Mom arrives tomorrow to be with me for round 4 side effects (infusion was yesterday) and help celebrate my birthday on Sunday (typically a pain and ache day, so no wild celebration).
By the way, have I mentioned that the hot flashes have started. I was in a staff meeting the other day when I suddently felt on fire and I started fanning myself with my notebook like a mad woman! I now keep a regular hand fan with me wherever I go. Good times.
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My Sloan dr just called. I wanted her opinion on 6 vs 3 infusions. She said they only do 6.
There are no studies that prove it helps in early stage cancer but it does help in more advanced cancers.
But then she said"it's easier to cure cancer in the early stages and at the end of the day, if it should come back, you want to feel you did everything you could to prevent it." That sums it up.
Now I have to talk to my local onco.
I feel shaky. What she said makes perfect sense. It's exactly the way I feel. I just didn't want to hear it.
I wanted it to be over!
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All you hot flashes and runny nose fellow travelers - you can find great fans on ebay. I have bought several and really enjoy pulling them out to cool myself. I have had a handkerchief collection for years and some are duplicates or ones I couldn't use (I collect them to put out as mini tablecloths at the coffeemaker to put the cups, sugar, creamer, etc on). I have started carrying them. I also carry Kleenex for the big jobs but to blot my face and neck it is so much more pleasant to pull one of these out.
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I don't find the pity looks so much - living in South Florida with so many older folks makes us common place.
Just finishing up - 30 minutes to go and I will say goodbye to chemo. Need a week or two to recoup and we are off to Maine for the rest of the year.
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Howdy april sisters!
Sharonde - your picture is great!! I love your wigs! I am with you - as I am in a retirement area also I don't seem to get the pity looks either. I have gotten stopped twice - once in walmart, once in the grocery stores by people who simply asked "How are you doing?" and it was a genuine question. Then one asked me my first name and asked if she could pray for me. I appreciate those that care. I did have little kids laugh at me once when I accidentally went bald somewhere - but they were very young and I laughed with them.
For whatever reason none of what people I don't know think bothers me at all. I may be getting the pity looks and not even notice them. I have noticed that some "friends" seem scared to visit or call - it is like they don't know what to say. Oh well - this too shall pass.
Ughh - treatment 4 is next Tuesday - that will make me 2/3rds done with chemo - wish it was the last one. I am definitely over the chemo adventure. SE were minimal with #3 - just the usual suspects - "C", stomach/bowel distress, taste issues (longer lasting and worse this round) and twitchy eyes and general twitches all over my body lol. The worst SE and the one that hasn't really subsided much is the fatigue. I know this is most likely gonna be worse after 4 and I am not sure how much work I can do - I am mentally and physically exhausted after a couple of hours. I got fluids the friday after the last treatment and that seemed to help with the SE's on days 4-6, so I am going to schedule that for next week also. I know I am drinking plenty of fluids but if it helps then why not?
Hope you are all doing as good as possible and I wish you all minimal SEs!!
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I like that, 2/3 done next Monday. I hadn't thought of it that way. We do help each other through!
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2/3 done next Wednesday!! Woo hoo!
Wishing minimal SEs to all!!!
Love all the pics!!!!
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Timbuktu - I am sorry that you have to get six but it sounds like you knew you might need it. Your intuition is usually right. You are strong and you can do it. We will all be here for you whatever you choose!
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Thanks clarnn, I needed that! It really shook me up even though I kind of knew. She said I had a significant risk of recurrence, etc. The thought of more infusions....well, everyone here understands.
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Sharon, You look almost as fetching as the Divine Miss M! I saw a video of a concert by Bette Midler today, and it was the happiest thing I have experienced in a long time! I wanted a wig like hers and some sequined clothes to strut around in! That would go over big in rural Maine, huh?!
Safe travels to your summer abode.
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Timbuktu - I'm totally with ya. My MO told me 4 T&C was the standard recommended # of treatments for my case but she'd like me to do 6 if my body will tolerate it, because I'm high risk. My initial thought was to only do 4 to just be done quickly, but I know I should do 6 to be more likely to get it all taken care of.
But Linda put it in better terms. I'll be 2/3 done Wednesday!
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Aww, thanks, Girls, for your kind words. I often feel invisible around town, but I know I can always feel the love here
Thank you for always being here for me, all of you...I mean it! -
Haven't been back for awhile and looks like a lot of you are all wrapping up your chemo or almost finished! So happy for all of you!
I'm officially halfway done! I wanted to share a few things about my second round. if you remember, I'm the one who was terrified by the thought of nausea. I had asked my MO for a patch- the kind that they gave me for the surgery behind my ear. She told me that it was a different kind of nausea and it wouldn't work, but the first round was a disaster as far as nausea. I took so much ativan I don't even remember it. So with the second one I demanded to try, I mean really, what's the harm? Well it as was night and day difference. It was NOTHING like the first. However, some of the other side effects were worse like fatigue and the bone pain from that god awful shot. But I'm like 11 days out now and feeling pretty close to normal. I'm thankful for that. I have my third round on 7/8 and then fourth around 7/29 and then I'm done! Can't wait to get back to my life.
Question for y'all. My hair is growing back in at the moment, I'm guessing by day 14 or so it will fall out again - did that happen to anyone? It all fell out after day 14 of the first treatment.
Here are some pics....
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You're having a different T/C. I'm on Taxol and carboplatin. It's disturbing to see how much drs differ.
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ladies. I'm telling you ...you wear the Sassy Head and people don't give you pity looks. They stop and tell you how beautiful/cool/awesome you are! You have wonderful conversations and make new friends. That why I say Be bald, Be bold, Be beautiful! I designed these because I didn't want the pity looks!
Www.sassyhead.com
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Ddkath70...tomorrow is #3 of 4 for me!!! Woo hoo 75%done!!! My hair and nails are growing. I too thought my hair would fall out after my last treatment at the 14 day mark, but it didn't! I totally thought I would be bald, but, I'm not! Who knew?!?!? Hopefully, I will keep what I have and it will grow back quickly!!!
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lakegirl, good luck tomorrow! Im hoping for minimal SE's and that your hair stays strong! I'm bald, but it's growing back and I'm just wondering if it's going to fall out at that 14 day mark again.
Congrats to be 75% of the way done!!!
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ddkath, my hair started falling out 14 days after my first infusion like clockwork so I got the buzz cut. However, not all of it fell out and the stubble that stayed behind is already growing, but it's rather sparse. I had my fourth of six infusions Wednesday. My leg hair is starting to grow back in small patches.
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Footballnut - congrats on the negative BRCA test results. Sorry about your husband's silly boss.
Timbuktu - I hope you are reconciled to the additional treatments - wishing you luck with your SEs.
Dekath - most of my hair came out at 15-17 days after tx 1. I buzzed and some never came out. There's a little growth between treatments, but it would be clumpy if I hadn't buzzed - not a good look.
MameMe - thanks. I saw Bette Midler live on stage in Sydney. Best show I've seen, she's so tiny but full of life. I can't wait to rock rural Maine with my orange and blue wigs
So far, minimal SEs after last treatment, but it usually takes a few days to see any digestive or other issues.
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I'm 3 weeks post 3rd infusion and the hair does seem to be growing. What's up with that? I thought the hair follicles would be dormant until I'm done.
Just spoke to the nurse at my local onco. She said they hadn't scheduled me for infusion and scheduling is tight. I see the onco Monday and we should discuss it then. I hope there is no problem with all of this. It's kind of nerve wracking having your life in other peoples hands, no?
Hope everyone has a good weekend. I'm feeling pretty darn good, physically. A little shaky emotionally.
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Sitting in the chair just finishing up Round 5. After today just ONE more time. See you all in a few days once I emerge from the Dark Place.
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Hey friends, I totally understand the pity looks. I get them all the time and I have kind of become used to them. Well I wanted to share a cool thing that happened today. I am on vacation - (we had this planned long before Cancer came knocking.) My last chemo was last week so we went ahead with our plans. Well today we went to the Statue of Liberty and there was a LONG line ln the sun. The security guard came up to me and said "Ma'am you should not have to stand in this line. Come with me." We followed him straight through to get on the ferry. He said goodbye by saying "You keep up the fight OK?" That really cheered me up.
I hope the rest of you start feeling better from your SE's. 10 days PFC and I am exhausted but it is good to get away and be Nana.
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Beautiful Nana!
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Put that one in the books 75%DONE!!! 1 more to go!!!
I talked with the RN at the cancer center. In her experience, if the hair hasn't fallen out yet, she didn't think it would!!! I did buzz mine pretty short, but it is growing!!! Hopefully, this will hang on and it will just have to fill in!!! Also, hoping eyelashes and eyebrows don't fall out!!!
Here is to minimal SE's ....hope everyone has a good weekend!!!
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awesome Nana!! Nice to hear you're having a great time and there're good people out there. Enjoy!
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Dear C in C, your photo is adorable, and we will definitely be here when you dive into the tough places, AND when you come out.
Nana, What a nice change of pace, being on vacation and being done w the tx's. Here's to clear sailing for you. Nice gesture from the guy at the statue.
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Keep the Lights on, Cold !!!! We are cheering for you.
Great story, Nana. And, good for you, hanging in there for your vacation. Feel good and have a good time.
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Cold, you got this. I just came out of my dark place, and feeling better knowing I only have 1 more tx to go. We're here for you.
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Nana - amazing story! So happy to see you on vacation and enjoying your beautiful fam
Cold - praying you come out of the dark place quickly
All the other amazing strong courageous chemo sisters - love you all. Cant believe we are all slowly approaching the ends of our chemos. When we all began posting here, it seemed like such a huge mountain to climb. Now ladies, we are so close!! I have round 5 (out of 6) on Thursday.... nervous, but ready.
My mouth sores arw slowly, slowly healing. Able to take baby bites of food now. The magic mouthwash has been a blessing and my facial swelling is Down a bit this morning. The mouth sores are by far the worst se for me. The past few rounds they were more mamanageable, but this round was.aweful ; ( really makes you feel down in the dumps when you can't talk or eat without wincing in pain. Grrrr
Anyway, love you all :-) stay strong ladies!
Jen
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Hi all,
SwissMiss-sorry you are feeling invisible. That sucks. I want you to know that we are all here for you!
SharonD-love the sexy wig!
Cold-so glad you are almost done! I hope you don't stay in the dark place too long.
Nana-what a great story! I love it when people are thoughtful!
I am on day three after infusion. Always a yucky day. I feel like I'm coming down with the flu, but I know it will pass. I'm just sick of not being able to do anything on the weekend. Only nine more infusions. Sigh.
On a happy note, our middle daughter had her baby yesturday. We have another granddaughter! So our total now is seven GD's and five GS's. Our family is so blessed!
Wishing you all minimal SE's. Hugs, lilyrose
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Well, I was going to do my 12th and last Taxol this last Thursday. My white blood count was too low(700). I ask my doc if I needed to come back at the same time next week or keep the same appointment. He said to keep it and that we are going to start A/C next week. He said it's not going to make a difference if we skip the last Taxol. I hope he's right. I'm a bit nervous. The Taxol/Carboplatin worked so well. I'm worried the A/C won't do anything. Oh well, one more drug off the list!! Wish me luck! I hear the red demon is harsh.
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Hi Coop, Hang in there, you are heading into quite a ride! Its so important to nail this beast and with TN, even more so. Keep us posted.
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Five days after round 4 and I'm poking my head out from the bad place to check in. I hope those of you in the bad place with me will see your SEs fade soon. This time I didn't do the Neulasta shot. So I had virtually no bone pain and the muscle ache, while tough, seemed not to last as long. Now I'm entering the funny tummy portion of the program. Taking the day off from work today in anticipation of ongoing fatigue. I feel fine one minute, then need to flop on the couch the next.
Trying to remember that I am a warrior. Just not today.
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good morning!
Hubby and I went to Barrie Ontario over the weekend to see races at Barrie speedway. Very cool! There was a cancer car there. I spoke with the driver - he was very cool!! The weather was beautiful - so nice to be outside!
Last week was a great week for me - my SEs seemed to be over and here we are on Monday - time to get my bloodwork and see my onc. I usually do this on tues but since tomorrow is canada day they pushed me back to today
The SEs with my last round of FEC were the worst. Dry mouth, the roof of my mouth felt like sandpaper, food tasted like cardboard and all of my tummy troubles for the first 8-10 days.
I am just dreading starting taxotere this wed. A friend of mine told me that a year later she still has trouble with energy and feels tired! Others have breezed through it. I think that herceptin will be started as well. I was told by others that herceptin was nothing with no SEs
I'll be talking with my mo about all of this today then get prepared for returning to the chair this wed at 9. My hubby's cousin will be with me on wed. It will feel strange not having my hubby there. 😒
I hope that I'll be able to continue my exercises!!! I know that this sounds stupid but I am very concerned about gaining weight. I've been trying to knock off a few pounds in prep for this
I hope that everyone has a great day!!
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Hey everforward - hope your dark place is brightening. How is your RBC count holding up? Mine seems to stair step down with every treatment. My #4 is tomorrow. So not looking forward to the SE after this round. SE weren't real bad after 3 but the fatigue is getting really bad. I just have not energy and the days that I do it is short lived - can function for a few hours then I am just exhausted.
Welcome back Footballnut - sounds like you had a good time!! I haven't gained any weight on TCH - I weight basically the same as when I started chemo. The energy thing is my longest lasting SE but I am sure that is caused by the RBC counts which should rebound after chemo is done and I am not sure which is the culprit - the carboplatin or the taxotere or both. I really don't think you should worry too much about the taxotere and you are only getting it a short time right?
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Checking in to say hi and wish everyone well. Sounds like a number of us are going through the same stuff again. Glad you made it to the races, footballnut - looks like fun.
I am on Day 5 after my last treatment. Yesterday was the worst with aches and pains, but I just kept telling myself it is the chemo working. And, of course, the fatigue is such a joy.
Even though I am DONE with chemo, not really celebrating til I get past the next couple of weeks. I'm too tired to cheer
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well just when I was starting to relax I've freaked myself out again by reading the internet
I've had a black line running down the nail of my index finger since last fall. It hasn't changed.
I had mentioned it to my family dr last year and she wasn't concerned. I also mentioned it to my onc during my last visit and he wasn't concerned either
This morning I researched dr google and found subungal melanoma. Some of the images that I found look nothing like my nail but done do. It seems strange to me that this line and my lump appeared very close to each other
So now I'm freaking out. I'll mention it to my onc again today. Hopefully he can relax me - again!!!!
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Been off for several days as I had my wedding! Such a wonderful celebration AND I came away with a major beauty tip!
My white hair was still sparse on the top of my head, the girl who came to do my makeup brought an aerosol can of dry shampoo. She sprayed it in my hair and it remained as a white powder and filled in my hair!!! If you have white hair, this will work for you too! This shows a before and after
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Congratulations! you look beautiful and so happy!
I just got back from infusion #4. The dr tried to talk me out of it. They only give 3, I'm still not sure why, except that chemo does beat up your body and this is my second time around.
The surprise...I tested positive for Lynch Syndrome. The test was not definitive and I need follow up.
Lynch syndrome is a genetic disorder that increases the chance of of many cancers. It was the dr at Anderson who told me I needed the test, no one else. Having had both breast and endometrial cancer, it was good advice to get tested. The worst part...my kids have a 50/50 chance of having it too.
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Timbuktu - I learn so much on this website! Sorry about your positive test. Worrying about our kids is one of the harder things about this disease.
jbokland - Beautiful and looks like a perfect day weatherwise too.
It was so slow on this site this weekend I checked my internet connection twice. I am either glad that everyone was out having a good time or sad that everyone was suffering SE's. Hope it was the first.
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Love the pics jbokland!! I had my last fill with my PS today - one phase done! I wore my head bling today that I got from jbokland at sassyhead.com. The girls at the PS's office took pics and wrote down the website. My PS was fascinated and asked if he could touch it LOL - gotta love him. Anyway here I am before I went to his office this morning and just got home from going out to dinner and this is all I wore on my head - it was very liberating!!!
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Wow ladies the pics on here are beautiful and sassy I really like the Bling!
I haven't visited here for a while. Last week I had my TE's removed and my implants put in. All in all a very uneventful experience. The surgery was nothing like the BMX and TE's. Any way it looks like the group here is progressing well through the chemo. Congrats to those who have finished! The SE's really do take longer to go away with each time. Tomorrow it will be four weeks since my last one and I think things are finally beginning to turn around for me. The fatigue is lingering but the neuropathy is soooo much better. I can walk without a cane and my muscles in my legs ache less each day.
I do have a question - The MO has me starting Tamoxifen in two weeks. Since I am ER+/PR+ I understand this is the norm. After my surgery I began to read up on Tamoxifen and now I am worried. Gotta love the internet (right Footballnut?) So, apparently the FDA says the risks of developing Endometrial or Uterine cancer is outweighed by the benefit of recurrence by using Tamoxifen and that Tamoxifen is a known Carcinogen. I still have my uterus, and if I take Tamoxifen I am 10 times more likely to develop cancer in my endometrium or uterus. I had a BMX (elective), chemo (elective), zero nodes involved, I was Stage 1b, after my BMX pathologists found DCIS in my right breast tissue. My IDC in my left breast was .8 mm, tumor grade was 3. I am adopted so I have no family history to go off of. My BRCA was negative. So I guess my question for you ladies is - If you were in my shoes would you take the Tamoxifen?
Oh and today was my last day for medical insurance coverage. I am going to join a Tamoxifen board on here, but we ladies have been through so much together already I really would like opinions from my sisters here!
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Hi mikishelley - that is a tough one - my MO has told me the two most important things that I am or will be doing after the BMX is taking the herceptin for the HER2+ and going on an AI for the ER/PR+ part of my cancers - all preventative. I will most likely end up on one of the others as I am post menopausal but still have all my parts, but the tamoxifen has an advantage over the other choices in that it helps to build bone strength, where the others will cause the opposite effect. I haven't talked to my MO on what he will be suggesting I take yet but I have thought about asking him if I could take Tamoxifen for awhile to build the bone and then switch to one of the others. I know there is a way for premenopausal women to do one of the other drugs and you may find that info in the other threads. So many hard choices that we have to make!! Just isn't fair that we have to do such dangerous things to ourselves to treat this horrible disease.
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I totally agree Linda. I can't grasp the idea of increasing my chances of getting another type of cancer by ten times just to try to prevent recurrence of my breast cancer that the docs say was caught so early I have nothing to worry about, so why should I take the Tamoxifen? I think the only reason I am classified as high risk is because I am adopted and have no family history. Arghhhhh!
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Mikishelley, did you have the oncotype dx test done? Knowing your score might help with your decision. If you have a high score the benefits of tamoxifen may outweigh the risks.
Curious, what data source did you use to find all that scary stuff about increasing risk 10x of other cancers? I will start tamoxifen this fall after I finish taxol. Which happens to start tomorrow.
I have to say, I am a bit nervous. I did pretty well on AC and it seems that those who do well on one struggle with the other. We shall see!
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Linda
Love the Sassy Head photo! Warms my heart and glad to know it was an uplifting experience for you. It's fun isn't it??
Thanks again!!
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anyone else who is on taxol started to lose any fuzz that was growing during AC ?? I seem to have lost about 1/2 the hair that had grown back.
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mmtagirl - Google FDA Tamoxifen carcinogen. The FDA admits that Tamoxifen is a carcinogen but the benefits outweigh the risk of developing the other cancers. My Oncotype was low-mid range. I can't remember off hand maybe 26, but my chemo was not necessary based on my oncotype I elected to have it. Here is where my concern lies. How can I elect to have chemo but need to take Tamoxifen. So confused.
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Haven't checked in for a while - want to say big congrats to all of you who have finished! I will be in chemo heck for the long haul thanks to my her2 status and the one positive node. There is disagreement between myself and my surgeon and MO about rads - the node was intramammary and the axilla clear. They say no rads and I am concerned. Of course, there is absolutely no research on this since intramammary nodes are only present in about 4%. Yay me! I will consult with RO at my center and an outside one.
Morale-wise, knowing I have 9 more weeks to go is really chipping away at my resolve. The uncertainty about treatment decisions is making it worse.Jamieh - my stubble is about the same 3 treatments in, but the eyelashes have thinned out soooo much. I hate that more than losing the hair on my head.
We all have long roads ahead of us - wishing all of us the very best outcomes. We deserve it.
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Cold, I'm right there with ya getting #5 of 6 today. First I have a followup appointment with my surgeon. Seriously, while undergoing chemo I haven't given much thought to my incision scars at all. As you all know, it's difficult to take the focus off the chemo.
Nana, that's awesome that you got royal treatment here in NY. New Yorkers sometimes get a bad rap but they're really just in a hurry all the time, not rude like some will have you believe. Today you have a hot one here for sure so stay hydrated!
Sharon, I'm excited for you! Yippee!!!
Hope everyone is feeling well today! Will check back after my infusion. xo
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Taxol #1 is done! Count down to September 16 for #12. So far so good. The Benadryl knocked me out for a nap and I am sure the decadron will kick in and keep me up all night.
Mscaruso, I can relate to the morale issues knowing how many treatments are ahead. I was/am fatigued thinking about every week infusions and how they cut into my summer that will never be. But, on the flip side, these treatments will hopefully allow us to have many more. We will get through this!
Hugs to us all! Watching the World Cup. Go USA!
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Feeling a bit blue here too. Not sure why, just need a great date out with hubby maybe! And a bit sad that I can't walk to the normal Canada Day celebrations or fireworks
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Treatment #4 in the books - two more to go. MO reduced my taxotere since my liver enzymes are still going up. I told him that if they continue to rise after this reduction that we may call it quits after this one - he says he agrees to an extent as he feels that the most important things I can do is the surgery, which I have done, and the herceptin. He also is skipping the neulasta shot this go around as my WBC's got very high with the last one and really didn't ever come down to normal so he isn't sure I need it - he said if I start to go low that he will give me a few neupogen shots. Here I am at tx 4 - wishing you all lots of SE free days!!
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Here I sit freaking. I've had a black line down the nail of my index finger for 6+ months before I was diagnosed. My family dr and onc have told me that it's nothing. Well yesterday I searched dr google and found subungal melanoma. It's a type of skin cancer that is a rare form of skin cancer - less than 1% of people diagnosed with melanoma get this and it is mostly found in dark skinned people and is most common on the thumb or big toe
So when I met with my onc yesterday I told him that I was surfing dr google and right away he said that it's not subungal melanoma. He doesn't think that it's anything to worry about but because I told him that I was freaking out he sent a picture of my nail to a dermatologist. Can't wait for that appt
Now that I have come to terms with the bc I'm panicked about this. In my heart I am of the opinion that it's nothing but I'm back to the "what if". A good friend of mine died of a rare form of skin cancer last year
Stressed all over again!!
Tomorrow at 9 am back in the chair for round 4 - first round of taxotere
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just hopping in ...
Glad to read all of the positive things going on. Am thinking of those of you with negatives and sending positive thoughts and wishes.
Taxol #2 today ... Unfortunately had a bit of a reaction in the first 15 minutes. Hot flushes, trouble breathing, chest felt like it was in a vise. Nurses literally jumped into action ... As soon as I said I wasn't feeling right, 3 of them were there in an instant. Drew the curtain around the chair, stopped the Taxol, had blood pressure going, grabbed another drug .. Not sure what it is even though they told me twice :-)
I am allergic to Benadryl so can't have that. They also gave me more of the other anti histamine they are giving me in my IV. I also thought I was going to throw up, so was given a basin, but ended up not needing it. Was then given Ativan to calm me down and it also helps with nausea.
Was back to normal withing 10-15 minutes but am going to admit, I found that to be scarey!
Taxol was restarted with no effects. Ativan knocked me out, so I slept through it :-).
Next treatment will be given the other drug up front. Need to find out what it is ... Starts with a Z or X
Herceptin finished the day. I had driven myself to the the treatment, but called hubby to pick me up as still felt foggy in my head. Will get my car when he drives me back for the Neulasta shot tomorrow.
Blood work was mostly good. Hemoglobin starting its descent again, but still 9.5. Platelets are now the concern. Got the treatment today even though they were quite low, but if they keep dropping might have to postpone next treatment. ARGGHH, just want this DONE! Supposed to be finished on July 29!
Came home and went straight to bed and slept so soundly. Didn't have a clue what time of day it was or even WHICH day it was when hubby woke me up for dinner! Still feel that way a bit - had been enjoying a much clearer head on the Taxol up until today .... This evening my head feels as fuzzy as it did on the Adriamycin
Here is hoping for minimal side effects for everyone. We WILL get through this even though it doesn't feel like it will ever end sometimes! :-)
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MakeLemonade- How scary! Sounds like the nurses are prepared for this contingency and know exactly how to handle it but you must have felt very vulnerable.
Perhaps the fatigue was from the Ativan and not the Taxol.
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The chemo brain continues! So just as I am crawling into bed I realize that I didn't fill my prescription for my Dexamethasone pre meds! I am supposed to take 10mgs 12 and 6 hours prior to chemo. Already 3 hours late for the first dose and now sitting in emergency by the sick people because this is the only place to get it at this hour. Grr.... And on the holiday so ER is busy with traumas. How could I be so forgetful? And such a mismanagement of health care dollars! I can't believe I did this!!!
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Clarn - We come first now. Having to sit in the ER is bad enough. Don't beat yourself up and good luck in the chair.
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Footballnut, I know it is hard,but, take a deep breathe and try to keep comfort in your onc believing it is not melanoma. I am glad he scheduled the appointment for you to be sure. Sign of a good one!
Make lemonade, I had taxol #1 yesterday. Sorry to hear your second treatment was so scary. I would have freaked a bit, too! I came home and slept from the Benadryl. Tossed all night, though, with the residual decadron. Work should be fun today, ughhhh. Waiting to see if my taste buds will change like Taxotere. I didn't have the problem on adriamycin. Stomach kind of weird but no nausea
Clarrn, don't beat yourself up. So easy to be forgetful living the life we have right now. I found it interesting, again, hoe different doctors are. I didn't take the steroid for AC until the day of treatment in my IV and then 3 days following. Only did it for the Taxotere I had for one round.
Anyone getting neupogen with taxol? I will be getting that shot with each weekly treatment since my WBC and ANC don't seem to be bouncing back. Was still very low yesterday after my last AC three weeks ago.
Hope you Canadian girls had a great canada day!
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As if chemo wasn't bad enough, this other crap on top of it is just so unfair. Hugs to those if you dealing with so much. I'm picturing a time in the future when all of us are finished with chemo and we've gathered together at a fancy hotel somewhere for a big group hug.
Football, I hope it turns out to be nothing.
Swiss, I haven't seen you lately. How are you holding up?
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Posting from the chair this morning
Everything is going well, but I pray SE's are mild this time around. The 4th of July and my 18th wedding anniversary coincide with my usual "dark place," so crossing my fingers!I've read all your posts, ladies, and I'm praying for all of you. I'm especially happy for those finishing up chemo...but admit I'm a teensy weensy bit jealous too
I have one more chemo after today!Everforward...thank you so much for thinking of me. Like I've said before...I always feel the love here
What I am truly grateful for today: moisture wicking pj's and the ceiling fan (on top speed sounding like a propeller!) above my bed. These night (and day) sweats are taking over! Last night was worse because of the pre-chemo steroids, but every night I am literally soaking wet. Yuck! Besides the muscle/bones aches, this is the most severe SE I've had since starting Taxol. Heading to Walmart later to get more moisture wicking tops, as they are awesome...chemo brain has made it impossible to remember who recommended these, but I sincerely thank you
I'm getting sleepy...closing for now. Thanks to all for all the support. I'm so much stronger with you girls!
xoxo
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Just saying good morning. There is so much going on, it's not possible for my befuddled brain to reach out to individuals, but know I'm thinking of you all.
Still crazy fatigued one week after tx. Hoping to get some energy soon!
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Befuddled brain is right! I got a call this morning from the hospital about needing my records. I could not tell them why. I knew I asked for them. I told the nurse that my chemo brain is unable to explain. She figured it out for me. What a way to live!
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Hi y'all! I'm getting my Taxotere as I type and chomping on my ice chip to keep the white tongue/mouth away. This is 4 of 6, so I will be 2/3 done today!!! After chemo, I'm getting an ultrasound to look at a hard lump under my armpit. Hopefully, it's just scar tissue from removal of my lymph nodes and not anything worse! Good luck to everyone on their treatments and managing those SEs.
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well day one after treatment 4 - and didn't go to work today - just very tired and feeling icky - I usually feel ok on the first day but not today and has made me weepy - but this is my last steriod day and they seem to make me weepy too. ughhhh - I really hate all this.
swissmiss - I was the one about the wicking tops from walmart - they are life savers!! specialK is who told me about them from my triple positive group. Again - anyone who gets intense night sweats that wake you up and make you freeze please go to walmart and look for the wicking Danskins tops and shorts. They move the moisture away from your body to the outside of the top where it evaporates so you never feel wet and cold. Hope you have minimal SE's and can enjoy the 4th!
Hope everyone else is doing as good as can be - all we can do is put one foot in front of the other each day and keep each other in our thoughts and prayers! I am so glad I found this site - I would be so lost if I hadn't.
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Has anyone here been pressured to get only 3 or 4 treatments? I had to twist my onco's arm to give me number 4.
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No Timbuktu - not me - which regime are you on? And do I remember that you have previously had chemo for another type of cancer or is this a recurrence?
I am contemplating only doing the 4 I have done as my liver enzymes keep going up up up and that scares me - my oncologist will abide with my decision but would prefer I do all six though.
Are you also going to be doing rads?
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Linda - Sorry to hear you're not feeling well today. Hang in there.
Timbuktu- My MO is the opposite. She's recommending 6 but says I can stop at 4.
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Taxol # 5 done! Exhausted from my late night adventure
Hot weather today! Hope you are all doing well, and have minimal SE's. -
Hello fellow warriors. Had my 5th infusion yesterday. All went well. Blood counts all still good, and no unusual issues. I was supposed to see my surgeon for a post-op appt prior to my chemo, but she got sidetracked and even though my appt was two hours prior to chemo, I had to leave to get there so I'll have to reschedule with her. I slept well but the most annoying SE on the night of chemo both last night and after the last infusion is the sweating. Crazy. I'm not going to complain though, at least I slept well and was able to get to work today. Neulasta shot followed by Neulasta Date with hubby afterwards. That's the only part of this ride I'll miss. Maybe we will continue our Wed. evening dates every third week even after it's overwith, lol. We usually go to our local diner which has fabulous food, because thanks to Chemo my tastes can range to anything from salad to steak, lol. Hope everyone is having a great day. Linda, you look fabulous! Football, haven't you ever seen that meme about not googling symptoms because no matter what you'll find something that says you'll be dead in a few months!!! Don't do it anymore!!! The chemo might be making your nail look even funkier than usual, so that might be why your attention is drawn to it. I lost 4 toenails after that hike I did back in May... Lemonade, I'm glad you're okay! Nurses are the best!
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thanks for that article Longisland - glad she is finally saying that the treatments weren't a piece of cake - she made it seem like getting chemo was no biggie when she was on TV which I think hurt women that are going through this as it makes us look like wimps LOL. I just wish that when people with public voices get struck with something like this that they use that opportunity to really tell it like it is - don't sugar coat it - be real like we are here.
Now we have Joan Lunden who has come out with the fact that she has bc and is getting chemo. She says she has the aggressive kind but she never says what kind, stage etc nor what kind of chemo. I know these things are personal but if I had a opportunity I would be telling it all - the good the bad and the ugly.
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Great picture MommyQ!!
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I had breast cancer 3 years ago and had CMF. In Dec I was diagnosed with uterine cancer. At first, at Sloan, they said no chemo was necessary. The I went to my local (chicago) onco and she said I needed chemo! Grade 3 with lymph invasion! I went back to sloan to see onco and she agreed, said I needed 6 infusions of Taxol and Carboplatin. Went to MD Anderson. She said no chemo at all! Went back to local onco and she said she'd do chemo. Now she wants to stop at 3! No reason, that's just their protocol.
I called Sloan dr. she said they ALWAYS do 6. It's easier to cure in early stages. I have significant risk of recurrence. etc. I told local dr this and she was skeptical. Grudingly told me she would do fourth.
Now Anderson says I have Lynch syndrome. This is day 2 so I'm kind of foggy but I have a lot of anxiety now about what to do.
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Timbuktu - you have already been through so much, and I can imagine your frustration with having so many opinions thrown at you - especially since you are seeing the docs in the best places. Hope you get a resolution soon.
Linda - I did read earlier this week that Joan Lunden has said she is triple negative. There was an interview with Dr. Gupta.
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Anyone else just nauseated by the thought of drinking liquids? Except milk I seem to be able to drink it. I am trying just eating ice chips. I am just tired and fuzzy which I hate! Ok enough whining!
Hope everyone else is doing better. This is day 7 after round 2 AC.
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Ok...just need to vent. Our house has two separate central air conditioning units, with the smaller one intended to specifically cool our master bedroom suite. And, which one has broken down FOUR times since last summer? Yes, the one that was supposed to assist me in dealing with my darn night sweats! And don't forget, I live in Tulsa, which is a hot place to be in the summertime. While the rest of the house is livable, my bedroom is currently reading 81 degrees, and will likely get hotter as this sunshiny day progresses.
On a more positive note, my DD Taxol infusion went well. I was home by 11:30 and ate lunch with my kiddos
Anyone struggling with a cough? I've seen a family doctor, who ordered a chest X-ray (clear) and a breathing test at the pulmonary lab (also normal), so thinking this must be a chemo thing. It's a dry cough, and it's constant...I'm driving my family nuts! My MO thinks it's not the Taxol, and the cough started while I was still on AC. I'm using prescription cough medicine (tussionex) twice a day, but it makes me sleepy, so daytime use is often inconvenient. Plus, I hate taking medicine! Wondered if anyone here is experiencing this?
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hi all!
Round 4 over and done. First of 3 started with herceptin for 90 min, then Benadryl and another antihistamine then taxotere for an hour. The ice packs nearly froze my fingers and toes off!! Lol. So far I'm just tired
Came home and had a salami sandwich. Lol
Now I wait for the appt with a dermatologist.
I know - don't go to dr google!!!! Atleast the nail hasn't changed in 6+ months.
I hope that all are well!!
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Does anyone mind a new person joining the thread? I know you all have been together for awhile now. And to be honest I didn't start chemo until May.
Just let me know and I will start a new thread if you prefer.I am having chemo before surgery since my tumor is big and near the chest wall. I also have at least one positive node as that is how I found my bc in the first place (lump in armpit). I have had 4 rounds of A\C and start 12 weekly Taxols next week.
swissmiss, I also have had a nagging cough! It may be a chemo thing as I overheard a woman getting chemo next to me complain about hers too.
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lena-lou. It's always good to have new input. The cough thing in Swissmiss's post is just one example of how important information sharing is. So, Welcome.
Swissmiss - Perhaps you are dealing with post-nasal drip. I have read that we lose nose hairs as a part of the hair loss side effects. Numerous have complained of a dripping nose and having to constantly dab with a tissue. To my mind it wouldn't be a huge leap to having the mucus drip at the back of the throat. It may be a response by the parasympathetic nervous system or one of those other nervous systems.
I use a neti pot when I have a cold and I rarely get a runny nose or nasal congestion. Might be worth a try. If you do it is important to use distilled or boiled and cooled water. I have two pots and clean one in dishwasher each day. (I should have more so I wouldn't have to remember so much.)
Day #8 in the chair DONE! Now on to the week's cycle. Wading into the abyss. CHARGE!
Footballnut- You look so cute with your ice packs on. If some had told you that frozen peas would be important in your life would you have believed it?
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Hi Lena-lou! Welcome! I finished my 4 rounds of DD A/C and today had my 4th of 12 Taxol. I'm pretty sick of it, but I just keep reminding myself I need to do this. I had a cough after my surgery and during the first few weeks of chemo. My PCP put me on a prescription cough med that cleared it up.
Linda505 - Joan Lunden has triple negative. I was a little surprised she revealed that, but pleased she put a name on her BC. I have TN and it is very aggressive and not much ever said about it. Only about 10-20% are diagnosed with it. We have no targeted therapy. Hence the need for chemo. I wish her all the best.
Football - you look great! Please TRY not to worry yourself about your nail. I am praying for a good outcome with the dermatologist! Hang in there!
Heading off to my lazy boy for a nap. Had my 4th Taxol today...only 8 more to go.
Hugs to all, lilyrose
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Lena Lou
You and I have similar DX, Although mine was larger. I had surgery 1st. I know your glad to have the Red Devil behind you! Taxol should be easier.
Welcome!
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Felt a little woozy walking out of the infusion center today, but got some lunch with the hubby at Sonic, sitting out in the beautiful sunny 75 degree day, and felt better. Went for my ultrasound for the lump under my armpit after lunch, and found out that it was just fluid...a seroma. Whew. It's small, so we're just going to leave it alone. It's right up next to my TE, so it'd be risky to try to take a needle to drain it.
Went out for dinner with the hubby and kids at a great Vietnamese place and the Pho tasted great. That means my taste buds haven't gone all funky this time yet. My head is sweating and I'm alternating between being hot and cold. Hot flashes, I guess!
LongIsland: Thanks for posting that article. I think it's great how celebrities are sharing their stories. It raises awareness for people to be more proactive in managing their health. I made the mistake of thinking I was too young to have cancer and ignored a small lump a year ago, which got bigger this year and well...here I am.
Linda: Thanks for the compliment on my photo! I didn't know Joan Lunden has BC. Seems more and more celebrities are going public with their diagnoses. I guess it's become more publicly acceptable.
Timbuktu: Good luck figuring out what to do. It's good you have the best docs helping you.
Mompv: Drinking is important and I also find that it's hard to drink as much as the docs want you to! Have you tried Gatorade? That seems easiest for me to drink. Or lemonade or tea. I get so tired of plain water.
Swissmiss: Sorry to hear of your air conditioning and cough woes. Glad your Taxol went well.
Footballnut: Hope your nail thing is no big deal. After your post, I looked at my nails and I also have a vertical line on both thumbs and one index finger, although mine are fairly new since this last infusion, so they're probably chemo induced. I'm interested to hear what you find out.
Lena-Lou: Welcome to the board!
jbokland: Congrats on your wedding! Y'all look beautiful and happy!
Well, it's late and I should get to sleep. Have a good night everyone!
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Hi all...I have the cough thing too. When I mentioned it to MO, he said it was from irritation to the esophogus from the chemo. The lining is irritated so your body wants to sooth it by creating more "stuff"...therefore the cough. I know, I am driving my family crazy too. It also gives me this crazy effect to my voice making it horse and gravely, I sound like I have smoked for 25 years, which i have NOT!!!
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I had the cough too, for 8 weeks! Glad to say after Taxol started it decreased and went away! About the same time my counts went up
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Hello ladies. Yes, that article with (Ha! I can't remember her name!) ANYWAY, I thought it was a good article. Linda, I think unfortunately we all try and poo poo what we're going through so as to appear strong, but I agree that someone in the public eye should speak more truthfully about symptoms, etc. Maybe she was afraid of being told to stay home, because she did say how important continuing to go to work was for her psyche. The most important thing I came away with was that she vows to advocate for women facing this horrendous disease, specifically those who cannot necessarily afford treatment.
I do not have a cough, however I am a bit scratchy at times. Perhaps trying Zyrtec or Claritan might offer some relief. I do take that for seasonal allergies anyway, and my hubby was instructed to take it when he had a cold/cough.
Lena lou - I joined the March page just to keep tabs on what I could expect as I went through my April treatments. This April thread will be a great resource for you, and everyone here is awesome! Welcome!
Timbuktu - I am so sorry to hear about the contradictory BS you're dealing with. I wonder if maybe two of these doctors can conference and come up with an agreeable plan for you? Maybe the two you're most comfortable with? Just a thought...
Day two after treatment and hanging in there. Made it in to work, although awake since 3:15am, so it will probably be an early dismiss for me.
In case my dark place gets too dark to post from, want to wish all you beautiful women a very happy fourth of july weekend! I for one will be staying home in my dark place and comforting my little bichon Jack who is deathly afraid of thunder and fireworks... both of which are in town this weekend.
XOXOXO
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I agree the article was good about how she dealt with her BC treatment and why work was important to her. And I applaud her for now telling like it was and reaching out to help others. Believe me I have no ill feeling for ANYONE with this horrible disease and we all do what we need to do to get through it. My only concern is that alot of people saw her on TV all the time looking "normal" acting "normal" not talking about the difficulty of all of this and few will read the article. To me this makes it difficult on all us that are trying to maintain a normal life but needing understanding from our employers, family and friends that everything is not "normal" and often we don't feel good and sometimes we can't work, clean, cook, or even stay awake. I try to stay positive on my FB posts but I also tell it like it is - as we do in here. I want people who haven't experienced this to understand what a journey this is and I only have 1900 friends on facebook LOL (long story on how I ended up with that many friends) so that is all I can reach - but she and other public personalities have the ability to reach out to millions to let people know what a journey this is and just how difficult it can get. That is my only complaint - I wish that someone that has that kind of following would just put it all out there. The ups and the downs - the great things we learn about compassion and friends and family, the deep recesses of our souls where we find courage and strength, the days that all we can do is put one foot in front of the other and hope not to fall, the fact that sometimes everything tastes like cardboard or metal or plastic, and the days that all we can do is try not to cry and can't get off the couch. It doesn't have to be all about the negatives - it can be a good mix - just like our journey is. btw - I did send Joan Lundin a message through her blog and asked her to please look at this forum and see what she can gleam from it that she might pass on with her public voice.
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#5 today for me. I'm all caught up on the thread but kinda nauseated and experiencing a lot of muscle pain so making it brief. Hope everyone is hanging in there. Happy Fourth of July to my American friends. I hope my fellow Canucks had a fab Canada Day.
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hi all!
Here I sit waiting for my home care nurse to appear to give me my neulasta shot. Since my infusion yesterday I've developed abdominal pains and I'm getting a funny taste in my mouth. But I pooped today!! Lol
Went on treadmill for 40 minutes and did some arm weights
Can't help being nervous about my nail although my gut says that it's nothing serious. Sometimes I feel like I'm cursing myself if I think positive. Stupid I know
My mother told me the other day that she had a black line on her nail for approx 2 years many years ago. Her dr wanted her to get it checked out for possible cancer but she never did. It just disappeared and she's still here at 91
Can't wait to see the dermatologist but suspect that this will be many weeks away if not more. Oh well. I'll keep everyone posted
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Footballnut!
Celebrate all things!! even the poops!
I coughed my guts out for weeks, not to mention peeing my pants! LOL glad that is over!
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golfing girl- You look "mah-vah-lous!"
Keep smiling.
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Hello April Sisters!
Whew! When my MO told me the fatigue would continue to get worse with each infusion he was NOT JOKING. After Round 5 (only ONE more to go! YAY!) on Friday, I SLEPT THROUGH Monday and Tuesday, AND part of Wednesday (yesterday). And Saturday and Sunday are kind of...foggy. So is today, actually, so if what I'm posting doesn't make sense, you all know why.
In terms of the other SEs, with the exception of the nausea, which is GONE (another YAY!), they were all THERE, but really muted this time around. They all set in earlier though. Like, Friday night my tongue was tingling. And by Saturday I had the whole burnt tongue/throat thing going on, as well as numbness and tingling in my fingers and toes. And The Big C (which has already turned into The Big D). But these things are all LESS than last time. Even the bone/muscle pain is so much LESS. If it wasn't for the MIND-NUMBING fatigue, I really wouldn't feel all that bad. The Dark Place? Not so ugly and not so mean this time. It's like those Dementors have realized they have no hold on me - they can NOT bring me down. I gave them all a nasty RIGHT HOOK and said "LET ME SLEEP", and they did. And now I feel better. SLEEPY, but better.
A new side effect (because I didn't even KNOW it could be normal - WHY don't they TELL us these things, right?): My tongue is turning black. Or maybe a dark grey. Definitely in the charcoal hue anyway. It's pretty gross, though my children think it's cool and asked me to look up WHY chemo can do that. So I did. Apparently it has to do with swollen and irritated taste buds and bacteria. Blech.
I am LOVING the Chemo Lounge photos - you ladies are all so beautiful. And the SMILES. You all take my breath away.
footballnut - I have said this before and I'll say it again: Dr. Google is a LIAR. You can't believe most of what that guy says. Really. He gets a huge laugh out of scaring the pants off a person. So don't give him any more power over you. P.S. You look adorable with the ice packs on.
MommyQ - GREAT news about the lump!
So glad it's just a pesky seroma!lena-lou - Welcome! I hope you'll find lots of support here.
Mompv - Fluids - I froze juice into cubes and then blended them with regular ice cubes to make a sort of flavoured ice drink. It's actually pretty refreshing and nice change from plain water (which tastes like SLIME right now - ew).
I'm pretty sure there was more I wanted to say, but POOF! Its gone. Darn Chemo Brain.
And now, I'm off to enjoy an afternoon in the sun with my babies. Hopefully I don't fall asleep.
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Enjoying all the pics!
On the subject of fatigue - this illustrates the way I have felt for the last week. Finally (fingers crossed) feeling a little better today. I CANNOT wait to get normal taste buds back:)
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Great picture golfinggirl!!
Glad your SE are less evil ColdinCanada - and this fatigue is overwhelming. It sets in earlier and last longer each cycle for me also and I don't seem to get as many nice days at the end either. Oh well what can we do but do it!!
I just got back from getting fluids - although I am able to drink plenty I got them after the last treatment and they really seemed to help with the first 4 days of blah so I am hoping they do the trick again. Only thing is now I feel bloated LOL. oh well...
A Belated Happy Canada Day to my friends from the great white north and Happy 4th of July to my US comrades. Mine will be quietly celebrated on my couch or in my bed but at least my hubby is off and I will not be alone.
Have to tell you a very sweet story. We have season tickets to the Tampa Bay Bucs and my account manager contacted me about a month ago to check to make sure I was getting her emails and invites to all the off season stuff cause we hadn't attended anything - it is only the 2nd year we had had tickets. I told her what was going on and today I rec'd a package from her and the Bucs with a very nice hand written get well message signed by Joel Glazer - one of the owners and my rep and a Bucs bandanna for my bald head. There are nice people in this world!
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Linda cool about the bucs! I had a similar experience with our lacrosse team the toronto rock. We have been season ticket holders for 2 years and I had emailed them before my surgery to get extra tickets for friends explaining my situation with cancer
At the game I was given a signed jersey and told that the team was behind me with my fight
So touching!!!!
Really restores ur faith in humanity!!
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Go Bucs!!!
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Footballnut - have you thought of calling the Dermatologist office and telling them that you are a cancer patient and wondering about this nail thing is really freaking you out? How they could contribute to your piece of mind by trying to squeeze you in? Surely your piece of mind would be worth more than a botox shot.
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brig not certain who I am being referred to bit the request is coming from my onc which should be helpful. I will wait until the end of this week and if I hear nothing I'll call my nurse
I've had it for 6+ months so a few more weeks can't hurt anything except my nerves 😄
I don't know what made me search after all this time. Guess that every little thing makes me think of cancer these days!!!!
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Thanks for all the welcomes!
Brigadoon and Lakegirl, thanks very much for the explanations on the cough. That makes total sense and feels exactly like what is happening to me too.
Lilyrose, congrats on being 1/3 of the way through Taxol!
JBokland, my tumor may be bigger too -- at this point they are just guesstimating from the imaging. My surgeon said the lobular kind is often more extensive once they get in there.
MommyQ, that's awesome that you enjoyed the pho -- can't wait for my tastebuds to get normal. And hooray for the lump just being fluid!
Clarrn, did you have low white blood cell counts? I did too -- ended up in the hospital with neutropenic fevers on my first 2 rounds of A/C, then they reduced the dose by 25% and put me on Cipro. That seems to have worked.
Longislandl8y, have a good weekend with your little dog - he sounds like a sweetie! We have a little white poodle mix named Star who may be about the same size.
Linda505, I loved your story about the Tampa Bay Bucs! Very touching, and a classy thing to do.
Golfingirl, you look great! I hope the nausea and muscle pains are leaving you alone now.
Footballnut, good job working out - 40 mins on the treadmill is awesome! I have tried to keep to my exercise routine too but I've definitely had to cut back. I totally get obsessing about things like your nail -- I do the same and it almost always turns out to be nothing. I agree that your dermatologist should get you in early so you don't have to stress about it!
ColdinCanada, so glad to hear you got some good sleep. How old are your babies?
SharonDe, that photo of your dog's fatigue is too cute!! I feel the same way. :-)
I am here at the beach with my husband, MIL, and 3 kids. I have spent a lot more time in the rental condo sleeping than on the beach or at the pool, but I'm glad my kids are having fun since they had to miss out on a couple of other trips due to my diagnosis. I have felt like I stand out when I do go to the beach or pool because I'm wearing a cap and weird tops to cover up my port, etc. Truth be told, no one is probably paying any attention.
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Lena- enjoy the beach, I find it very healing. Yes. ILC are often bigger, get are sneaky SOBs!!
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Cold - after 5 I am experiencing the same wane in SEs. Who woulda thunk it??? Fingers crossed that the big D isn't as bad this time.
I forgot about the question regarding drinking water and how cumbersome it can be. I've found that sparkling water is helpful. And today I'm going to make a batch of home made strawberry lemonade I made for the first time a couple of weeks ago and freeze it into ice pops. It's just strawberries, lemons, sugar or honey and water. Very good!
4th of July in NY today looks like cool and rainy. Is it wrong that I'm happy about this? lol. Bwtn it being my bad week, my little dog Jack deathly afraid of fireworks & my gardens contending with dry heat all week I am thrilled for this weather.
Football I am so proud of you for keeping up the exercise. I dropped off after my 2nd or 3rd infusion. Just getting to work every day and trying to keep things normal around the house has been about all I could handle through chemo. I figure in 4 weeks I will be ready to get back to working out. Can't wait!
Linda, I agree wholeheartedly with all you've said about the article. I also put it out there on my facebook. If you would like to be facebook friends, I'd like that. My name is Jeanne Musella-Fling on facebook. And that goes for everyone on here. The more friends the better, especially with people with whom we've formed a bond with.
Happy Independence Day fellow fighters! Hope it's a great day for everyone... or at least minimal to SE free!
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Thank you all for the fluid tips! Anyone else have bizarre dreams? I wake up and just think...what the......?
I am going to try and go to the grocery store with DH. I am still too spacey to drive. I feel like I am high or something and I hate that. But light at the end of the tunnel. I should feel really good oh about Wednesday, just in time for round 3 of 4 AC. Then I start 4 rounds every other week of Taxol. My MO says this is the best for my TN status.
Hair started falling out 10 days after round 1. Shaved it but now have stubble!
Nice to not shave armpits or legs though.
Hope everyone has a light SE day!
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try a few fresh mint leaves in your water!
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Hi All,
I've been lurking since before my first infusion on 5/20 (I'm a regular on the May group). I have used the information you've shared to prepare for each of my own infusions. I've wanted to "come out" a few times but you guys have such a sweet bond btwn each other I didn't want to crash it. But when lena lou was welcomed in, I figured I'd come out of lurkdom. So, hello *waving*
And I want to send out a BIG thank you for being so open and honest on here. Your experiences have helped me so much. I've been happy with you on your good days and sad and mad with you on the bad days.
Peace,
Wendy
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A big welcome Wendy!!!
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long I have hit you up on Facebook and invite all others to hit me up if you like. Just look for Angie Sandow. 😊
Hoping that all are safe on the east coast of the US! Hearing about Arthur now. Pls be safe my friends!
2 days after herceptin and taxotere. Can't complain yet. Have a funny taste in my mouth but can still taste food and other than that -and my nail freak out - I'm doing well
Plan to get my butt back on the treadmill today and doing my arm weights.
I never really cooked before but since cancer I've been exploring!! I am so proud of myself. I actually roasted vegetables yesterday in extra virgin olive oil, made honey garlic salmon and chicken. Gee when you don't work 10+ hour days and have to rush home it's amazing what you can do!!
I wish you all a wonderful July 4 th. Enjoy your day and weekend with minimal or no SEs!!
God bless all of you and the USA!!
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So here I am with my youngest DD! Thought if you all were brave I could be too!!!
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this is on the back of my office door at work!!!!
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Lena - hope you are enjoying the beach.
Wendy - welcome. I think lots of us read the other monthly threads and it's great to see people cross posting.
Mompv - You go, girl! Thanks for sharing your brave pic. And, about the bizarre dreams? I almost asked this same question yesterday - having wakened from a most bizarre kidnapping where I had to escape through underground tunnels ... Totally Bizzare.
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Mompv, You look so cute! Your daughter is beautiful, as well.
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Golfingirl & Mompv: Great pics!
Footballnut: Yay, you pooped! I did too! Hey, we gotta celebrate all the good things.
Sounds like your nail thing will be ok and probably is the same thing your mom had.ColdinCanada: I'm finding I'm getting more fatigued with each treatment too, starting with #3. I guess the docs did warn us!
That's weird with the black tongue! At least your kids are getting a kick out of it.SharonDe & Lena-Lou: My tastebuds started getting wonky yesterday (day after infusion), so I hear ya. Looking forward to getting them back in about a week or so! Sharon, that's a cute pic of your pup! Lena-Lou: enjoy the beach. Even if you sleep a bunch, I think getting some fresh sea air is probably good for you. I love the beach.
Linda & Footballnut: That's so cool that the Bucs/Rock sent y'all those gifts. Yes, there are good people in the world.
Mompv: Oh, after reading several posts from others about freezing juice, I remembered this. I use a Zoku to make slushies out of juice. You freeze the Zoku overnight and then pour in juice (or whatever fluid you want), and stir it for about 15 minutes on and off to make the slushie. Great for summer. $20 at William Sonoma or other places (http://www.zokuhome.com/pages/slush-shake-maker)
Wendy: Welcome to the board!
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Happy July 4th to all my American friends on here! Hope you get to enjoy whatever kind of day you want today with minimal SEs! Last year today we were at Cannon Beach, OR.. Oh how I love everything about that place!
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That is one of my FAVORITE places ever. I dream to get back there one day.
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I am so bored today! Went on treadmill for 40 minutes. Took half the day to get my ass to workout. I just can't get myself to do anything else today! Ugh!!!!!
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Wait a minute, Footballnut, if I had done 40 min on the treadmill I would be resting on my laurels! (That is a body part isn't it?) Congratulations!
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footballnut - 40 minutes!!! I'd have to rest after just looking at the treadmill.
Clarrn - beautiful photo of Cannon Beach - maybe next year?
Last year, we enjoyed the Fireworks in Camden Harbor (Maine):
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Footballnut: I'm with Sharon. I'd be worn out just walking downstairs to my treadmill.
Lazy day here. Napped for an hour with my dog on the couch. Sat outside on the back deck and enjoyed the beautiful weather with the hubby. Noticed I have 3 dark "tree rings" on my fingers from my 3 chemo infusions and took a pic.
Getting ready to eat grilled dry rubbed pork steaks prepared by the hubby. Hope they taste ok.
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What an interesting day this Saturday is starting out to be! Let me backtrack to last night when the aches started to kick in. I suspected that if I did experience aches that ithey would target my already weak spots like hips and knees. Whammo!
So this morning I woke up with similar aches and now the tummy has joined the party! My bathroom and I are becoming aquainted again but this time is the big "c". I feel like it's just stuck there. Can't even stand up!
I have meds for this but since it just started this morning they will take 1-2 days to kick in. ugh!
What a terrible feeling! I can deal with the aches but don't want to spend all day in the bathroom just incase something decides to move!
I hope that once I can start the meds that I don't end up with the big "d" like last time!
Saw the macys fireworks which was aired last night - beautiful! The US sure knows how to throw a party!
I hope that ure all enjoying a great weekend!!
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MommyQ - My fingernails look just like that (but not as long and certainly not the lovely shape of your nails).
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football, I could have written what you just did. Yesterday was extremely painful. I took two hydrocodeines and i think that makes constipation even worse. So I took a dulcolax, two stool softeners and a prune every hour for 3 hours. Relief at last!
What is amazing to me is how the body controls the mind. I felt like I was dying yesterday and my mental state went right along with it. Hopeless. Then, this morning, I woke up with this sense of "life" returning and with it came "hope". I will try to go to the movies today. Good luck to all of us!
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Timbuktu I hear u sister! It was an hour of hell before done movement. My onc gave me this liquid called lactulose. Just took some. I hate taking anything for tummy issues because with me it most often goes straight to the big "d". Yahoo!
Then I've been weepy and crying today because all of this pain. Just a down day for me. Hope to bounce back soon!
I'm afraid to eat because if I do then I'll probably have to poop and will be right back to where I started!!
Ugh!!
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footballnut - feeling for you. Is this a new side effect for you? I can't recall for sure, but I'm thinking you just started the taxotere.
It's a good idea to note how you feel each day, because chances are, future tx will give you a similar effect with regards to C and D.
After suffering with this (and it is painful) after my first tx, I started with ducolax and sennecot the day before chemo, and continued for 4-5 days after. It helped a lot. At first, I went too far and the fun D got me. But, one dose of Imodium sorted me out. I know it's different for everyone, but I do think we have to be willing to take more meds than ever - sucks, doesn't it?
Hope you feel better soon.
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I agree it is amazing how your physical condition so controls your mental place. When i don't feel good everything is horrible!! I hate the C days - they are the worst. I am mentally in a better place today but Wednesday through yesterday I was in the midst of a dementors convention!! ughh. One day at a time - left foot, right foot,....
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sharonDe yup these SEs are new. The aches, pains and big c. I had d last time but I think that was due to my taking 2 senekots
Man did that get me moving!
This was my first round of taxotere and herceptin. Not fun at all! I think that is rather have the nausea back!!!!
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hip pain- glad to hear you guys have it too. I have been obsessing there is a bone met there. The joys of cancer paranoia! Today some nifty blisters appeared in the bottoms of my feet. And there is a hard nodule on my shoulder right off the collarbone. I think I have a great list for the onc visit Tuesday. If anyone has any questions they'd like me to add feel free! It's gonna be a long visit! Happy weekend to all.
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these aches are brutal! Ugh!!
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footballnut- I'll ask about your dark nail line! Why not?
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Mscaruso - The hard nodule near your collar bone could be necrotic tissue that developed after your reconstruction. I have one of those right near my sternum. I didn't have the same type of surgery (I had a DIEP) but I understand that this is common in breast reconstruction.
I am not saying you should not mention it but thought knowing about mine might make you breathe a little easier until you get it checked out.
Lots of bone pain for me today too. Not sure if it is the Zometa reaction, the front going through or the chemo. Just know I have my IBP bottle handy.
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brigadoon- thank you- it is a relief to know that people here understand the fear of every lump and bump we encounter. This is our new normal. Hoping yor bone pain eases up and you can get some rest!
Sandra
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Happy Belated 4th of July to all the American Warriors!
Sunshine here! Lots and lots of SUNSHINE! I am LOVING this - sitting on the deck, under a sunshade of course, enjoying the WARM. I totally feel like a WINNER, because Cancer did NOT steal my Summer JOY.
lena-lou - my "babies" are ages 8 and 11. They'll always be babies in my heart.
Wendy - Welcome to this amazing group of Ladies.
footballnut - My tummy troubles with Taxotere ALWAYS follow the same pattern - The Big C for the first 5 days, followed by The Big D for Days 6 - 8. It doesn't really matter if I consume copious amounts of fibre and drink Senekot tea or do nothing, it's ALWAYS the same. By Day 9, everything is back to normal. After the first couple of rounds, I started taking Imodium (with my MO's approval) at the the first sign of The Big D. I give it a couple of hours and if there's no sign of it leaving me alone, I take the pills. It is SO HARD to be a pill popper when you never even took extra-strength Tylenol before. But you gotta do what you gotta do to be comfortable, right? Taxotere is NASTY stuff. Oh, and also I found that dairy irritates things a little - so I limit myself for that first week.
As for the bone/muscle pain, yup - I often have to remind myself that Taxotere is HELPING ME. My first round the pain was so severe I wept and wept and wept. I was told I could alternate Tylenol and Advil as long as I didn't have a fever. Epsom salts baths helped too - just drink LOTS of water. The thing that made the biggest dent in the pain, though, is the daily Claritan. Again, BEFORE I never took anti-histamines unless I was DESPERATE, and now? I'm popping those pills EVERY SINGLE DAY.
MommyQ - THANK YOU for the suggestion of the Zoku! Such a great idea!
My furry mouth is still hanging in there. Blech. It not only makes everything taste terrible, it also HURTS to chew and swallow. Bread and fruit are especially nasty, so I'm drinking Veggie Juice, which I never liked the the taste of before. But now I kinda crave it. Who would've thought?
Isn't it funny how everything is now categorized into BEFORE and NOW? When people get excited about my last chemo in a couple of weeks, they say things like "Oh, and then things can get back to NORMAL for you!" Ummm, I'm not sure I know what "normal" means. There's a New Normal now, and I have no idea what it's going to look like. But still I say BRING IT.
Hang in there Ladies! For those of you in the midst of The Dark Place, we've got your back, and The Light is coming.
Hugs to all!
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mrcaruso - while you are asking questions ask your mo why I have a dull mid back ache all the time now LOL.
I just came back from having dinner - actually had an appetite and taste buds so I took advantage and had hubby take me out. Went to a mexican joint and I had their steak that has a nice ranchero sauce on it - not too spicy but a very nice flavor and I ate the refried beans and left he rice. I was so good as I avoided the chips and torilla's cause of my diabetes - then the waiter decided to be "nice" and brought a complimentary desert. Sorry but my will power went out the window. I will pay for this with my counts tonight and in the morning. But at least I got a little enjoyment out of the high numbers - unlike when I am good and just take my steroids.
Oh well, hope you are starting to feel better footballnut and mrcaruso. And here is hoping for a week of minimal SE's for all of us going through treatment!
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- Linda505 _ Maybe you will.skate on the numbers since you had a lot of protein and the dessert was consumed within an hour of that. Here's hoping!
- Linda505 _ Maybe you will.skate on the numbers since you had a lot of protein and the dessert was consumed within an hour of that. Here's hoping!
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Footballnut- Sorry you are having so much tummy trouble. But I'm right there with you. I was thinking how much easier the Taxol has been...ha! Not this time. My digestive system is so messed up. Third day after infusion is always rough but this takes the cake. I feel like I should just set up housekeeping in the bathroom!
Cold - It sure is hard to remember that these stupid drugs are actually helping us! I wouldn't wish the way I'm feeling on my worst enemy!
To everyone else - I'm having trouble keeping up with all the posts! You guys are amazing. I am trying to read and catch up...but I'm having trouble keeping everything straight in my head. Right now I guess fatigue has taken over. I'm hoping for a better day tomorrow.
Wishing you all an SE free week, hugs, lilyrose
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Hi, Lily - nice to "see" you.
This will be funny - someday in the future, but not right now!!!
Picture late Sat afternoon on the July 4th Holiday Weekend. Add in a chemo patient, trying to work her way through the last bit of cytoxan/taxotere running through her system. Having (mostly) conquered the big C, she is now rather delicately negotiating the fine balance of the big D ... With frequent precautionary trips to the bathroom.
Picture Husband coming in the house and announcing, "we have a broken water pipe, had to shut off all water to the house." We are now hoping to get a plumber out Sunday, but who knows? Until then, we will have to haul buckets of water in from the swamp to facilitate flushing. My luck, I'll get eaten by an alligator.
See - it could always be worse
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SharonDe - Too funny. Gotta laugh at life's little jokes.
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Sharon - you just made my day! I about peed my pants. You're right...it could always be worse. Stay away from those alligators!
Hugs, lilyrose
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SharonDe, oh no! That is bad timing. I hope the plumber can get out there tomorrow!
Linda505, I would not have had willpower with a free dessert, either! I love Mexican food too -- glad you enjoyed it!
ColdinCanada, my "babies" are 7, 6, and 4. And I am 47, an old mom. My oldest is my bio child and my younger two were adopted. I hear you on feeling like a pill-popper -- I have one of those little day-of-the-week pill organizers that is mostly for my OTC medication. Thanks for your encouraging words - I am glad the light is coming for you soon with the end of chemo! I hope you will share what your New Normal is like!
Brigadoon, I really like the quote in your siggy (is that what they are called on these boards?) I'm sorry for the bone pain and hope it eases soon.
MsCaruso, I am also an obsessor. I'm glad you will be getting all your questions answered soon.
Footballnut, so sorry to hear about the digestive problems! I have been constipated since starting chemo and if it weren't for stool softeners, I would never go.
Mompr, Are you taking dexomethosone (sp?)? The nurse practitioner in my MO's office said that could cause spaciness and she had me cut the dose for my 2nd cycle since my nausea wasn't too bad. You look beautiful, and so does your daughter!
Jbokland and MommyQ, thanks for the good beach wishes. I think it was healing since now I am back home with a good energy level.
Wendy, glad to see you on this board! Embarrassing confession - when I was first looking for a monthly chemo group to join, I could not find any except for the April group. Now I see there are several. Chemo brain has definitely affected me.
Clarrn, what a beautiful beach!
Timbuktu and Lilyrose, sorry to hear you have had digestive problems too.
We came back from the beach today. I was happy to be home and had decent energy, enough to get a lot of laundry done and things unpacked. I also had a good appetite this evening, which is unusual -- I have had very little appetite since starting chemo. I do seem to be losing my eyelashes. The ones on the bottom started falling out first. The hair on my head has not all fallen out - I still have probably 10-20% of it as stubble. So maybe I will keep a few eyelashes too? Hard to say!
Hope everyone is enjoying the weekend as much as possible.
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SharonDe yikes! When it rains it pours!!! I hope the plumber comes today!
Linda505. I love Mexican food too! Take what enjoyment you can and eat the dessert once in a while!!! Your numbers will regulate. Drink lots if water and exercise that brings my DH's numbers down when he over does it!
I made strawberry lemonade! All I can say is yum!
My "babies" are 23 and 21. They are both home now. My youngest home from college and my oldest s still looking for a decent apartment. So I have them home for now!!!!
Here is a pic of them and also an engagement pic of my youngest!!!
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Mompv, Your photos are just bursting with life, and so very positive! Thank you for sharing!!
SharonDe, My sympathies to you in your plumbing trials, what a crummy time for this to happen! Yikes! Otherwise, how is your energy post-chemo? I was given a pass, as they called it, and no chemo last week or this. I am already beginning to feel more normal, its amazing. It will be tough going back to the weekly routine. Oh well, I will enjoy it while I can. How,s the hair coming along?
MsCaruso, My oncologist is super cautious about neuropathy signs, like burning sensations on soles of feet, numbness or peeling or blistering. I have two weeks off of chemo just because I STARTED to get the burning feeling and a little more numbness in patches. It might be good to call your onc. office about those blisters. Let us know what you hear about that.
Brigadoon, Are you better today? I get confused about the etiology of symptoms, too, and when you throw in mets, well, that really adds to the full catastrophe. With a few extra days without chemo this week, I am more aware of its effect on my sense of well being. Starting to feel moments of the old normal! Wow!
Limda 505, That term, dementors' convention is so descriptive! Its taken me decades to understand how to defer major decisions when I am in a bad mood, how not to take anything too seriously til I feel better, etc, etc. Hoping things continue to feel easier this week for you.
FBN, Wishing that the good fairy of healthy tummies visits you today and relieves you of any discomfort. We all need your cute self in top form, leading the inspiration brigade!
Hugs to all, Mame
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I can't take credit for the photos. My oldest daughters best friend is a photographer. She is on Facebook as Unseen photography.
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good morning ladies
Thank you for your kind words and support. I couldn't stop crying yesterday and feel like doing the same today. The pain is debilitating! I can't take it! I have percocets but am afraid to take them. I've been taking Tylenol which has been helping. Just can't see how this is all good for me. I've never been in so much pain in my life.
My tongue feels swollen and burns. No mouth sores. Hubby has been giving me chopped ice which helps
I feel like passing out - feels like I have sweats. Not hungry but have to eat. The thought of food makes me want to gag. I just ate cream of wheat. Tastes like cardboard
My stomach is moving so I don't know if I should keep taking my meds. Ugh
My eyes hurt, my ears hurt, my cheeks hurt, my port hurts, my chest hurts, my back hurts, my knees, my hips!! Then I start crying again! My poor hubby! He has been fantastic
I don't know how I can keep going like this if it gets worse tomorrow when hubby is at work and I'm alone!!
I'm so sorry to be such a downer today!
Trying to keep my spirits up by watching tennis. Go federer!!
Hope that all of you are okay!!!!
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mompv beautiful pics!!!!! Makes me smile to see such happiness!!!!
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footballnut - I'm not a medical person, but I don't think you should have to suffer this much. Perhaps your onc should refer you to an urgent care or emergency facility where you can get some proactive relief. And, agree, taking Percocet is likely to make it worse. Feel for you.
Mompv - beautiful daughters and photos.
Mame - missing chemo is a mixed blessing, at least your body will have a chance to heal before the next one.
We are managing, but probably will not have the waterline repaired until tomorrow. We are having torrential thunderstorms, which doesn't help the outside working situation. Just glad we don't have a house full of company. My energy is slowly returning - at least I can sit up all day now.
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Footballnut you need to call your dr!! They always say to call because they have meds for everything!!!
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unfortunately can't reach anyone today unless it's emerg and I'd prefer to stay away from there
If I feel this bad tomorrow morning I'll be calling
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Hi Ladies! I just spent part of my morning catching up on all your posts...I was so completely out of the loop the last two or three days post dd Taxol. But I'm back, and here to let you know I'm thinking of you
I cannot believe I've completed seven infusions. One more to go!Besides the expected bone pain, I can always count on the big C after my infusion. I think it is almost entirely due to the pain meds and cough medicine I take, but I'd rather deal with C than the excruciating pain. I hear what some of you are saying about all the pills...I can't stand it. I take pills for pain, then more pills to deal with the SE's of those pills, then still MORE pills for other reasons. I cannot wait to be pill-free!
Does anyone else have pain from their port? It's always been uncomfortable, but after infusion it HURTS. I'm counting the days until my last infusion so I can get rid of this dang port. I'm wondering when it can be removed? My surgeon originally said it could be removed in the office, but I've read it's actually an outpatient surgery. Anyone looked into this?
My hubby and I celebrated (sort of) our 18th wedding anniversary yesterday
I'm so happy to have him to help me through this cancer journey. I thank God I have him every day. I was a little too under the weather to leave the house yesterday, but we spent the day hanging out with our three beautiful kids and enjoying homemade chocolate coconut malts here at home.I hope you're all having a great day...thank you so much for all your positive energy. I love reading about all of you, and please know your stories are helping me get through this.
xoxo
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Footballnut, Sending thought of healing and freedom from pain your way. It sounds intolerable...hang in there until tomorrow when you can call your MO. If the MO has an emergency number, now would be the time to call. Huge hugs to you.
Swissmiss, No pain from the port post infusion, but I can't stand mine either and can't wait for it to be removed. On another thread someone posted a you tube of port removal in office rather than hospital. She actually chose to have hers removed this way, and said it was no big deal at all! My BS actually only does removal in her office in a 10 minute procedure. Or, I can go to the hospital and have an interventional radiologist remove it, and would have more than local anesthesia. The in-office procedure is local only, but then you don't have to spend hours in the hospital. I'll probably chicken out and go to the hospital. My port was very painful sleeping until about 2 months ago when it finally "settled." I'm told it's not uncommon for it to be painful in thin, smallish women which is me.
Thought I was sailing through nearly at the end of Taxol, but couldn't get my infusion on Thursday as my white blood count gran was only 0.9 - overall wbc was 1.6. Ugh. My MO is OK with me skipping it and having only 11 Taxols, but I'm doing all 12. What's another week added to what's already been half a year since DX! Hard to believe I've already been that long a resident of cancerland-:).
Paula
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Hi all. This fourth of July wknd such a bust
Beautiful weather and all I can do is shuffle back and forth to and from the bathroom trying to s&*t bricks. (sorry). I missed out on a big family celebration yesterday, and a smaller one this morning and it's not the missing out that upsets me as much as the not being there for my hubby. I can tell he is depressed about having to do things without me, and there's really nothing I can do about it with the digestive distress. Even though we know to expect it, it still hits us in such a way that it's downright frustrating and sucky. Boo! I was so happy knowing I only had one more infusion left, but now I'm already dreading that last one in two weeks and just want the doctor to surprise me on Tues. and say I don't need it. I know that won't happen, but I just feel defeated today. I guess I'll allow myself today to feel this way, and pack it in and hopefully back to positivity tomorrow. It will be good if the big C would pass and the D doesn't show up - then I can at least go back to work tomorrow. Mompv - I made strawberry lemonade too, and I froze it into ice pops (1lb organic strawberries, 2 organic lemons, 1/2 cup pure cane sugar, 3 cups water). Made 6 pops I believe. Really good. Going to go have one now
(ps. your daughters are beautiful!)Football - I'm worried about you. How about a nice bath... that might help?
I'm going to focus my prayers on you today, girl. -
Hello, fellow warriors. After getting through round 4 chemo week and feeling human again, let me tell you how I spent the weekend. I haven't been able to go out much or travel since my diagnosis (and my birthday fell on a bad chemo day), so I decided to cram a lot of pampering and enjoyment into one holiday weekend. Having almost reached the annual out-of-pocket maximum of my health insurance, I celebrated by spending an OBSCENE amount of money on myself at a nice resort and spa about an hour outside of DC.
I left the wig at home, but took several nice scarves with me. When I was getting ready for my spa treatment, I hesitated about leaving the scarf in the locker and walking around the spa area bald. I haven't let anyone see me like that. But I left the scarf behind. When I was sitting in the relaxation room waiting for my treatment, a bald woman walked by. We gave each other a knowing smile. It was perfect. I saw her later in the restaurant, still bald, having a nice time with some friends.
This was the first time since my diagnosis that I haven't felt like Cancer Girl. I didn't talk about cancer at all this weekend!
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Everforward - thank you for the awesome share ~<3~ and good for you!
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That sounds amazing! Good for you! Yesterday I managed to get to the movies and for 2 hours escaped my reality. I've been trying to gather up the strength to go again today but still have not made it. Managed to brush my teeth just now, a major accomplishment. Round 4 has really whipped me and I'm thinking it might be my last. The heart palpitations scare me. The neuropathy too. I obsess 24/7. I'm not a risk taker but there is no way out of this risk.
I keep thinking of going away too, but I can barely sleep in my own bed, I don't see myself enjoying a getaway...yet. Off to shower and the movies!!!
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EverForward - LOVE, LOVE, LOVE it! Choosing to spoil yourself is a lesson I think we all could learn.Timbuktu - What did you go see? We saw "The Jersey Boys" on Thursday and really enjoyed it. Some of it moved slow but the music and the performances more than made up for it. There are several movies coming up that I want to see. Publish your reviews, please
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everforward- Good for you. Glad you enjoyed your spa day.
Football- Your side effects are exactly why I called Taxotere taxoterrible. It did a number on me last time. I would go from C to D in a matter of an hour.
. I hope you get some relief soon. Timbuktu- it's a hard decision about treatment but I think whatever you choose is the right one for you.
As for me I have been feeling up and down. The neuropathy comes and goes constantly. I feel okay almost normal followed by I can't get out of my own way.
. This Tuesday will be infusion 5 of 12 and I am hoping that I can keep the neuropathy at bay. I use my hands as a photographer . I have also been pretty consistent with the D and of course it likes to hit at the worst time. This weekend it hit when we were in traffic. . I can't wait to feel normal again. My fuzz is still growing
but not colored yet. I keep thinking that maybe this would be the week that I will get some color but it hasn't happened yet. -
We saw "America" and we loved it. Just got back from seeing "Tammy". I knew it had gotten horrible reviews so I did not expect much but I really enjoyed it. I wanted something dumb and I got it. I love Melissa McCarthy, she can do no wrong as far as I'm concerned and with a cast that included Susan Sarandon, Dan Akroyd, Kathy Bates, etc. how could I complain? As we were leaving my husband said he wanted to see "Edge of Tomorrow". I told him the last thing I need is something that will keep me at the edge of my seat!
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footballnut - I am worried for you. Taxotere can cause some awful body pains, but what you're describing sounds extreme. Is there an after-hours number you can call? Here in Calgary, for evening or weekend problems, we're instructed to call Emergency and ask for the MO on call. I would try to reach someone soon - just to make sure there's not a serious reaction happening. And even if it's not something serious, you should NOT have to suffer like this.
Swissmiss - I have pain and pressure around my port for a couple of days after infusion. Every time. I was told it's normal. The good news is that I think I've finally gotten used to the darn thing. Other than the post-infusion pain, I hardly even notice it anymore. Which is good, since I'll have it until next Spring.
Longisland - SO SORRY you're having such a rough weekend.
I totally know how you feel. I missed out on all the Canada Day festivities this year, and my last infusion is THE DAY BEFORE my 17th wedding anniversary, so I'll be missing out on that too. HOWEVER, I comfort myself with the knowledge that losing this ONE summer should give me AT LEAST 40 more to enjoy with my family. So BRING IT. Everforward - Just. Awesome.
Timbuktu - I love your comment about brushing your teeth being a major accomplishment.
I read about my FB friends doing all this STUFF everyday, and I'm all like "Oh yeah? Well, I took a shower and DID NOT take a nap afterwards. So there. " In other news, the hair on MY LEGS is growing back. I'm not sure if I should celebrate this or not.
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football, thinking of you! For what it is worth, I lasted 1 round on Taxotere. It is why I spent Easter and the following four days in the hospital. As a result, I am now doing 12 x taxol.. It is not my friend. Call your mo, pronto! I was diagnosed with chemo induced colitis from that nasty stuff. Adriamycin for three rounds was a cake walk.
Everforward, you are my inspiration ! Nothing better than a spa day. Good for you!
Jamieh, are you icing to help with neuropathy? My mo office is doing it starting with #2 on Tuesday. They don't recommend it for the first infusion so they can see how the body reacts.
I am getting some very light fuzz, too! But, lashes are falling
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BTW, I loved Jersey Boys too.
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Swissmiss regarding port removal.
I had mine out 10days PFC. I had it done in docs office. Really easy. 10 minute procedure. Only discomfort was the actual lidocaine injection. I had mine in for 6 months, there was done encapsulating, but nothing major. I document everything with pics ...here is my start to finish that day.
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no icing for the neuropathy but I do take l glutamine which seems to be working and vitamin b complex. It is almost gone by the Monday before the infusion and having already had 6 taxoteres I think I am more susceptible.
. I will ask tomorrow about icing. Woke up this am to a horrible belly again.
. Hopefully I can manage to go to the pool today with my kids. The stomach issues are the pits. -
jbokland...thanks for posting the photos! I was nervous about doing this in office, but your experience has made me feel excited to get rid of this thing! Of course, I'm jumping the gun, as I still have one more infusion, but I need to have something to look forward to
coldincanada...I thought you were also getting close to being done with chemo...why will you keep your port in for so long? I haven't yet talked with my MO about port removal, so I hope I'm not forgetting a good reason to keep it in. It's been a pain (literally) for me!
I was excited today to get my Campowerment registration materials for November in Malibu...have any of you ladies heard of this? It's like a summer camp for grown ups...after this year of cancer, I'm thinking it will be the perfect way to decompress
footballnut...hope you're doing better. I think we are all worried for you.
Hope you all are doing well today. My SE's are getting better, but with a 99 degree day forecast, I think I'll stay inside
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Swiss, I'll answer for Cold, since we're both doing the same cocktail. Although the chemo is only 6 rounds, the Herceptin (which is technically not chemo, but "targeted therapy") will continue for a year from the start date.
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Good Morning, everyone. Checking in especially to see how footballnut is doing today. These darn stomach issues are a real pain.
Also happy to report, we finally have someone here to fix the waterline - it has been a fun weekend of roughing it!
Great pics of your port removal, jbokland. Good luck getting yours out, Swissmiss. Camp sounds like fun.
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Sharon yay for having water again.
. So has any of the weekly taxol ladies started growing any hair. ? I have this crazy looking fuzz all over my head. You would think that I would remember this from last time but I don't.
. You can see it if you zoom In. I am ready to pull out some hemp dye to give it some color. I know it's vain but I am tired of the bald head. 
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jamieh. If you PM me your address I will send you a Sassy Head to try!
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Wrapped up Taxol and carboplatin. Did my first A/C and got that pesky shot the next day. Man, I think I'd rather keep doing Taxol than get that neulasta shot. 1 down 3 to go. I can't believe I'm almost done with chemo. What a ride. How's everyone doing? Hope you all had a good 4th. I was in bed. Got the A/C on the 3rd.
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I was in bed too. Feeling alive again today.
That head looks like mine. It feels as though I have a lot of hair but when I look in the mirror I can't really see any. I'm tired of the baldness too. Among other things.
Congrats on being done with Taxol and carboplatin! How many infusions did you have?
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coopdizzle- did they talk to you about using Claretin D for the Nuelasta? It did wonders for me!
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Jaimieh - I have been growing fuzz since finishing the A/C. Mine is now about 1/2 inch long all over. It looks strange to me. This weekend it started falling out along with my eyebrows. My eyelashes are holding on, but ALL of my body hair is gone. I just had #4 of my taxol last week. So I suppose it will be awhile until my hair officially comes back. Hope you don't have to wait long for yours!
Sharon - So glad you will have water again!
Longisland - hope you're feeling better!
Football nut - Please call your onc!
I am planning on keeping my port for awhile after chemo. My MO says it's my call, but for TN chances are too great that I will need more chemo in the near future. Boo.
Wishing you all a better week! Hugs, lilyrose
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sisters
I wish you were all here with me! I finally took a Percocet last night helped a bit. Then I woke up in pain and hubby gave me an English muffin and 2 percocets at 3:30 this morning. I didn't wake up until noon. Felt light headed like I would pass out
My hubby came home from work . My stomach started to get watery. Talked to my nurse. She said that I must take the percs and if I can't get fluid into me that she will order an IV
The percs do help with the pain but I feel so lousy and light headed as a result of taking them. I know that I have to eat but just don't feel like it. I did manage to eat another English muffin and some almonds. I am going to try Rice Krispies soon
Was drinking g2, apple juice and water plus ice chips
Now the pain is coming back so I'll have to take 2 more percs. Atleast it seems that they are lasting 12 hours.
I feel so bad. This morning I just wanted to die! This pain is brutal and I hate taking meds
So I'll take my percs and hope not to pass out
My nurse asked me to give her an update tomorrow. She said if I'm not feeling stronger then she will order an IV
Tx for being there!!
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footballnut- because you are feeling so down- let us lift you up. Know that we support you and truly understand every ugly thing you are going through. It's amazing how isolating this beast is, how it messes with our heads and morales. I hate it with every last bit of my being. Know we worry, we pray, and send you healing wishes.
Lily rose- hope you keep those lashes!
Coop- Claritin and alleve helped with neulasta pain - evil drug.
Jbokland- I am so happy for you!!!!!!!!
Timbuktu- same here! Wish it would just grow. Hate being bald.
Jamie- you look beautiful with your fuzz!
Sharon- hopefully you can flush away!
Swiss- can I run away with you to camp?
Cold- ever-mmta- glad to see we are all moving forward and you ladies at positive.
I had a bad morning. I know this sounds unbelieveable, but I never asked what stage i was- knew I was T1N1 but thought I was stage 1- a random email from a doctor just informed me I am stage IIa. Now I know the news could be a lot worse, so forgive my pity party, but my sorry chemo brain just broke my morale in half . Spent the majority of the morning crying.
I hate this disease, I hate that it robbed me of the optimistic, happy person I was. I don't know who the hell this person is right now.
Sandra
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Football, what a relief to hear from you. If the percs are workin' then just go with it.
My stomach is a bit better today. But now I have SCREAMING hemorrhoids! Never a dull moment. I am still feeling sick & defeated but did manage to do some laundry and change the bed sheets. I plan on feeling better tomorrow (maybe if I plan it, it will happen!). I've got to get back to work. And I have some things coming up over the wknd. Heading upstate to visit my sister. It's now been a month already since our sweet Lexi passed away & I need to spend time with Sis and make sure she's okay. My older daughter is taking the trip with me, so it should be good. Tomorrow is my FU with the breast surgeon. I need to talk with her about the followup MRI I need in August (to check on something the last one picked up in my right breast) as well as genetic counseling. Ladies, did your insurance pay for the genetic testing? On Thursday I follow up with the MO (whom I haven't seen or heard out of since our first consultation prior to chemo). I have a recurring fantasy in my head that he will cancel my final infusion, hahaha yeah right. I am anxious to find out how soon I begin rads after the final infusion. Hoping it's all said and done before my daughter's mid-October wedding...
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So glad you posted, footballnut...I know the Percocet is no fun (it gives me terrible C), but if it's getting you through the day take it. We will help you get through these dark days!
Sandra...I understand what you mean. I feel like I'm a different person than I was pre cancer. It feels like my life has been swapped with a sadder, pathetic version of the old me. I hope and pray I can get "me" back when chemo and rads are behind me. I think we can get there if we all stick together.
Longisland...my insurance paid for my genetic testing. Only thing was it was so expensive...I still owe the testing lab hundreds of dollars even after insurance paid. Worth it, but I am tired of all the bills popping up lately.
Wishing you all a great day!
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football did they give you Norco? I take that when the pain gets to be too much and it helps me sleep too.
Today I went out to eat with husband and could sit and talk and had NO pain! How is it that the body bounces back? It's beyond me.
Did you check your pulse? I get lightheaded and palpitations. I went for a check up today and was amazed that my pulse was 112! The nurse gave me something to drink. She said the heat can cause that. I did feel better after I drank a big glass of water.
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Jamieh, I get taxol #2 tomorrow and I do have some fuzz on my head. Sporadic hair growth on my legs, too. But, eye brows continue to thin. My MO said I would get a little fuzz after AC during taxol but not enough to cover my head. Let's see!
Footballnut glad to see you post. Hang in there! And, everyone else!
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hello all
Just popping in ... Sorry to hear of all the bad SE ... But we WILL get through this!
I had bad joint and muscle pain again 2 days after my second Taxol dose .. I getting DD so every two weeks. Tylenol seemed to help but am going to ask if there is something else I can take when I go in for bloodwork and weekly Herceptin tomorrow. Just want something to help me sleep!
I have been struggling with the big C off and on since my surgeries (and some lovely painful hemorroids to deal with - yuck) Yesterday, had the big D! That was a first!
Overall, my brain is clearer on the Taxol and taste buds are more like normal, but the fatigue is getting worse.
And I also think my hair is starting to come in! Seems to to be more stubble there than what I had. But am preparing myself for it to fall out again .... I'm okay with it :-). Haven't had to shave legs or underarms since May, and I am very okay with that as well :-)
Only 2 more treatments for me ...keeping fingers crossed that bloodwork behaves and I can continue on as scheduled. WBC are behaving now (kept tanking when I was on A/C) but hemoglobin is slowly going down and now platelets as well. Am anxious to see what they end up being tomorrow!
Meeting with radiation oncologist next week ... Want to get that going ASAP. In my mind no reason to not do the tattoos and set up more sooner than later :-)
Best wishes to everyone and hope that those of you in this new heat wave can stay cool!
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mmtagirl I remember some of the ladies in my group from before that their hair grew on taxol so there is hope. I was just ticked (think little kid temper tantrum) when it started coming out again.
I am hoping that tomorrow we can skip the magnesium infusion that I have been getting. The last one added an additional hour onto the infusion time.
. Is it bad that I am dreading tomorrow already. I feel like the weekly taxol treatments are going on forever. I know that soon it will feel like a distant memory but the thought of 7 more weekly followed by 13 more herceptin every 3 weeks and 33 rads is a little overwhelming still. I know I shouldn't complain but I am having a pity party today. -
Hello everyone! Having a low-key couch potato day here on Day 6 post TC#4. So out of breath, so I can't do much else, but happy the muscle aches from the Neulasta have gone away, and I'm not constantly napping like I did all 3 days of the July 4th weekend. Chest muscles are crazy tight over my TEs still. I guess that's the price I have to pay for wanting to have boobs again.
Everforward: Good for you in spoiling yourself with a spa day. You deserve it!
Footballnut: Glad you were able to find some relief with the percocet. Hope you continue to feel better as you get this chemo out of your system.
SwissMiss: My port isn't painful, but the muscle under it and my shoulders ache for several days after each infusion.
Timbuktu & Cold: I love the comments about brushing teeth & showering and not needing a nap being big accomplishments for us these days. So true! Today's the first day since Friday that I haven't napped (I had my chemo on Wednesday), so I was so happy! I actually read some and watched a movie ("Kinky Boots" - it was ok...something different).
Timbuktu: My pulse is high for about 5 days (runs over 100 at REST) starting on the 4th day after each infusion. I just try not to do too much to keep it down. If I just do something mild, it's over 120 bpm easily. I find myself constantly out of breath. It's the anemia.
jbokland: Thanks for posting pics of your port removal surgery. It's good to know it's not a big deal. Whew.
SharonDe: Glad to hear you have water again. Yay!
Sandra: Hang in there. We all hate that we have this disease, but at least there is a treatment. We will get through this and get our lives back!
LongIsland: My insurance covered part of my genetic testing with Myriad Labs, which ran about $4,000 USD total. I ended up paying about $350.
LongIsland and MakeLemonade: Are y'all doing conventional rads? Have you looked into Proton therapy? It sounds safer for the heart and lungs, so I'm going to ask my MO about it. Just trying to find out if anybody else is considering it. It's not available everywhere yet, but more facilities are currently being built.
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LongIslandL8y, I have had that same screaming H problem -- lovely, isn't it?
Football, glad to see your post and to hear that you are getting at least some relief from the percocet.
Sandra, we will get through this and will get back to our optimistic and happy selves -- that is our true nature! Although we may also be wiser and have more perspective . . .
Jamieh, we are neighbors - I am also in MD, in Silver Spring. I am starting Taxol Thursday so can't answer your question but have some very unattractive stubble left over from the A/C. Your head looks much more attractive!
Everforward, we are also neighbors. So glad you had a wonderful time at the spa! You sound like you have a better attitude and are so much braver than me. No one outside my family has seen my bald head yet.
Jbokland, hooray for getting your port removed! I am looking forward to that day.
ColdinCanada, hmmm, I guess needing to shave your legs again is something to celebrate, lol.
Everyone else, I am sending you good wishes.
I am starting Taxol on Thursday and will have it weekly for 12 weeks unless the s/es are too bad. Then I have to decide if I am going to join a clinical trial to do radiation with an experimental drug BEFORE surgery. My surgeon says no because operating on irradiated skin leads to wound healing complications, plus he will not be able to do the nipple-sparing surgery I was so hoping for. The MO and RO say it MAY give more protection against recurrence, but of course there is hardly any research because it is a clinical trial. Sigh. I just wish someone would tell me what to do.
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hi all
I hate taking percocets. It makes me feel foggy, light headed, nausous and spacy. Went to bed last night at 10:30 with a bit of pain. Thought I could handle it. Woke up at 1:30am crying. Hubby got me applesauce and I took 2 more percs. Woke up at 6:30. Had Rice Krispies with some milk. Had aome more apple sauce. Nearly threw up but didn't. Bit of d. Drank g2, apple juice and water
I've lost 4 pounds since Saturday. Called nurse to let her know where I'm at. Still have no fever
Felt better lying down. It's 9:40am and I just woke up again. Going to try to eat eggs and toast with a banana. Eating just doesn't appeal up me. My tongue is on fire but I have no sores
What I hate is taking the percs. When I have pain I don't feel foggy, nausous or dizzy. Just hurt. When I take percs I have these other SEs
I can't imagine having to have two more rounds of taxotere. I just don't feel strong enough. A friend of mine had these pains for a week before they subsided
Hard to believe that this will pass as I'm also hearing of so many women feeling crap with tamoxifen and I'll need to take that too. How will I have a good quality of life with this crap?
I have to be able to exercise, play my guitar, sing.....
On top of everything else I got an email from my company hr rep asking if she could give my personal email to my GM and director of HR. That really stressed me out. This is the same GM that hit me up on linkedin a few months ago as I'm getting treatment. I deal with my insurance company who deals with my employer. Even as a manager I was told that I could not deal directly with any employee who was off on disability
Every time I hear my GMs name I cringe. He couldn't care less if I live or die. I know that our a/r results have tanked in the months since I've been off. I'm going to tell them that I will continue to work through my insurance company and that they can do the same
It's all I need right now
Sorry to be so down all. You're really helping me with your virtual hugs. It's so hard to sit at home alone all day with my hubby at work knowing that he's worried about me and I'm too weak to give him a strong face
Hopefully this will pass soon. I can't take much more!
Trying to focus on nfl tickets going on sale for my jets tomorrow so that I can buy 2 tix for jets vs broncos. That same evening the rangers open their season against the toronto maple leafs my hubby's team. Hoping to get to both games!
Wishing all of you a great day!
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So sorry you're feeling so down. I also have two more infusions but the dr is trying to talk me out of it. So easy! But as soon as I start to feel better I get scared and want to continue.
Last night we went out to eat and I was able to sit pain free and scarf down the most wonderful Italian dinner. Then I went home and fell asleep at 7 pm. With some pit stops I slept until 8;30 AM!
Eating always makes me feel better, even when i'm nauseous.
People keep telling me this will pass but it REALLY is hard to believe.
And what is settling in is a kind of despondancy. I know I misspelled that but I also know that everyone on here will understand that there are huge gaps in my head where brain used to be.
In the end, all of this will be worth it IF and only IF we know it won't come back! And there is NO WAY to know that! There's the rub!
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Hello all!
I had a few sleepless hours in the early morning so I caught up on posts, mostly. Hope you're all feeling as good as can be. It's a rough road, that's for sure.
I just returned from vacation Sunday. I enjoyed my two chemo-free weeks (one was H only). I'm back in the chair as I write this for #10 of 12. I'm so looking forward to getting done. I was doing ok until that last round and it really knocked me for a loop with Neuropathy in my feet and so much fatigue. Hopefully the break will get me through these last three treatments. I have a neuropathy massage tomorrow and did acupuncture yesterday. I lost the rest of my eyelashes during the break - wow I feel like I look so different without, but I am sure I see it more than others. At the same time, I grew some leg hair for the first time in weeks - - I realized as I was sitting on the beach. Funny, didn't bother me a bit to be sitting there with hairy legs!
On vacation, I ran into two fellow cancer warriors. One is on chemo for the duration (Taxol as long as she can stand it). Prayers for her, don't know her name, but she was on the cruise with me and running around bald and proud.
Best wishes to all for a comfortable week!!!
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Foorballnut - what you're describing still sounds wrong to me. You should NOT be in this much pain. My first round of Taxotere, I had the kind of pain you're describing, but only for a couple of days. Even so, after my WBCs tanked, and I ended up in the hospital, my MO and I talked about it and he said that pain THAT severe suggests an allergic reaction. We added daily Claritin to my cocktail and things are much better now. HOWEVER, if things had NOT improved, we would have replaced the Taxotere with something else. I'm just wondering why your team isn't more concerned about this. Have you spoken to your MO personally? I would push for this. Some of the nurses I have dealt with have been WONDERFUL, and others pat me on the head, say "That's normal. Sorry." and tell me to suck it up. My MO, on the other hand, always tells me that severe symptoms are NOT "NORMAL" and can, and SHOULD, always be dealt with. I dunno, maybe my MO just goes above and beyond. But I'm worried for you.
Swissmiss - regarding the port? What EverForward said.
At first I was horrified that I had to keep the thing so long, but being in the Chemo Lounge, and witnessing so many poor women whose veins are damaged, I am thankful for it. For one lady, it took 3 nurses and five tries to get an IV in. This poor woman was in so much pain, and she still had several rounds of chemo to go. Poor thing. My pants have reached an all-new level of TIGHTNESS today. Super annoying. Carbs really settle the stomach, so I consume WAY too many of those, and I can't even exercise because too much exertion (as in, doing more than walking from the couch to bathroom) leaves me short of breath and nauseated. No one tells you going into this that chemo AGES you. When this is all over- I have it marked on the calendar - I have a date with my running shoes. We are gonna have ourselves a GOOD TIME.
Timbuktu - It's true - there are no guarantees about recurrence. But you CAN NOT let your Sweet Self go there. I was told that by going through chemo and Herceptin, I reduce my risk of recurrence to 2-3%. Which sounds great, but still a little scary. I mean, I just turned 39 - I have years and years left for that recurrence to happen. So YIKES, really? That HIGH? But you know what I heard on the radio not long ago? An ad for the Alberta Cancer Society, stating that ONE in FOUR people will be told they have cancer this year. ONE IN FOUR. That's INSANE. But it also means that my 2-3% isn't really so bad. Basically, chemo and Herceptin will give me the same (or perhaps better?) odds as EVERYONE ELSE in the general population.
Ladies, you all HANG IN THERE. There is an end coming. We're ALMOST there. And then we'll look back and be like "YEAH. I did that. I'm a ROCK STAR."
I'm thinking I need to buy me a CROWN.
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I went through CMF for the breast cancer for a 3% advantage. No one but sloan thought that 3% was worth the trouble.
Now, with endometrial cancer I've had several drs tell me that a 7% advantage is not worth the trouble of chemo. I'm truly at a loss. They know much less about endometrial cancer than breast cancer but as my Sloan dr said to me "If you are one of the 3% that's a lot!"
I wish I had more trust in my drs.
As i sit here typing with tingling fingers and tingling toes I wonder if they are trying to save me from myself?
The more Taxol you get the bigger the chance the neuropathy will be permanent.
But the BIG fear is chemo forever after a recurrence! Better to tingle cancer free, right?
I'm so glad they have discovered Herceptin Cold. All of you who will be saved by it.
Maybe that's the hope, to hang on until they find more cures.
Cold, it's always such a pleasure to read your posts. You have indominatable spirit and I try to borrow some because mine is truly flagging.
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Footballnut, have you asked your doc about a different pain med instead of Percocet? There has to be something out there that is easier on your system. You shouldn't have to suffer so much. Or maybe ask if you can go to low dose taxol weekly for a period of time to get your taxane allotment. My MO moved me off of Taxotere to taxol because of the SE's. Just a thought.
Timbuktu, must be the weather. I, too, am down. Highly anxious is more like it as I have an appointment with the chair this afternoon. No clue why it is hitting me so hard except on weekly it is tough to get mentally prepared like I did going every 2-3 weeks.
Wishing everyone a mentally good week.
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Oh i get the anxiety!
I have several friends begging me to go out to lunch. I try to explain there is no way the first week.
The question is the second or the third? I just made plans for the third. But in the back of my mind I know that if I do decide to have another infusion I will be a mental wreck the third week. The second week is the best, even with some SE's. The infusion seems so far away!
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Good morning, all. I read many of your posts with empathy - it seems this whole process cycles us though so much anxiety, fear, pain, and emotional ups and downs.
I don't know if this will help, but I am almost two weeks past my final tx. Finally starting to feel decent - taste buds coming back, minimal gastro discomfort, and enough energy to do the dishes and walk the dogs. I'm sure I will have some issues, but for the first time, I feel hopeful there might be a light at the end of the tunnel. It won't be a disco light, but even a 60-Watt bulb will be an improvement.
As for the dark thoughts about what the future might bring, I slap myself upside the head and say there's no since worrying about what hasn't happened yet. Still - it isn't easy.
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So happy for you Sharon and of course you are right. None of us knows what tomorrow will bring.
How wonderful it must be to look forward to chemo free days.
I just found out that my dr did schedule me for infusion number 5. Mixed emotions but mostly relief that I don't have to fight her decision to stop.
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Sending you a hug for your next infusion, Timbuktu. You've wrestled with the decision to continue, and it definitely sounds like this is the right decision for you. You are strong, to be going through this the second time - even if you may not always feel that way.
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Thanks for your post, Sharon. It helps to see that you made it to the other side, especially when I feel like I will never make it there myself (I still have 2 TC rounds to go). After 4 rounds, I don't feel as "strong" on my good days as I used to and it's harder to make myself exercise.
Another chemo brain tale: As I was paying my credit card bills online the other day, I realized that last month I made two payments to my Visa and no payments to my Mastercard. Oops.
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EverForward: I bet if you call the company and describe your situation and offer to prove it, they'll wave any late fees. Those are such a hassle. I have been really struggling to be organized about these things. I never used to have to write anything down. That is not the case now!!
Sharonde: thank you for the positive message. I have two more taxol treatments and I'll be on the other side too. I cannot wait. I'm trying to do 'warrior' not 'quitter', I was very close. I guess we all have to really take things day by day.
Timbuktu: I'm doing the Taxol 12 weeks for like a 5% increase in the overall reduction of recurrence. 5% is 5%. If I would have known before BC "do x thing and you'll reduce your risk by 5%" I would have done that. No regrets this way. I'm doing everything possible and will have to remember what SharonDe said about slapping myself if I start to think negatively. Day by day!!!
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Taxol #2 in the bag. 2 more and half way through chemo. 10 more taxol. There is a light at the end of the tunnel. Feeling some tingling in my toes tonight and I sincerely hope I am being paranoid and this isn't the start of neuropathy. Can it start this quick on taxol?
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I managed to get a half day of work in today, in between running home with bouts of D. I'm still running hot and cold and feeling very foggy. I saw my breast surgeon for a follow up today and told her I was feeling like maybe 5 treatments were enough and that I think the 6th might be detrimental to my health. We both agreed that I was probably more feeling overwhelmed at this point, than the chemo really hurting me. She said they could postpone my 6th by a week if I wanted some time to recuperate mentally and physically... HELL NO, if I'm going to have to have it, let's do it on schedule! She also said there is a 4 week break between chemo and radiation so I'm pretty glad about that.
Thanks for the feedback on the genetic testing costs. My surgeon put the paperwork in for me today because I definitely want to go forward with that. My mom is a colon cancer survivor and there is a link btwn breast/colon cancer genetically. I have two daughters who need to know if there is a genetic factor at work here.
Football, everyone is different. I was freaking out about the tamoxifen too when I found out I will need it, but the more people I talked to I see that it's individual. Some people have absolutely no problem with it. Plus, it's in the future - don't worry about that right now. You are a warrior and you just fight what's in front of you today. Focus on that Jets game (even though I'm a Giants fan, lol) and of course you'll be working out and playing guitar before long. Right now sucks but I promise it won't always suck!!! Hang tough, girl!!!
Thursday I meet with the oncologist. I'll let y'all know any interesting info I come away with. In the meantime, I have to set up an MRI on my right breast before radiation starts... and that's about it for now. Can't believe only two weeks til my last infusion.... Thank God.
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Mmtagirl: I don't know about the neuropathy this soon -- but I am actively doing the acupuncture (first one yesterday) and neuro massage so I'm hoping it'll help. Good luck. I hope that you don't have to navigate that in addition to everything else. There are also some supplements (b Complex) you might want to consider. I'd def let the MO know.
LongIsland: I'm with you - - two more weeks to end this chemo train. So much looking forward to that. I have already scheduled RO appointments - and I'm doing the sim 8 days after and then 10 days later or so starting rads. I want to get that done too. I've been following the summer rads board, and some are really getting through fairly ok. I hope for that for all of us. I mean chemo then rads, what a way to spend the summer!!
Football: hugs and peace to you. It'll be better soon.
Week by week, despite our setbacks, we are all making progress - slow and steady.
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Sharon - It's great to hear that things are looking up for you. Must be great to know you are finished with chemo! I sure hope you see that disco ball soon!
Cold - I hear ya on the tight pants! Haven't worn my jeans in months. Wearing my stretchy pants all the time now. My waist has expanded, but I also can't stand anything uncomfortable. Love the idea of a crown!
Timbuktu - I'm sorry you are dealing with so many issues. My MO gave me stats when I first saw him. My DH wasn't impressed with the numbers, but when you look at the possibility that you could be one of those few extra women that are helped-it makes a difference. We gotta take whatever we can get to see us through this!
Going for Taxol # 5 tomorrow. This last week was my toughest. Fatigue has really set in and one my fingernails are getting purple spots on them. A little tingling, but not too bad yet. Hoping neuropathy doesn't set in.
Wishing you all a better week! Hugs, lilyrose
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Long Island, are you worried about Lynch syndrome?
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Mscaruso - We get it. Hearing any negative news can send us into a tailspin. It sucks that you found out your status in a random email. I know I would be a wreck if that happened to me. Hang in there!
Football - I truly hope you are feeling better. You NEED a break!
Longisland - I had trouble getting my insurance to pay for my BRCA testing. Was turned down because of my age. My MO tried a different, cheaper company, and that was accepted. I too, wanted to know. Mostly for my kids sake.
I was sitting here feeling down about my situation...had to get up and use the bathroom...looked at myself in the mirror while I was washing my hands and totally cracked up! I suddenly realized that I look like Uncle Fester from the Addams Family! So I said maybe I should stick a lightbulb in my mouth and take my grand kids trick or treating early!
Hope you all have a better week! Hugs, lilyrose
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OMG Lilyrose - I had EXACTLY the same Uncle Fester experience yesterday. Including literally laughing out loud at/to myself.
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football it taxoterrible is a mind game. You feel bad okay really horrible and you just feel like how can you continue. I had Taxotere with carbo last time and I was miserable non stop. I will tell you that once you are done it will go away. You will feel better and alive again. You will feel like exercising, playing your guitar and just getting out and back to life. Yes you will have fear but try please try to live.
Lena-Lou that is awesome that we are so close. Taxol IMO is much kinder and easier to take. As far as rads what type of recon are you looking at ?? I have done implants and free flap so I have some experience with both. I will have rads this time and may need a revision afterwards.
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This about sums up me trying to put on my jeans.
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Good one, Cold. There is also one with Jennifer Lopez that is funny. (Obviously, I am awake tonight, and not being very productive, but enjoying catching up on the boards.)
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Love, Jimmy Fallon, Cold! Too funny. Good diversion for me as I can't sleep. Went to bed about 10:30 exhausted and woke up at 1 am tossing and turning ever since. Just after 3 am decided to get up and surf. Hear I am. Oh, and I have a meeting I have to attend at work at 8 am. Thank you steroids, it's gonna be a long day!
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With you on the steroids mmta! Up to 1 am... slept to 230.. awake until 430 and awake an hour and a half later. No meeting for me though, hope you get through ok!
Loved the tight pants Cold. Sharon, I have to find Jlo one ! I am purposely avoiding pants and sticking to flowing maxi dresses/skirts and my pregnancy clothes...what!? I need to go buy some clothes that fit!
In the chair for Taxol #6 today! Half way! And my twin brother is here from 10 hours away so he's taking me. It's funny that I'm excited to show off my Cancer Centre and nurses.
Well wishes to all in the dark place, esp you Football, I am off to water my garden before the heat hits! How
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Clarrn, I have a twin sister, and did the same thing! I also wanted to show her off to them, a funny kind of pride. Being a patient makes me feel like a kid sometimes.
Enjoy his visit!
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Bonus to the weight gain -
Taxol #9 today. Restless night so maybe I'll sleep epihrough this one. Does anyone get restless leg syndrome when they get Benadryl? I get it so bad that I can't enjoy the benefits. My WBC is hanging at minimum acceptable count and this is the last infusion for 2 weeks.
I have seen some of you mention starting to. Get your hair back. I wondered where you were in your treatment cycle when that started? I have thin coverage so not in the wig/scarf range yet it but that is just around the corner.
You all keep me reasonably sane. Thank you!!
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Ha ha ha ha ha! Good one clarrn! And congrats on reaching the HALF-WAY point! Yay!
Here's the JLo one - super funny:
http://www.youtube.com/watch?v=MLUvOtqTmYM
I'm been tossing around the idea of buying new pants, but I feel like it's sort of admitting defeat, you know? Like I'm conceding that these extra pounds are a permanent Chemo Present. And YET, I suppose I really can't continue walking around in Yoga pants ALL THE TIME.
Dressing it up has become a comedy routine - Uni-Boob, Bald, missing half my eyebrows and 2/3 of my eyelashes, puffy face, and TIGHT PANTS. Although I WOULD like to thank Jimmy Fallon for giving me a theme song.
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After four rounds of chemo, I have zero self-discipline when it comes to eating and exercise. My plan is to find a personal trainer after I recover from surgery in Septemeber; I need someone to boss me around if I want to get rid of the extra pounds on my hips and stomach. On the plus side, I managed to eat something healthy for lunch today, rather than the starchy stuff I usually eat.
Cold, I had that Jimmy Fallon/Will Ferrell song stuck in my head all morning!
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Stretch pants!
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Howdy all,
Day 8 past chemo 4 and it is kicking my butt big time. I am just exhausted no energy - just want to sleep - my stomach makes ungodly noises all the time and creates enough gas to launch a zeppelin - ughh. My MO decided to skip the neulasta shot this go around cause my ANC and WBC were always so high between cycles that he assumed that I would hold up - WRONG. Had to get nuepogen shot yesterday and now have to get a CBC every day this week ughh. So instead of paying for one shot I have got to pay for 4 nurse visits and at least one shot. IF and that is a big IF I do the last two treatments there is no way I am allowing him to skip the shot next time. I understand why he did it - he thought it was just one less thing to mess with my system - but I had reservations about skipping it and told him so - I guess I should have been more vocal about it.
Next Tuesday I have my liver function blood tests again and if they are any higher or even the same I will have already had my last chemo. I am just not going to chance destroying my liver when my MO keeps telling me that the most important thing that I am doing is the herceptin. I have thought this out and wondered if I was using the liver issue as an excuse to quit chemo and decided that I am not. I would be happy to get results of next weeks blood test that said it was functioning better and then I would do another one and then relook at the tests after.
Emotionally I have been in a really bad place this last week. I find myself crying daily - feeling sorry for myself. I just have so much stress with issues at work and dealing with the SE. I am really concerned that my job may not survive for much longer as I don't believe the company can survive for much longer - and I am talking a few months here at best. Don't know what I will do then - no income, no insurance and cancer UGH. Sorry for being such a downer - just needed to vent somewhere.
Great to some of us April sisters finishing or getting close to the finish line on chemo. I wish you all SE free days and littles bits of joy where you can find them.
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Linda, this is day 8 after infusion 4 for me too. I could have written your post!
At least you are not alone.
BTW I'm on Taxol and carboplatin too. the stats under my name are from my bc treatment, 3 years ago.
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seeing my onc tomorrow at 8:15am. Today while I still have pain it is a bit better. I haven't taken any pain pills since 11:30 last night. Tummy is still loose
I ate a lot of jello, an English muffin and a banana so far today. Trying to drink g2 and sucking on ice chips
Can't wait to see my onc
I am not a religious person but feel blessed that I have all of you with me
I too have been crying and feeling sorry for myself. Last night I told my hubby that I just wanted to die
Even now the pain is bad but I'm just not taking anymore pills
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football, ask your onc for another pain pill. I am on norco. I spoke to someone at the ACS, an onco nurse.
She told me not to be afraid of the pain pills, I just have to get through this. She said to ask for morphine if I needed it.
I just got back from my internist and he gave me an ekg and an Holter monitor. I'm really annoyed. Fifteen minutes and he's gone. I've got a complicated case here and 15 minutes is not a long time. Are there any caring drs out there anymore?
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Timbuktu asks, "Are there any caring doctors?"
I dunno - I'll ask my onc at my next appointment. Of course, I will have to wait for her to get off her phone. In the middle of me asking a question, she takes a phone call. I was so ticked last time, I just walked out. Now I have to call her to remind her to write the Arimidex prescription (or maybe not?)
On the other had, took the pups in for ear checks, and the vet called two days later to,see how they were doing ...
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Cold...thanks for posting "Tight Pants," it made me smile
And yes, I'm also wearing very tight pants, and refuse to buy a bigger size. The thing is, I haven't gained weight, according to the scale. But my puffiness is unmistakable...I can't even wear my wedding rings. I feel very pudgy!Linda...I'm sorry you're feeling down. I am getting more and more emotional myself. I feel like I should be happy that I'm almost done with chemo, but for some reason I'm not. I pray I can get the old me back when my treatment concludes. But part of me wonders if worrying about mets or recurrence will keep me pinned down forever.
I received disappointing news this afternoon. My MO feels I should keep my port in for the duration of radiation. What? Why? I spoke to his nurse, and she said it is his preference, so I'll need to talk with him about it on Wednesday when I see him. My port is uncomfortable and I was SO looking forward to getting rid of it sooner rather than later. If I can't get him on board with my thinking, I'll have the darn thing until at least the end of September
Maybe it's not a big deal, but I feel removing it is a milestone, a sign this ordeal is ending. Keeping it for 2-3 months longer than I anticipated makes me sad. I'm getting frustrated also with all the medical bills pouring in lately. Our insurance paid 80% of all my bills at first, but now pay 100% due to meeting our out-of-pocket max. But we are still living under a mountain of medical bills. We pay about $600-900 each month to doctor bills, and we haven't even made a dent in the stack...a few providers are threatening collections, even though we have been sending monthly payments. Cancer takes so much from us physically and emotionally, and now financially we are drained. We are living paycheck to paycheck, cutting back on everything (which is so hard with three kids at home), and it's still not enough. I'm so worried our credit will be ruined...another gift from cancer.
Ugh. Sorry to be a downer. But thank you for "listening." Hope you're all having a good day.
xoxo
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Brigadoon - I get restless leg syndrome too. It drives me nuts! I feel SO sleepy but my legs wake me every few minutes, so I don't feel rested. Lucky for me it only lasts one day...so far. The the steroids will kick in tonight and keep me up. Sigh.
I started growing fuzz on my head after A/C. Since starting taxol, a few weeks ago, it is falling out again along with my eyebrows. I'm just hoping to look semi normal by Christmas.
Linda - I'm sorry things are looking so dismal for you. This is the place to come to vent. I sure hope things turn around for you soon!
Sharon - Maybe we should go trick or treating as twins!
I am home from taxol #5. Going to try and get some sleep.
Wishing you all a better day! Hugs, lilyrose
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My internist said today "If you're getting side effects you should stop chemo." HUH?
I felt like telling him to look at this site. What could he have meant? Are there people on chemo WITHOUT side effects?
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Timbuktu...was he being sarcastic? I can't imagine what he would mean by saying that. My old MO (who I dumped several weeks ago), was very disrespectful and would often say things that I would realize later were meant to make fun of my complaints regarding side effects. I hope your internist can explain what he actually meant, because I cannot imagine he truly means for you to stop your treatment. These doctors...I swear they could all use "a day in the life of a cancer patient" training session.
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Omg timbuktu - that is just crazy about what the internist said - ummmm - is there any chemo without SE's?? I don't think so - maybe some are minimal but I mean it is poison for crying out loud!! Holy Moly... Some doctors just see patients as numbers - how many in and out in a day - I don't think they started like that but I have had too many like that in my life. It is so disappointing. I don't take that treatment anymore - I now speak up when I don't think they are giving me the appropriate time or attention. Hope your heart is ok - I had to wear one of those monitors for a week a couple of years ago - drove me crazy.
sharon - unbelievable and how rude - I really can't complain about my MO or his PA - they are actually both good about listening and spending a good amount of time with me.... and I LOVE my plastic surgeon - seeing him is like seeing a friend and I do feel he cares.
thanks for all your support - just such an emotional and physically draining journey we are on.
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Timbuktu: Omg..that is so frustrating. I think part of this site should have doc ratings. Like a Yelp or TripAdvisor for doctors. I can't believe how insensitive some of them can be. I have heard that comment from people I know - like "why do chemo if it does all this other stuff to you?"…bleh. Give me a break. Your response should have been "Thank God, you know of a miracle cure that doesn't involve poisoning myself to within an inch of my life! You must be a genius!!" Grrrrr!!
Swissmiss: If it makes you feel any better, I have to keep my port in for the year of Herceptin. I tried to talk them into removing it right after chemo, but they don't think my veins will hold for all the H infusions every three weeks for a year. Boo. I hate my port too. It's right where my bra strap sits and it makes sleeping uncomfortable since I used to sleep on that side.
On a positive note, I got a full night's sleep on a day of treatment and I might be able to pull that off again tonight! Yay me!!
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the question about doctors who care I can share my onc with all of you. LOVE him. He listens, cares and is just a wonderful person. When I sent an email about a lump at 11:30 pm I had an appointment the next am at 10am and I was 5 years out from my last diagnosis. It makes me sad to hear when people have problems with their oncologist.
. Day after taxol #5 and I am surviving. My counts are starting to rebound a little which is a good sign. My one big toe is a bit of a mess still but I am feeling okay so far this week. I know that Thursday evening into Friday will be the worst for my neuropathy and my hips will hurt a little bit but by Saturday I will feel better and Sunday I will over do it. Lol. This Tuesday will put me at the half way mark for taxol and 4 weeks out from my rads simulation which I am not happy about still. I need to make peace with the permanent blue tattoos that they will be using.
. I don't want blue dots all over my body. Then I get a whole two week break after chemo and then rads start all while still getting herceptin and perjeta. Let me control my excitement. NOT!!
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I'm curious about the gals on Taxol who are seeing hair growth. Are all of you doing weekly Taxol? I'm doing dense dose, and I still am bald bald bald. Or maybe my hair is so light that I can't see it? Who am I kidding...there's nothing there to see...LOL! I'm looking forward to my last chemo next Wednesday, and the possibility of HAIR. I've read Biotin is a good supplement to take to help strengthen hair and make it grow faster...is anyone already using this?
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Swissmiss - My hair started to grow in shortly after I finished the A/C. But after Taxol #4 it started falling out again. What I have is very fine and fuzzy. The onc nurses said it will likely all disappear again. I am on weekly taxol, 7 more to go.
I wouldn't trade my MO for anyone. He always listens, asks me if I have any problems or concerns and I never wait more than 10-15 minutes for my appointment. But my BS is my favorite doc. He is simply the most compassionate dr I have EVER dealt with.
My MO wants me to keep my port also. I'm not too worried about it. I've gotten used to it and it no longer bothers me. I developed phlebitis in my arm from just ONE infusion, so I need to use a port. Don't really want to get it out and maybe go through getting a new one put in.
Hugs, lilyrose
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Swissmiss I am on weekly taxol and it's there but fuzz still. It fell out after # 3 but is growing again. My toenails are also growing so I think they are related.
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To all struggling with finances...
I found online the company who makes neulasta and they offer a co pay assistance.. Also contact Susan G Komen foundation they have resources for co pay help.
I am off to round 3 of AC. Sigh! Weary already of all this! Anyway, I hope you all have light SE days.
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My hair started growing after AC. Finished taxol #2 on Tuesday. MO said I would get a head of fuzz but didn't expect more than that through taxol. I think my brows and lashes are still thinning but hair on my legs and chin (ughhh) have sporadic growth.
I never got a port because I was supposed to have 4 TC only. Phlebitis struck during my last AC and with the switch to 12 taxol I have some concerns biput onco nurse and MO tell me to use warm compresses and ibuprofen if needed. It's tolerable and at this point I don't want a port. Anyone have a picc line? That was an option suggested by my BS but I wasn't keen on that, either. Btw, I love all my docs- MO, BS, PS. I guess I am fortunate.
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It sounds like a lot of us are getting down as chemo takes its toll, even as the last infusion gets closer. I thought I would feel pretty good that I only have 2 more rounds of TCH (I'm not counting the year of Herceptin, which should be a piece of cake). But these days my good days don't feel as good. This is supposed to be a good week, but every day this week I've come home from work and just plopped on the couch. I'm not going out to eat or going for walks. (Ok, the hot, muggy DC weather might have something to do with that.)
Hugs to everyone suffering intense SEs right now. I know it feels like the light at the end of the tunnel is actually a train heading right at you, but there is an end to the tunnel, even if you can't see it yet.
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Jaimieh - I can barely see the tattoos. I found one the other day and it has been half a year since the procedure. I thought it was a deer tick it was so tiny.
Mompy - Most hospitals have Patient Assistance Programs that have monies available too.
mmtagirl - I hate the way my port sticks out and t still itches from time to time BUT I love the way it works for chemo. Would not go back.
I am so proud that I walked the dogs with my husband. We live on a private road so I just went in my nightgown and sneakers. SO FREEING!!
Going to try it again this evening. Trying to get rid of the RLS. If I am not active during the day, I have it so bad at night that I end up having to take a few hits of marijuana. Not that I mind that. Just don't want to use it as a crutch.
Had my 9th Taxol treatment yesterday. Woke up at 3 and couldn't get back to sleep. Cleaned the bathroom cabinets and drawers, wiped down the cobwebs. (busy spiders and I haven't bought Oil of Spearment to wipe the window frames with) vacuumed the upstairs and did two loads of clothes before 6. I may have to take a nap today!
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brigadoon- I guess I am upset because they use a bright blue for ink.
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Jaimieh - I know, mine are too but they just look like a small vein that might be close to the surface, if you can find them at all. Will they be where you can see them when you are clothed? I can see that that might bother you.
I am nearly 70 and have wrinkles and sags that hide just about everything
I shared this on another board but you might enjoy it. I am sure you are younger but the message is clear. Love us the way we are.
http://www.metaspoon.com/older-ladies-donnalou/
I hope you enjoy it.
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I will have them where I am not clothed.
. My friend went to the same rad doctor who is great but they look like huge pen marks. -
brig I love that song. It's so cute.
. Yeah I am still vain. I wasn't expecting them to be this large and the fact that my super clavicle is getting rads makes me blah about tattoos up there. I have two tattoos but they are strategically placed, and look real. . -
Jaimieh - Well, that does suck. How much would it cost to have them removed? That might even be covered by your insurance as a part of reconstruction. Since you are Stage 1 it would be nice if you could come out of this with this whole ordeal not being a blip on the screen of your life.
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this is my second blip and I was told that I am to never remove them. I have news you give me an ink blob and I will remove it. Lol. I guess it's another thing I need to get past but not happy about it.
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lilyrose - I haven't cut my hair yet because I still have even coverage but it is thin and I have to fix it just right to have coverage. I even have to wear a turban in the kitchen to keep my hair from falling into the food I am preparing.
I am reminded of the Dr. Seuss - "Oh the places you'll go." I have been places I never thought I would go but It is a hell of a ride. Good and bad.
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A. I DID drop my phone in the toilet this week...fortunately a clean toilet and grabbed it fast enough to avoid water damage. Lol, I wish I could've seen my own face as I saw it laying there at the bottom of the bowl, hahaha
B. Through no agreement from me, 3am and I have become fast friends. I'm on day 9 post infusion and I think the steroids have now permanently made it impossible for me to sleep more than 4 hours a night, at least until I'm done and my system flushes entirely.
C. I bought fat pants. Denim Levis capris. My advice, just get 'em. You can always use them later for fat days or yard work, whatever. It feels good to wear something you're not bulging out of. It was either that or steal my hubby's basketball shorts (which my daughter has beat me to).
D. Saw breast surgeon yesterday. Brought up my thoughts about foregoing round 6. Didn't fly, lol. Best she could offer was to postpone it if I needed more time to recover from round 5. Hell no, I said. Bring it. Ugh.
Today I'm going to pretend I'm well. I'm still feeling round 5 but I'm about 75% better. Going to hang out with my mom and have lunch by her pool. First summer thing I've done yet. Have a great day, girls! xo
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Jaimie - maybe you can get some of those false moles that people use to wear and turn them into beauty moles when you have dresses that expose them. Robert Redford has several bumps on his face but he is still handsome. I had a mole on my neck that I had removed in my search for perfection when I was young. I have always been sorry I did that. It was very sweet. You can probably get some stage makeup or there are several make-ups for scars, etc. and you will never see them.
I suppose they want them to stay in case you need rads again (Never I hope) It would help them to know the exact location of the prior rads.
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For comfy pants, you might want to check these out from llbean : llbeanperfectfitpants
They come in several different styles, and even though they are stretch pants, they can be worn out to dinner and such when paired with a nice top.
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Sharon - Those are my favorite pants! I have had them for years...used to wear them in the olden days when I had my period. Always called them my comfy pants. Since chemo I bought several new pair and now wear them daily, I love my jeans...but can't wear them as my waist has expanded beyond the comfort zone. I hope when I'm feeling better I can walk off this new belly!Brigadoon - I love living out in the country. I live on a dirt road and I do have neighbors, but we all live on several acres so we aren't that close to them. I walk my dogs all the time in my nightgown! lol I used to see older women do that and thought they were crazy old ladies! Now I am one of them. Not giving a crap about what people think of me came with age.
Good idea about the turban!Longisland - The steroids are a pain. I was up half the night because of them and restless leg syndrome. My MO gave me Ativan to take but I am saving that. I don't want to use it as a crutch unless I really need it.
Wishing you all a better day than yesterday! Hugs, lilyrose
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swissmiss, about a month ago my hair was so straggly I couldnt stand it so I shaved my head.
Now a month later, it has grown about a half an inch, but not normally. It is not thick.
to tell the truth it worries me that it can grow. Anything that can grow seems to indicate that fast growing cells can survive this. Damned if I do, damned if I don't.
Yet, I can't help appreciating SOME hair growth
Can't wait till this is OVER!
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Timbuktu- There are numerous people on the boards who have had hair growth AND are NED. Don't worry about that one.
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Timbuktu, I had the same worry when some of the hair on my head didn't fall out and kept growing. It's not supposed to be doing that! What does that say about any fast growing cancer cells that might be floating around? Oh the mind games we torture ourselves with!
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My nails are growing faster and stronger than ever...and I've had the same sinking feeling that if my nails can survive chemo, then other evil, fast-growing cells can persevere too
And because my original MO never ordered a PET scan or bone scan, I can convince myself those cancer cells are everywhere, undetected. This really is hard on us...not just the physical toll, but these mind games. -
Thanks Brig! LOL You are talking to a world class worrier!
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Timbuktu - Guinness Book of World Records kind?
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Hi Ladies! I finished my 4 TC a week ago July 2. I am already feeling the anxiety.... My MO is not recommending any scans and take a wait and see approach. I start tamoxifen in 3 weeks. I have not lost all my hair. I had a 1/8 buzz and still have stubbles. It seems as though my hair growth STOPPED but I did not shed hair after my 1st round. My nails are also still growing. I have had very little bothersome side effects rounds 2-4. I've only had taste changes and minor aches and pains. This worries me greatly even though I should be grateful. UGH!
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Brigadoon: I was having RLS badly too and started taking Magnesium with 'dinner' and as long as i'm consistent with it, it does seem to really help. It's the worst. Ask you MO about it, maybe?
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Hi All!
I love my MO!!!!! Here is my update;
Today at 8:15 I was at the hospital for my appointment with my MO and his Nurse - Angel #2. I was in such pain this morning having woken up at 2:30 in the morning for yet more diarreah which has just about ripped me open and left me with a burning stomach and more pain elsewhere.
In walks the Dr. I start to cry and he hugs me. I open my diary and tell him the hell that I have been going through - trying not to cry.... I felt like a little girl talking to my dad. I told him everything. The aches, the pains, the constipation, the diarreah, the minimal eating and drinking, the percocets. Upon review, the pains really kicked in last Friday night. I told him that I had lost 5 pounds since Saturday and that last night my temperature spiked to 100.4 for approx 2 hours last night. He listened to everything - did a physical exam; asked a few questions. My hubby said that the Nurse had tears in her eyes.
He explained that my body was reacting negatively to taxotere. He explained that he would have me feeling like myself again very soon. I even asked him if I was going to die. He said absolutely not. I was sent upstairs to the chemo area with an order for an IV. When I got to reception, I lost it and just started crying. I was in so much pain. A Nurse held me for atleast 10 minutes, then rocked me and hummed to me. Then I cried even more because it made me feel like a little girl with my mom.
Once they calmed me down, they took me to a stretcher, gave me warm blankets and I was put on a 3 hour IV of fluids, a bit of morphine and zantac. They also took some blood. I slept a bit, ate a bit and was told that I would also get Home Care for the next 3 days so my port was left active. My hubby wanted to stay with me but I sent him to work. My girlfriend picked me up and we went out to eat. TO EAT!!!!! I felt approx 80% by that time - I had half a veggie omlette with some potatoes and white toast with strawberry jam, apple juice, water with lemon and a green t. That was at 2:00 and I haven't run to the bathroom yet!!!!!!!! I was told that I should take a percocet every 6 hours and that I should be at 100% before the end of the weekend.
A week from this Tuesday, I will meet with my Onc to discuss how my last 2 chemos will be managed. At this point, he anticipates that I will be given taxotere weekly with the herceptin still being every 3 weeks. Weekly! Ugh!!!!!
The Nurses were awesome, my Onc was awesome - I can't believe how much better I feel in such a short period of time. I swear to you that I was ready to die. I couldn't take anymore agony!
Now I look back and say why did I wait so long? My answer - I always thought that tomorrow would be better - that I had to endure a few days of hell. I would wake up feeling a bit better then get kicked in the teeth later in the day. Plus I dreaded the possibility of having to have an active port and to be hooked up to an IV. Well, it happened anyways!!
Thank-you to all for holding my hand, giving me hugs and for sharing your kind words and sentiments. I might not be completely out of the woods yet, but am getting there!!!!!
Thank-you all!!!!
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Oh football! I'm so happy you are feeling better and that you have good medical team.
What a horror! It's hard to gauge, isn't it? There's misery, more misery and the most misery.
How do you know what's normal and what's not? What will he do about the Taxotere reaction?
But thank God you got help!
Can't wait for this ordeal to be over for all of us!!!!
Just wondering, how many infusions of taxol/carboplatin is everybody getting?
3? 4? 6? It seems to vary so much.
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footballnut - heartwarming to read the relief in your "voice." So glad you got some relief today. Please don't hesitate to call them if you need more help later!
Chknfeet- Sounds like you are a week behind me with very similar SEs, or lack of them in some cases. Each of us reacts differently to chemo, and there is research out there that says there is no correlation between harshness of Side Effects and effectiveness of chemo. Since we can't immediately test to see how effective chemo was, all we can do is have faith it worked.
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Chknfeet and Sharon, this sounds just like my journey. I get my last TC tx on Monday, and hopefully the SE will continue to be minimal. The most SE I've had are the yucky/white mouth, temp loss of tastebuds, and I did get hives after tx 2 and 3, but got under control with Prednisone. I lost most of my hair after round 1, but still have some and it has stopped falling out. eyebrows and lashes have thinned, but nails have continued to grow. Sharon thank you for posting that there is no correlation btwn harshness of SE and effectiveness of chemo, because I was really starting to worry. I have just learned that I will not be needing radiation, which is great to hear, but still wonder if I've done enough. Oh well, I will continue to have faith that I have done everything I can and that God will take care of me.
Football: So glad you are feeling so much better. I've been worried about you.
Hope everyone is having a great day w/minimal SE.
Nancy
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football, your post brought tears to my eyes. So glad to hear you're finally getting some relief.
Timbuktu, I get Taxotere/Carboplatin every three weeks for six rounds.
Today I had lunch with a good friend I worked with in Afghanistan. It was so great to see her and I haven't laughed that much in a while. That really lifted my spirits.
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footballnut, I had tears reading your post. So glad you are doing better, and we can hear the hope and resemblance of the Footballnut we adore!
Please check with your MO on whether you must stay on Taxotere or if you can move to weekly taxol. Believe me, there is a huge difference in SEs. I couldn't handle Taxotere and was in the hospital for 4 days on IV with neupogen shots daily, terrible D and much of what you describe. Moved to AC for 3 rounds which sounds horrible but much Better than. Nasty T. Weekly taxol is a breeze in comparison, at least so far. Don't suffer!
We luv you!
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Sharon - Thanks for the reassurance. Its crazy the things that fly through my head sometimes. Today my back side feels tight, like I've been working out. Not sure what is going on since its been over a week and sure SE have not started again. Its doesn't help when a coworker tells me to make sure I'm not on a clinical trial and getting placebo since I look perfectly fine. Seriously, some said that to me.
Nancy - I've had the yucky white mouth and crazy tastebuds as well. I am itchy all over today but not sure if that's from stress. I tend to break out in hives when I have anxiety. I haven't had any allergic reactions since starting so thinking its stress.
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Footballnut - I am SO glad you are finally feeling better! Please don't ever wait so long again if you are feeling bad! Must have been nice to eat again!!!! Please take good care of yourself.
SwissMiss - Please don't worry! How much your nails grow has nothing to do with how effective your chemo is. I know because I asked my onc nurses about it. They chuckled and said they have heard that question hundreds of times! Think positive!
Wishing you all a good night! Hugs, lilyrose
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Footballnut, What a relief to get such loving care. You deserved every bit of it girl!! Yes, you need to get your MO's plan for the next go round so you never have to suffer like that again. Huge gentle hugs.
Paula
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this has got me nuts... Eyelashes growing on right eye only! This just looks silly. Anyone else with such cosmetic afflictions?
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FBN - so glad you are feeling better!
Swissmiss - I am on DD Taxol - have had 2 of 4 treatments so far. This is after 4 DD A/C. I shaved my head on day 16 of A/C. Never lost all of the stubble and now it feels like I have more stubble .. In some places it feels slightly longer and in other places it feels like new stubble. The nurse said it is possible, but that I might lose this again.
So far I still have my eyebrows, but my eyelashes look thinner.
My fingernails were GREAT on A/C. They don't feel as strong on Taxol but they aren't discolored (yet?). However I can "feel" the tips of my fingers and my fingernails when I type. Not numb, no tingling, but aware of them
Off for bloodwork this morning. My hemoglobin has been going down one point very week since my blood transfusion last month. Down to 8.5 on Tuesday which explains why I felt so tired all weekend! If it is still on the downward trend today, I will get another transfusion on Monday so that I can continue with chemo on Tuesday.
Only 2 more treatments ... Only 2 more treatments ..... Only 2 more treatments ...
I just keep telling myself that so that I can get through this! :-)
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Footballnut I am so glad you are feeling better!
I still have my eyebrows but grow stubble on my head which is now falling out . Legs and armpits still smooth yay!!!
I had round 3 of AC yesterday! I asked my MO about my spacey and tiredness I get for 6 days! All I want to do is lay down which is not good at work . I am going in late today so I can nap before a bit. I don't have to worry about bed head though!!!! Just fix my make up and do....
Funny story yesterday. I dad forgotten for the moment I wasn't wearing a host or scarf and answered the door to the UPS guy! Poor thing did a double take! He must have gotten quite the shock!!! I suppose that woke him up!!!! And gave him a story to tell!!! Lol I just don't hope I don't do that at work if the guys need help at work in the parts and accessories store!!! I take if off sometimes in my office to scratch my stubble!
For the icky mouth nurses have told me a few hints:
Use arm and hammer with baking soda sensitive brand. Biotine rinses a few times a day. Oh brush your tongue! Use plastic utensils to eat and add a bit if lemon to water ( I heard that here too).
Well here is to less SE for everyone I will raise my glass of pomogrante juice to all!!!!!
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I wear a dorky hat. The other day a woman looked me right in the eye and said "How are you doing?" She knew. It surprised me, it made me feel good. Someone understood and reached out in kindness and concern. Its really like being in a club that no one wants to join. I think I'm coming to terms with it because I'm not embarrassed anymore. Once I can accept it, I don't care about others reactions so much.
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Hi All,
Friday's update -
Homecare called shortly after 9. A package of supplies will be delivered to my home prior to 1:30 today hopefully. Then a Nurse will come and hook me up to an IV for 4-6 hours so that I can get more fluids. She will return and un-hook me tonight. This will continue for Saturday and Sunday at which point my Port will be de-accessed and I can take a shower again!!!!! :-)
Today I feel about 80%. Still some lingering discomfort but nothing like it was. I ate dinner last night - chicken and coleslaw! mmmmm Coleslaw!!! I ate breakfast this morning - I want to eat! My tummy is still not 100% and is still loose but I am feeling so much more like myself albeit tired.
It is so true - how do you know what is a "normal" reaction until you have experienced it yourself? I have had pain and discomfort my whole life in my hips and lower back. I just kept plowing on. Yesterday, the Nurse explained that I must stay ahead of the pain. I should take the meds. My problem was that I didn't even try percocets until Monday morning at 3:30am. Up until that point I thought that extra strength tylenol would be enough. I just hate the thought of popping pills and have to get over that. In my worst dreams I never thought that things would progress to the point that they did.
I never even thought that the burning tummy could be reflux. I have a mild case of reflux that flares up every so often and pop a prevacid for a week. Then I'm all good. When I chatted with hte nurse about the Dr giving me zantac, she explained that the burning was reflux. I always thing of reflux as acid backing up into the throat and forget that this includes acid burning in the stomach as well. She suggested that I pop a prevacid every day and that this well help prevent this from happening. I never even thought to ask about this or discuss with my Onc. All things that you learn.
What I truly love about my medical team is the kindness, empathy and support that I am getting. Not once did anyone point fingers or make me feel like I had brought this on myself. Even when I said that I was stupid to ignore this like I had, they jumped in and disputed my way of thinking. We all know that there are some very poor bed side manners out there so I am thankful.
I have complete trust and faith in all of them - especially my Oncologist who leads the charge. His hug meant the world to me. I will discuss the go-forward plan a week Tuesday. A nurse explained to me that unfortunately, others have gone through what I did and explained why it is so important to raise concerns early. I did contact my MO's nurse Monday and she suggested an IV based on my feedback. I turned it down thinking again that "tomorrow would be better".
Plus I didn't want to be a bother to anyone. I didn't want my hubby to have to take time off of work. As it stands, he ended up coming home from work Monday to be with me and took me to the Dr yesterday. I worried him sick with my pain and crying so really did nothing good for anyone.
Hindsight is always 20/20.
So, now I just feel tired. Still have some pain in my tummy but now I'm on the side of healing.
Two more treatments!!! Can't wait for the football season to start because then my chemo is behind me and I can focus on better things!
I propose again that a get-together must happen once we are all done our treatments. I'm definately in!!!!!
Love you all!!!!
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footballnut...so glad to hear you are being taken care of. I agree, it's hard to feel like you're constantly taking pills; but this is temporary, we will all get through this together.
Lemonade...i actually still have a very thin head of white blonde hair that never fell out after I clipped my hair after round 2 of AC. I wouldn't have called it hair, but maybe if it was darker it could
My mom says this is the same head of hair I was born with...LOL! I guess I'll start fresh like a newborn babe after my last infusion Jbokland...I definitely have more eyelashes and eyebrows on my left side. I think it's because I sleep pretty much on my right side all the time. But I have unfortunate whitish blonde lashes and brows, so I don't really notice it.
Lily rose...I think I'll just try to be thankful for the strong nails and not assume it means the chemo isn't working. Thank you for the reminder
Thank you everyone for sharing your journey. This forum is such a blessing for me...I am never alone
I have my last chemo this coming Wednesday. I'm excited and way too anxious to get this over with! My sister is insisting I do the customary sign-holding photo to commemorate the event...I have simply avoided getting in front of a camera since I lost my hair, so we will see about that. I'll post here if I actually do it xoxo
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Glad to see Footballnut is on the mend. I guess this is a lesson to all of us to not ignore anything. I was told to call over ANYTHING even if we think we can handle it. They take care of a lot of people and have see and heard everything. Although I was disappointed after my MO visit yesterday (after an 1 1/2 wait) that he had no answers for my overly spacey and tiredness I experienced last time.
I went ahead and am working only 1/2 day today, came in at noon working til 4:30, so amazingly enough I slept til 7am, I am usually up at 5am. I feel better today than I did this time after the last infusion. I am monitoring the nausea. I took the steriods but not the prochor...something. I did take an ativan last night and they gave me one in the infusion room. I have been watching my fluid intake as well, I wonder if last time I didn't drink enough or sleep enough.
Anyway, funny story...
Yesterday morning, I was just puttering around the house bald...and the bell rang, it was UPS. Poor guy did a double take. I bet I woke him up!!! Oh well this is life.
Tomorrow is Neulasta early..first in first out is the name of the game there. It is a very very busy place. I go the Roswell Cancer Institute here in Buffalo, NY. They are the best in the area which why we wait.
I have my last AC on July 24th then onto Taxol for 4 rounds every 2 weeks was the initial plan, we shall see. Estimated finish date is Sept 18th. I am gonna take cake and ballons to the infusion room. The nurses are fantastic. It seems you all go weekly for 12 weeks. Then onto radiation everyday for 5 weeks...yikes!!!!
May you all have lighter SE's hang in there....this boat will pull into the wellness harbor soon. Then let the party of our lives begin. It does shift your priorities in life. I am pondering them now...
First on my list is to do more fun things with my wonderful husband. He even takes the time when we are in the infusion room to go visit people who are there alone! !!! He has been wonderful through all of this: laundry, I wash he take to laundry mat to dry, yep our dryer broke can't afford to replace yet with those pesky medical bills looming over our head. He cooks every meal...but he is the better cook, my thing is baking.
2nd would be my girls, when they have time in their busy lives.
Work on my children's books I have going. Doesn't show here but I love writing stories for children, I have many in progress. I want to work on them now while I have a lot of sit time, but my brain does not cooperate...it seems to be bouncing down the freeway somewhere wanting a vacation...maybe on a beach...salt air, wave crashing...ahhhhhh the relaxation dream......
Ok gone on to long..back to work!!!!!
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Glad to see Footballnut is on the mend. I guess this is a lesson to all of us to not ignore anything. I was told to call over ANYTHING even if we think we can handle it. They take care of a lot of people and have see and heard everything. Although I was disappointed after my MO visit yesterday (after an 1 1/2 wait) that he had no answers for my overly spacey and tiredness I experienced last time.
I went ahead and am working only 1/2 day today, came in at noon working til 4:30, so amazingly enough I slept til 7am, I am usually up at 5am. I feel better today than I did this time after the last infusion. I am monitoring the nausea. I took the steriods but not the prochor...something. I did take an ativan last night and they gave me one in the infusion room. I have been watching my fluid intake as well, I wonder if last time I didn't drink enough or sleep enough.
Anyway, funny story...
Yesterday morning, I was just puttering around the house bald...and the bell rang, it was UPS. Poor guy did a double take. I bet I woke him up!!! Oh well this is life.
Tomorrow is Neulasta early..first in first out is the name of the game there. It is a very very busy place. I go the Roswell Cancer Institute here in Buffalo, NY. They are the best in the area which why we wait.
I have my last AC on July 24th then onto Taxol for 4 rounds every 2 weeks was the initial plan, we shall see. Estimated finish date is Sept 18th. I am gonna take cake and ballons to the infusion room. The nurses are fantastic. It seems you all go weekly for 12 weeks. Then onto radiation everyday for 5 weeks...yikes!!!!
May you all have lighter SE's hang in there....this boat will pull into the wellness harbor soon. Then let the party of our lives begin. It does shift your priorities in life. I am pondering them now...
First on my list is to do more fun things with my wonderful husband. He even takes the time when we are in the infusion room to go visit people who are there alone! !!! He has been wonderful through all of this: laundry, I wash he take to laundry mat to dry, yep our dryer broke can't afford to replace yet with those pesky medical bills looming over our head. He cooks every meal...but he is the better cook, my thing is baking.
2nd would be my girls, when they have time in their busy lives.
Work on my children's books I have going. Doesn't show here but I love writing stories for children, I have many in progress. I want to work on them now while I have a lot of sit time, but my brain does not cooperate...it seems to be bouncing down the freeway somewhere wanting a vacation...maybe on a beach...salt air, wave crashing...ahhhhhh the relaxation dream......
Ok gone on to long..back to work!!!!!
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Two more treatments…two more treatments…two more treatments…
This is my mantra. It's Friday, I had Taxol #10 on Tuesday. I'm finally getting out of the big D.
Football: so glad you have faith in your med team, it's so helpful. Super glad you're feeling better.
Swiss: I have fast growing nails on this, but hair not so much.
Jbokland: My eyelashes and eyebrows all bit the dust last week after a slow fade. I have more lashes on the left than right, but have given up with any type of mascara since it looks ridiculous.
Mompv: On vacation (we were on a cruise) I got about 2/3rds down the long hallway before I realized that I forgot anything for my head. And our cabin steward saw me many times without the hat and on the last day - he said you look great with our without anything on your head! He was so sweet!!
My 7 y/o son's day camp counselors asked him today if his grandma was picking him up again. I went there a couple times with just a scarf, a couple of times with a wig. I guess that is too much to comprehend for some. He said no, it's just my MOM. I can't decide how offended to be. I guess I could be his grandma since I'm 43? UGH!!!
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jhodro- yowch! Hate it when that happens! Slap that counselor!
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hemoglobin went from 8.5 to 8.8 so no blood transfusion! I hope it continues to go up because I am so tired when it is this low!
Decided to do some clothes shopping and run some errands after the blood draw ... Well, got that done and then slept the rest of the afternoon. So tired of being so tired! :-)
Have a great weekend everyone ...
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Good News about no transfusion, MakeLemonade.
Jhodro - those silly counselers. But, if I showed up bald to pick him up, they would have asked him if Grandpa was coming ...
Mompv - sounds like your husband is a very nice guy. Mine does all the cooking too - even before all this started.
Wondering how LovebeingNana is doing? Last we heard, she was on vacation.
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Hi Ladies - It's been awhile, but I feel so at home here!! It looks like most of you are all getting through. It's hard to believe we began chemo back in April now. I am happy to report that my last round of TC was 6/9 and can share that my energy is really back a month later. I was wondering how long it'd take, but I'm really starting to feel more like me again :-) Next up is TE to implant surgery 8/25...yay!! I hope you are all able to enjoy a little summer.
Hugs!!
Holly
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Hi ladies, for any of you who had hives, what did you take or do to provide relief? I didn't have allergic reactions with any of the first 3 but 8 days past the last treatment, its confirmed that I'm having an allergic reaction. It started with a rash on my head and mild itching throughout, then over night started getting really bad on my hands to the point that I couldn't sleep and had to take today off for a sick day. Now its all over my legs and starting on my arms. The hives are so bad that its making it hard to walk due to swelling at the knee and toes. My hands have swollen so much I can't put on my wedding ring. My MO prescribed Medrol 4mg, 6 day pack. Started it late morning and so far barely any relief. I'm at a loss. Everytime I think my SE are mild, something happens to make me eat my words!
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Chknfeet sorry to hear about the hives. I was prescribed Prednisone for 5 days and still took otc Benedryl and a topical otc cortizone cream to help with the relief. It did feel better after a couple of days, but continued taking the otc Benedryl because I just didn't want to feel the hives return. Mine got pretty bad as well. good luck and I hope they go away soon. My hives started day 10 after round 2 and day 5 after round 3.
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Hello Ladies! Just trying to catch up on everything here.
Footballnut - ditto what everyone else said, and HOORAY for feeling better! I was worried about you, and I am SO HAPPY that your medical team is so amazing.
jhodro - I can not believe how stupid people can be. Or maybe that camp counselor needs glasses? I sincerely doubt you look like anyone's Grandma in a scarf or a wig or anything else. Sometimes you just need to roll your eyes and mutter "IDIOT".
Holly - THANK YOU for your update. It is super reassuring to read that there is a Return to Normal coming for us all! And congrats on being done!
I went out for dinner with a friend last night, and we wandered around a bookstore for a while. It was lovely. But today, I am retaining fluid in a BIG WAY. I have CANKLES, Ladies. Eeek! I haven't had this much swelling since pregnancy! Wow. It's disgustingly fascinating.
Some BIG NEWS. Remember a while when back I mentioned that my FABULOUS husband told me he was buying me a car when I've finished chemo, and I totally thought he was joking, but he wasn't? Well, next Friday marks my LAST ROUND of chemo, and yesterday, my husband kept his word. I brought home my brand new Honda Pilot!!!!! We've named her Lucy (after Gru's girlfriend in Despicable Me 2 - "Lipstick Taser!!!!") and I LOVE HER. I have seriously not stopped smiling since yesterday. Even the cankles can't bring me down.
I have the BEST HUSBAND EVER.
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Thank you Cold!! I copied your saying a few posts back about putting your crown on and walking away like a boss and posted it to my facebook - I LOVED it!! I remember so many days just wanting so badly to feel like myself again and have the energy I did prior to my surgery and chemo. I was worried it'd be different or less than I had before - I really hope to give you all some encouragement when I say that it's slow, but day by day you start feeling a little better. There might be a few set backs, but I promise it really does happen!!! :-) Congratulations to you also on almost being done!!! AND THE NEW CAR!!! You look fantastic!
Now I just need to get used to these chemo induced hot flashes - whew!!! I used to be such a freeze baby (especially here in WI), but oh boy....I've become a furnace. Kudos to you ladies who have "been there, done that" through menopause (or from chemo) and I know what I'm talking about!
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Hollyhope...I cannot believe how these hot flashes are disrupting my life. I feel like I should take 4-5 showers a day, just to feel fresh after all this sweating. Ugh.
I am 45, and about a year ago I started occasionally (maybe a few times a month) experiencing hot flashes, but these chemo hot flashes are way more intense. I am wondering what the likelihood is that I'll just stay menopausal when chemo is done. And if I stay in "chemo pause," does this mean I won't produce estrogen/progesterone? My cancer is ER+/PR+, so that could be a good thing, right? Boy, I have lots of questions these days! My last chemo is on Wednesday, but I've a long way to go with figuring all this out
Hope everyone is having a sunshiny simmer day...it's 100 degrees here in Tulsa, so I'm planted firmly on the sofa with a good book
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Oh MAN, I hear you about the hot flashes. Those things are killing me! It's like my insides are on fire, and I might spontaneously combust at any moment. Swissmiss, I hadn't even thought about them continuing AFTER chemo. Yikes! I'm only 39, so maybe the chemo-pause won't be permanent?
Friday is creeping closer, and I am both excited to be finished chemo and dreading another trip to The Dark Place at the same time. I keep reminding myself that THIS time there will be NO NEXT TIME. And it's funny, because while you're in the midst of chemo treatments, time moves along so SLOWLY, and you feel like it will NEVER end. And now, as I'm reaching the finish line, I look back and think: "WOW. I can't believe I'm already here." And also: "WOW. I did that. I survived it. I am SO much stronger than I thought." I'm high-fiving myself a lot lately.
Holly - That saying with the crown and the boss was originally shared on my FB page by a friend of mine who recently battled skin cancer and won. She is incredible, and has been one of my biggest cheerleaders.
Hope you all had a wonderful weekend!
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Cold you are so correct in how slow yet how fast this journey has gone. I have my last tx tomorrow and am excited and dreading it at the same time. Good luck in your last tx and here's praying for minimal SE for all.
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Hey Swiss - Here is what I have been told about chemo-pause from my MO. I am 36 so too early for real menopause, this should last 6-12 months and then I'll start getting my period again and the hot flashes should stop (or at least slow down greatly). I also just started Tamoxifen which makes the hot flashes even worse, but that too should normalize around the 9-12 month time frame.
I'll also share that about 3-4 weeks after my last chemo I went through a really 'blue' phase of just feeling down and depressed. It really surprised me!! I mean here I was, all finished with chemo and cancer free and I was feeling down and sorry for myself. What the heck was that?!?!? I guess I was just so focused on each "next" chemo treatment that there were some feelings in there that needed to come out. Anyway, I share in case it happens to anyone else. Thank God it was short lived - maybe 3-4 days.
Congratulations Nancybel!!! Yay!! and Cold on Friday!! :-)
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Congrats to those of you finishing up today and this week!!!! Amazing journey, and you made it through.
FATIGUE - yech. We leave Florida to drive to Maine tomorrow. I have yet to pack. I feel just fine - as long as I am sitting in a chair. When I get up to do something, my legs feel like anchors, and I need to sit after ten minutes. I feel like it's a Catch 22 - I need to exercise to get strength back, but I don't have the strength to exercise!!!
So now, I better get packing ...
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Hot flashes are. the. worst. I am 43 and I too wonder if this will be a way of life for me? I had about a month solid of not-chemo-pause..but since May I've been off the hook there, but have started in the last couple of weeks to have the hot flashes actually wake me up. And if I'm wearing my wig when I get them, it's really uncomfortable. I'm like radiant heat in my bedroom so we also had to kick up the air a few notches so the hubby could sleep. I have one more Taxol tomorrow and then my final one next Tuesday. Yay for everyone finishing in the next days/weeks!!!! Hoping for quick SE resolution and on to bigger and better things.
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hi all
It's Monday and I'm feeling more like myself albeit a few minor things. I'm losing my eyelashes and eyebrows are thinning out and my eyes feel "sticky". Tummy is much better and my tongue isn't burning so much anymore. The back of my neck still feels clammy off and on and I get the odd chills. Sometimes at night I'm on FIRE but not sweating
And I'm HUNGRY!
We had a BBQ on the weekend and I ate 2 Nathdns hotdogs with buns - they gotta be Nathan's!! - some pasta salad, chips and a piece of chocolate cake. I even drank 1 1/2 bottles of Pepsi. Felt great!!!
My friend gave me a book called "eat to beat cancer". I told her today that according to this book I'm already dead. Lol
I just can't buy into all of this stuff. Go vegan, live on rabbit food etc. I believe in moderation. If I can't eat my junk every now and then I'm not living!
A friend of mine took me on his motorcycle during our BBQ. It was awesome! It felt so great - until we got pulled over for speeding. Lol
Today I was on the treadmill for 40 minutes and did arm weights for 1/2 hour
A week wed in my 2nd to last round of chemo. I'm scared sh*tless! I'll see what my onc has to say regarding proposed changes to my treatment. I think that I'll be getting taxotere weekly for the remaining 6 weeks. A nurse told me that most women tolerate this much better.
For now I'm going to enjoy my week! 😊
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Oh, the hot flashes! I get them throughout the day and during the night. Sunday I had found the energy to get off the couch, put on some clothes, and go for a walk. But on my way out the door I had a stupid hot flash and realized I did not want to be outside in the hot and humid DC weather when the next one hit. So I chickened out and went back inside. Lame, I know.
I'm in the chair tomorrow for 5 of 6. I've been feeling anxious about it since last week. I'm not sure why. I'm feeling tired and down all the time now so even my "good" days don't feel that good anymore. Even simple exercises make my arms and legs feel like I just did a triathalon. All this means I don't want to do anything or go anywhere. If I wasn't still working I think I would go days without ever leaving my apartment. Again, lame. My sister arrives on Friday to help me while I'm in the dark place.
Just two more chemo treatments. Then the joy of surgery.
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EverForward- You can do this! I know how you feel....I was googling 'quitting chemo' when I only had one of the AC treatment left.
It looks like you have had a lot of surgeries already, are you having a MX this round?
Stay strong sister. You never know how strong you are until being strong is your only choice.
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One thing I've learned though all of this is to not get too down on myself for sitting on the couch all day long. We're going though a lot... It's been a huge change for me because I used to NEVER sit down, unless I was at work. I just keep telling myself that this is temporary and we'll all be back and better than ever real soon! You ladies hang in there...so close!! You can do it!! Hugs!
Holly
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In the chair for 11 out of 12. I was totally procrastinating coming here. But now I'm here, I'm so looking forward to getting through to next week, my last!!
Hope you are all feeling good today!!
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Hi all,
Sharonde, thanks for sharing the light at the end of the tunnel!
Linda505, I'm so sorry you have job worries on top of everything. That is not fair. Hope things are looking a little better.
Jaimeeh, are you at Hopkins by chance? (I understand if you don't want to get that detailed in a public forum!) I only ask because I love my MO too. And my mom loved hers.
Footballnut, sounds like you got some true compassionate care from your nurse - so glad to hear it. And glad you are feeling well enough to exercise -- I'm sure that will help everything!
Jbokland, my top eyelashes have only fallen out on one side so I have that same awesome look, LOL.
Jhodro, can't imagine from your profile photo you being taken for a grandma. I had the same experience with the teenage clerk when picking up some donuts for my kids (no, not my grandkids!) at the beach. Teenagers can be so clueless. At least she felt embarrassed about it.
ColdinCanada, congrats on your new car! That is awesome!
Hollyhope, I had heard that bc patients sometimes have a tough emotional reaction when they get done with tx. I could see that, because we are so focused on getting better and getting through tx, that we may not have time to process our emotions about it. Hope you are feeling better.
Everforward, yay for a sister visit! My mom and sister have both visited from across the country and it has helped a lot.
Sorry for being MIA. I had my first Taxol on Thursday and thought everything was okay, but no, I guess that was just the steroids talking! On Sat. I spiked a high fever and it has pretty much been going up and down since then. I went to urgent care on Sat., and spent the night in the ER on Sunday, and all the bloodwork shows normal. I am finally back to work today but promised my onco nurse I would call if the fever spiked while on Tylenol. Sitting here looking at 102 (down from 103 30 minutes ago -- it is dropping fast.)
Trying to rationalize not calling yet . . . Just don't want to deal with the disruption to our lives -- we have 3 little kids so we have to impose on our friends, etc., just to go in and wait around for bloodwork. I saw online that fevers, chills and body aches can be a normal side effect of Taxol -- has anyone experienced that?
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lena- are you icing during your Taxol treatment?
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Jbokland, I had an invasive tumor removed in February, but after 2 more lumpectomies she wasn't able to get clear margins (pesky DCIS). So I'll have a mastectomy some time after I finish chemo.
Thanks, everyone, for the hugs and encouragement. I'll get through this. What other choice is there?
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EverForward: So true.
Lena: Thank you!
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Just about to have my 2nd round of AC. I think I prefer the Taxol/carboplatin to AC. Anyway, I wanted to stop by and let you ladies know about temporary eyebrow tattoos! My mother in law brought me some and oh my, they are so easy! Here are a few links that I found online.
http://www.amazon.com/gp/product/B00EUG7ZUS/ref=oh...
http://www.curediva.com/chemotherapy/lashes-brows/...
Hope this helps. Feel free to pass it along
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Hello ladies! It's been a while since I've posted, but I've been reading all your posts daily. I think it's pretty cool that a bunch of you are done or almost done with chemo, and that time has flown since April when we all started. Before you know it, it'll be April 2015 and we'll all be looking back on this as just a small blip in our lives as we carry on and return to life as it was (or as close as possible) pre-chemo.
It's a beautiful 75 degree day here in St. Louis, so I'm going to go take a short drive to the pet store with the convertible top down, to get some pinkie mice for my daughter's snake soon. I know they say we're supposed to avoid sun exposure, but I think we need some in order for our bodies to make Vitamin D, which is good for us. I drove about half hour in the sun last week and I think I tanned a little bit, but no burn.
I want to thank those of you who recommended the Buff head coverings. It was a LONG time ago, so I don't remember who mentioned them...sorry! I now have 2 and find myself wearing those a lot because they are easy to put on and take off, and easy to wash. Plus they're cooler for summer.
Everforward: My good days aren't as good as they used to be either. Starting with treatment #4, I've felt like I get tired in general a lot easier & have been tired more days during this cycle. And like you, my muscles are tired all the time. Just walking up the stairs makes my muscles feel like I've biked 30 miles. I can't wait to regain my energy when the chemo is done! Hang in there. Only 2 more to go!
Holly: I'm the same way! Before chemo, I'd never be found sitting still. Now, I'm almost always on the couch! But I tell myself it's only temporary. And am enjoying reading, shopping on the Internet, and watching movies while I'm stuck on the couch.
Lena-lou: 102? Hope your fever has continued to drop. If not, I hope you've called your doc.
Next week, I get my TC #5 of 6. #5 & #6 are optional for me, but I think I'm going to do them anyway. The more the better, right?
Have a good day!
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Lena- Lou I actually go to a hospital outside of Baltimore called GBMC. I love it there but it is a hike for me.
1/2 way they taxol. Woohoo. Already have the bad mouth
. Ready for Aug 26 to be here. -
Jamie. Aug 26 will be my last day of radiation!
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You awesome ladies have been busy posting. Sorry about all the hot flush troubles.
Cold - I forgot to say congrats on your new SUV. Very nice!
Glad footballnut is feeling better. Now Lena needs to get that temperature in control.
And a shout out to Mame and Brigadoon. Hope all is well.
We drove 600 miles today on our way from Florida to Maine. I'm going to bed at 8pm.
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800 miles!!!! My body would be screaming. (
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Jamieh - I have been spending a lot of time on the Hair Hair Hair forum because I'm obsessed with it coming back now. I came across a post of yours from 7-2-2009 believe it or not. It was a picture at about 6 weeks PFC. You asked the question of what color it would come in as. That is exactly what I have been looking for. I am naturally a very light to dishwater blonde and my hair is coming in white - like chick fuzz. Can you please share what happened to yours when it came in then? The pic below is from last week - 4 weeks PFC.
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Holly, my chick fuzz looks similar on my head as it is slowly returning. It is a lot of white, too. I am curious how it will do on weekly taxol. My MO seems to think I will get some additional fuzz but no real growth, per se, until after taxol. Keep us conformed of your progress!
I was hoping my steroid high would push me into some constructive work around the house tonight, but, it didn't. Instead, I pondered my hair situation and finally figured out how I will know if I will lose more eyebrow and eye lashes. My brows continue to thin and lighten. The hair follicles that lighten in color are the first to drop. Touched several of them tonight and they fell out. Several more are turning. Curious to see what the morning brings....wait, it is morning, thank you steroids, and yes, I have to try and work tomorrow! Oh, and the magnifying mirror I used to contemplate my brow issue, has also highlighted the fact that I am growing peach fuzz on my chin at a copious rate this past week. That is hair I could do without. So far, the arm pits are staying smooth. Ok, enough on my hair, lol!
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it came in a mouset brown that wouldn't take hair dye at all. Every time I dyed it the hair turned orange which my hair dresser thinks was from the herceptin. That's funny you found my old post. I am back to obsessing about hair again. Lol.
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just beautiful !!!
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hi all
Wednesday already. In 1 week I'm back in the chair. Suspect that I will continue weekly for my last few weeks but I'll know more next tues when I meet with my onc. If I maintained my schedule it would be 2 more rounds every third week but given my reaction I see this changing
As of today tummy is much better. Taste buds are off but atleast my tongue is not burning. I've also noticed that my nose is very dry and whenever I blow, seems bloody. I think that there are dry blood clots in there. Anyone else have this?
Having lost most of my eyelashes my eyes are sticky most mornings and often continues for the duration of the day. I sure hope that eyelashes grow back quickly!
I am finding it hard to get out of bed in the morning but have my hubby set the clock for 8am. I must admit that I'm having great sleeps although I something's wake up drenched or restless
I still have enough energy to exercise. Going on treadmill soon followed by weights. I hope that this helps! I try to maintain this as much as possible
My left foot sometimes feels strange -weird tingling or slightly numb but nothing too bothersome
Wishing you all a great day!
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Hi Ladies! Just a quick note from the chair today...MY LAST CHEMO. Ever. I have reason to celebrate, finally. It's been a long road since my first infusion on April 8. My MO said no neulasta shot tomorrow, so I'm curious how this may affect my SE's. He also said I can schedule to have my port removed in a couple of weeks. Then on to radiation! Then on to tamoxifen! So I guess I'm not really done after today, but still, I have a smile on my face today
Here is the sign my sister made for me...she's been one of my biggest supporters. xoxo
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Hey FBN - glad to see you are feeling better!! Nose issues - mine runs alot as the hairs are gone - with yours being dry and bloody you might want to ask what your platelets are at. When they are low they can cause bloody nose and also bleeding elsewhere - definitely let the MO know about the bloody nose. Tingly/numb foot - sounds like a bit of neuropathy - also let MO know - I had that pretty bad first treatment and very minimally since as they reduced my dosage do to the neuropathy. Although mine got more intense then what you are describing - it went to burning pain after the tingling/numb phase. Are you eyes running during the day? Mine go through stage of being dry or runny - I also wake up with sticky stuff most mornings. I am going to tell MO about this also as others have said that you can develop tear duct issues that may need attention
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Congrats SwissMiss!!! Whoot whoot!!
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Hello All, I just read this thread and realized that I am in the same time frame. Last chemo tomorrow! Woo HOO! It is great to be at the endpoint of this phase. I'm excited to see some hair soon. I don't care what it looks like as long as something reappears. I am looking forward to having a conversation with Onc doc tomorrow to discuss next steps of radiation, implants, port removal, etc. Good luck to all of you as well !!!!!.
Footballnut- I have the bloody scabby nose thing but only when I wake up each morning. Not real nosebleeds. I feel as though it is from the extreme dryness/ losing nose hair. Not to be super gross, but I've gently wiped the area with a wet q tip to clear the scab each day. (Yuck- sorry!) My doctor would probably not be pleased with me messing with it. My eyebrows got really thin after 7th chemo round and I've lost bottom lashes on right eye only (Taxol). I'm grateful they hung on this long -but it looks weird and lopsided. I expect to lose more lashes on last dose of Taxol. Waking up with same sweats and tingling feet so I could have written your post.
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Congrats, Swiss! Definitely worth celebrating! I'm with you in the chair today for my next to last chemo. But I continue with Herceptin until April. Hoping for mild SEs.
I'm listening to music and the lyrics right now are applicable to us: "My life is like a lemondrop, I'm sucking on the bitter to get to the sweet spot. I know there are better days ahead."
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way to go swissmiss!
As for the nose -it's not a nose bleed just dry and when I blow I can see a bit if blood. When it runs it's not bloody just a nuisance!!
Rosebud we sound very similar with respect to the nose and eyelashes!! Lol
I'll chat with my mo about all this next tues
I am still so scared about future treatments but even the bad times have past quickly
Football starting soon!!!! Focus. Focus!! Lol
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Congrats Swissmiss one part of your journey is done!!
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Hey ladies!!!! Sorry ive been MIA lately! Just dealing with chemo and se and trying to enjoy the summer as much as possible with hubby and kids!
Woot woot my final chemo is next thurs! Cant believe it! And my bilateral is 8/20! Feeling like I see the light at the end of this very scary tunnel
Crazy to think in april when we all started connecting, that we are now gearing up to the final legs of our chemo journeys. Im forever grateful for the friends ive made here. I hope we all keep this thread going!
Congrats to all the chemo (and upcoming) graduates!
Xoxo jen
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Congrats Swiss!! So good to hear you're done! I started 4/8 too and my last chemo is next Tuesday. Then on to rads on 7/30 for sim. Looking forward to moving on to the next thing.
Congrats to you too Sunshine! Soon you'll be well on your way!!
We'll definitely all have to stay in touch!!
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Congrats Swiss !!! And to everyone getting close.
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Congrats Swissmiss!! and Congrats to all upcoming graduates. We are all fighters and survivors. I hope for minimal SE for all.
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You know I think I like the word THRIVERS!
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Congrats to those that are finished or finishing chemo soon! I think the light is at the tunnel for most of us!
I had my second last treatment yesterday with NO reaction to the Taxol this time. Last chemo will be on July 29 but will then continue with Herceptin every 3 weeks until June of next year. Will be done the chemo portion, but won't be "done" Haven't even spoken to the onc about any of the anti estrogen stuff yet.
Had my consult with the radiation oncologist this morning. Will be doing the simulation on Aug 1, then starting radiation the week of Aug 18. Probably for 5 weeks ... he wasn't definite yet as he has to see the simulation. He is very nice though, I like him a lot. Was hoping to start 2 weeks after the last chemo, but he likes to wait 3 or 4 weeks as the skin can still be very sensitive to burning before then. Makes sense.
Funny thing out of that consult ... because I am through menopause, I have to have a pregnancy test done. I laughed at that one as nothing has been going on in that department while I have been having chemo. But that is the standard of care, so I will go and pee in a cup. Too funny though :-)
Also had another PT session with the lymphedema therapist. She got rid of the little bit of cording that I had a few weeks ago, but I still don't have 100% range of motion back and am still a little tight. Getting there ... going back the week after my last chemo and then again after radiation starts. Depending on how I am doing, I might keep going back during and after radiation until I am 100%. Radiation can increase the risk of developing lymphedema, so doing all of this proactively.
Then went and had the Neulasta shot. Everything is being done at my hospital center, so it is all convenient.
Even though I had a bad night last night due to the ton of steroids I had yesterday and the hot flushes that I am developing, I still feel very energetic today. That will all change tomorrow when the steroids wear off :-)
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Yay to those on their last or second to last chemo!! And congrats Jen on the surgery date. Are you getting TE's then also? My exchange is scheduled for 8/25! :-) Only good things ahead for all of us!!! HUGS
Holly
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Lemonade - good luck with rads girl!
Holly - yes getting the te at same time. The plastic surgeon said if I do not need rads after surgery and things go smoothly, then exchange surgery is about 8 wks later!! Im so excited for you that yours is so close! Hugs!!!!!
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Hi everyone,
I was MIA due to fun! Woohoo! Got to take the boler out camping for 3 nights over the weekend with my twin brother and his wife and my hubby and dd. It was great, beautiful and 30C all weekend
Lots of sunscreen! Then appointments all tuesday . Lymphedema specialist kept asking about my DVT and was worried about my puffiness, wondering about my heart, etc. Went to the next appt MO. My resting heart rate was sitting at 125. Oops... I hadn't even felt any symptoms, so Echocardiogram was after my chemo yesterday. Will have results by Friday when they ultrasound the DVT site to see if I need another 3 months of Tinzaparin injections....boo hoping not to have to do that anymore. And they are checking out the non dvt arm also because they don't want to compress that arm in case of another clot. So after that is ruled out I have to go straight to the store to get a sleeve and gaunlet
Lymphedema specialist also broke the news that I can not do ICU nursing with a sleeve/gaunlet due to infection control. I had a good cry about the loss of a big part of my identity. Will be forced away from the bedside, and not ready for that
I will miss my patients and their families. I am still hoping that maybe I could wear compression at night instead but with all the heavy lifting required the specilist said no. Grr. And who knows what the LE will do after rads. Ack! But on the bright side I have been thinking a lot a out becoming a nurse navigator if a position opens up, maybe this is the push to do it once I get the ok to work again. Then MO reminds me that tamoxifen is now off the table due to DVT. Boo.. wants me to either do ooph removal or suppression and an AI. But I still was holding out hope for more babies. Double boo and double the tears. Then the nurse practitioner who is a good 300lbs gives me a 10 minute lecture on the 11 pounds I have gained since surgery and chemo, talking about reccurence, survival rates and it's like I am in the cartoon peanuts....blah blah blah. I am walking my 2 km a day and just can't handle anymore after my day with a 3 year old. At least my MO walked in right then and said no working out or anything strenuous until they get my heart rate figured out. Thanks MO... I love you♥♥♥
But I do only have 5 Taxols left, and am doing ok by only thinking about that
Totally think my down time will hit hard after I get through chemo as well.Congrats to everyone finished or finishing chemo!!!! So excited for august 27th for my last one!! I agree with the fast/slow time thing with this journey.
Football- so excited you are feeling better, and I too am having the bloody nose but only when I blow it.
Cold- congrats on your new ride! Way to go hubby!
Jaimieh and holly- fuzzy white hair starting to grow too, I am getting some fuzzy face too, ack! Will wax that!
Good luck to sunshine and holly and all those heading in to surgery!
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Clarn, So sorry for your disappointments. My heart goes out to you. But I love the way you are already thinking ahead about switching gears and possibly switching to nurse navigator. They are so helpful to us before and during treatment. It takes a special person and I'm sure you've got what it takes in spades! Hoping the heart issues turn out to be nothing. Hang in there.Thanks for my Lol of the day - loved your description of the 11 lb. lecture coming from the 300 lb nurse! Priceless!
I have only one more Taxol to go next Thursday. Can't wait!! Two weeks ago my white counts were too low & had to skip that week. Last week they were up considerably and this week they were amazingly high. Go figure. I'm just grateful.
Yep, I have that Taxol bloody nose too, but only when I blow it in the morning. And Yep, I've got that baby chick white fuzz stuff going on too. I really can't call this stuff hair, but at least something's growing there!
Hugs and good wishes to all those with surgery coming up. So happy to hear that it's better for you Footballnut!
Paula
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Hello everyone.I've been a lurker here since early April. Just not a public person,but I've learned a lot from all of you.
I'm just really bummed today and,I admit,a little scared. My treatment has been complicated from the get go. Had seroma develop after lumpectomy in January and ended up with a wound vac for 6 weeks or so,delaying start of chemotherapy until,April 4 First cycle about killed me...diarrhoea,nausea, vomiting,dehydration,etc. Had to have multiple iv hydations. MO reduced carboplatin dosage and said I'd be fine. Wrong! Over subsequent cycles I've required delays, multiple hydration, went. Into early kidney failure ,dosage changes and switched to cytoxan.Was scheduled for last chemo on 7/28 but today MO cancelled it and said I'd be fine without it and we can just move on to radiation. Herceptin has been delayed for another four weeks too. Tho on one hand this sounds great it scares me....I've had so many changes and delays,what if those little suckers are still lurking out there and need just that last blast to convince them to leave me alone? I'd hate to have gone through so much to no avail! Am I crazy?
And the start of radiation is scary,too! What complications is that going to bring?
Thanks for letting me vent. I have remained positive through all of this until today and every thing just hit me. My MO is great and I trust her, but....
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CONGRATS SWISSMISS!!! WOO HOO!!!
I am not too far behind you in the race to finish with Tuesday 7/22 being my last one. My daughter made me a sign as well! Stay tuned...Saw this on facebook and promised to share it here.
xoxo
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Footballnut - I also get the bloody nose thing. Every morning! I have had a few actual nosebleeds, but have been able to stop them fairly quickly. I'm so glad to hear you're feeling better!
Clarrn - I'm so sorry you've had so many disappointments. Hopefully, you will be able to become a nurse navigator. I think you would be great! Also l got a good laugh over the nurse lecturing you on your 11lb weight gain!
Had Taxol #6 yesterday. Fatigue is my biggest enemy right now. Also have dis colored fingernails. They feel strange too. I hope they hang on.
Wishing you all well. Hugs, lilyrose
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Woo hoo! So many of us are heading into the last round or 2 - so exciting! It seems like a short time ago we were all just starting out and scared out of our wits! Look at us now -Super Heroes, all of us.
Swissmiss - Congrats on being DONE! Hooray!
Nancybel - I believe you just finished up too, yes? AWESOME!
Holly - I have the white "chick fuzz" too! If it all grows back that way, I'm going to look like someone's Grandma for sure. Eeep. :O
EverForward - YES to the muscle fatigue. We have a 2-story house, and that trek up to the second floor almost kills me. I have to stop and rest half-way. And every time I say a little "thank-you" to the landing for being there.
Footballnut - I had the bloody nose thing too - that Taxotere is a PAIN, right? I was also getting headaches EVERY DAY. My MO told me to take a Claritin the day of chemo and about 5 - 7 days following (and to continue for more days if I need - which I usually do), and it completely cleared up the headaches and the nosebleeds. That man is a GENIUS, I'm telling you! I hope things are going better for you!
clarrn - I am SO SORRY for all the stuff cancer has stolen from you.
I do thing you would make a marvelous Nurse Navigator. Mine has been super useless - I've heard from her ONE TIME before my surgery and nothing since. It's definitely an area that could use some fresh faces who have BEEN THERE. And as for the nurse lecturing you on your weight gain? What can you do but laugh? Honestly, you were in good shape BEFORE. You were healthy BEFORE. And those things didn't keep the breast cancer away. I'm pretty sure the 11lbs you gained during chemo aren't increasing your odds of recurrence. Some people are just CLUELESS, right? GEEZ.MJ1966 - Welcome! I'm sorry to hear you've had such a tough time. Chemo is nasty business, isn't it? I'm super impressed you've made it this far! Way to power through it all when faced with side effects that would have caused many women to quit after round 1. You're seriously a super-star in my books!
Tomorrow morning at 8:45am, I will hit the chemo chair for the LAST TIME (after that it will only be the Herceptin Chair, and I'm cool with that). And I'm EXCITED. Practically GIDDY. Bring it ON. Because no matter what the SEs bring me this time, there will be no next time. I WIN. Woot! Woot!
Thinking of all of you who are heading into the Chemo Lounge over the next few days. We're almost there Ladies!
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Football - I get the bloody chunk thing right after taxol.
Lilirose - I am not fatigued but have a hard time staying on task and organized. Motivation is not my friend. My nails are raised and some have black spots that look like bruises in the middle. I also have some burning neuropathy in my big toe tonight.
Having a hard time waiting for my scan on Mon and then the breath holding that will go on until Wednesday. Think I see my friend Xanax on the shelf. Got to keep my spirits up..
We have a fun thing happening in our family tomorrow. Our son, DIL and SuperGrandson live down the road. They just bought two, that's two, Great Dane puppies. We are all so excited. Like having new babies come home. That will tide me over if I ever get to hold them ;-)
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Brigadoon, Motivation went out the window shortly after I started chemo. I get it. The onc nurses tell me that my high resting heart rate is a big factor. I sure hope it goes back to normal once chemo ends. Waiting on tests is never fun. Waiting for results is nerve wracking! I hope your scan gives you good results! New puppies to cuddle will be fun to look forward to! Great Danes are awesome.
Hugs, lilyrose
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Thanks for all the encouragement! You bring happy tears to my eyes because you get it. You understand.
Woohoo! Happy dance, you do win Cold, congrats on getting to the last one!
I am smiling as I look at the commode in front of me. I will always remember your tale about yours cold...lol. I spiked a fever of 38.9 today so here I am getting fluid boluses. Poor nurses had a difficult time with my poor chemo veins. 4 pokes and we are set. Not so bad though. Timing is terrible. My cousin got here at 9pm tonight from 2 provinces away. I waited until they went to bed to come in. They leave at 9 in the morning so I guess they will come say goodbye here.
Tour of the hospital? not quite the visit we were hoping for but life happens. Hope you all stay healthy! -
Good morning, everyone.
Clarrn - I was reading through your posts, thinking how much you have to deal with, then saw you were in the hospital!!! Your positive attitude is amazing.
MJ - welcome. This is the place to vent. Hoping things improve for you.
Congrats on your last chemo today, Cold!!!
Lilyrose - I hear you on the fatigue and weird nail feeling ... Life is so odd these days.
Brigadoon - thinking of you as you await your scans, and also picturing you frolicking with two Great Dane puppies.
Longisland - I like that: there is no room for drama!
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There it is.... and yes I still managed to piddle on the floor...lol
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It's a weird feeling as I get closer to my last infusion on Tuesday. I can't seem to focus, or relax - yet I have no energy. My daughter asked me if I was getting excited about it and my answer was No. I don't know how I feel - the only feeling I'm sure of is "Unsettled". Maybe part of it is that I have other things in line immediately following the chemo. MRI & Bone Density scan the next week, followed by mtg with Radiation Oncology to set things up there. Maybe after those appts. I will be able to relax a little during the few weeks break until radiation begins. As for right now, I'm just kind of existing for the next few days. Trying to stay upbeat but it ain't easy. I think my hormones are messing with me as well.
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Just thought of something funny after reading the updates. We're like a bunch of baby chicks that just hatched with all our fuzz lol! Big high 5's of everyone finishing up chemo or moving to the next stage of this journey.
Clarn - Sorry to hear about the career change, but I have no doubt that this experience will help your patients out so much! If only we all had health care professionals who understood what we're going through.
MJ - congrats on remaining positive with everything you've gone through! It sounds like you've had it VERY rough. We're here for you to vent or just to read our updates so you know you're not alone. I went weeks without posting here, but now I'm back. This has been such a safe learning place for me and I am so very grateful for every one of you wonderful strong ladies!!!
Hugs my friends...
Holly
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clarrn - You are a hoot! I have very fond memories of my own Grown-Up Potty chair. How wonderful that someone else gets to enjoy one too.
And even now, when I hear the word "commode" I giggle a little. Thanks for sharing your photo and making me laugh today! I hope you're feeling better!Well, I MADE it Ladies. I made it through the final chemo round. But the day was not without its blips. For the past few rounds the oncology nurses have been warning me that Round 6 of carboplatin is when reactions can happen. I asked my MO about it and he assured me that while they CAN happen, they are not common. The nurses are wonderful, he said, and they know what to do, so don't worry about it. Total foreshadowing there.
So, I marched into the chemo lounge this morning with a SMILE on my face. Seriously, I could NOT stop grinning, knowing that after today I don't have to do this again. We started with Herceptin for 30 minutes, then Taxotere for 1 hour, and then carboplatin for 45 minutes. Unfortunately, half way through the carboplatin, I got a little nauseated. I thought it was because I had just eaten lunch and maybe I had eaten too fast. A few minutes later, I started to feel...WRONG. I hit my call button, and with only ELEVEN MINUTES remaining for the carboplatin, we stopped. My face, neck, and chest had turned a lovely glowing RED, and I felt AWFUL. The nurses were AWESOME, as always. They did a saline flush, then some Benadryl, then some Hydrocortisone, and THEN some Zantac, and THEN some more saline. Then there was a 20 minute wait, and I totally zonked out for a little while.
My nurse informed me that typically they don't "challenge carboplatin" once there's been a reaction. But because mine was a minor reaction ( I would hate to see what a major one looks like - oy!), and because I had so little left, my MO wanted to try to finish it up, but at a slower rate. So 11 minutes became 22 minutes. And guess what? I took it all like a CHAMP. And then I got to RING THE BELL. Now THAT is an awesome feeling.
I walked out of the chemo lounge much more tired than usual; which was expected, considering how many extra meds I had pumped into me! But I feel like a Super Star. If I had ever learned to tap dance, I would have tappa, tappa, tappa'ed my way out of there. 
Isn't the sign amazing? My son made it. I'm keeping it forever.
In other news, my daughter was diagnosed with Strep Throat this afternoon, and my son appears to be following in her footsteps with a fever and a sore throat developing this evening. *big sigh* When it rains, it pours, right? The worst part is not being able to go near them. Mommies are supposed to snuggle with their sick babies - it helps them get better. And I CAN'T. AAARGH! NO FAIR. *stamps foot* And my husband (and Mom - the traitor!) thinks I should be quarantined to my room until the children are better. WHAT?! I can't even argue with him about it too much, even though the idea SUCKS. Because he's probably right, the big Smarty Pants.
Ah well, I am FINISHED CHEMO. And that's really all that matters here, right? One more visit to the Dark Place, and then I'll shake the dust off my feet, straighten my crown, and walk away like a boss.
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bravo Cold! And tell your son that's a fantastic sign!!
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Cold...CONGRATS!!! I love the sign, definitely one to treasure!!!
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Has anyone had trouble holding their urine? My onco said she'd never seen anyone have that trouble before but I looked it up and it seems to be a side effect. My neuropathy is getting bad. The pain keeps me up at night. I also get dizzy on standing up from lying down. Supposed to have 5th infusion Monday. Pretty scared!
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Cold, I'm so happy for you. Onward and upward!
Did they say anything about why you had that reaction? You are one brave warrior!
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MommyQ, why are 5 and 6 optional for you? My onco didn't want to give me more than 3 and I can't figure out why. I'm getting 5 on Monday.
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Timbuktu- yep crazy urgency for a few days after chemo. No UTI. Sometimes it is worse, with all the fluids being pumped into me I peed on the floor TWICE today! !! But at least not yet on the oncology unit where I used to work! Private room, free TV, private bath. Thank you to whoever pulled strings to get me into a palliative room even though I am not palliative. Friday night football
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Yes, I havep seen many posts to that refer to that symptom.
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Cold - congrats, and love the sign your son made. Girl - you don't do it the easy way! Scary about your reaction, but sure glad you worked your way through it.
We made it to our place in Maine after 3 days of driving. Sitting here enjoying the ocean and (mostly) tasting a cup of coffee. The light at the end of the tunnel continues to get a little brighter each day.
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Ahh clarn so sorry that you find yourself in the hospital but glad that you have a nice room and a stable potty chair
. Hopefully this will bring a smile to your face and to others.
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linda ... haha... just the smile I needed this morning!
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Clarnn hope you are doing better.
Congrats to all of you wonderful ladies finishing up chemo. You are my inspiration as I finished taxol#3 on Tuesday. Only 9 more! I find weekly taxol much more "taxing" on my emotionally and sometimes physically than the AC. This round of SEs include a weird numbness in my face and tongue. Could it be neuropathy starting? I think my fingers are tingling more than usual, too. Energy is better, though. Two days without a nap and even got a good workout in. However, the weight gain gas started. 5 lbs in 3 weeks. Yikes !
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my eyes won't stop tearing, my nose won't stop running..... Ugh! Eyelashes are just about gone - eyebrows are thinning. Atleast the pain has been gone for the past week. Harder to get going in the morning but must push myself......
So how does one wear eyeliner when the eyes are tearing??!!
Look forward to my chat with my onc next tues re go forward plan. I dread having to go for chemo weekly!! Just want this over with!
Trying hard to keep my mind out of dark places. Going to a concert tonight - Scott weiland - singer of the stone temple pilots is here solo. My hero! Last time he was here with the stone temple pilots I got up on stage with him to sing.
Tonight hubby and I will try to meet him but not holding my breath. I've been chatting with his bass player and supposedly my name is on a list but we don't know who holds the list!! Lol
Have a good weekend all!!
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I was coughing and peeing my pants during chemo! It all went away PFC. Hang in there!!
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I also peed on the floor of the infusion room because I was so zonked I could not get out of bed in time to get to the bathroom. After that I had my husband stay with me and wake me every hour to go. I can't believe my onco said she never saw this before. But what I have is a little worse than urgency. I am leaking a little bit all day long. I just hope it improves when I'm finally done.
I don't know why but this thread doesn't come up automatically anymore on my favorite topics. This thread is truly my favorite! I thought no one was posting!
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Timbuktu - My MO said that the recognized standard treatment for my diagnosis is 4 rounds of Taxotere and Cytoxan. There is no scientific proof that any more cycles will improve my outcome, although she said new research is being done to see if 6 is better than 4, so I guess some think there's a possibility it's better. Due to my cancer being advanced (3 cm tumor and 3/16 lymph node involvement), she'd like me to do the extra 2 cycles, as long as my body tolerates it. She figures that in case 6 is better than 4, she'd like me to get the 6. So, while I'd love to stop now with 4 done, I guess I should go ahead and do the 6.
linda505 - LOVE that card, LOL.
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C*O*N*G*R*A*T*U*L*A*T*I*O*N*S C*O*L*D!!!!!!!!!!!!!!!
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Makes sense to me Mommy. Better safe than sorry. I can't figure out my onco.
BTW, I can't express how much this group has lifted my spirits. You are all amazing!
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I actually asked my infusion nurses about the bathroom issues and they see if when too much Benadryl is given. I haven't had that issue (knocking hard on wood). I have had a million others BUT not that one. I am getting ready for Tuesday's infusion and return to the chemo hole.
. Blah. We have been on vacation and had to go back so I could get an infusion. Talk about a bummer. I am a major downer these days and my dreams last night didn't help make me feel any better. ;(. I know I will eventually feel better but it feels like those days are so far away. I think I need to find something to occupy my time and get myself moving again.
Cold- congratulations on finishing. May the last chemo hole be short lived.
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arg.... temp remains up... They want me on the antibiotics for 2-6 weeks IV!
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sorry clarn!! I hope you feel better soon! This road is so full of potholes.
I should be thrilled for my last taxol next week but I am so emotional. Ugh! I feel terrible for my family. I keep thinking about rads too--will I feel better then? I want my life back!!!!
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jhodro - I promise the feelings from chemo go away. Not in a day but they do. I am worried about the rads also. Just hope the SE's don't linger from it.
Clarnn- that stinks.
. Where do they think you have an infection?? -
Jaimieh - my left breast is red, although they are surprised that I would get an infection so long post surgery (feb 28). But everything else is clear, so it must be that. Growing staphylococcus aureus in my blood
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Congratulations Cold!! Yay for last chemo and boo for reaction, but hey YOU ARE DONE!
Love the sign. Hope your dark place isn't so dark this time and it goes by quickly. -
Hope the antibiotics do their thing quickly and painlessly! Let us know when you are better.
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clarrn - do you have to stay in the hospital for the antibiotics?
Footballnut - how was the concert?
Decided to stop whining about fatigue and do something about it. Started a regimented daily walking program today - no excuses unless I just pass out or something.
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clarrn I hope the Rx take care of it quickly. I had issues months later. I think it is common because of the chemo.
Sharon-Way to go starting an exercise plan.
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Clarnn, so sorry. You just can't catch a break. Do you have to go to the hospital for daily antibiotic infusions or stay there ? I hope you can get out of the hospital. You are much safer from germs at home!
Jhondro I get the emotional roller coaster approaching chemo day. It starts on Sunday for me and lasts until my infusion on Tuesday. I have Ben overly sensitive on those days and want to kill my husband, yell at everyone at work and the world irritates me. I have a friend coming from out if state to visit me for a few days. She is very dear to me so I am praying that the black hole stays away from me this round so I can enjoy her visit
On another note, I have officially had a thumb nail lift through my shellac painted nail this weekend. Ewwwww. I am afraid to take off the polish to see what is under neath the paint and the status of the other nail beds. Oh, and I purchased a dress this weekend for my niece's wedding August 1. Two sizes larger than BC. The joys of chemo. :-(
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They are having trouble with vein access, might get a port with only 5 weeks of chemo left! If I do, they might let me give myself them as I am a nurse.
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Clarrn: sorry about the port. Best of luck. Maybe it'll make the rest of the process easier for you…hopefully.
Sharonde: Yay you on the exercise program!!! I want to do the same as soon as the foot pain diminishes for me.
Mmtagirl: Your description nails the emotional roller coaster to a T. I am having trouble getting back at work - I have zero patience for stupidity (and right now everyone seems to be acting stupid). And my husband tends to get on my last nerve - I've had to tell him about 600 times that I can't drink citrus or can't eat something. I say I'm tired, he says why. It's not like he isn't trying, but I'm not easy. And then you have the whole responsibilities of the kids.
Sorry about your nails. I think I remember you saying you were icing? -
Yep, I am icing.
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mmtgirl, what a comfort to come on here in the morning and read that I'm not the only one.
Tommorow is infusion number 5 and I was up most of the night. The anxiety seems to get worse each time. I even took an ativan and it did little good.
But as I said, it's nice to know that I'm "normal" in this very abnormal situation,
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Timbuktu: Better safe than sorry, for sure! I found the website that my MO used when determining my treatment so you could look at it too. I don't see any treatment plan which only consists of a total of 3 treatments. I can't remember which chemo drugs your MO has you on, but if you go to the following website, you can look at the recommended treatment regimens listed:
http://www.nccn.org/professionals/physician_gls/f_...
Click on "Breast Cancer." On the following page click "NCCN Guidelines for Patients (Stage I and II Breast Cancer)" and go to page 44 and 45. Those 2 pages list all the recommended treatment options for HER2- tumors. There are a bunch of them! Maybe you can show this to your MO.
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hi ladies! Love that card Linda. Congrats to all of you warriors who have conquered your chemo with determination and perserverance. I'm just wrapping up the dark place of number three. The swamp water taste and aches are gone, but the fatigue just won't let up. Is everyone else feeling like you have cement shoes and no stamina? It's so depressing. Even if I wanted to go out, I don't think I would last long. And then I look in the mirror and say "oh yeah, your still here" . Lol. I really never got over the bald thing. I must have purchased 29 different hats and scarves, and 2 wigs...just can't feel comfortable in my own skin no matter how hard I try. Anyway, I'm coming up on my last treatment and while I am elated, and psyched, I'm also worried. I'm worried that maybe I should do 6 treatments , what??? Do I hear myself? I asked the dr when we were deciding which regimen was right for me she said both ( 4 of TC, OR 8 of AC-T) were suitable for my cancer. I said, so should we meet in the middle and do 6? She said that there's no research that oroves one is better in my situation. Will we ever give ourselves a break? Will we be able to breath deeply again without thinking the ground is going to fall out from beneath us?
I'm sorry, I'm so whiney and down, but I read your posts and you get it. No one around me gets it.
Thanks for listening. And I love what Cold said. Doesn't matter what SEs come this time, because there will not be a next time. I WIN!!!!!
Dd
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Well it's day 5 after chemo and the "not constipated anymore" portion of the program has started, right on schedule. Many of you have talked about the worsening fatigue and I'm right there with you. Even on my "good" days when I walk up 2 flights of stairs to my office, there should be a cheering crowd and a "finish line" ribbon at the top because I feel like I just ran a marathon. I hate feeling so weak and fragile, like I'll never feel strong again. Even when I finish chemo (last round Aug 6), I still have the mastectomy to deal with, so I know it will be a long time before I'm back to normal. I just want to crawl into bed and stay asleep until this is over. On the positive side, my sister is in town and she made me chocolate chip cookies.
Oh, and with the sparse white fuzz that's growing longer on my head, I no longer look like a baby chick, but now I'm starting to look like a mad scientist.
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good morning all
I meet with my onc tomorrow to discuss balance of my chemo and then wed back in the chair at 10am. 2 rounds left but if I have to go weekly I imagine that would be six weeks of infusions. Ugh!
This past weekend I was fortunate enough to meet my idol Scott weiland - Scott used to sing with the stone temple pilots and is now touring solo. I got up on stage to sing with him and he later introduced me to his drummer mike - a cancer survivor!!
Hot Scott made my night! He's the best and I'll never forget how he made me forget all about cancer and rocked my world as he's done several times in the past. 😊❤️
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Go Footballnut!!!! You are amazing!!!! you should be floating and walking on air today
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ddkath I am in heaven!!!
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how do you even start to get on stage with him? I mean, how do you even get his attention? LOL. If I were ever able to get on stage with Marcus Mumford I think I would pass out and freeze up in the state of shock. LOL>
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Rock on, FBN!!!
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ddkath I had a banner printed several years ago that says "Scott pick me for dead and bloated". Best $100 I ever spent. I've been fortunate enough to get up with him in jones beach ny, Hamilton Ontario and now toronto.
The banner plus the red fedora is what does it. He has his own clothing line as well and I've worn that too.
I don't think that I could do it anymore. Each time he's been so gracious!
Because of him we were guests of the band after the show on Saturday. He has a very kind side to him that I'll never forget!
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Hi all,
Sorry for being MIA. I have been in bed most of the time with these stupid chills and fevers. They are wearing me down. I did call last time I posted and they took bloodwork again but still didn't find any cause for the fevers. I went in on Thursday for my chemo appointment and my temp was 101.5. My nurse said the dr. wouldn't give me chemo and that my red blood count was "in transfusion territory," but yes, he did go ahead and give me chemo. And said, "Eh, not yet" on a transfusion. The dexomethosone (SP?) -- the steroid, I mean -- kept my fever down for about 24 hours but Friday night it came blazing back at 102.
Got out of bed on Sat. to take my daughter to a birthday pool party since my husband had to take the other two to their activities. The host was nice and let me recline on a a pool chair in the shade much of the time. She has been through chemo herself, turns out. And other than that I have been in bed.
I am worried about my poor husband. He is doing so much work around the house -- basically all of it.
Today I came into the office. Had a chill on the way and I ran the heater and waited in the parking lot til I wasn't shivering and now I am here sweating. My poor colleagues, LOL. Not sure how long I will last today as I feel completely wiped out. Walking across the parking lot had me panting.
jbokland, no, I am not doing icing. My nurse said they don't believe it usually works, though I am welcome to try it. I had such a chill last time I was there, there was no way I was putting any body part on ice! :-) Did you do it and do you think it helps?
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Hello All! I've been MIA since my last chemo on Wednesday, and oh my goodness I have missed a lot!
Congrats Cold on your last chemo...I love the sign your little guy made! Clarrn...I am sorry for all the trouble you've been experiencing...but I love your potty chair
We are here are all here for you, whether it's laughing or crying! FBN...omg, you are on stage...how cool is that?! I know I'm not addressing everyone, but please know I'm thinking of each and every one of you.My last chemo Dark Place was like all the others...awful. Taxol has a way of making every single joint in my body scream...even my toes hurt. I have been on Advil and Norco continuously since Friday night, but I'm hoping I can just use Advil tonight. I was nervous about my side effects this weekend because for the first time I did NOT get a neulasta shot. I ended up having the exact side effects as always, so apparently the neulasta side effects were completely taken care of with the daily Claritin I take. But, as always, Monday morning I'm feeling pretty good. I have to admit, though, that the last chemo was a bit of a let down. I think I had this wild dream of my hair growing in over the weekend and my oncologist calling to say I didn't need radiation afterall
Those things didn't happen, but I am grateful I will never again experience that Dark Place.I made an appointment with my radiation oncologist. He's on vacation for more than two weeks! I can't even get in to see him until the first week of August, so I have a feeling I won't actually get my treatment started for several more weeks to come. I'm kind of bummed, as I assumed I'd start treatment right away. Same with my port removal. My surgeon is on leave for three weeks, so unless I want to recruit a new surgeon, I have to wait until she's available sometime in August. I just want this all to be done sooner, rather than later, and no matter what I do I'm always feeling like I'm being put on the back burner.
I hope you all are having a better day today. Thank you for being here for me. Can you send some "grow hair fast" vibes my way?
xoxo
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Hello all I was lurking here I'm from the June chemo. I just wanted to congrat all and to let Timbuktu know I have the same problem.I have o run to the bathroom sometimes. Never had that problem before chemo. Oh well anoher SE I guess.
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So glad you are through the last dark place SwissMiss... * fast growing hair vibes*
Still here in hospital, more IV attempts.... might get a port with 5 weekd left of chemo?
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just want to clarify the fast hair growth for only our heads please
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wondering why some are on taxol vs taxotere.
I am also nervous about what is ahead. Tamoxifen. I haven't heard anything good about it from many women. Side effects galore. Ugh!!
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Footballnut - I had very few side effects with Tamoxifin. Some joint pain and my hair was "a little" thinner. No weight gain, no stomach or intestinal problems. I know it is different for everyone but it may be fine for you.
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Ugh - getting ready for the chair tomorrow for #5 - and taking those ducking steriods. Have I mentioned how much I hate the steriods?? Don't know if I will really be doing #5 or #6 - will all depend on my liver enzymes, which have been climbing since the first treatment. If they have climbed further I think I will stop chemo and continue with the herceptin only. As of my last treatment they were already in the range that the manufacturer of taxotere recommends stopping so I will not go any further if they have increased. My MO did reduce the dose to see if that helped. Not sure what kind of a discussion I will have with him if I want to stop and he doesn't want me to but I have to make the best decision for me. I still feel like I am in the throws of the bad SE days from #4 - never really recovered from that treatment - no energy at all, and all the typical SE's seem to be hanging on in different levels of bad. Hope everyone is having minimal SE's and those that are having them - hope you are coming out of the dark dementor occupied land. CONGRATS to all that are finished!!
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clarrn...a port with only five weeks to go might sound bad, but just think after you have it that is five less times they need to look for a vein. I had mine put in under general anesthesia, so I had to have an IV then, but I am thankful I had it. Wishing you all the best. And thank you for the "grow hair (but only head hair) fast" vibes
FBN...I've often wondered why we all have different treatments drugs and doses...I had dense dose Taxol, and frankly, I'm a little envious of those who grew hair on the weekly dose. Besides that, I wonder why such differences when some of us have similar diagnoses?
I am five days PFC and I'm already watching my hair (not) grow. Seriously, I need to focus on other things! But I got a little sad yesterday when I read the Hair thread and see that gals are about six months PFC before they stop wearing hats and scarves. I have a trip planned for November, and I'm bound to still be a baldie even then
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My MO gave me some good news.: he said tamoxifen can increase your libido!!!
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too funny jbokland. I've had no libido since finding the damn lump!!
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Hello Ladies
I have been following the group from my email, but I have not posted in a while. I think of you ladies all the time, and I still am laughing and crying with you all.
I am now seven weeks post chemo and started Tamoxifen last week. I do not know where to start.
Football Amazing I am jealous.
A small note about ports - I had my port removed with my implant surgery. Chemo kills our veins. Please seriously consider leaving your ports in. The morning of my surgery the first nurse could not get my IV started. The second couldn't either. The anesthesiologist couldn't get it. They brought in a doppler and then an ultra sound machine. After six attempt the second anesthesiologist finally got it. Last week I was really sick and went to my infusion center to get fluids and they hunted down "the best nurse" to put my IV in. She worked in the building but not in the same center. It took her three times. This one little point was never told to me. So, I wanted to let you all know before you rush to remove your port. I easily made the decision to have it removed. I wish I had not. Ask your nurses!
Neuropathy has slowly diminished but I have very weak muscles and can not do much so I am starting physical therapy soon.
Fatigue - still here! I spoke with a thirteen month survivor and she told me it takes a good six months minimum to start to let up. Not happy about that.
Tamoxifen- My hot flashes are becoming less frequent, but they are horrible when I get them. I work at a laboratory supply company, and one thing I do is research the researchers. Many women stop taking Tamoxifen because of the side effects. I am already very moody. This fact has prompted a search for an alternative. I along with many of you ladies have to take tamoxifen and I am not happy about it either. I will take it as long as possible and I hope I make it through the whole five years.
I remind myself that this is a battle and I have to keep fighting! All Good days are in the future for us all!
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FBN - What an awesome experience!!!! I'd still be floating on Cloud 9!!To all you ladies with the SEs - you are in my daily thoughts & prayers for improvement. Hang in there.
The port is a real blessing for chemo, but I can't wait to have mine out. It doesn't hurt when I sleep at night as it did for the first few months (Ugh!) but it's a daily reminder of the chemo and my MO's office won't use it for regular blood work because port can only be accessed by an onc nurse. Plus, if it's not used regularly, you have to go in periodically to have it flushed. Who knows what the future holds....if it has to be put back down the road so be it, but every time I look at it, it screams the big C to me, so I want it gone.
I've been doing the icing for Taxol and with only one more to go, no signs of neuropathy so far. My MO is a big believer in icing and will soon start a clinical trial for it. However, neuropathy can rear its ugly head months post chemo, so not patting myself on the back.
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after my horrid first round with taxotere and herceptin 3 weeks ago I have slight numbness and tingling in my left leg and foot. Mostly in my foot and calf but seems to be creeping up my leg
Having said that before my treatment I would sometimes experience similar sensations if I didn't work our regularly. So maybe it's targeting weaker areas
I too have a port. Mine is a paediatric port because my right side is so small. I can't wait to have it out but will be on herceptin until next July and then suspect that it will have to stay in 2 years post diagnosis "just incase". Sucks!!
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Footballnut: That's so awesome that Scott pulled you up on stage and let you go backstage. That's a special night you won't forget.
Re: Tamoxifen, I'm going to be on it for 10 years and am nervous about it, too. Not so much the common side effects but the rare super scary ones (like blot clots and cancer of the uterine lining). Hopefully, they truly are rare.brigadoonbenson: I'm happy to hear you had very few SEs from the Tamoxifen. Maybe there's hope for us all!
linda505: "ducking" steroids...LOL. I get to start those tomorrow, woo hoo! :P I hope your liver enzymes are ok tomorrow. But if they aren't, remember...you are in charge of your treatment. Your MO is there to provide advice/recommendations, but in the end, if you don't want to go on with any more treatments, it's really your choice. Re: SEs, I too can't seem to kick the fatigue for round #4. I go in for #5 Wed and I don't feel fully recovered yet. I'm SOOO looking forward to being done with chemo!
mikishelley: Thanks for the report "from the other side." It's good to have an idea of what's to come, good or bad. Sorry to hear of the problems you've had with IVs in your veins. So, if you had your port still, would they have been able to use it during your exchange surgery? I'm just curious, since only certain nurses are allowed to access them. I just don't know how available these special nurses are for non-chemo related events.
MomMom: I can't wait to get my port out either. I asked my MO about "maintenance" for a port left in after chemo. She said although the official guideline is flushing it once a month, it really only needs to be flushed about once every 3 months. She had one patient who went several years before getting it flushed and it was fine...although my MO wouldn't recommend that!
For those who have finished chemo, CONGRATS!!! For the rest of us, hang in there! We will get through this, one day at a time!
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footballnut, I want to be in your fan club! You are fearless and never forget that. I love how you are relentless with your passions. A true inspiration. You make me smile.
Lots of us are going through the weekly chemo and som like you and me didn't have it on our radar when we started chemo. Like everything else, you will get through it. The harder part for me is not feeling like a get a break from chemo girl. But, taxol weekly is soooo much easier than dd taxotere. Yuck! Best f luck with your on and infusion Wednesday. I hit the chair tomorrow and afterward I can celebrate only 9 left!
I hop
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MommyQ- Yes they could have used my port for the surgery. It is true that nurses have to be trained for accessing a port, but more training is being done.
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mikishelley: That's good to hear. I'll have to think about keeping mine a bit longer then. Thanks for the advice. I don't have my exchange surgery until Spring 2015, due to radiation following chemo, and a 6 month wait period between finishing rads and the exchange surgery, to allow all the skin/tissue to settle-out/heal to a steady state. So, I'd have to keep mine in for at least 8 months after my final chemo.
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my MO instructed me to take a baby aspirin with the tamoxifen.
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Super jealous tonight of all those done chemo!
Feeling a bit down today. I am still in hospital and will be here until at least Friday
Another 6 IV attempts today.. no veins left so PICC with daily blood thinner injections. Ultrasound of my left boob reveals a seroma but no abcess. (Could be better but could be worse too) And it sounds like my next TWO weeks of chemo are going to be postponed or canceled... I miss my husband, my daughter, and my bed. I see them for a couple hours but it's not the same.*sigh* I know this is temporary, I just hate anything messing with my plans, even when it's my own body. Traitor.
Tomorrow will be better, right?
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Clarrn, it will get better, one day, one step at a time. I'm so sorry things are so sucky for you. Hugs to you and everyone who needs them.
I am so happy for those done with chemo. You did it! You rock! You win! Yay! I have to admit I am a bit jealous too, but in a good positive, motivating way. I am starting taxol tomorrow and am pretty nervous. I'm not yet fully recovered from AC number 4, and I just don't want to go back to the chair. Also, I developed this weird rash that my nurse told me could be an autoimmune disorder. What!? I don't want an autoimmune disorder. I didn't order this. Take it back! We'll see what the doc says tomorrow.
I'm glad to hear taxol has been easier for you, Mmtagirl. Hopefully, it won't send me to the dark place, and I will be able to visit here more regularly and keep up. I think of you all so often and am wishing you well.
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Clarn, so sorry! That just sucks. Sucky sucky sucky. If this is the low point, then things can only get better. Gentle hugs.
I've decided to stay home from work today. Hopefully I can persuade my well-meaning sister to go do touristy things so I can spend the day on the couch in a vegetative state and maybe have a meltdown. I haven't had one so far this round.
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The whole thing sucks, beginning to end, but so sorry for the complications
Cold helped me make my final decision. That reaction to the last infusion of carboplatin sounded awful. So at my infusion yesterday I asked the nurse about it. She confirmed it which confirmed my decision to stop at 5. I also have no veins left and I'm not getting a port for one more infusion. So I guess I'm done and even though the dark place has not quite descended, I hope I can get through it more easily because it's the last one.
I had a seroma too but my dr drained i several times and it didn't get infected. What a bummer to be in the hospital! I really feel for you. But it will pass, hard as that is to believe. I hope you can find some diversion and some comfort in that you're being well cared for.
My heart goes out to you.
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good morning! Today I have bloodwork and meet with my onc in preparation for my next round of chemo tomorrow
I am so scared of the side effects this time around. I am just starting to feel so much better - tummy good, eyes good, taste buds good- no pain- ugh!
Was on treadmill for 40 min yesterday and did weights.
Will try to continue as it feels so good to workout!!
Can't wait for end of chemo!!
Have a good day all!!
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40 minutes! Amazing! i can barely walk a block. Have to stop to catch my breath.
Better days ahead! For all of us.
Nothing to fear but fear itself, right?
I was petrified of my infusion yesterday but it went well and I feel fine today.
I think the steroids have a way of making it easier.
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Question for my sisters - according to the Canadian breast cancer foundation - The following ingredients can increase risk of disease including breast cancer - phthalates, parabens, alkylphenols, fragrance or parfum and placental extracts.
Do you check products that you buy such as lotions, soaps, shampoos and cosmetics for these ingredients prior to purchasing?
Crap - I just remembered that I have to take my steroids in prep for tomorrow! Tx Timbuktu!!
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FBN: good luck today!
Everyone: best of luck with treatments this week and minimal side effects. This road…ducking chemo!!
MY LAST CHEMO is today!!!! I can't wait to get to the other side. Thanks to all those who've posted about what it might be like.
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I do worry about all of those chemicals. EVERYTHING is in plastic and I didn't know about perfume but I use it every day! There is a site I joined but I'm so sick of reading all of the warnings that I kind of tuned out.
My dil, who is a dr, is extremely careful about these things as she's a nursing mother. She only shops at Whole foods. I told her I bought some soap from Whole foods. She told me she did too but then she found out that her 'natural" soap had "natural" bacteria. So she was washing herself with bacteria!
Sometimes you just can't win!
I wish our FDA was stronger.
I'm also on a blood pressure med, spiranolactone. It comes with an insert that says that it's been shown to cause tumors in mice. How can they sell this???? I told the dr I want off of it and he said it's an old medication and he doesn't think it's a danger and I'm not a mouse but once I'm done with treatments we'll try to get me off of it. I never had a tumor until I went on Spiranolactone about 4 years ago.
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And there's an app called "Think Dirty" that helps you avoid all those ingredients. Problem is, you can't shop at Target anymore. I tried using the app that rates all the products from 1-10 in terms of toxicity, and in Target, there were virtually no personal care products that weren't in the 7-10 range. So, I plan to ease into the transition. I worry about my kids with all these chemicals, especially. Even a lot of products that are organic don't score well because our FDA hasn't stepped up.
Timbuktu: The thing about doctors that amazes me is all these things they recommend for us…they don't seem to be looking at natural remedies at all. I don't know if that's the answer, but all these drugs and chemicals have to be contributing to the high rates of cancer in the US. Not to mention GMO's and everything else we're exposed to. Ugh. How do you protect yourself?!
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jhodro - congrats on going in for your last one today! You WILL feel better after you get past the usual stuff.
Hope your conversation with the doctor goes well, FBN. Make sure and share your concert pics.
Timbuktu - I try to be sensible, but after working years in a lab as a chemist, I'm not going to worry a whole lot about it all.
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does anyone else feel like you have 2 cement shoes and can hardly walk around the house without catching your breath? My dr was right, the fatigue is cumulative. Sucky, suck...suck! When will this go away? So depressing.
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Ddkath - absolutely. I've been moaning about it as well. I really can't get a grasp on whether it is "normal," or just me. Literally, after week 3, I could not stand up for more than a few minutes at a time. My legs felt so heavy and then my back/neck would ache. After my last tx, I just sat in my chair all day. I know this made it worse, but I could not walk.
I am now 3 weeks PFC, and I'm walking a minimum of 30 minutes per day, broken up in several intervals throughout the day. Hope to be up to an hour a day in 30 days. Definitely feels better to get exercise, but still exhausted when I walk up stairs!
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Footballnut: I only found out about all those chemicals being bad for us recently so I DO now pay attention to the products I buy & try to avoid them, mostly in products that cover a bigger percentage of my skin surface area. So, I look at body lotions & sunscreens mainly. As far as cosmetics, I figure they are applied to a much smaller skin surface area, so I'm not as concerned there. (Note: I only eyeliner and eyebrow pencil, so that's why I'm not as concerned regarding makeup).
Many companies do offer good products without those pesky bad chemicals. I just bought a Burt's Bees lemon oil to use after showering because it's 100% natural and smells good without artificial perfumes. Everything Burt's Bees is 99% or 100% natural. I also like their lip shimmer, which smells like peppermint and adds a bit of natural looking color, again with no synthetic perfumes. I also use a Body Shop Aloe body butter, which doesn't have any of the bad ingredients and is fragrance free.
I also started looking at sunscreens and trying to switch to physical blockers, meaning ones that use titanium oxide and/or zinc oxide, which don't get absorbed into the skin, instead of the bad bad oxybenzone, which is readily absorbed and is a hormone disruptor (BAD!).
But I do allow myself to spritz on perfume here and there as a treat because I LOVE scents and can't give them up 100%.
Moderation is key to everything, IMHO.
jhodro: Congrats on your last chemo! Whoo hoo!
Ddkath70: You're not alone. A bunch of folks on this board, myself included, are always out of breath even just walking a few steps. The fatigue IS cumulative, like they warned us. It just sux. I can't wait to get my energy back. I also started getting muscle aches after my TC#4. My leg and arm muscles all feel like I've done a crazy workout after doing such minor things. Do you have that issue too? I wonder, since you're also on TC.
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Thanks for the warning about Target. I think in the end if consumers refuse to buy these things the stores will catch on. But it is so difficult to stay up on everything.
"Natural" doesn't appeal to me as arsenic and cyanide, etc are natural too. I like to think that things have been scientifically proven safe. I think there used to be a law that anything that caused cancer had to be taken off the shelf. I remember cyclamates, I used to drink a lot of them in diet soda but when it was found to cause cancer in rats, that was the end of them. But something has happened since then. I can't figure it out. A friend of mine whose husband was a scientist told me that the FDA has been weakened, a lot.
My dr. told me to take L Acetyl Carnitine for my neuropathy. When i asked her about the data she said it was "mixed". She said it was a supplement, not a real drug. I was shocked that she would recommend something that was not controlled by the FDA. She said "we like to go natural first".
I told her I liked science. Anyway, out of desperation I've been taking it. On the label it says it has al lot of disclaimers.
Even Dr Oz is recommending untested remedies. It's getting hard to know the difference.
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MommyQ/Sharon, I do feel some muscle weakness, but I thought it was because I have Fibromyalgia. Just thought maybe my SEs are intensified because of that. I also wonder if I'm retaining water because my whole bottom half feels like it's 1000 lbs. I've been doing leg excercises and doing what I can around the house. I can't walk outside because I live in AZ and it's a balmy 109 degrees. I would pass out for sure. Lol
I have never felt like this before, and haven't felt it get so bad until treatment #3. My final treatment is next Tuesday and I really can't wait until this part of the nightmare is over.
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Timbuktu: You're right. If the consumers stop buying the "bad" stuff, the stores will change what they offer. But it's going to take a lot of educating to get the consumers to understand what's bad. I personally never looked at ingredients a couple of years ago...blissfully unaware of all the bad stuff. And I also agree that you can't just take the fact that the label says "Natural" and buy it. We need to actually read the ingredients to see what's in the product, and understand what are good and bad ingredients. I'm learning a lot this year about what these are so I can hopefully make smarter decisions going forward.
Ddkath70: I suppose it could be a combo of the chemo AND the fibromyalgia. Have you tried acupuncture? My sister-in-law has fibromyalgia and says it helps her a lot. 109 degrees is way too hot to go out! I know people say it's a "dry heat" but 109 is still HOT.
You're lucky you're almost done with chemo. Yay! I have #5 tomorrow but I am doing a total of 6 so I finish mid August. I also can't wait until the treatments are complete!SharonDe: I can't stand up for very long either. I guess it's all related to this muscle weakness we're experiencing. It's good to hear you're working your way up to some exercises. I plan to do that too after I'm done in August.
Well, on this day before the chair, I felt well enough to meet my coworkers for a fun lunch to catch up. Since my treatments are 3 weeks apart, I've been scheduling lunches every 3 weeks, right before each chemo. It's been a good way to keep in touch with everyone at work, since I'm on short term disability during chemo. Everyone is so supportive, it's nice to see them.
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You made me laugh! The "chair", like the electric chair, yes!
And I too schedule lunches during week 3. They are like mini-vacations.
But right now I'm on a steroid high and I don't know what to do with all of this energy. The calm before the storm!! And amazingly I have zero appetite! It's all good today...something to look forward to after the "chair".
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Hi all
Appreciate ur thoughts re chemicals. I truly never looked at anything - I just used what worked for me. For example I love oil of at Shea butter creme and body sips but they both contain the bad chemicals. But it stops my itching!! Ugh!!
Met with my onc today. He is switching me from taxotere to taxol and I will have infusions for the next 6 weeks. No more neulasta. I will continue the herceptin on a 3 week cycle for 1 year
So hopefully my SEs will be minimal - this is what my onc expects. Minimal pain and tummy issues
I love him. He is so easy to talk to but it's funny how one can interpret things. He mentioned that he wants to get me through treatment with minimal SEs so that I can move on for months and years
I walked out telling my hubby that this means I don't have a long life expectancy. Hubby said that's not how he heard it given past things that my onc had said which included my onc previously saying that I have a good prognosis based on my type of cancer
Funny how we interpret things
So hopefully things will be better after tomorrow's infusion. Now instead of 2 more rounds and being done with chemo by mid august, I have 6 more rounds and will be done with chemo the week before Labor Day. I'm cool with that as long as I have a less SEs
I also got Tylenol 3 incase of pain as percs went straight to my stomach
I'll be in the chair tomorrow at 10 then countdown every week!!!!
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Footnballnut- I love my Taxol. I hope you will too! We will finish around the same time.
Verdict for
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Clarin - so sorry that you are having such a hard time - ughh - hope things make a turn for the good for you soon!!
Well - my last chemo was three weeks ago - I managed 4 out of the 6 . My liver enzymes climbed yet again last blood test and my MO and I agreed that I shouldn't do the last two. Part of me is relieved and part of me is scared and nervous that I wasn't able to finish. I will continue with my herceptin for the next nine months and will start taking Anastrozole for the next 5 years. Now I wait for the enzymes to hopefully return to normal so I can schedule my exchange surgery and start looking for hair growth!! I will be around and hope you all are on your way up.
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Clarrn - hope you are feeling better and not too bored in the hospital.
Linda - congrats on being done, even though it might not have been the timing you had originally planned. You still did a significant portion, and protecting your liver is important for the decades ahead.
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Timbuktu: Haha, yep, to the electric chair we go tomorrow!
You're right-on about the mini-vacay lunches. Good distractions and reminders of our normal lives that we'll get back to soon!To prepare for the chair, I thought I'd go to Target & pick up some yogurt to eat this week (to hopefully help with chemo-induced-bad-tummy-week). So before going, I was thinking that while I'm there, I might as well pick up school supplies for my 8th grader. So, I go & arrive home from Target with the school supplies, but no yogurt. Chemo-brain attacks again.....argh!!! Sigh. I even had a list. Oh well. I'll go out later after dinner & get my yogurt at the grocery store. I like their selection of flavors better anyway.
Footballnut: I hope you have better luck with Taxol than Taxo-terrible. I'll be in the chair tomorrow 9:30am for Taxo-terrible. Interesting what you said about different interpretations. My husband and I do the same thing too. We hear things totally differently and sometimes one of us hears something the other doesn't hear at all! I think different people just have different expectations and that causes us to hear different things. That's why it was great to have a companion during all the initial diagnosis and planning of treatment appointments with all the doctors! Re: bad ingredients, I see you like shea butter, too. The Aloe body butter I use has shea butter as the #2 ingredient (after water) and seems to be free of the bad ingredients (as far as I know...please correct me if I'm wrong). If you're interested (and no I don't work for them and am not pushing their product!), here are links to both the Canadian and the US product pages for this item, which list the ingredients in one of the tabs on the page:
http://www.thebodyshop.ca/en/body-moisturisers/body-butter/regular-body-butter/aloe-body-butter.aspx
http://www.thebodyshop-usa.com/shop-by-line/aloe-skin-care/aloe-body-butter.aspx
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Whew. Finished my morning 10 minute interval walk - 2 more to go today. I feel sooo lame that 10 minutes makes me tired. I didn't want to walk, but was planning our Sept Disney trip, and when I found myself wondering if I would need a scooter, I got motivated to get out the door!
Bless you gals who can do 40 minutes on the treadmill during treatment (FBN!).
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In da chair for TC#5! Just got my Kytril & now getting 20 mins of Emend. Taxotere & Cytoxan to follow. Talked to my MO right before the chair and she said she doesn't see cases with lung or heart damage anymore due to radiation because rads have gotten much better these days. Whew. Good to hear. I noticed that I had some prominent looking veins in my legs so MO wants me to get a doppler run on them to make sure I don't have some blood clotting going on in the area. CLOTTING? Scary to me. She didn't sound worried about it though.
Sharon: Disney is a great motivator. I was tempted to use the scooter at Target recently but huffed it around the store instead. Great cartoon!
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Sharon, I LOVE that cartoon and will put it on my fridge. I'm normally happy to be a strong, independent woman. But there's nothing like cancer to turn a strong, independent woman into a weak, tired woman. My sister left this morning and I know when I get home from work I'll have to unload the dishwasher, put away the blow-up bed, wash the sheets, blah blah blah. I haven't yet paid the credit card bill from my Fourth of July spa weekend of pampering, so I guess it's too soon to plan another one.
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Love it Sharon
And way to go on the walking! Just started walking a bit ago too... time to get back in shape! A big smile on my face today. And definitely thinking about those who are in the dark zone right now. Hugs to all!
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Way to go on all of you ladies getting up and moving
. Even a little will go a long way to getting back the stamina. I got the go ahead yesterday to start back so this afternoon I have a date with Shaun T and T25. . I need to motivation and the stress relief. I was back in the chair for #7 yesterday which went okay. My magnesium was once again low so I needed and infusion yet again. I don't mind but it's a two hour drip that feels like forever when it is all added together. My side effects have stayed kinda steady so that has been nice to know why I feel that way and what day but I am still ready for the last taxol to be done.
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Good for you on the Shaun T!! I used to do his longer video (insanity) up until my biopsy. Hence the reason for my 20+ pound weight gain since all this happened in January. I look forward to getting back to it. Maybe I should try the 25 min ones as soon as Rads is over. Ease into it. Let me know how you like that format. Glad to hear your SE's are steady. That's so helpful!
I was up all night due to the steroid during yesterday's last taxol. So happy to report no steroids needed for the Herceptin only treatments going forward for the next year!!!
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Jaimieh- love T25! I was doing it before surgery and can't wait to get back to it. Have fun
I am so amazed that you can do it on chemo! Superstar! -
Love me some Shaun T!!! I was doing T25 religiously before I was diagnosed. I loved that in 25 minutes you were DONE!!! And, it was no walk in the park.
Just finished # 4 , LAST ONE, on Friday. I have truly been very fortunate when it comes to SE's and counting my blessings!!! Up until this one, I had tx on Friday, worked from home Monday then back at work Tuesday. My tummy has been just off, sleep patterns were off and the WEIRD tongue/throat thing. One strange thing is the sinus/ear infection 1 week after each tx.
This one was diff, I didn't come back to work until today. My biggest concern was the walk in from the parking lot! I strongly considered resting on the bench just inside the door, then getting to my desk! I've had a couple of episodes of being really lightheaded!!! Haven't passed out, but have been concerned. Has anyone else's BP been elevated? I'm trying to figure out if that is an se, or "white coat" syndrome when I go to cancer center.
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As you can see, I never lost all my hair. I've lost about 40% of it. It was coming out slowly, and I have (had) very thick hair, but after treatment 5 it started coming out a lot more. I have fingers crossed that it won't be as bad after yesterday's infusion, but no high hopes. My daughter is getting married in October so holding onto my hair was a big deal. There was actually a discussion with my MO about that in my consultation so I'm not quite sure if it's a happy coincidence or he tailored my meds in such a way... Either way, I'M DONE!!! Just have to go for my Neulasta shot this afternoon. Then after a 4 week break we move on to radiation. The curtain is beginning to come down and I should be in the dark place within a couple of days... Hope everyone is feeling good today. xo
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Longisland...congratulations! You look great...although I admit I'm a little envious of all that gorgeous hair on your head
Good for you!Love that cartoon, Sharonde
I'm happy to read there are some smiles and good days here for some of us...so glad to share the hard times and the good days with you all.
I have been a little depressed...I think my RO being on vacation until August 5 was making me feel frustrated and not in control. I called his office to see if there was anything I could do to get my radiation expedited, and they set me up with an appointment with his colleague. I will also have a simulation (whatever that is!) on the same day. I hadn't expected that, and it's only a week sooner, but boy do I feel good that I called. It is a week that I won't feel is wasted, a week sooner to feel like I'm getting this crap done! Breast surgeon is still on leave, so I still have to live with my port longer than necessary, but at least I'll be getting my rads
Our AC is broken again! Third time this summer...and these 99 degree days are brutal. Hope the repairman gets here soon, as these hot flashes and night sweats never let up when my home thermostat reads 89 degrees!!
Hugs to you all!
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Longisland!!! woo hoo - hope the dark place doesn't last long!!! congrats!! And wow nice way to hang on to the hair!!
Swissmiss - ughh on the AC - I know I couldn't take it right now if mine went out!! I would have to go stay with friends or family.
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Lngisland, Congrats on last chemo and keeping your hair!!!
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I never lost my hair with CMF. It just thinned a bit.
Taxol is another story.
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Hello April Sisters!!I have been lurking here for months and have come to just love each and everyone of you! I really thought I could continue to just lerk but have found myself wanting to share and ask questions.... so here goes.
I found my lump trying to position my large breast in my large bra and holy crap...what is that. Was DX early Feb with 2cm IDC in the left and oh... they also found DCIS in my right breast. From the start I decided on the BMX without question. Had surgery on 4/7 and found out that 1/15 lymph nodes was positive on the left side. (ER+ PR- and HR+) Grade 3. I do not have ANY family history and actually have not know anyone with breast cancer over my 55 years , Surprise!
I love my BS, MO and my PS and would not trade them for anything as they have been honest, up front and have answered all of my detailed oriented personality questions.
I am on the TCH cocktail and am doing OK... I say OK because of each of you. Your post have allowed me to confirm that all is ok with the SE's that I am having. I have everything ready for anything that can happen thanks to all of you!
I have number 5 of 6 on Monday and am very worried about the fatigue as it is the worst for me. Standing and pealing two potatoes is good but add the third and I am screaming that I can do three then try to run to the chair to rest. LOL
I have a Fitbit and try so hard to get at least 5000 steps per day but sometime it is just too much. I feel like I am 90 some days but reading here helps me more than you will ever know. .
Thank you all and everything each of you have done for ME and I hope that I will be able to add to the team as we continue our journey.
I truly love each and everyone of you. You will never know the impact you have had on my life and my BC journey. One just hopes they can pay it forward.
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Welcome to BCO BlessedMe
We have many lurkers and that is fine. When they want to post, they join, which we're glad you have now. Fatigue is oftemn a problem - as you'll have read SEs vary greatly, but at least you know you are not alone. Mutual support is valkuable a times like these and we wish you the best after No. 5 & 6.
The Mods
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blessed me welcome. TCH is a beast. I had 6 rounds last time and had low magnesium and was anemic which made me exhausted. It took a couple months to recover but eventually I did recover and feel great again.
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Jaimieh,How refreshing does feeling great again sound! Thanks for the hope.
Round 2 must be a tough go. Are you getting a different chemo this time?
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BlessedMe - Welcome everyone has something to add to the group (maybe you'll help another lurker). I agree with you that the gals on here are amazing!Swissmiss - A simulation is where they will locate the exact spot to radiate which includes putting small pinpoint size tattoos (usually 3) that they use to line you up in the exact same position for each time and they will make a mold they will put you in each time. The tattoos feel like a small poke and they don't generally hurt. The mold is foam that they let the air out of and it makes a form of your upper torso and will have a place for your head. Word to the wise... make sure you are comfortable as they can deflate and try again until you are as you will be in that position each time. There will be some lining you up and double and triple checking for accuracy. Hope that helps.
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Welcome Blessed! Even though I go through spurts of posting, I read everyone's updates almost daily. I feel like I really know you all.
I am 6 1/2 weeks PFC and want to share that I'm really starting to see hair now...I'm obsessed. Also, the fatigue is so much better!!! I started back to work this week and I'm tired, but I can do it. Compared to where it was, it's so much better now. I really does get easier and most moments I am feeling really great. Just those darn hot flashes sneak up on me. I'm sure I'll get used to them eventually.
Hugs to my friends/sisters!
Holly
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Hi Lovelove,
Thanks for the welcome! Maybe I will help some other lurkers and they will bake less cookies and such. I have made so many along with other treats and typing has to be less calories.
I said no to rads! Not so sure of the decision yet. Three days prior to my surgery a report came out showing that 1-3 nodes involved would benefit from rads. I had only one with a BMX so am taking a chance -Vs- the 2% gain. If I had 2 or 3 nodes positive I would have done rads. I still have time to change my mind but still leaning to no rads. I am fearful of heart and lung hits due to the BMX.
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Oh I forgot to add - I started tamoxifen 7/8 and I haven't noticed one single SE from it...Yay!!! There is HOPE!!!
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Thanks for the welcome HollyHope!
I have been reading post daily and also feel that I know everyone.
I am soooooo glad to hear the fatigue is getting better for you. I cannot wait! There are so many things I THINK I am going to get done in a day that my body just says hell no you can't do that. It is so depressing but I get on that horse and ride as long as I can. (about a minute LOL)
I can finally say, HUGS to All....
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welcome Blessedme. Glad you decided to come out. You will find everyone here so helpful and supportive.
I am 9 days past last Tx and am starting I feel better and get more energy. I have my first appt with my PS tomorrow to discuss recon. I'm pretty excited as I didn't have recon at time of surgery.
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Ddkath70, I also live in AZ. The heat just sucks all ambition from me. Fatigue is unbelievable. I figure we might be able to walk outside by October? Lol
Welcome BlessedMe! Glad you decided to join us. You will find tons of support here.
Longisland, so glad you are finished chemo!
Swissmiss, I hope you start feeling better. Summer heat always gets me down. Sure hope you get your AC fixed!
To everyone else, hope you have a better week. Hugs, lilyrose
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Got to sleep just fine, but awake at 2:30 so here I am. Damn! Had my week-after appt with my MO yesterday. My echo from last week looks fine, but my sitting pulse of 120 still concerns me, but not her. The fatigue and muscle weakness is just part of the deal.
One more chemo to go! I'm dreaming of my post chemo trip to CA and to my wonderful cabin in the mountains.
Holly, glad to hear your hair is returning, but not so glad to hear you're still having hot flashes. Not cool.
Now I'll put on some relaxing music and see if I can go back to sleep.
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Welcome Blessed me!! Glad you are here to join this great group of fighters.
Last chemo this morning! You will get there too!
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Longisland - congrats on finishing!
BlessedMe - welcome to the TLC (tired ladies club). Fatigue seems to be worse for some of us. I smiled at your two potato / three reference.
Nancybel - glad to hear your energy is returning.
Holly - also good to hear no SE from the tamoxifen.
Lilyrose - I can imagine the heat in AZ, having lived there for 3 years. Is be staying indoors.
I start arimidex soon, and am planning to have no side effects
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Ever, the last two dr visits I had pulses of 132 and 112. I am on beta blockers and never have a high pulse. So the last time I asked them to take it manually and it was 71! Those machines are not very reliable even though by bp was normal. I don't know if this applies to you, but it might be worth a try to take it manually. I hope it's normal!
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That's good advice, Timbuktu. One time they took my pulse again at the end of the appointment and it was significantly lower, so you're probably right about the accuracy of the machine. Next time I'll ask if they can also do it manually.
The end is in sight, sisters! Hang in there.
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Everforward- my pulse was sitting at 110-125 too...but had to miss chemo yesterday and my pusle went down to the 80s last night and has stayed there. (I have had the advantage of having my vitals taken at least every 4 hours over the last 7 days in here) 6-10% of people get a taxane induced tachycardia and looks like we might be part of that club (or yours could be not reading right like Timbuktu suggested). My MO isn't worried about it either.
Congrats longisland and MomMom!
Welcome Blessed.
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oops - forgot to wish MomMom good luck with the last chemo.
Only one more to go, Everforward!
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Clarrn....thinking about you and your PICC line. How is it going? Hang in there....I know it stinks...I had one in March/April. When they get a handle on this, will they let you go home and finish IV antibiotics there? Hopefully, you will be able to do that. I know, the hospital is lonely/boring...I just kept doing laps around the RN stations... I at least felt like I was doing something for myself, I couldn't handle laying around. My general disposition seemed to improve. Also, if you get the chance sit in the sunshine in your window, if possible. That seemed to help too. If nothing else, good people watching opportunity to the "outside" world.
Hugs...
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they had to stick me 4 times to get a vein- am wondering how the hell they are going to do my next 5 taxol- then herceptin/perjeta for a year. I know some of you are in the same boat. Am loathe to put port in at this point. Any advice or suggestions? Thank you ladies!
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Getting a port is not a big deal. The procedure isn't terrible. There is some discomfort, like a tightness around the spot where the tube connects to the artery. But compared to how *miserable* I would be if they had to use only the veins in one arm for an entire year (chemo + Herceptin), the port is a lifesaver. If you are very worried about it and were only doing a few rounds of chemo, I might advise against it. But if you have tricky veins and are doing a year of treatment, IMO, it's totally worth getting a port.
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thanks, ever! I will discuss with MO. Or as I refer to her--ms. Optimistic! ( sarcasm)
Sandra
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Mscaruso - I would definitely get a port - I can't imagine getting stuck so many times for the next year and really I had a couple days of minimal discomfort from the surgery.
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Last Chemo Day! YAY!!!!!! Poster made by my oldest grandchild, 13 yr old Lindsay, such a sweetheart! Can't believe this part of it is over - five long months. Onward to 7 weeks of rads in a few weeks!!
Mscaruso, Although I hated my port for the first few months because it hurt while sleeping if I moved the wrong way, it was a real blessing for all those infusions. Having said that, I can't wait to have it removed:-). I don't think you would be sorry if you get it. Makes infusions SO much easier.
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You really don't look your age MomMom! Congrats and good health for many years to come!
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Timbuktu, Aww shucks, Thanks!!!
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Congrats to all who are finishing or finished! Yay!!! I will have my last Taxol next week, then it is just Herceptin for a year.
Just finished blood transfusion #2. Hemoglobin just couldn't hang on :-(. However, had a nice chat with one of the volunteers there who is a 7-1/2 year breast cancer survivor. Always good to hear the success stories :-)
As of this past weekend, appear to have developed cellulitis in my surgical breast. Was put on an antibiotic on Tuesday, but it doesn't seem any better. Am seeing my breast surgeon in about 1/2 hour - was supposed to be a regular 3 month check up and was hoping he could see the "new normal" breast. Nope :-(.
Was supposed to have the simulation for rads next week, but that will be out as long as this swelling is present. Very disappointed and frustrated with this - so close to the next step, yet so far.
Can't remember who it was, but someone was questioning whether to get a port? GET IT, best thing ever :-). As I was getting my transfusion today, it took two different nurses to access someone's vein for an IV - they were getting ready to call the IV team. If you are going to have to have Herceptin for a year, it Is worth it. I get all of my blood draws through my port as well. It was uncomfortable at first, especially if I reached for something or tried to lie down on that side, but that didn't last that long. A month tops? Now I don't notice it at all, but am thankful for it every single week when they have to access it.
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LADIES! Whew! I have been MIA - that Carboplatin reaction + all the extra meds + chemo meds in general = I have been SLEEPING for the past FIVE DAYS. But as brutal as The Dark Place was, I am SO HAPPY.
Not only did I survive all six rounds, I totally KICKED IT.I've been trying to catch up here. Congratulations to all of you who have reached the finish line (waving my pompoms for you MomMom, jhodro, and Longisland, and any others than I've missed!)! Hooray! I'm sitting here celebrating with you. When I get my energy back, I'll do some Happy Dancing in your honor.
clarrn - I am SO SORRY you're stuck in the hospital.
I remember the worst part of it was missing my babies and the complete and utter BOREDOM. Hopefully they get everything sorted for you soon.Mscaruso - I second the getting a port advice. It wasn't fun to have it put in, but now I barely even notice it's there. And my poor veins are sore and tired just from having my blood work done - I bruise every single time now, no matter how small the needle.
BlessedMe - Welcome! The fatigue with TCH is NASTY, but it's temporary. I was a runner before cancer - I ran my first half marathon in January - and now it takes me a while to work up the energy to get off the couch to pee. But this too shall pass, right?
footballnut - We switched to organic skincare products right before I was diagnosed with cancer. My daughter suffered from horrible eczema that just wouldn't go away. Here are couple of Canadian companies I'm particularly fond of:
http://www.rockymountainsoap.com/
I also REALLY like The Honest Company for their hand soaps.
Can I just say that I love you Gals? I love how you all lift each other up through everything. I feel like I'm a member of a Super Hero club. I really do.
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Hi everyone. I haven't posted much and it has been a while since I have posted, but I have read every single post. Thanks to everyone who has taken the time to post about their experiences. I am sure your posts have helped many.
Congratulations to those who have finished or will finish chemo soon. My last chemo (#6 TCHP) is tomorrow. This has been one heck of a ride. I am extremely nervous about tomorrows treatment. I am already exhausted and do not look forward to the dark days that lie ahead. At least I know the dark doesn't last forever.
Praying for you all and wishing you all the brightest of futures.
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C*O*N*G*R*A*T*S MOM**MOM!!! Your granddaughter did an OUTSTANDING JOB on that sign!!! I too will move on to Rads in about 4 weeks.
HollyHope, thank you so much for the hopefilled post!!! About the hair and the tamoxifen!!! WooHoo! Happy for you and more hopeful than before. I was worried about how much hair I'd have left for my daugther's Oct. wedding, but sounds like it will hopefully be filling back in by then. And I was more than worried about SEs from Tamoxifen, now I have a little less anxiety.
Make Lemonade, I am sorry you are having a rough time
I hope things resolve soon for you.BlessedMe that was a lovely introductory post. I am glad you are benefitting as the rest of us are from the personal experiences and sisterhood here.
Thanks for the congrats everyone. I would like to invite anyone who is interested to friend request me on Facebook. My screen name is Jeanne Musella-Fling.
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It's 80 degrees and sunny today. WHAT? But it's July!!! Yes, it's unseasonably pleasant for us today. Normally, it would be 95-100 now. Just enjoyed a beautiful top down ride to the hospital for my Neulasta shot. Now I'm just dreading the muscle aches that are sure to come! I'm starting to feel a little tired, so I'm trying to catch up on this board before I go into chemo-induced hibernation for the next 3 days!
Lakegirl1: I too need lots of rest stops when walking, starting about 5 days after infusions, and they last about a week to a week and a half. I think it's anemia. I also had one day when I felt lightheaded. I was outside in the heat and humidity and drinking a hot Starbucks mocha. I went inside the air-conditioned Starbucks, took my pulse (120 bpm!), stopped drinking my mocha, and downed 16 ounces of water. I felt a bit better about 1/2 hour later. I've been minimizing caffeine since then and making sure keep hydrated & cool. Seems to help.
Longislandl8y: Congrats on finishing chemo! Yay! You're so lucky you got to keep a lot of your hair! I'm completely bald from TC. Best of luck with rads. I will be joining you in that about a month later.
Swissmiss: Not the A/C again! Hope they fix that for your quickly. Glad you were able to move up your sim. Let us know how that goes.
BlessedMe: Welcome! Glad to hear this board has been helpful for you. It's so great that we can share our stories and help each out!
HollyHope: That's reassuring to hear you're getting your hair and energy back, and Tamoxifen is going well! Woo hoo! Things will get better!
MomMom: Congrats on finishing chemo! Woo hoo! That was so nice of your grandchild to make you that poster!
clarrn & Everforward: Sounds like a lot of us are having the issue with the high pulse rates. I have it every cycle, from day 5-10. My MO said not to worry about it unless there's bloating in the legs/arms, chest pain, difficulty breathing, or lightheadedness. On the flip side, I noticed a super LOW pulse rate on the night of infusion #4 of 49 bpm! Freaked me out. I've never seen my pulse rate drop below 70. Ever. In my entire life. Last night, after infusion #5, I measured 55 bpm. Still low but not as frightening. It's working it's way back up today, around 80 already. Do you (or anyone else here) get the super low pulse rate on the night of chemo?
Mscaruso: With a year of treatments remaining, I recommend you get the port, also. I didn't like it for the first 3 days because I had some muscle aches from the way the doc positioned my head during the surgery, but now, I'm glad to have it for my infusions. Much less painful that finding a vein in the arm!
MakeLemonade: Congrats on coming up to the final Taxol! Sorry to hear about the cellulitis. Hope the meds start working soon or they get you something better.
ColdInCanada: Congrats on kicking 6 rounds!
applepop: Early congrats on finishing! Last round of dark days to be followed by much better days!
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I am so glad I got my port. I went for my CT scan on Mon and left my powerport card in the car. They had to use my veins and even though I have great veins they hit a valve 4 TIMES!!!. Finally got it on the 5th stick but I almost jumped off the table to run to the car and get my card. Ass flashing be dammed.
MomMom - Congratulations on your last chemo.
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Lakegirl - PICC line clot
so 3 more months of injections. Apparently it's super rare to get a blood clot while on blood thinners. I am pretty special. I putter all day in here. I start with making my bed with new linens and hospital corners, then I wipe down everything with the antiviral wipes, then I shower, then go for a walk. My first of 4 everyday. I get to go home tomorrow !!! They switched me to oral antibiotics and hope my veins heal enough in a week for chemo. I hope so too. 5 more blood draws, 5 more taxols.... come on veins! You can do it! -
hi all!
Congrats to all for making it through. We are either finished or in the homestretch!! Woo hoo
As for me my onc changed me from taxotere to taxol which I will have infused for the next 5 weeks. This means that I'll finish chemo the wed before Labor Day weekend instead of mid august
Yesterday I had my first taxol with my 2nd herceptin which stays on the 3 week schedule. In between herceptin and taxol I get Zantac, Benadryl and a steroid. I was so zonked!!
So far so good but no poop today so I took my meds to try and stay ahead of the game
I also got Tylenol 3 in prep for any pain because I hated the percs
I have been told by my onc, nurse and pharmacist that this should be much easier on me.
I no longer need the neulasta shot so am hoping for the best
Tomorrow night we are going to try and have a band rehearsal. Can't wait!
Wishing a good evening to all!!
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Sheesh, somehow you are all adorable! I'm not posting my pic, for sure!
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Clarrn, footballnut, we finish about the same time. I'm done 9/2, then probably rads.
Thank you a for the advice- will call MO and discuss. She and I don't always see eye to eye, so let's see how it goes.
Sandra
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lilyrose53, you know what I'm talking about when I say you can't go outside, never mind a walk or exercise. It was 114 today!! Not sure why I picked today to go out to the grocery store, but I did. The fatigue is bad, I know the heat doesn't help, but I feel like I'm 90 years old. At Safeway They must have asked me 1million times if I want help out, which was weird to me having grown up and lived in NJ my whole life, and today I finally said yes. As a matter of fact, I could use some help out! Lol.
Congrats to all of you who are done!!! It must feel so good! My last one is on Tuesday and I'm counting down the days!!! One more meeting with the dementors ( I love that BTW).
Long Island good for you for keeping your hair ! Mine never completely fell out out, don't get me wrong, I'm mostly bald, but I have more like a spotty crew cut and it's growing so I'm not complaining. Lol.
I've been really emotional this treatment, it's either it took this long to catch up to me or, I'm just exhausted and done with every aspect of this nightmare. But, I'm gonna shake it off come Tuesday and celebrate the last and final treatment!!!
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congratulations to all in finishing up ! Clarrn, so glad you can come home today. I remember my 5 days in hospital after round 1 were the longest and most boring days. I was begging everyone including the phlebotomists and meal servers to find a way to get me out of that place! FBN, I will be right beside you on the prolonged chemo timeline due to the switch to taxol. My last treatment is September 16.
Question, did any of you take glutamine for neuropathy? I am starting it and received my powder in the mail but can't remember how much to take. 1tsp = 5 g and mix with water or juice 3x a day for 5 days is what I recall. Sound right? I will call my nurse but thought I would check with you gals. Thanks!
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mmtagirl - 10 g 3 times a day on the lglutamine. I used juice - just a small amount mixed it in and downed it. I did it the day before chemo and for the next week. If I started feeling any tingling or numbness any other time - I would do it for more days then. I think some did it every day but once my dose was reduced on my chemo the neuropathy basically stopped for me anyway.
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Thank you, Linda. I am having some mild symptoms in hands, feet and face on taxol. Hoping to keep it at bay. Have a good weekend.
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Oh Mmtagirl - I also did B12 and B6 for the neuropathy -and am still doing those daily. Just thought I would mention that as my MO also suggested both of those - hope you have a good weekend too!!
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mmta - are you taking b6? I have been and only transient neuropathy for me so far.
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Good morning! It feels so great to read all your posts and sense the hope and relief and the pride...even with some challenges thrown in, we are all getting through this! Soon all of us will be saying goodbye to the dementors and hello to our hair
I had to call my breast surgeon today to follow up on getting my port removal appointment, and the receptionist reminded me I have my six month follow up visit on August 11. I cannot believe I had my surgery that long ago...I truly feel like I lost six months of my life! This has been such a foggy and treacherous journey...I look forward to putting it in the far away past. Hoping to get my port removed on the day of my follow up, one big step closer to completing the journey.
And I continue to obsess about hair...yes, it's only 9 days since my last chemo. Even nose hair would be welcomed! Any sign of hope would be wonderful, but watching hair grow is about the most hopeless activity around. I need to find something more productive, I know
. FBN if I looked as cute as you in a baseball cap, I think I'd be a little more patient!Congrats to all who are done with chemo! I'm thinking of all who are still experiencing SE's and challenges. Thank you all for sharing your journey with me
Hugs to all!
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hi sisters!
I am soooooo tired! Hard to sleep. Get hot then I'm cold then I'm hot!! Today woke up tired. Forced myself to run some errands now I might just lie down for a bit. I have band practice tonight so need some energy!
Atleast I popped today! Funny what we r thankful for these days!!! Lol
I'm also so tired of others telling me what to do or sometimes what they think. Examples;
- there's a cure for cancer you know. The corporations don't share because of the $ involved
- don't eat that. It's bad for you
- don't drink that. It's bad for you
Ugh! I'm eating the burger if I want to or the salami sandwich or the chips. I haven't had soda in weeks so I might have that too. Arrrrrgh!!!!
Okay. It's out of my system now. I think I better go lie down for a bit!
Atleast nfl training camps are open!! FINALLY!!!!!!!
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balloon wall update: some of you may remember my post from awhile ago, my husband built me this wall to help watch my progress and to give me some motivation to keep truckn through this nightmare. Well, I'm almost at my last treatment and I would say it's really helped. To see all the days that I've preservered and some with a struggle is all very empowering.
Congrats again to all of you who have finished!
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Good Evening All,Thanks for all of the welcomes and kind words. You ladies are the refreshing part of some very long days.
Congrats to you MomMom and Longisland for finishing chemo!! It is a day we all look forward to and I keep telling myself just 3 more weeks and I will be DONE . Guess then I will then start counting down the days till the last Herceptin.
SharonDe - Tired ladies club gives new meaning to TLC. Made me LOL!!
Mascaruso - I had a love hate relationship with my port for over a month. I did not like it one bit but I am now so glad I have it. Now I don't even know that little jewel is in there. I get so stressed after so many have missed finding a vein over and over. Why is it that they can call the IV team and they get it the first time? What's with that? Are they not all trained to do it the same way? Some say you can keep the port up to 10 years and that just might me be because I had nodes taken on both sides.
Brigadoonbenson- I would have been out to the car in a flash to get my port card! Pun intended...
MakeLemonade - How are the antibiotics working? I hope you are feeling better and congrats on your last Taxol next week.
ColdInCanada - Yes, you totally kicked it!! Hope you are getting stronger everyday and ready to celebrate! Let us know when your energy starts to come back. I am on the same treatment plan and am very interested in when you start seeing the fatigue subside. I am scheduled to fly from Atlanta to Seattle the 4th week after my last treatment and hope I have the energy to get there...Congrats!!
Applepop - Congrats on your last treatment today!! Hope all is well and I wish you few SE's in the days ahead. I so get the exhausted feeling. Cheers!!
Clarrn - Hope you are resting well at home. Sorry you are going through so much! Praying your veins hold up.
Ddkath70 - I remember seeing your balloon wall and it is looking mighty fine.
I had a wonderful day today! My DD came over with my 6 year old grandson. We had fun at the park then went to a ceramic place and painted our hearts out. I don't see him much between treatments so it was great to talk to him as he has such a honest outlook on life and delights my world.
I hope you all have a most wonderful weekend!
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MSC, I haven't tried the b6 but I think I will. My mom took it when she was on this treatment plan and it worked. Started the glutamine yesterday. Thanks for the suggestions.
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football, that "there's a cure for cancer" deal always baffles me. Don't they know that everyone gets cancer? It's amazing what people will believe. OTH, hopefully we all will be cured, by these treatments! Many are, every day!
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I've been off the radar since my last treatment. Riddled with fatigue and muscle aches. Its sure apparent we all have been experiencing that cumulative effect. I completed round 6 yesterday. My last. Then surgery on Sept. 4th and radiation to follow. One more PET scan before surgery. Fingers crossed it hasn't changed.
Thanks to everyone who have offered me support. You are an amazing bunch of women.
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Hot flashes and night sweats are running my life
I kept track, and in the last 24 hours I've had 11 "episodes." Five of those were during the night, interrupting my sleep. This seems excessive...what should I do? I'm not scheduled to see my MO anytime soon; should I call him? Or perhaps my gynecologist? Or is this a normal, passing thing I should deal with? Have any tips? Ugh...I am sick of being completely soaked with sweat all day. -
I am home
switched to oral antibiotics because of my terrible veins. Will see my oncologist Tuesday to see if I have to miss another chemo. Trying so hard to take it easy but just want to do so much that I missed out on the last 9 days. Thanks for keeping my spirits afloat while I was in 'detention'! -
Swiss- I am having a similar amount of hot flashes this week although I missed chemo so I thought it might be bc of that. Do you have the moisture wicking pjs? I think even Walmart sells some. And I have started putting 3 extra cotton sheets on top of my half of the bed. .. that way I sweat through one and just pull it off!
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hi all!
Each day since taxol my fatigue has been increasing but thankfully no pain!!! Taste buds are disappearing and I too get hot at night. Ugh!
Since my birthday is Tuesday I treated myself with KFC, fries and smarties. Oh and a caffeine free Pepsi
No junk for another few weeks!!
Had band practice last night it was awesome!!!
Hope that everyone has a great weekend!!
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5 bouts of night sweats a night seems about right if I am "normal". Swissmiss :-(
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you can put me down for night sweats too. I live in AZ so I keep it cold in my bedroom at night. My hubby calls it the refrigerator. Lol. Sometimes I take Ativan just to sleep through the night.
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I ended up having my surgical breast aspirated on Friday. It looked like the antibiotic was finally kicking in when I woke up Friday morning as there was less swelling, didn't hurt as much and slightly less redness. And even seemed a little better from the time I woke up to the time of the aspiration in the afternoon. However, it got a little more swollen after that and the redness is still there. I figured that was normal as, after all, it did get punched with a needle :-). However, it isn't better now and feels a little worse again.
I had forgotten that a biopsy or aspiration hurts for the first 24 hours! Haven't really had to deal with pain while on chemo ... Just feeling like crap half the time. So this surprised me. I should have felt really good this weekend after the blood transfusion, but now have to deal with this.
Surgeon wanted me to call him on Sunday if there was still swelling and redness as he is on call all weekend. Guess I will be calling him in the morning. He will put me on a stronger antibiotic.
Really, really hope this doesn't delay my last chemo treatment on Tuesday! Just want that part over. I think this WILL mean I have to delay the radiation simulation I was supposed to have this coming Friday.
I am so disappointed about that. Not only do I want to get this over with, but I also take part in a yearly event that happens in October. This whole time, the thought of getting through all of the chemo and radiation in time to go has helped me get through this. And the timing would have been tight anyway if all went well with rads ending 2 weeks before I was to fly to California.
Now .... Who knows. There was even talk of cutting me open again to clean things out if antibiotics didn't work. Won't have the results back from the aspiration until Tuesday, so maybe am being premature. But things never look good at 2am! Hot flashes get me up several times a night and sometimes I can't get back to sleep again :-)
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BlessedMe - re IV teams getting a vein first try - Even the IV teams had trouble getting my veins. I had a pelvic MRI in January that was supposed to be with contrast. The techs there couldn't get a vein and called the IV team. She tried for almost 1/2 hour and still couldn't get it. Ended up getting that MRI without the contrast.
When I had my pre op breast MRI in March I warned them that I was a "hard stick" and they would need someone from the IV team. I drank PLENTY of fluids the day before and the day of and kept my arms and body warm by keeping on my winter coat until it was time to bring me into the room. At that point they packed the inside of my arms and the backs of my hands with rubber gloves filled with warm water and covered me in warm blankets. Took it still took 2 IV team gals 20 minutes to finally access a vein!
All of that is why I am SO thankful for my port!!
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Hot flashes/sweats - hate them!! Although they do seem to be less often now than they were. I sleep in wicking danskins exercise shirts and shorts that I bought at walmart. They really really help me - moves the moisture away from my body to the outside of the garment where it can dry without waking me. SpecialK suggested wicking PJ's and the danskins is what I found that day at walmart and decided to get them and give them a try - they were about $12 for a set - I now own about 5 sets.
Tuesday it will be 4 weeks since my last chemo - my taste buds seem to be normal. I still have stomach distress - indigestion etc. Still extremely tired and muscles still burn and ache with very little exertion. Hair on top of my head still none existent but I think the legs and chin hairs are returning - oh joy. Still have twitches in random places in my body. Mentally I am depressed - worried about work, worried about starting the Ai's - worried about my liver function, worried I didn't do enough chemo, ugh. I cry for no reason - went to see my GP on Friday - he is ordering a battery of blood tests including D and my A1C for my diabetes. Talked to him about how I feel and he said lets get the results of all this and lets see how I can help you through this. It was the first time I saw him since I went to him about the lump in January so we had a lot to talk about. He is really good about suggesting supplements and vits etc to help with things. I can take whatever he suggests to my MO and see what I can do.
makelemonade - I hope everything is ok with your breast and that it doesn't delay your schedule - it is so hard to face delays especially when you have plans. I will keep you in my thoughts and prayers.
FBN - glad that your SE's and minimal - rest as much as needed and don't be hard on yourself if you can't do some things. I am going to try to take a small walk here in a bit and see how far I can go before the burn is too much - I really need to feel like I am not a 90 year old!!
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makelemonade - sorry you are going through that pain. Not something you need to deal with on top of everything else. Just wondering, the event in October in California, does it happen to be Dreamforce? If so, I'm trying to time my radiation for that as well and will end 2 weeks prior. I have been freelancing doing Salesforce.com admin work, but just got a call about a job I had been interested in, and it looks like it's gonna happen. This would definitely require my going to Dreamforce so now I'm all excited and motivated, but of course worried. If you've been there before then you know the amount of walking that's necessary. Not sure that I can keep up.
Linda- don't beat yourself up, I think we are all worried about everything. How can we NOT be depressed? We are dealing with surgeries, pain, chemo, no hair, no energy, our lives are turned upside down, our friends look at us with pity and sympathy and all we want is to be normal again. I'd say that's the perfect recipe for depression. As you can see, Im also have been very emotional. Cry at the drop of a dime. I'm just done with this part of my treatments. I want my hair back, I want my eyelashes to stop falling out, I want to be able to walk to my laundry room without having to rest at the dining room, and I want my life back! That said, Im grateful for these treatments and the ability to be cured of this horrible cancer, so I deal with it the best I can. I can mask the struggle pretty well and to be honest, I don't know if that's good or bad. I had a breakdown yesterday and my husband said that he didn't realize my daily struggle because I hide it so well. He said he will do more to help and was happy he knew exactly how I was feeling. Back to you, it's great that your GP is going to try to help you. I hope he comes up with the perfect solution for you and you start to feel like yourself in no time!
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ladies, have any of you tried false eye lashes? I am thinking of checking them out at the local Ulta store today. I am pretty sure by the end of next week what is left of mine will be gone. I have a family wedding on Friday and I would really like to look as nice as possible. It is really hard to get my eye makeup to stay on because my eyes are always watering I presume due to the increasing lack of lashes.
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mmtagirl - I bought them, but haven't tried them yet. Mine are thinning so I may have to try them soon. Im afraid that my last treatment is going to wipe them out.
let me know how you make out. -
mmtagirl - the runny eyes are a SE of the taxotere. It is actually cause your eyes are dry and they are over compensating by producing too many tears - make sure you tell your MO about this as it can, in rare cases, lead to a more serious eye condition - at least that is what I was told. Mine seemed to fluctuate between being really watery and feeling very dry and I hate the twitches. I also bought some fake eye lashes but haven't used them yet as I haven't had anywhere to go that I thought I needed them. Do you know someone that has worn them in the past? Or do you know a beautician? I bought them and then thought - how in the heck am I going to put these on myself and then decided if I needed to I would ask my DH. But then had dreams of eyelashes on my forehead LOL
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reactivated my membership at goodlife today. Felt great to go! Went on the elliptical for 30min and did 3 different weight machines.
Having some tummy trouble - flirting with constipation. Had a bit of bleeding today. Taking the med that my onc gave me - guess I should increase it a bit
Feeling pumped!
Congrats to Jeff Gordon for wining at Indy! It's my birthday on tues and this is a great present!!!!!
:-)
Enjoy your Sunday!
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LOL! I needed that! Thanks!
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count me in for the hot flashes too. My husband says it even wakes him up at night because I am radiating so much heat! Our cat loves me more than ever before. I always uses to be freezing, now I go from freezing to burning up and back again in a matter of minutes!
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Linda, thanks for the info on watery eyes. Mine too are constantly watering but when I wake up they are kinda dry. I will have to talk to dr about this.
I hope everyone is feeling better.
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Ditto on hot flashes, I guess. I wake several times during the night hot and sweaty.
Had my infusion Wednesday. Out of breath and 110 bpm this weekend with little exertion. I don't like not being able to do things. Sounds like it's happening to a lot of us, so I guess it's normal and we just need to be patient with it. I watched all 6 Star Wars movies with my daughter so I would sit still and rest these past 3 days.
Hope everyone is doing ok. One day at a time, we will get through this!
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Feeling so restless, that hospital admission really set me back in what I could do physically, and I couldn't do much!
The bottoms of both my feet feel numb this week which is weird because I didn't even have my taxol this week. I fell down the last few stairs today because of it. Thank goodness I didn't twist/break anything. I am simultaneously hoping that they reduce my dose so it doesn't get worse but terrified that could effect my recurrence rates etc.
Linda- I am also worried about the AIs....
I can't have tamoxifen bc of my clotting issues but I am terrified of the SEs of AIs being only 30. One of my nurse practitioner's suggested I have my ovaries out. I wanted to scream NO and run away.
My 'one bad year' philosophy is quickly becoming more life altering and I don't know if I can handle it. I feel irrational and want to refuse everything after rads. Which I know is crazy. Grrr. No more babies? Such a struggle to wrap my head and heart around that one.
Where is a baked good when I need it?
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DKath70 - no, my event is a national dog agility championship for which I am the secretary. Had it timed to also finish rads 2 weeks before. Now? I would also have a lot of walking but the organizers have access to golf carts so it would have been doable. I was even going to ask someone that I know who moved out there to bring me one of this anti gravity chairs so that I could take a nap if I needed it as we always have really long days.
There is a ton of work that happens before the event and that has already started. I have a feeling I will get to do all of the work but not get to go out there and be part of it! I guess it is good that this happened this year. Last year the event was closer to home so that my husband could come along and we drove the RV there. For the first time ever, I was able to run my own dog at the event - all of the other times I had to fly and went on my own (I won't fly this dog and wouldn't run a dog if I didn't have help - I have too much to do anyway to add looking after the dog on top of it!)
The organization doesn't even know I have breast cancer - now I am wondering if I shouldn't have let them know just in case I couldn't go so that they could have found someone else. But, never in my wildest dreams did I think of this set back!
I have been secretary for 3 trials since breast cancer and missed two of them - and sat (slept actually!) in the RV for most of the one that I DID get to. Did all of the pre and post trial work and had someone stand in for me for the actual events. Have another trial in 2 weeks and now am wondering if I will get to go to that one! At the very least, if my last treatment is delayed a week, that means I will be going through the worst of the SE during that weekend - great :-(
I have been able to be pretty positive for most of the "wonderful" journey. This event was my short term goal and made it all worthwhile. That this now might not be a possibility has me feeling down right now.
One bright side - the antibiotics have taken care of my Big C problems ;-)
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Re watering eyes - have that too. MO said I could use artificial tears to keep the eye from drying out. Really seems to help
Hand up here for losing lashes! Looks mine are starting to fall out. Didn't notice until I read this thread and I took a look. Only have half of my lower lashes. Upper ones still look normal - so far. Oh well, it isn't like I didn't know that would happen :-) One of the Onco nurses said dark haired women don't always lose them so I was hoping ;-). Apparently they are supposed to grow back quickly?
I think I have "warm flashes" not "hot flashes". I don't wake up soaked and hubby hasn't said anything about me radiating heat. I just get warm all over and my head sweats but that is about it. It is just worse at night because it feels like I am constantly taking the sheet on and off my body :-)
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Hands up here too for the hot flashes! Yeesh, those are a PAIN, right? I find mine are the worst the week immediately following chemo and then they let up SLIGHTLY after that. It's 30C (85F) + all week here, which doesn't help the whole "I think I may burst into flames" thing I've got going on. Oh, the stuff they didn't tell us about chemo, yes?
MakeLemonade - I have lost half of my upper lashes and about 3/4 of my lower. Also about half of my eyebrows (they're still there, but very thin). And then they stopped falling out. *crosses fingers* I have heard that SOMETIMES the remaining lashes and brows will fall out following the last chemo treatment, but I'm pretending that that is FALSE INFORMATION. *places head neatly in the sand* Sorry to hear about possibly having to miss your dog agility championship.
AGAIN, no one really tells us how much we have to give up throughout chemo treatments. In fact, so many of my medical team assured me that I would "bounce back quickly" and to "live normally". I'm guessing those people, while they mean well, have never been HERE, in THIS PLACE. And then there's "those people" who tell everyone that they "breezed through chemo". While I respect their journey, I also hate them a teeny tiny bit. BlesseMe - LOVE that photo - thanks for the smile this morning.
I will keep you posted regarding the fatigue. I have a trip planned to visit family (my husband's grandmother turns 101! WOW!) at the end of August, and I am hoping I'll be relatively close to normal by then. Or at least have the ability to fake it. clarrn - sending some comforting hugs your way. Wish I could do more or say the words that would make it all better.
Well, I am now about 10 days post Round 6 and I'm FINALLY feeling mostly human gain. FINALLY. The fatigue and the digestive issues have been, BY FAR, the worst this time around. Also the swollen, sore taste buds, and the whole tongue turning black thing were back, so eating was an issue. I am SO looking forward to eating things that are not mushy and bland. Like STEAK. Oh, how I miss me some steak. And fresh garden salad. Basically, any food with FLAVOUR and TEXTURE - I miss it. I have some BIG MEALS planned for later this week - YUM.
Sending all those in the chair this week hugs and prayers. And to those in the Dark Place right now, we're right here cheering you on.
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Cold - my head is right there with yours in the sand .... and hoping I don't lose any more ;-) Looks like about 1/3 to 1/2 of my lower lashes are gone and the upper lashes are thinning. Eyebrows are thinner than usual, but that is ok ... I have THICK eyebrows that I constantly had to work at :-)
I am SO happy with my breast surgeon ... he wanted me to leave him a message today with my status (marginally better, but no worse) After he got my message he looked into how the culture of the aspirated fluid was doing and also spoke with the infectious disease doctor at the hospital. NOT positive for MRSA but there IS something there. Am going on an additional heavy duty antibiotic in conjunction with the augmentin he put me on yesterday. He even called me back to tell me that he had called it in, but the pharmacy didn't have it in stock but they are calling around for it. He is trying to keep me out of the hospital for IV antibiotics!
In addition, he walked down the hall to speak with my oncologist as well (they are on the same floor - it has all been very convenient) but that doc was with a patient. He is going to discuss my case with him later today.
I will still probably be going in tomorrow ... even if I don't have the last Taxol, I probably can get the weekly Herceptin and my weekly blood draw. Just really wanted that last chemo over with ... this just delays things!
Feeling a little more positive after speaking to the BS - in a cautious way ... like I have a little ray of hope that things aren't going to go totally south on me!
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hi all!
Went to gym yesterday and today. Felt awesome! Today I did the stepper for 30min then weights. This wed is round 2 of taxol. Ugh!
I must admit that my side effects are minimal. Fatigue. Taste buds off a bit. Don't really have the big c but hard stools. So I'm taking my meds. My butt feels like it's been ripped apart! Guess I'll take a sitz bath. Got "tucks" and baby wipes. Hopefully that plus my meds help
Last night we confirmed a gig on sat oct 25th mississauga Ontario. Hoping to have 4 bands. Now the work gets started to design a poster, print tickets, tshirts, ask for volunteers to run a silent auction, get stuff for silent action and stuff for small giveaways! All to raise $ for cancer research etc
Hope that my SEs don't get too much worse. I still have a few aches and still get so hot at night. I haven't slept one full night since I can't remember when. Hopefully exercise will help!
Enjoy your day!!
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Hi all. I'm feeling better mentally and emotionally than I was last week. But my body hasn't caught up yet. I get tired so easily. It took me 2 days last week to unload the dishwasher. And yesterday all I could manage to do was walk 3 blocks to the farmers market and also do a load of laundry. I thought I could go to the movies and maybe vacuum, but no. Cancer has robbed us of so much! After putting my life on hold to spend a year working in Afghanistan, I arrived in DC last September looking forward to living in the States again and enjoying a nice quality of life. But not long after I unpacked, I was diagnosed and had to put my life on hold - again. How many special occasions and fun events have we missed or not truly enjoyed because we can't travel, or we're in too much pain, or are too tired? It sucks. I can't wait to feel healthy and strong again.
Count me in for hot flashes and no eyebrows. My eyelashes are hanging on for now. I have an icky taste in my mouth most of the time. Final round is next week. Every time I think about my last chemo I practically burst into tears. As much as I hate being physically fragile, I hate being emotionally fragile even more.
I had consultations with the breast surgeon and plastic surgeon today in advance of my mastectomy in September. I LOVE my new breast surgeon. She is a BC survivor and used the same plastic surgeon for her own reconstruction. That's a pretty good vote of confidence, right?
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Good Morning All....Had #5 of 6 TCH yesterday and all went well. Go to get the dreaded shot today and have the recliner all set and ready for the roaming bone pain that will start tomorrow night or Thursday.
Steroids are allowing me to only get about 4 to 5 hours of sleep. Ugh! Up this morning at 4 with the sweats. Using Poise wipes to help and they cool me right down but no luck going back to sleep.
I did not shave my head and still have about 10% of my hair that is pretty evenly spread with some new growth coming in. Eyelashes and eyebrows are hanging in there so far, so are my nails. I hope this last.
The fatigue is by far the worst for me and my eyes are draining sticky goop with the right one even spiting goop on my glasses. Have tingling in my feet and the bottom of my feet sweat. hummmmm...... The other major SE I am having is swelling. I am on 40mg of Lasix and taking potassium daily and still having major swelling... I am drinking a ton of water and nothing seems to help. I was prone to swelling prior to all this mess but nothing like this.
But, I only have one more to go and now that is less than 3 weeks away! I can do this!
I hope you all have a blessed day!
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blessedme I wish you minimal side effects.
Tomorrow is round 2 of 6 taxols then done chemo. Can't wait!!!!!!
Today it is my bday. 51. Hubby and I said that we will celebrate once the chemo is over although I did say that of allow him to take me out to dinner this weekend when we see howie mandel. Hoping for major laughs!!
:-)
Have a great day all!!!
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Happy Bday FBN!! Hope you have a great day with no pesky SE's!! I look forward to your pics on stage with Howie!!
Everforward: congrats on a BS that you trust. Soooo so important to have the right caregivers as we have all seen from everyone's posts. Hopefully this puts you on track so you can soon enjoy the next years to make up for the one that has been so interrupted.
I am 7 days PFC today. I am about to take the pup for her first walk in weeks. Hopefully my stomach and feet cooperate! Today I have the Herceptin only and I realized NO more weekly blood draws. My left arm was looking seriously tracked.
Tomorrow I go for sim for rads. Don't think I'll start for at least a couple of weeks. We'll see.
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jhodro tx for the wishes and got making me smile and laugh!! Best of luck with the rads. All will be over soon!!
:-)
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Happy Birthday FBN!! I hope you have a great day! -
football, your resilience is inspiring and gives me hope. I'm day 8 past the fifth T/C and just exhausted. Still having random pains. Needed nausea pills last night along with codeine and ativan for both nausea and sleep.
But I did sleep well.
It's all downhill from here, hopefully.
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happy birthday FBN!
And congrats to all that are PFC
Was supposed to get my last Taxol today, but, as I suspected, have to have it delayed due to the breast infection.
Also had to cancel RAD sim on Friday.
Did get my weekly Herceptin and my blood counts look good. Should have a good week as this will be the first time since April where I have not had chemo every 2 weeks. Once the antibiotics kick in, the tenderness will go away.
Have a good week!
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Happy Birthday, FBN !!
Wishing everyone well. Haven't been checking in as much as I try to get back to "regular" life. I did rads before chemo, so don't have to handle that now. I am due to start arimidex soon. Can't wait.
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TS Eliot, I think it was, who said "April is the cruelest month". It seems a long, long time ago, doesn't it?
It's almost OVER!
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yes it's almost over! For chemo atleast! I dread going for herceptin until next June. I guess that's when I'll consider it truly over but from what I've heard side effects should be minimal if at all
I've gone to the gym the past 3 days and feel great although now that I'm done I am feeling a bit more fatigued than I would have prior to this hiccup in my life
Feels so good to get out of the house and interact with others like I used to
After chemo I plan to integrate swimming into my routine. I miss it to much
Tomorrow at 9 I have bloodwork then in the chair at 11:30. My girlfriend is coming tomorrow but I think that after this I'll try to go on my own for the remaining 4. Did anyone else go this with taxol?
My hubby wants to go to the last one. I just might let him.
:-)
Have a great Tuesday and thanks for the bday wishes!!!!
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Amazing Football. I just walked up from the basement and my heart was palpitating so badly that I thought I'd pass out.
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I feel your pain Timbuktu! It took me 4 trips to change the sheets on my bed Saturday!
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final treatment, yay!!! Need to celebrate in 3weeks! Off to radiation next!!
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ddkath love ur picture and sign. Way to go!!!!
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Don't try to compare yourselves to Footballnut - she is a super hero and has powers that we mere mortals can't even dream of LOL
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Linda. Too funny!!
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ddkath - Congrats!!!!
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Oh Ddkath70!!! That SIGN!!! Just. AWESOME.
And CONGRATULATIONS on your LAST CHEMO! Woo hoo! Celebrating with you today!Happy Birthday Footballnut! I, too, celebrated my birthday during chemo (back in May). Also my 17th wedding anniversary and my husband's birthday, although I slept through both of those - we're postponing the celebrations for when my taste buds come back.
jhodro - I love your description of the post-chemo arm: "tracked". YUP, that about sums in up.
BlessedMe - I have the goopy eyes too. It's gotten worse with each round, just like the fatigue. I wish I could tell you I found something that helped, but sadly, I did not.
Hang in there! You are almost done. Put your feet up on your recliner and SLEEP through it all as much as possible. Sending hugs and prayers for minimal side effects this round. Timbuktu - I hear you on the heart palpitations! Stairs are my NEMESIS now. I made it half way up the other day and needed to stop and rest. My son came up, sat down beside me, and said: "Whoa, Mom. We might have to call a TOW TRUCK to get you off the stairs." HA! That little Smart Mouth cracks me up!
EverForward - Sending you hugs. We HAVE given up so much, and we have the right to mourn the losses.
I've had an EPIPHANY Ladies. And I thought I would share it with you.
I think all these crazy emotions as we reach the end are NORMAL. I mean, really, we've all been through SO MUCH to get to this point. We've powered through the UGLY and the MEAN and fought off the Dementors, and "Others" keep telling is how tough and strong and amazing we are. And we protest and say that we are weak and tired and just didn't have a choice, but those "Others" don't really understand. They see a strong woman who endured a cancer diagnosis, gave up a breast, made it through 6 grueling rounds of chemo, and came through it all with a smile. The reality is that I spent just as much time WEEPING as I did smiling, and most of the time I really didn't FEEL strong or amazing.
HOWEVER, I decided that I'm going to try to see myself like those "Others" see me. And if I squint a little, I CAN kind of see it. I mean, I DID that, what they said. I DID make it through all those things. And I DID smile more than I thought I would. And even on my worst days, when I was simply too weak to even get out of bed, I still mustered up the energy to whisper "I love you" to my husband and children, and to catch the kisses they blew to me from the doorway of the bedroom. So MAYBE, all that strength and amazingness "Others" saw in me IS there. Even when I don't FEEL it. MAYBE I AM that person they think I am, even if just in part. And MAYBE I should be proud of ME for getting here, to this place, this place that seemed so far away just a few months ago.
And YOU Ladies, should be PROUD of YOU too.
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Ddkath70, congratulations on your last round and GREAT SIGN!!! Die, little fuckers!
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#8 DONE. 4 more weeks of weekly taxol than a week of herceptin and perjeta and finally a little break
. My hands are burning today and I still needed extra magnesium but my liver functions are coming back to normal. All of my counts are slowly creeping up which is great. I started working out last week and I am hoping that tomorrow on my steroid high I can get another workout in. I found that I do not sleep well unless I workout. So on the nights that I workout I get a full nights rest making the hard things that much easier to handle. So yesterday when I started with a cold I really wanted to cry because it is messing with my T25 workouts. Ddkat h Congratulations on your last chemo.
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Congrats DDKath70! Love the sign
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Happy Birthday Football.
Congrats to ddkath
and Cold; thank you for sharing that. You are so correct in the we don't see ourselves as others do, but we are strong and brave, but only because we have so much to live for. Hugs and prayers to all.
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FBN, happy birthday!
cold, always love your posts. You have a way of getting to the heart of what we all think in a very with way.
DD, congrats on finishing up!
Jamieh, I agree with you on the exercise. I sleep so much better and have less fatigue if I can get some form of exercise. My feet are burning tonight, too. Started glutamine this past week. I hope it works!
Only 7 rounds left! Woot woot!
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Congrats DdKath
Happy belated FBN!!
Beautifully said ColdinCan
So happy to be getting my Taxol today! Drinking tonnes of water so that it might be easier to stick me! Go veins go!
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Cold, your post gave me goosebumps. You are so right, we think no one else understands but maybe they see something we don't. I think powering through every moment doesn't allow us to see the big picture. Maybe when it's all over? But will it ever be really over? Either way, I'll try to power through every moment in the best way I can, and that is something... But what other choice is there?
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I finished up chemo 4 weeks ago and for the past couple of weeks, I have been having some serious muscle fatigue. When I get up to standing, I walk like a 100 year old person. Is this common? I am pretty sure it's muscle rather than bone because my entire body feels like I have done 5 hours of bootcamp, everyday. Stretching and walking aren't helping much. I have a call in to the chemo nurses. I am hoping this is just a side effect that goes away. Fast. Lol
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I hope you will let us know what the nurses say.
When I had CMF, 3 years ago, it went on for 6 months. After I was done I expected to get back to normal quickly. I took walks every day in sun. One day I noticed blisters on my skin! I called the onco nurse and told her something was weird, it was 3 months post chemo but I still had a bad reaction to the sun. She said "Three months? That's nothing! That stuff stays in you for a year!" Surprise! To tell the truth I'm not sure I ever did get back to my previous energy level, but I'd gained a lot of weight too so It's hard to tell. Good luck!
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Boobieprize - I am also a little over 4 weeks PFC and I also have muscle ache, fatigue and stomach issues (reflux, indigestion, gas) ughhh. I keep waiting for my energy to come back but it hasn't yet. I think we have a ways to go yet...
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Thanks, linda. Thankfully, the stomach issues have subsided. The indigestion is something else, isn't it? The dr. does want me to come in tomorrow for labs. I was hoping they'd just say to continue ibuprofen until it goes away. They do always err on the side of caution so I suppose I should be thankful.
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Thank you, too, Timbuktu. Didn't want you to think you're chopped liver!
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4+ weeks PFC and muscle fatigue lingers (seems a little better each week). Reflux is surprisingly annoying still. Tastebuds working well.
My husband was sorting through boxes - brought me a gift - "here, you might need this" - it was a hair dryer. He thought it was hilarious.
Ddkath - wanted to say congrats on your last chemo!!!
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Ddkath, Congrats on being DONE with chemo!!! Yay you!!! You did it!! -
hi all
Got through round 2 of 6 of taxo. I call it round 5.1. My onc nurse told me that my side effects should remain as is throughout the duration of treatment. I hope so! I got colace and will start taking tonight for a few days
I bought a generic brand the other day because they did not have colace and saw that there are 2 types of parabens in there! Good grief! You can't avoid the stuff!
I'm paranoid about the skin creme and body washes that I use but it's in everything!!!
After chemo I came home and slept for 3 hours. Same as last time! Prior to chemo they give me steroids, Benadryl and something else - I forget. It's the Benadryl that knocks me out. Felt like I was in space!!
I hope that everyone had a good day!
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What is wrong with parabens? I must have missed something.
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YIKES! Just read up on parabens! I take stool softeners 3 x a day, not always colace.
WHERE IS THE FDA????
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Hi all, just thought I would update since being MIA for so long. I spent a week in the hospital for pneumonia and severe anemia. The pneumonia was what was causing those miserable fevers. They finally got it under control with a ton of antibiotics and I got a blood transfusion. I got home Monday and am trying to get back to normal. I've been working from home though - not ready to go in the office.
That was my 3rd hospitalization in 3 months of chemo.
Tomorrow I go see my oncologist to see what his plan is for getting me through my last 10 cycles of Taxol without killing me off with side effects.
Congrats to those who have finished or are finishing up - you are inspiring. And so is everyone else who keeps posting about how you are plugging away and keeping moving forward despite all the difficulties.
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So sorry for all you've been through Lena! Hope and pray it's all downhill from now on!
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FBN looking good!! Hang in there! The thing they gave you before chemo with the decahedron was probably some kind of antacid, I got Pepcid.
I am 7 days PFC and I thought, oh, I'm good I don't need the Pepcid anymore. HA!!! Keep taking it! It was an awful day until it kicked in again. Yuck. I went today and had my rads simulation. That wasn't bad. 33 daily treatments there. 4 tattoos (very tiny). Hopefully the time will fly.
Stay well everyone!!
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Lena I am glad that you are feeling better. I hope your oncologist comes up with a good treatment plan.
For everyone who is PFC I would ask for a blood draw to see if your counts are rebounding. It took me a while to feel better after TCh last time but I was also having a ton of surgeries.
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good morning!
Day after taxol infusion. All night I tossed and turned. Felt tired and awake at the same time! Lol. Last night my mouth was so dry. This morning seems the same. I'll stay on colace for a few days to try to minimize tummy discomfort and hard stool
4 more rounds of taxol. I'll go to the next 3 by myself. I've been okay the past few times and think that if rather snooze during infusion to make the time pass quicker. My hubby wants to go to the last chemo infusion. Don't know if I'll ring the bell as I'll still have 10 months of herceptin left. Maybe I'll ring it twice - once at the end of chemo then at end of herceptin.
Hope to hit the gym today
Hope that all are well and that everyone has a great day!
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Good morning to you as well! I had my taxol yesterday too Football, with 4 more to go and couldn't sleep a wink either! Up all night and then walked 3 miles at 6am before it gets beastly hot out. Normally I love the hot humid weather but with the hotflashes and extra chemo pounds I am not having fun. It might be a challenge trying to keep up with a rambunctious 3 year old today. Yikes! Praying she naps!
Have a great day everyone.
Off to try to nap an hour before she gets up! -
clarm we should chat with each other the night after infusion. Sleeping us near impossible. Then when I do doze off the hubby starts snoring!!! Lol
Went to the gym today and did 1/2 hour cardio on the stepper and weights. Now as I sit here the fatigue is returning but I've no time for that today!!
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Footballnut - I don't recommend driving yourself to chemo. I know at least for me, I feel sleepy from the Benadryl. My MO said its safer to have a driver. I have about a 30 min drive to the cancer center, but I'm fortunate to have friends take me when my DH isn't home. You amaze me with your exercise! I can barely walk.
Lena-Lou - So sorry to hear you've had so much trouble. Being in the hospital stinks. Glad you're home. Take care of yourself.
I just had Taxol #8 yesterday. Only 4 more to go! They halved the Benadryl this time because I've gone this far without a reaction so they said we'd try the lower dose. I still slept in the chair and had RLS, but didn't sleep the rest of the day away for once. The steroids kicked in later and I only slept about three hours last night. Feeling better today. I attribute it to the lower dose of Benadryl.
To all who have finished chemo -Yay! Must feel great to be finished!
Hugs to all, lilyrose
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lilyrose - I kno3w what you mean about the sleepiness from benadryl. It's awful but fun at the same time. I feel like getting my guitar out snd playing a tune when it hits. I'm only 10 minutes from the hospital and was thinking that after the infusion I'd grab something to eat then leave. If I didn't feel safe to drive, I could always take a taxi and leave the car at the hospital to pick up later.........
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The overall fatigue is manageable now. I can make it through the day without needing a nap, although I still fall asleep around 8:00 pm. But the muscle fatigue is KICKING MY ASS! The slightest bit of exertion is killer. And it's getting worse every day. Stairs are becoming impossible. We've had nice weather this week and every day when I head home from work I think I'm going to change into sweats and go for a walk, but as soon as I get home, my legs say, "Nope. Go put on pajamas and lie on the couch for the next three hours."
My last TCH treatment is next Wednesday. I'm feeling a little anxious about it. I know others have felt the same as their final infusion approached. You'd think we'd be nothing but excited, but instead it feels like what little remaining strength we've been clinging to for months finally has permission to leave us completely and we're utterly spent. I've gone through the dark place five times already, but for some reason the 6th time is scarier.
Thanks to those of you who have come out the other end and continue to motivate us. You give me hope that what has become "normal" since my diagnosis is NOT permanent.
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EverForward, I am totally with you on the muscle fatigue. Ugh. I can't bend over, I can't squat down (tying my shoes is a HOOT), walking hurts, and don't even get me started on stairs. This about sums up everything about me trying to get to the second story of our house:
http://www.youtube.com/watch?v=rDmkhhJWKU8
I am seriously IN AWE of all you ladies who lift weights and walk 3 miles in the morning and basically do more than move from the couch to the bathroom and back. You all are AMAZING.
Oh, and EverForward - I have no idea why that last round is so scary for all of us, but you have GOT THIS. Just one more time and it's DONE. Go YOU!!!!
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I have been keeping my spirits up throughout most of this ordeal.
But this last week or so .... it's been hard! Breast infection delayed the last chemo treatment. Hoping I can get it next week, but will see after appointment with breast surgeon on Monday. Being admitted to the hospital for IV antibiotics is still not out of the question.
That also means radiation is delayed. And got bad news from the RO's office. Apparently, although the actual DOCTOR is in network with my insurance, the facility is NOT, so I would have to pay thousands of dollars of out of pocket fees (I confirmed this with my insurance company) I am so disappointed as this RO came highly recommended by so many people .... at least 3 of whom had personally had him as their RO! I already had my initial consult with him and really liked him and the facility. Plus, his facility is connected to the hospital facility that is just 10-15 minutes up the road and he has access to all of the hospital records ... including all lab reports, pathology reports. He is on the first floor of the same building where my BS and MO are ... and now I can't go to him :-( My hospital doesn't have their own radiation equipment, so I now have to go to someone totally outside of the hospital system ... which means getting copies of EVERYTHING.
Of course, I find out all of this late Friday afternoon, so can't even get an appointment with the next closest RO. Will probably wait until my appointment on Monday with the BS to see if he has any recommendations. The thought of driving even further every single day for 5 or 6 weeks is something I am not looking forward to. The next major hospital would require driving through a lot of traffic every day. And there is one facility that I will NOT go to as I have not heard good things about it so that cuts out another few off of the list. Would have called my nurse navigator, but she has left for the weekend already.
Just so disappointing ... hate 11th hour stuff. And although I am thankful we do have insurance, insurance drives me NUTS. Have to deal with dental insurance at work all the time (work for a dentist) and that gets VERY frustrating!
So close and, now, yet so far :-(
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So sorry makelemonade - I hate insurance issues - we have enough to deal with but then insurance issues on top of all of it can sometimes just push me over the edge. I hope you find a facility and RO that you like!! and soon! And I hope you don't end up in the hospital and things can be back on schedule for you.
I had an insurance issue today also. Had my echo for my herceptin on the 17th of Jul - everything went fine with the facility but they sent it out to be read by a cardiologist who in not in my network UGH. So insurance denied his billing. I had no choice or knowledge of what where they sent it to but it is now my problem so I had to file an appeal today. The lady I filed the appeal with said she doesn't even know why they sent it to a cardiologist that they are usually read by a radiologist - huh?? Anyway - here we go - it seems I have at least one insurance battle a month.
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linda505 - I feel for you!! I have been billed several times by different radiologists ... all of whom use the same billing company. Have had to call them four times giving my insurance information. Each time they say they don't have it ... wtf, they only have one job, billing, and they can't keep track?!?
I remember when it happened the first time thinking that I would be furious if they had it read by someone that was not in my network because it wasn't like I had a choice! Had it done at the hospital and would expect everyone who worked there to be in the same network!
Right now there is also an insurance issue up in the air with my MO. I had been paying the same copay for the chemo day and for neulasta day. Then got an EOB that showed my copay on the neulasta day should have been half of the chemo day. So, since I had paid too much for the first four chemo/neulasta days, I arranged with the front desk girl that I wouldn't pay for the neulasta days for the next 4 treatments and it would even out. But on the third visit, she said someone in billing told her we couldn't do that and that they were fighting with the insurance saying it should be the same. So I paid the full copay ... shrug. I figure I will be going there for a year for Herceptin, so it will get straightened out eventually.
But still FRUSTRATING !!! Not someone we need to be going through on top of everything else!!
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8 year anniversary coming up for me and Mr me on Tuesday. ♡ I arranged for his mom to keep our daughter overnight and until I get back from chemo on Wednesday, but dinner out seems like not enough to communicate how much he means to me, and all the ways he has stepped up to be my superhero in all of this. I am thinking of writing him a long letter. Any other ideas? Really starting to feel the fatigue so nothing too crazy.
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I just wrote to a friend. Its' all coming to a head for me too. She said she's never heard me this depressed, could it be the chemo? Well, yeah. I can't DO anything and I'm in constant pain and alone all day. I think the pain pills must be depressants too. It's all just gone on for too long and it's intensified rather than waned.
And of course, the fear of the cancer is ever present.
Maybe this is just the course of this thing. Just as it's ending, we can't take it anymore?
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Good Evening, April Rock Stars. I am going to take it as a good sign there's been no activity here for the past couple of days - hoping folks are feeling better and enjoying the weekend.
I am feeling better every day. Actually walked up the stairs today with no pain in my thighs!!! That's a plus. Mentally, the lack of hair is bothering me more now than initially. Dunno, maybe just impatience.
Wishing everyone well: those finishing chemo, those starting radiation, and those of you who may have more surgery coming up. And, I know we also have some who will be continuing treatments - thoughts and prayers are with you all.
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good morning all!
Bloodwork today and round 3/6 taxol tomorrow. I am starting to feel more aches but do not need painkillers yet. Sometimes I feel like a rubber band is wrapped around my thighs or upper back. Joints are achy. Tummy seems to be doing ok. It seems that if I take colace the day of treatment and for a few days beyond things keep moving. Having said that I think that I've developed a small hemorrhoid excellent!
Another thing that I noticed after round 2 is that my tongue started to feel a bit tingly and taste buds are at 70%. I also get hot more frequently at night
And then there's fatigue. I feel that it is increasing but keep trying to get my butt into the gym. Today will be an off day as I went yesterday
I continue to work on my fundraisers. Today I will meet with rep from the credit valley hospital where I am being treated. So excited!
Best of all football is here!!! Woo hoo!!! I'll be done chemo before the first regular season game!! Yahoo!!!!
Have a good day all!!
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hi everyone! Looks like we all have the same thorn in our side, that fatigue is a killer! Sometimes I feel like I can't stand for long, never mind go for a 30 minute walk! I swim though, and that really helps. But I feel heavy, like each arm weighs 1000 lbs or something.
Sharon, I'm with you on the hair. It's definitely bothering me more now than in the beginning. I think we are just done with this. I was finally able to find a wig that I really like. It was getting depressing there for awhile. The choices just didn't fit my face. I drove my salon crazy and then found one somewhere else, but I had her cut it so it all works out. Lol
I have this week off of any appts or tests, then next week I have a follow up with my MO and then also meet the RO, so let's get this party started!!!!!
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Hi Ladies,
Wow, this forum really DID go quiet over the weekend! I hope that means people were out doing things and living life. I was! I was doing low key stuff, but still...stuff! I was having problems being out of breath early last week, but it progressively got better by this past weekend, so I was able to get off the couch a bit more, and actually take the dog on short walks. Gotta celebrate all the little things. SharonDe: You know what I mean. Like being able to walk up the stairs!
We went to see Guardians of the Galaxy this weekend, and we all really enjoyed it. If you like any of the Marvel movies (Avengers, Thor, Iron Man), you'll like this one, too.
I also watched the first three Bourne movies (borrowed them from the library) with my 13 year old daughter, and enjoyed those, too. Trying to get #4 from Redbox but it hasn't been available the times I've checked.
Went to my PT yesterday and she "graduated" me! Woo hoo! Done with PT visits. I still need to continue with my stretches and exercises to keep my body in good shape for my exchange surgery next Spring. During this visit, my PT realized I had AWS (axillary web syndrome), or "cording." That's why my arm hurts when I reach up high or forward. She said the chemo & rads make it worse, so it won't get better until after rads are done.
Then yesterday, I booked a Mediterranean cruise for the hubby and I for next summer to celebrate our 20th anniversary (and finishing my treatments & surgery). Looking forward to that! Neither of us have been to Europe before.
I hope everyone is doing well.
EverForward: Early congrats on finishing TCH Wednesday! Don't be scared...you can do it! You've been doing great all summer...it's just one more. I hope your muscle fatigue has gotten better (same to you ColdInCanada).
MakeLemonade: I hope you got good news yesterday from your BS and got all the RO & insurance stuff figured out. Insurance can be great and it can be a royal pain, as I think we've all experienced at one time or another. I remember disputing bill after bill after birthing my babies during my maternity leave! linda505: I had the same problem with my insurance (docs using labs unapproved by insurance, back when I was having babies). It's really not fair for us to be responsible for things out of our control. There's gotta be a better way. I hope they figure it out soon.
clarrn: Congrats on your anniversary!
Timbuktu: It's understandable how you (or any of us) might feel depressed as a cancer patient. We have a lot to worry about, and chemo knocks us on our butts. But, you can do it! Take it one day at a time & after chemo is done, I think it'll get much better.
Ddkath70: Glad you found a wig you like. I found it's nice to have a good wig, so I can at least look normal when I go out in public and not draw any looks.
Have a good day everyone!
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MommyQ, I'm glad you mentioned the cording. I had significant cording after my last lumpectomy in March and then it went away. I've noticed that it's starting to return now that I'm almost done with chemo. I hope it doesn't get as bad as it was before.
It's nice to hear that life is sort of slowly improving for the PFC ladies. I can't wait to join you! Just met with my new MO. Sounds like the new protocol for Tamoxifin is 10 years instead of 5. Blech. As he explained to me, after 10 years of the study, there was no difference in recurrence between the 5 year group and the 10 year group. But as they continued to monitor the participants for another 5 years, that's when they started to notice a difference in recurrence. Hence the change to 10 years.
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A "funny" thing just happened. I suddenly realized that I am out of my blood pressure meds.
I take many pills every day and I lost track of this one very strong pill. No wonder I've been feeling like I'm dying. I, in part, decided that I can't have the sixth infusion feeling the way I do. My heart pounds so I think i'm going to pass out. I have absolutely no idea when I ran out of these pills but when I called the pharmacy he said "It's been here waiting for you!" I get the impression it's been awhile. Thought I'd let you girls know, sometimes it's not the chemo that's doing you in!
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Sharonde...I'm with you on hair. I check my scalp, closely, multiple times a day in hopes of finding some growth. Today I found what can only be described as peach fuzz. But, it's something, right? My last chemo was nearly three weeks ago, so I was hoping for more.
I went in today for a mammogram. My lumpectomy was six months ago, and my breast surgeon wanted an updated mammogram for my upcoming follow up visit. I'm so nervous...the tech had to do three rounds of pictures. I ended up getting 6 or 7 on each side...ouch! My cancer was/is on my right side, but the radiologist kept wanting more pictures of both sides, with some extras of the left side. What the heck?! Since my original (re: awful) MO never ordered a PET scan, I'm terrified I have cancer everywhere else, and this mammogram did not make me feel any better. I won't find out what they found, if anything, until August 18. I'm already riddled with anxiety...it will be a long two weeks.
Wishing you all a wonderful summer day!
xoxo
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Swiss, why are the mammogram results taking so long? Every time I've had one, I meet with the radiologist immediately afterwards. Waiting 2 weeks for mammogram results doesn't sound right to me. Unless the person who will read the mammograms is on vacation or something.
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Me too. Last mammo they wouldn't let me go until i got the AOK. Immediately.
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Hello!
I am two weeks PFC and yesterday was the first day that I didn't absolutely without question need a nap. Today, I'm not sure I'll make it all the way, but the fatigue is definitely subsiding. And, my hair is definitely growing. A teeny tiny bit at a time, but it's there. I so look forward to the day when it is long enough for some kind of a mini-pixie so I can ditch the wig. While the wig looks natural and all, it is definitely the most uncomfortable thing I've ever worn.
Swiss: i do not understand a two week delay in reading results. I got my results right away when I was called back in. I didn't get a sure diagnosis until the biopsy, but the mammo/ultrasound results they read and relayed them right there that day. I hope you actually get them much, much sooner. The waiting, in all of the stuff we've been through, is positively one of the most horrible things. Good luck. I'm sure everything will be ok.
Timbuktu: Glad you found the pill!! I am still operating on half a brain. My husband asked me the other day for the English word for 'compass' - he couldn't think of it, it took me about 30 minutes to figure it out. I only speak English. LOL.
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LOL! My husband was born in France and has always had trouble retrieving words, names, whatever.
Now he reminds me. A lesson in humility.
Thanks for giving us hope. I just woke up from my nap. I do feel 100% better now that I'm back on that pill. I think I may have been off of it for 4 days!
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I am taking some comfort in the fact they didn't do an ultrasound...if the radiologist saw something, I'd think she would do that right away like my mammogram last December. I'm probably jumping to conclusions, but the tech told me she couldn't tell me the results. The radiologist (in another room) said I could leave. Should I assume all is clear? The tech said the results would be sent to my surgeon, so I figured I would review the results with her. Honestly, I have little faith in my treatment, due to the fact that I've had so many unnecessary delays and missed opportunities throughout. I told my husband if they do find more cancer I'm leaving Oklahoma and seeking treatment in Minnesota. Having trust in your treatment is something you should not take for granted.
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Swiss, I would call your surgeon tomorrow and explain that you can't wait 2 weeks to find out at your appointment. They should be able to tell you over the phone, either way.
I had my wedding this weekend and ended up with the makeup artist the bride was using for her bridal party doing my makeup and lashes. She airbrushed the makeup on, including my brows. Then she took individual lashes and applied them to my lids. They turned out great! Wish the lashes would have lasted more than the day because I won't be applying them myself....disaster! The wedding was beautiful and the reception was a lot of fun even if I really couldn't taste the food and I stayed stone cold sober because the taste of wine was horrific to me.
6/12 taxol today. Came home and took a nap and feel pretty good now. Just not looking forward to the steroid insomnia tonight. My boss is having a 2 day meeting that starts tomorrow and I will try to power through. Wednesday afternoons are not my friend after a sleepless night!
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EverForward: I guess your cording must be back due to chemo. My PT told me cording during chemo is caused by the lymphatic system trying to get rid of all the dead cells from the chemo. I'm glad to hear that it went away for you right after your lumpectomy. That means it should go away after chemo is done! Also, thanks for explaining why Tamoxifen is now 10 years instead of 5. I was wondering about that!
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Done with chemo as of today!! Still will be having Herceptin until June of next year, but the chemo is done! Just have to get through the next week's side effects and no more.
The breast infection appears to be gone or most nearly so. However, I started leaking clear fluid out of my lumpectomy incision (last surgery was April 9!!) Sunday night. Saw the breast surgeon yesterday morning ... As long as it stays clear, then that is good. There is fluid in the tissue and it has to come out somewhere. He thought I could have chemo but the MO had the final call. He did, however extend my antibiotics just in case
My regulation MO wasn't there today but I rode up in the elevator with the PA so got to fill her in. I was the first patient so I got right in and she examined me. Then consulted with the other MO that was there. We decided to go for it rather than delay chemo for yet another week. So keeping fingers crossed no complications!
I have been dose dense for all of my chemo and this was the first time I had 3 weeks between treatments. Really enjoyed having a clear head for almost a week and was a little sad to feel the fog descending as I sat in the chair - but only a little because it was the last time :-)
I meet with the new RO next week. I also arranged for copies of all of my records from all of the doctors to be sent to her so got that done as well. Had to go and sign releases at the BS office (just down the hall from my infusion center) and our women's diagnostic center (other side of the hospital ... I was tired after chemo but I did it :-). The gal at the MO's office who takes care of that stuff got everything faxes while I was there so all of that is done. That one is super efficient :-)
Have asked around and heard nothing but positive things about this new RO so I think it will be alright. Just a pain having to arrange for copies of results to be sent to her each time as she is not part of the hospital network.
Came home and slept the rest of the afternoon away. Now the steroids are kicking in so I can get some things done this evening and tomorrow before the steroid rash ;-)
5 hours PFC but who is counting ;-)
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Hooray for you MakeLemonade!!!! Congrats on being done!
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congrats, Makelemonade! So happy you are PFC!
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congrats MakeLemonade!!! I'm only a few days ahead of you and am in dark trenches for the last time! Its giving me the extra push that I need to push my butt and start taking some of this weight off. I gained 8 lbs!
Here's to no SE's for you!!!!
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congratulations s on every e who is finished chemo. I would be lying if I didn't say that I am not a little jealous. I kind of feel like the treatment that I am on is a marathon. However saying that though I am grateful that my marathon does have a June 2015 stopping date.
So in the chair today for number 9 three more weeks until I start every 3 week specialized treatment I realized today that I am reluctant to make my rads appt. I just feel like it's gonna lead to a reconstruction mess. I am going to do it tomorrow and have a good whine about it. I finally made some Improvement on my magnesium so hopefully it will continue to improve and I can cut that out of my infusion day.
So one of my favorite questions how is the hair coming in ?? Mine blahhhh. I had hope that I would get some during taxol but now not so much.
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Stupid steroids. 11:00 pm and no sign of sleep (I've been falling asleep by 8:30 the last couple of weeks). Tomorrow is my last round of TCH, so that's probably keeping me up as well. I can't believe the end is near. Hopefully the dark place won't be too bad this time around. Fingers crossed.
Pretty soon we'll have to change our mantra from "Die, fuckers, die" to "Grow, hair, grow!"
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up all night and no sleep all day......
Steroids in effect and that is with a sleeping pill on board. 3 more Tuesdays to be up all night. Too bad I can't get anything accomplished because I will wake the other people in my house. Grrrrr
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Number 9 of 12 taxols tomorrow. But at least my 'hair' is starting to grow! Went out bald and bold tonight on the town with hubby for our 8th anniversary. Goodness my husband is a hottie! Pjs and movie on the couch after. Perfect night and best steak I've ever eaten. Maybe my hemoglobin will thank me? Now off to continue the festivities
Gnite ladies! 
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I slept last night! Ok, I took a Benadryl around 9 pm figuring, what the heck, they gave me one in the morning before my infusion so it must be ok. I went to bed at 11:00pm and at 11:30 realized I had not placed an order for futon to be delivered to my daughter s dorm room that was needed by today so I got up and took care of that. Went back to bed at midnight and only got up once to pee and checked the clock a few times in between hot flashes but I consider all of that a good night! All day meeting today so I am glad I slept more than an hour or two. A first for me on stinking steroid night!
As for the hair....a little more fuzz growing half way through taxol. Still losing eyelashes and brows are now nonexistent. Hairs on chin and lip growing, of course!
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Clarm, you look so good bald. Congratulations on being bold and beautiful!
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I have been up off and on all night as well due to the steroids. Came home from chemo and slept for most of the afternoon ... Then woke up with some energy. Should have energy today. Tonight will be a toss up.... Might or might not sleep. Then joint and muscle pain will start Thursday night to keep me awake and that will last until probably Saturday.
But this is the last time I have to go through this which is helping somewhat. Doesn't make me sleep though!
I am also concerned with this breast thing I have going on. Wondering if I can have radiation if it is still seeping fluid (probably not) and if there is still cellulitis (who knows). This will delay radiation and of course I have been worried about that... How much of a delay between chemo and radiation is too much? Have visions of rogue cancer cells that still might be left in there setting up shop elsewhere in my body if this is delayed too much :-(.
Steroids plus worry do not allow for much sleeping!g
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clarrn - rocking the bald!
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good morning all!
Clarrrn beautiful pic!! You look fantastic!!
Today is round 3/6 taxol at 2 pm. Yesterday I had my bloodwork and triage. I explained how my side effects though not bad are increasing. Aches, pains in muscles and joints, increased fatigue, continued flirting with constipation although I am keeping things moving, some abdominal aches and tingly tongue. Oh yes, I Aldo hear up like a furnace most nights which wakes me up. Do all of these SEs sound familiar to anyone?
The nurse told me that the aches and fatigues will probably increase throughout treatment although she does not suspect that it will get as intense as it was with taxotere
Ugh!
I've slept fairly well the last few evenings but today it's back to steroids and Benadryl. That = sleep for 3 hours after infusion then be wired and tired all night!! Lol
I've been on short term disability since my surgery in March and this ends sept 17 so now it's time to submit paperwork for long term disability. Funny how the thought of returning to work stresses me right out.
I don't think I can handle my job until all treatment is completed. I remember all of the stress and pressure which I used to thrive in. Right now it's hard to get out of bed in the morning and stay focused on things. Being off allows me to do things at my own pace - stress free - and focus on me
I think back to when this started. I chatted with my onc and told him that I wanted to continue working. I'm glad that he explained to me why I shouldn't.
Have a great day!!
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Thanks mmta and makelemonade!
Lemonade- I too am having some seeping from my breast, and it's the one that didn't have the infection a few weeks ago
I am still on antibiotics, but like you worry about the radiation, ? delay, and those rogue cells. I have positive DCIS (comedo necrosis) margins on that side so I worry about it too..grrr. That's one thing that I still don't really understand. How can there be ductal cancer left after a mastectomy? I can understand breast cells left behind, but ducts? Full of cancer? How did that not come out?
I guess those are worries for another day.
Hope everyone has beautiful, SE free days. I am amazed by how far we have come.
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Thanks FBN- with the time difference, we will be in the chair at the same time. I made the switch to long term disability this month, no way I can handle the stress, mentally or physically! Not to mention the ICU germs! I say fill out the paperwork. We are lucky to have the option to pay into and use LTD. Right now the more we can focus on taking care of ourselves the better!
I honestly don't know if I can do my old job after everthing, but again, one day at a time!
Oh steroids....I post more w
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clarrn I feel the same way about my job. I'm a ntl credit mgr with a large team in 2 locations and it comes with multiple tight deadlines and a lot of pressure. It's the mental stress that I just can't deal with right now. Juggling priorities, managing people issues. Ugh. I get tired just thinking about it! I dread the thought of going back right now. I don't think that I could manage a schedule and timelines and play the corporate games
I'm giving my dr the paperwork today for completion
One step at a time!!!
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I don't have time to write much today, but wanted you all know I'm thinking of you...wishing you a day of positive energy!
Clarrn...you look great! Who needs a wig or a hat when you look that good
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sitting in the chair for the first time all by myself. First the steroid, then Zantac, then Benadryl then taxol. Woo hoo!!!!
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SwissMiss, geez. You can't seem to catch a break! I would call and demand results...no way should they make you wait that long! It's much too stressful. Let us know how you are doing.
Ddkath, I hear ya on the arm thing. I swear mine weigh a hundred pounds apiece! What's up with THAT??? I hope this fatigue and muscle ache go away when the chemo ends.
Sharon, glad to hear you're doing well. Looking forward to the end of this treatment. Only three more infusions to go!
Saw my PCP yesturday...he prescribed compression stockings for me. Nice. I am now officially an old lady! Haha! My MO ordered an ultrasound on my leg...he's worried that I may have developed a blood clot. Fun.
Wishing all if you a better week! Hugs, lilyrose
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Cross posting from the TCH thread:
I finished chemo yesterday and got to ring the gong and everyone clapped. It was hard not to cry. I still have to go back for the Herceptin every few weeks until April so I'll make a bigger ruckus with the gong then. I was feeling pretty good by the evening so I walked around the corner (overruling the muscle fatigue) to treat myself to dinner and a decadent dessert while my taste buds and digestive system don't object. I was wearing a scarf without the wig and I noticed a family at the next table glancing over my way. When they got up to leave, the father made a u turn toward my table and said, "I wish you well. I had prostate cancer." I thanked him and almost started crying again. Now all I have to do is get through the next 9 days until I get on a plane to CA, aka a little slice of heaven.
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congrats ever!
I also had someone make contact with me and it was a special moment. She asked how I was.
It's a special connection we'd all rather not have, but since we do, it's nice when they reach out.
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Congratulations, EverForward, you did it, yay!
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Funny - Tuesday went to dinner at a little diner and a lady and her husband came in - I had my baseball cap on and she walked up to me and said "i had that hair cut two years ago - it gets better - hang in there" It meant alot.
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Congrats MakeLemonade and Everforward, on completing your chemo treatments!
And, good for you, FBN. You did your first "all by yourself" chemo. Glad you are feeling better these days.
Clarrn - you are inspiring. Once I get enough hair to cover my head, I will go out bare (I think).
Lilyrose - good luck wrt the potential blood clot. Hope it resolves soon!
Managed to go out to dinner last night. Couldn't figure out why I was getting more than the usual number of glances my way - totally forgot I was sitting there with my purple buff on my head.
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yay for finishing everforward
. Now rest and start healing. I am one that had a double mastectomy 5 years ago and got breast cancer again in the left over 2 % tissue. My cancer was just in breast tissue this time Also.
. Stinks In the hoke with neck pain from taxol.
. Boo. 3 more times then I can start the healing. -
surprisingly I slept last night! What's with that? I never slept the day of chemo but hey I'm not complaining!
Went to the gym today. 30 min cardio and some weights. Yesterday morning before chemo I did approx 40 min of arm weights. Feels great but my thighs always feel tired.
Have a band practice for bare rump reunion this Sunday night. Our classic rock band is called lefty and the goons and we rehearse next tues. Can't wait!!
I find it very nice when survivors share. It gives hope and I find it so positive. What surprises me us how many survivors I have bumped into
As I continue to plan the benefits I met a lady who owns a store and is a breast cancer survivor. A guitarist that we are auditioning a week Saturday is married to a woman who is a colon cancer survivor. My friend is dating a woman who is a cancer survivor. Good grief!
The key word here is SURVIVOR
Remember this when you're having a down minute, hour or day. We are survivors. There is no cure for many diseases and we live with them. We will be here many many years from now. I am convinced of it!!
Keep strong my sisters!
Love u all!!
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Footballnut - I slept after chemo day also. Took me awhile but I slept 7 hours straight with no wakeful moments and very little dreaming that I remember. HOORAAAAYY!
Didn't go to the gym but did take the dogs for a walk and an additional 20 minutes wandering around the woods trying to get one of the dogs to stop chasing the tom turkey that was flying from tree to tree. What a great sight.
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My husband teaches classes for adults, mostly women. when I got the BC it turned out that of about 11 students, 7 were survivors! And those were the ones who admitted it.
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congrats to the sisters finishing up! I'm so happy for you! Seems like a few of us are on similar schedules- 3 more taxol for me! Of course, perjeta and herceptin for a year, but will deal with that when I get there!
agree with you ladies that the fatigue is really coming on now- and that the one welcome gift it comes with is sleeping better at night! I've been passed out good for the first time in months.
Tumor board says no rads for me. Scared about that, and yet relieved in some strange way- I'm tired. I know I'm too tired to seek yet another opinion on that. 3 say no, one says yes- so I'm not getting it.
Implant exchange bumped up to mid October. Can't wait to get the canon balls out of me.
Taking a week offf treatment to vacation with family- will have last infusion 9/2. Hope some of you guys will still be here on boards with me. It's better with people who understand!
Hang in there lovelies, we are almost all there!
Sandra
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I love the stories from those of us who've had a connection and kindness from complete strangers. I will feel honored if I could reach someone this way...even just saying "I've had that haircut" could give someone the strength they need to fight another day
Ok...I'm still complaining about the hot flashes. I'm 22 days PFC and I'm still getting 12-15 hot flashes (completely drenched in sweat) every day. I know the 96 degree Oklahoma summer weather has a little to do with it...but at night I can't sleep longer than 90 minutes even with TWO fans blowing directly on me and the thermostat set at 69 degrees. Moisture wicking pj's and a cool shower before bed are also part of my routine. After three weeks shouldn't this be lessening? Should I call my doctor? Is there anything that he can even do for me? I sound like a broken record, I know.
I started radiation today! I was nervous, but wow, it was a walk in the park compared to AC and Taxol
Only 32 more treatments...ha! -
in reading your posts I see everyone talk about fatigue. I'm happy to hear its normal, but wish we didn't have this at the end. Kind of makes the end a little anti-climatic. Yay, I'm done! Too bad I can't walk to the laundry room to put a load in. Lol. And I see FBN talk about going to the gym? Girl, you are my hero! I'm beating myself up about cleaning up the house and feeling out of breath. The other day I went to the grocery store then went swimming and I felt like I completed a triathalon. It's like a deep muscle fatigue and not the kind that I feel like I can push myself on. When I'm done, I'm done.
Well, enough about that. I'm 10 days PFC and I have some hair- there's something to be said for that.
hope you are all feeling great and congrats to those who are finishing up! I love the stories about the survivors, they all make me cry. Oh and Clarrn, you look great bold and bald!!!! I hope I look that good when it all starts coming in evenly. -
dkath, you are so right! Today is day l8 after my last infusion and I'm ready to start living but instead I am just existing. I did put one load in the machine today! Yay! Then I took to bed for the rest of the day.
I'm in terrible pain from neuropathy. My feet feel as though they are burning. So I finally took a Vicodin.
And it helps. But you're right, when will this let up????
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ddkath- Thanks!
Mscaruso- I am taking the 20th off for a week vacation, so I will finish on the 3rd of September. We'll keep each other company!
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swiss: I'm right behind you! Congrats on starting rads! I am a good two weeks (this past tues) from chemo and I'm still having major hot flashes. I also haven't fully gotten over the chemo belly (D). So I'm wondering if that is the Herceptin? But overall, the fatigue is beginning to subside. I'm happy about that. Have a college visit with my oldest today. It's a 90 minute walking tour. Hopefully I'll be able to hang in there as I'm still working on the foot neuropathy. I'm sure I'll end up being fine, physically.
Hope you all have a wonderful weekend!
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Timbuktu - I can absolutely relate to having to rest while doing laundry - I still have some to fold from 2 days ago! This darn fatigue is soooo annoying.
Anybody else starting with tamoxifen, arimidex or similar? One more thing to add to the mix. I thought hot flashes were a thing of the past - guess I was wrong.
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clarrn, it's a date!
And brigadoon, we are with you for the long haul! You are not getting rid of us so easily!
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Swissmiss - have you tried cutting down on carbs for your hot flashes? I find that mine are much worse the more carbs I eat, especially after 3 PM. Just a thought.
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Hello chemo sisters. Just checking in to see how everyone is doing. Are the PFC ladies regaining their strength? Any stories of new hair growth to share? I'm 5 days PFC and the worst of the aches and pains is done. Now I'm just dealing with the typical tummy/digestive issues and the fatigue fatigue fatigue. The last infusion was an emotional roller coaster. Seriously, I felt like I was bipolar - one minute scared to death and anxious about having to do this again, the next minute so happy that this was the last one. I've stabilized emotionally for the most part. I just need to make it through the next few days and then I'm off to California to visit my family and my cabin for a glorious 2 weeks.
You ladies have been my strength and sanity through all of this. This has been my safe place, my venting place, and my I can't be strong anymore place. We are getting through this, even on those days when it doesn't feel like it. Hugs to you all.
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brigadoon...coincidently, I found a website that suggested reducing caffeine and carbs for hot flashes. Of course, I just had toast for breakfast (along with a hot flash!), but I'm going to give it a try. Reducing carbs might help me lose this steroid belly too
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Swiss. Let me know how it goes. I just know it works for me. If I have spaghetti, garlic bread and dessert I might as well kiss a comfortable night good-bye.
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Everforward - I can report fatigue is still here for me at 6 weeks PFC, but it is much improved from the first few weeks. Hair - what's that? I do have little sprouts popping up, but still looking pretty much like a cabbage patch doll with no hair. Patience, I guess.
Swiss and Brigadoon - thx for the info on carbs and coffee. I had spaghetti for dinner last night - and had a terrible night! Now I know better.
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Got to go away this weekend to an agility trial 5 hours away AND got to see my younger son whom I haven't seen since Easter. Hubby drove the RV so I got to sleep almost the whole drive there. I was SO tired on Thursday due to steroid crash from treatment on Tuesday. Each day got better and better in terms of my head clearing and general energy level. I went back to the RV mid day each day and slept as there is still a lot of fatigue. I am trial secretary for agility trials, so needed to be there but didn't run my dog. That is going to have to wait for several more months :-).
Even though I did talk about cancer as there were so many people that hadn't seen me for months and most didn't "know", it also felt good to talk dogs and agility again and be somewhere other than in bed, on the couch or in a medical facility :-). Just like a "normal" person :-)
While I was getting my Herceptin last week, several of us were commenting that we had the same "hair style". One of the gals must have had a reoccurrence as this was her second time having to go through chemo :-( She said that last time it took about 3 months before she had enough hair to go out without something on her head".
Feels so good to know that as the SE from last week's treatment subside, that it is the last time I have to deal with them! :-)
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Here is something I have used as a dessert that doesn't interfere with my sleep. You would have to like blue cheese dressing but if you do, I can tell you this is really delicious. I came up with it when I was on Atkins.
1 apple, diced. 1 t to T of blue cheese dressing (depending on size of apple), cinnamon to taste. I sometimes add raisins but usually not. I know it sounds crazy but I love it. I crave it.
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Ladies! I hope you are all well. I wanted to check in and see how everyone is doing. As always, my thoughts and prayers are with those in the chair and visiting that awful Dark Place.
I am a little over 3 weeks PFC, and I'm happy to report that the Chemo Brain is nearly gone. Hooray! I also have some very fine, very WHITE stubbles all over my head. It's very little, but it's there! It's also all over my legs, which means I'll have to start shaving again. Dang.
Also my taste buds are back to normal - so coffee and I are BFFs again. So Awesome!UNFORTUNATELY, I am still dealing with the deep muscle pain. Every single morning I wake up feeling like I've competed in an Iron Man the day before. It got really bad after Round 4 and hasn't let up, so basically I've been in pain for 9 weeks and counting. My MO tells me this is normal and to give it time. Apparently it could last for another couple of months. Yowch! To make things worse, I've gained a total of 17lbs throughout chemo. I was told that half of it is likely water weight, and again, it will "just take time." But some of it is the result of carb overload and no activity. And I can't exercise because of the muscle pain. I've been taking tortoise-paced walks, but that's all I can manage. SOOO frustrating. Some lingering tummy issues too. GAH. Why did I think that the end of chemo meant a magical transformation to feeling fabulous?
Can you see how impatient I am? I KNOW it takes the body time to heal after pumping it full of poison for months. But I WANT IT NOW. Like Veruca Salt: "I want an Oopma Loompa Daddy! I want it NOW!"
ANYWAY, I had my first Only Herceptin treatment this past Friday and everything went well. I can honestly say there were no side effects. I was a little more sleepy that night than usual, but other than that...nothing. What an amazing feeling to walk into and out of the Chemo Lounge knowing that the Dark Place wasn't waiting for me!
A friend shared this with me on FB, and I thought I'd pass it on to you. We are SO much STRONGER than we think.
Run like a Girl, Swing like a Girl, FIGHT like a Girl. Damn straight!
Take care Ladies!
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It's after 2 am and I've slept almost all day.
I went to the onco today. She had told me 3 infusions were enough. I fought her and had 5 but this last one was rough. Terrible palpitations and feeling faint, neuropathy that was so painful it woke me from a dead sleep. So I decided 5 was enough. I thought this would make her happy. Instead...she said that tumor markers (the ones she told me to ignore) had come down so much during chemo that she was worried about another malignancy! She didn't want me to not have the sixth infusion because if it comes back I might have regrets! I just sat there dumbfounded. I had psyched myself up for three weeks, going back and forth until I thought I could not endure one more infusion. This is my second go round with chemo. And I felt I was going against drs orders which is very very stressful! All along she told me the tumor markers were meaningless. Now they can be a sign of another cancer and she didnt' want to explain it to me.
So here I am, after sleeping all day and night from total exhaustion, and I'm sick at heart. What to do?
I've never had a dr like this before. She changes her mind so many times! And in a way, I think that may be because she cares. But how can I make the decision? She even asked my husband what he thought.
That annoyed him, how should he know? All we know is that I've been through an awful lot. And I asked about that sixth dose of carboplatin and how dangerous it is. She said it can happen at any time but more often after the sixth.
Anyway, this is not a nice way to end chemo. she wants to see me in 3 months, to see if the tumor markers (the meaningless ones) go up. I have an app with my surgeon at Sloan in September and I'm glad of that.
Especially now!
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Timbuktu...I'm so sorry about this situation. I wish I could say something that would help make sense of it. ((Hugs)). I am glad you went against doctors orders and endured the two extra infusions...if you hadn't, and these "meaningless" tumor markers made their appearance you'd have regrets. Your instincts are good, but I do wish your MO made you feel more confident in her decisions. Maybe ask her to have a colleague take a look at your file, or see another MO before you see her in three months.
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Thanks Swissmiss. You make a lot of sense. Imagine if I'd listened to her and only had 3 infusions?
I don't know why she didn't tell me these things earlier. I really feel as though this is too much,
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Timbuktu, So so sorry that you are having to endure all this uncertainty. After all, we are NOT the experts. The MOs should give us a plan with confidence that it's the best possible plan for us. I agree with Swissmiss that you might consider getting a second opinion outside of the practice you are in. Or, ask your MO to have another doc in the practice look at your records and offer his/her opinion. If your MO is the only one in the practice that specializes in bc, then I would go elsewhere. A good doctor should never be offended by another getting a second opinion.Will be keeping you in my prayers. Hang in there.
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Believe it or not it helps a lot just to be understood! The world seems so topsy turvy when these things happen but the people on here are so grounded. I just have to find the emotional strength to do anything. I feel as though this has done me in and I'm done, no matter what anyone says. Maybe it will take a few days to get my footing
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The thing that bothers me the most is that your oncologist didn't want to explain it to you.
1) How can you make good decisions if you don't have good information?
2)it's your body and you make the decision
3) you are paying him/her so they are your "employee"
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Timbuktu, sorry you're having to make such a tough decision. But you don't have to make it right this minute, do you? Maybe take some time to let this settle before making that call. Never make a big decision when you're in the dark place. I agree a second opinion is never a bad idea, especially if your MO is unsure. Hugs. Let us know how this goes.
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She told me I had until today to decide. My husband was really angry too, that she didn't want to explain.
I really can't process this so quickly. I thought I was going against her orders in having more infusions and that I was compromising by cutting it short by one. And now she's saying I should have all 6? And the sixth is most likely to create the life threatening reaction. IT's just all too much! It helps that you guys understand, truly because it's crazy making. I'd been psyching myself up to do the "right thing" and not have the sixth and now she's turned the tables on me.
BTW, initially I did get 3 opinions. Sloan said no chemo. Anderson said no chemo. She was the only one who said "chemo". Then I went back to sloan and the onco there changed her opinion and said "chemo, all 6". So I went back to my local onco and here I am.
I'm really at a loss and you are so right, I am in a dark place and I don't trust myself to decide. Of course I want to feel better, physically. But I want to do the right thing for the long run. Something she has been pressuring me NOT to do.
Thanks for the support.
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Boo on that Timbuktu
Big hugs! That is too quick to decide. When would #6 be? Could you say yes and then cancel on short notice? As everyone else said a second opinion seems extremely reasonable to me with the way things have gone. Do you have a nurse navigator you could call who would advocate for you? It frustratl -
The sixth should have been yesterday. The nurse just called and told me my tumor markers are way down.
She said that was good but of course I'm wondering if it's because the chemo is working on something.
My husband, without telling me, had called and asked for the name of the disease she mentioned. That was sweet of him.
The nurse said that I'd made a reasonable decision. That I've been through a lot.
She's a sweet young girl but of course no one really knows.
The dr really did not handle this well....
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hello everyone,
Timbuktu I am so sorry you are dealing with this. Sorry, I missed what reaction you Re worried about with a 6th treatment? I am not familiar with that and wish I had some words of wisdom for you. I truly don't think you can make a wrong decision and with whatever path you take, embrace it and never look back. I know, easier said than done.
Well,I got the best birthday surprise today from my MO appointment before my taxol #7. He said I'd didn't have to do the last cycle of 3 taxol. So, I have two more weeks and I am DONE! The first round of Taxotere makes up for the one cycle of taxol. I had my required 4 rounds of cytoxan and the extra bonus of 3 adriamycin. Doc doesn't think their is any added benefit to continue past 9. I am thrilled!
I will start tami in September and stay on it until it is confirmed I am past menopause and move to an AI.
So close! Even the dark place dpi am sure to be headed for tomorrow is not so dark!
Wishing everyone the best!
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Cold had a bad reaction to the sixth carboplatan. I asked my onco nurse about it and she said yes, it can be life threatening. As I had been advised not to have chemo as well as to have chemo I thought I should probably skip the sixth infusion, especially since I'm struggling so with side effects. But now I'm not so sure.
Does anyone else have tumor markers going down with chemo?
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Timbuktu - Mine went from 144 to 31. My Onc was excited about it but I am just on Taxol/.
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hi brigadoon, I remember that you were an outlander fan. How did you like the new book? I loved it. A friend went to see Dianna Galbaldon speak and , feeling bad I could not go, she got me a signed copy addressed to me. Did you see the new shoe on starz? What did you think? Has anyone else watched the show?
Timbuktu, I'm sorry you are facing this decision. I would say yes to doing it, then get the second opinion. You can always cancel #6 if you need to.
I'm on the chair having taxol #4.
Be well everybody!
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I think I'm coming round to having to do it. My highest tumor marker was in the 50s if I remember correctly.
Now it's 12. I have to calm down and think rationally about what this means. Not easy!
Thanks for the input!
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Timbuktu is that you Ca125 number ??
Number 10 is in the books! Did I mention that I NEED hair, sooner rather than later.
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Congrats on almost being done, mmtagirl.
Hope everything goes well with Taxol No. 4, Blueberry.
Timbuktu - it's so unfair that you have to go through this. Whatever you decide, I hope you demand to talk to your MO and have her explain her cryptic comments, and have her tell you what she's going to do about easing your mind. The worst part of this whole experience (at least for me) was all the unknown at the beginning. Your MO seems to be continuously putting you through this all over again - even if she means well.
Adding, Congrats on No. 10, Jaimieh. Hey, at least you are beautiful with no hair!
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Blueberry -loved the book. Can't wait for the next one. My favorite place for them to be is the mountain (if they can't be at Lallybroch).
I watched the first episode on the computer and wasn't sure of I liked the actor playing Claire but when it was s on Sat. I enjoyed the whole thing. This production and story are so much a part of the scenery that a bigger screen is important. (IMHO).
What was your opinion?
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Yes, it was the CA 125 number. I just got my other labs and my hemoglobin has dropped from 11 to 9, I think that explains a lot about how I'm feeling and it's a vote against. Glucose is over 200 without the steroids. I'm a mess!
I have to calm down and discuss this with her.
Jaimeh, you are so beautiful!
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I am a new Outlander fan, and I started reading the series because of the discussion on this board
I'm currently reading Drums of Autumn. It is truly the most engaging series I've read in years...I'm in love with everything about it! Of course, I watched the first episode of the tv series, and I must say it was very good! It looks authentic, and although some of the actors were not quite what I imagined, they will do just fine for this new fan I just want to say thank you to those who introduced me to Outlander; it is one of the few positive things I feel I'm taking away from my BC journey. Where would I be without you all? -
Whenever I read Outlander books I feel like I'm stopping in to visit my old friends Claire and Jamie and their families. The story is so robust and the world so well created that it just comes alive even with chemo brain. I'm so glad you like it, Swissmiss. I really liked the show but wish they had done less voice over. But the imagery and story are spot on, I will keep watching. I wish they released it like House of Cards so we could binge watch.
Well wishes to all for no SEs and no pain.
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Pre chemo appt today, bloodwork is good but my MO is not happy that the neuropathy in my feet has remained constant despite the dose decrease. Down to 75% of the dose for Taxol tomorrow and then a week off. If no improvement then chemo is OVER. I feel weird. I won't know if tomorrow is my last chemo until a few weeks after. And of course I worry about not finishing but also that my feet will be half numb forever. What a mix of emotions, I just feel like having a big cry about it (and I love that I don't have to explain that to any of you) And as great as my timing seems to go, my best girlfriend moves 14 hours away Friday and tonight is the last time we see each other. I should bring a whole box of kleenex.
Comic relief: Today as I was laying on the exam table and the nurse practitioner was doing the liver check thing, she was like "um, do you know you have panties in your pants?" and I'm thinking "of course I am wearing panties!" Then she shows me the pair of panties.... Early this morning I had grabbed my still sleeping daughter and tucked her in the car in her pjs. She wears a pull up at night and I had grabbed a pair of underwear for her to put on at grandmas when she really woke up. I didn't have pockets and my arms were full with her so I tucked them into my pants elastic at my hip and was planning on putting them in the diaper bag when I got to the car. And that's where I totally forgot about them. Until the nurse practitioner discovered them. LOL chemo brain! SO glad she found them before my MO. I would have turned a million shades of red. He is according to my husband "hot" and I would have been mortified. hehe. Couldn't stop giggling enough for her to actually check my liver for a few minutes.
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Clarrn, we're in a similar position, except for the panties.
You onco makes so much sense, testing your blood before your infusion. Mine takes the blood and then starts the infusion before seeing the results!
My feet are killing me, my fingers are tingling. My onco said she does not cut back on Taxol. She does not change anything. My hemoglobin is down to 9 but that wasn't part of our discussion because she didn't have the results yesterday!
I totally relate to your confusion with the panties. My head is in the same place but how on earth are we supposed to make treatment decisions? At least your dr. seems to be in charge.
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lots of Jamie and Claire fans on this thread:-). I am still getting through her latest book and did get a chance to watch the series premiere. I thought it stayed true to the book story line but it did take awhile to reconcile my mental image of the characters with the actors. I agree with Blueberry on the voice overs but think in the beginning they are needed for those that haven't read the book to not get confused.
Clarrn, your panty story is a hoot! Thanks for sharing. I also had similar reaction when I received my news yesterday. I was so happy for the light at the end of the tunnel to open up even further but the "what next" is a bit uncomfortable. When asked how do I know if we got it all he said "do we know if you are cured? No, I can't tell you that. But, we killed all the cancer cells we could and I don't think more chemo would provide any added benefit." Now we wait to see if my body tells me something through a lump, bump, unusual ache or pain and then we check. That's the scary part for me. At 52 when don't I have a ache or pain? When is joint or bone pain not a side effect from tamoxifen and something else. This is when I am glad I enrolled in the RxPonder trial. At least I know that I will have a few more doctor appointments, bloodwork, exams to help me ease through this next transition.
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I was walking to work this morning and got to the slight uphill part where I have to slow to a crawl if I don't want my legs to fall off. Coming toward me I saw a woman on her morning jog. With her long, shiny hair pulled back in a ponytail. And her perfect boobs. She looked so healthy. As she passed me I had an overwhelming urge to PUNCH HER IN THE FACE. I guess I'm a little jealous of healthy people. It's been sooooo long since I've felt strong.
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Timbuktu - sorry you have to go through all of this! Someone else mentioned it too, but it is like the waiting to hear what the game plan is that should only happen at the beginning of all of this! :-(
My hemoglobin has gone up and down and I have had to have two blood transfusions. You don't get a blood transfusion until it is down to 8. Depending on your age, they might let you go down to the high 7's. I am hoping mine hangs in there. Went from 8 to 11.2 after my last transfusion, then 10.8 last week at which time I had my last Taxol, then 9.9 yesterday. I get Herceptin again next week, so hoping the hemoglobin hangs in there as I won't get another blood draw for 3 weeks after that. However, I know what it feels like, so I can always call.
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Outlander - read the series several years ago, then the first 3 or 4 by audio books this year. Haven't watched it yet ... I think I will now that many of you have raved about it :-)
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Met with my new RO yesterday and really like her. Simulation/setup will be tomorrow with rads to start Aug 25. My trip to California in mid October is now still in the cards which made me very happy! I had been worried due to the delay with the breast infection. This trip has been my goal through out all of this and has kept me going! Now need to figure out if I should join the Summer or Fall RADS groups :-)
The organization that I work with regarding the trip doesn't know about have breast cancer and I had been dreading having to send the email telling them I couldn't go. But came home happy that I will be able to go, and there were my flight arrangements in my inbox :-)
Have any of you felt betrayed by your own body? The breast cancer and then two subsequent breast infections has me feeling betrayed by myself. I don't know how to describe it .... It is one thing when I can't run without getting winded when I am "healthy". Heck, I am an overweight, out of condition, middle aged woman .... So that is my own fault and I can understand it. But this .... I look at this left breast and have to ask "why!?" Seems like a separate entity just doing its own thing and not being a team player!
Now am hoping that I have no further set backs. This breast needs to behave! LOL
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Ever, you are working! You are walking! You're doing pretty darn good! But I sure do know what you mean!
Make, thanks for the info, I was wondering when they would start thinking about transfusions.
Do you take iron pills or adjust your diet at all?
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Makelemonade: I totally understand when you say you feel like you've been betrayed. I do too. I feel like my body has betrayed me, and I don't know if I can ever trust again. Every single twinge, ache, itch, bump is going sent me into a 5 day frenzy.
I'm also meeting with my RO on Friday and will find out more about RADS. I want to start, but honestly I'm still so fatigued I'm not sure that I can drive there every day. OR, maybe by doing so I will start to get my energy back??? does it work like that with this fatigue? The more you work out, the better you feel?I don't know, I've just been so emotional the last few days. I just want to be able to get out and do stuff.
Everforward: I hear you!!! LOL! I live in a Cul de sac and one single girl lives in the house across from me. She's tall, skinny as hell, long blond hair and works out like 2 a day! she's either coming back from yoga with her matt, or from a run. So annoying. I can't be friends with her. when I look at her, I think, all she has to worry about is what color work out clothes she's going to wear with her shiny new sneakers. UGH! I don't want to be bitter, but there it is.
I feel fat, bald, out of energy, not very motivated, really don't want to be around anyone, and I cry at the drop of a dime. How's that for amazing a brave? This is not like me, and I have to turn this around somehow.
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Ddkath,
I can totally relate to the whole feeling fat, bald, no motivation, ect. That's me in a nutshell. I don't feel like myself at all. I get kind of angry that I can't do anything I was doing six months ago. All I can say is, I sure hope we get back to some semblance of 'normal' one day. I'm trying to remember to take one day at a time.
MakeLemonade, I'm sorry you are dealing with neuropathy too. For me, it is THE most annoying SE right now. I'm glad you will be able to make your trip this fall!
Ever forward, I can totally relate to your feelings when you see healthy people running around doing so much with out a thought! I sometimes think I need a punching bag to release my anger.
I'm sitting in the chair right now getting Taxol#10. Can't wait for this to end.
To everyone else, I'm too tired to go back and read the last few pages. So I will just say that I hope you are all doing well today. May you all have a better week! Hugs, lilyrose
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Timbuk2 & clarrn: Sorry to hear about all the recent troubles and stresses. Sending positive vibes your way.
Everforward: I LOL-ed reading your post about wanting to punch Miss Perfect in the face!!!
Well, it's a happy day for me today. I am sitting in my chair, getting my 6th and last chemo treatment! Yay! My MO gave me a leia to wear and I get to ring the bell when I'm done. One more journey to the dark place and back, and then...radiation! OK, I'm not looking forward to rads, but at least I've reached a milestone in this journey. Here's a pic from my chair. Best wishes to everyone for good minimal SE days.
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Timbuktu - I was told by someone dressed in scrubs (no brain power and certainly didn't have it then when they told me <g>) that dietary iron wouldn't absorb to raise the hemoglobin. I just try to take in a lot of protein, not that it did me a lot of good two times! Another nurse said that, for some people, if the hemoglobin is going to down, it is going to go down. She even said to not be surprised if I have to have another one a 3rd time. Am hoping that it can recover ...
MommyQ ... you look great!! Congrats on the last chemo!
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I am posting this on a couple of boards because I think it is interesting and might help someone.
http://blog.dana-farber.org/insight/2014/08/post-traumatic-stress-and-cancer/
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MakeLemonade: Thanks!!! Looks like we'll be doing rads together. That's great you like your RO and can make it to Cali! Please let me know how simulation/set up go. I meet my RO for my initial consultation tomorrow morning. I think we should join both the Summer and Fall Rads groups. Summer Rads folks can warn us about what to expect. Fall Rads folks will be on our schedule, so we can discuss our day to day stuff as we go through it together.
Hope your hemoglobin levels are getting better. As far as your comment about being betrayed by your body, I don't know if that's how I feel. I think I'm more confused why I got breast cancer. I am not predispositioned by my genes to get it and only have one case of breast cancer in the family, which was one cousin. I just don't understand how I got it. Maybe it's my love of everything fragranced (perfume, soaps, lotions, etc), with all the parabens and styrenes that did it.
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Congrats on finishing chemo MommyQ!
I also feel confused ... however, I have not used too much fraganced products. And no history of breast cancer in my family at all!
My biggest factor, other than just having breast tissue :-), is late onset menopause. I had 2 periods while on chemo and I swear it feels like I am getting another period now! I am so DONE with having periods ... I am going to be 57 soon, so it is time to STOP! My onco nurses say it is great for my heart and bones, however, having a period is not good for breast cancer.
I joined the Summer rads group a while ago as I was nearing the end of chemo. Just haven't posted ... then things got postponed ...
You mentioned cording over on Fall rads ... see if you can get to see an LE PT before rads start. My RO said that it is even possible to have a full lymphedema massage in the first week as the skin should still be okay then.
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I didn't go through menopause until 59 and got breast cancer at 61. I also got my period at 11 so I had a lot of estrogen over my lifetime. My mother had breast cancer at 65, so I did have the gene.
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No BC gene here either. I even had the BRCA1 and BRCA2 test - both negative. I have one aunt who had it and one cousin - I never thought in a million years I would get it.
Anyway, MommyQ and MakeLemonade I believe I will be right along with you in the RADs cycle. I meet with my RO tomorrow morning and I'm assuming they will schedule the simulation for next week. Anxious to get this started, although I'm worried about the fatigue and getting there everyday. It's 30 min from my house. UGH.
Had some swelling in my ankles yesterday, but it seems to be a bit better today. I'm definitely retaining water. I meet with MO today to go over the end of chemo so I will see what she has to say. I also want to know if I can start taking Biotin for hair/nails.
Can't wait for the weather to cool down so that I can start walking. I'm jealous of all of you who can get out and do a little walking. It's still in triple digits here!
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I think a common misconception of who gets breast cancer is that more of us have the genes that make us more susceptible. Only about 10% of the women diagnosed with breast cancer are thought to be hereditary. I thought the same way - why did I get it - until I realized that I am in the 90 %. The reason that so much is discussed about the brca 1 and 2 genes is that if you have those genes then the odds of you getting breast cancer is 50% and up.
I know I would like to know why me - but it seems that this disease is an equal opportunity disease.
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I think they have not discovered all of the genes. I know someone whose mother and sister and grandmother had it. the dr. said it was definitely genetic, they just don't know the gene yet.
Has anyone here had discoloration of eyelids? My eyelids and above seem to be turning orange.
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Figuring out why I got BC is one of my preoccupations
. I think it came down to a surge in estrogen in my system, some call it estrogen dominance. Of course, this is just my opinion. But I really want to figure this out so my daughter can be better prepared and hopefully avoid going through this. My genetic test was negative too...although ALL of my paternal grandpa's sisters had breast cancer. My dad doesn't have any sisters, but I certainly take after his side of the family, in general. I just think I'd feel more at peace if I knew the exact origins behind my cancer.I am four weeks PFC and still no hair
I still have some muscle stiffness from the Taxol, but each day is better. I started exercising today...my kids went back to school this morning, so I figured I should work too I also went to my sixth RADS session today...only 27 to go! I feel like I am "getting the job done." Hope you're all having a great day!
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Hello Ladies, Congrats to all who have just finished chemo. Fantastic!!!I started the actual radiation treatments one week ago today (exactly 2 weeks PFC), so I've had 6 sessions and so far, so good - but that's what I would expect early in the game. I basically did well on chemo, so I'm hoping and praying that rads will go well too. That's my philosophy until proven otherwise! The set up session was a piece of cake, then went back the day before the first actual treatment to make sure the measurements were correct. My rads are an easier commute than chemo - only about a 15 minute drive. Door to door, the whole thing takes me about 45 minutes total. I put on Calendula cream 2-3 x a day (once immediately after rads--so they recommend you have 2 bottles & just keep one in your purse) & the ointment version of it at night. I told my RO that it was hard to spread and she said since I'm small breasted at least for now, I really only have to put on the cream at night too.
Several months ago, I posted some on the Spring 2014 Rads thread because I wanted to see what's coming. So I will look for the Summer & Fall Rads threads. Haven't noticed them??
I thought I'd made a post somewhere about my port removal two days ago in the surgeon's office (rather than the hospital), but don't think it posted for some reason. It was so easy. I put lidocaine on the port area few hrs before, still felt some stinging from the Novacaine, but the actual removal was quick and painless. My husband held my hand throughout. Didn't have to go to the hospital fasting and run the risk of getting an infection there, not to mention the aftereffects of twilight sleep.
The suggestion of getting an education and baseline arm and hand measurements from an LE PT is a good one. Mine was a few months ago, and I have an appointment to have a sleeve and glove fitted next Monday. I was told to wear it proactively when I fly - my first time will be in early Oct.
Don't know about orange eyelids someone mentioned, but did have swollen ones, and eye doc confirmed I had an infection in both eyes a week ago - used steroid eye drops 4 x day & infection gone today. Lost all my eyelashes - again - and thought maybe that clogged up ducts caused swelling, but she said No & to use hot compresses for that. Eye infection = no liner which makes me look like an alien. My whitish stand up hair is growing, and I've decided it makes me look exactly like Yoda - the little guy from the Star Wars movie. Lol!
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Went out to the mall for a little bit today and darned if I didn't feel jealous of everyone! I realized the reason I was not jealous before was because I never left the house! I felt like yelling at all of those healthy people "do you know how lucky you are?" Of course I have no idea who has been through this themselves. I'd like to think there is a good place waiting for us at the end of all of this.
My dr has not returned my call, nor has her nurse, nor has the social worker.
I made an app with my onco at Sloan for Sept. But that's a long time away.
My goal right now is to not lose my mind. But maybe I should, and get some action!
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No, I don't think they have discovered all the genes either. I heard a researcher posit that antibiotics were responsible for the increase in a lot of diseases since 1930 - cancer, diabetes 1 and 2, ALS, on and on. It is his theory that above and beyond the bad and good bacteria that we know of there are other good bacteria that have been bred out of our systems by the over use of antibiotics. His reasoning and research seemed quite sound.
I am banking on the potato. The potato has 2 more chromosomes than humans do and scientists have done a good job of rooting out potato disease. There is hope!
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I for one believe it was genetics in my case- cancer on both sides of family (not breast!) going backs generations. I have genetic testing later this month- but I doubt it's brca. It's probably an unknown mutation for me. I was also surrounded by secondhand smoke most of my childhood/ teen years, which did not help.
I, too, feel Ike screaming when surrounded by the healthy masses. If only they knew. I feel like I'm the only one, a space alien landed here. Scream away brigadoon , ever!
Was also in the chair today, st Louis! 2 more to go! Next week I'm off treatment for a week to enjoy the beach!
I'm really apprehensive about chemo ending. What then? I'm comforted by my year of herceptin/perjeta. I'm certain it will be hard for me when that ends.
Glad to see so many posts- I hope we all continue to post from time to time to keep up with each other.
I have spoken to my onc about future trials of neratinib, vaccines , etc . Not surprisingly she seemed to downplay them. I will investigate them anyway. I think I learn more on these boards than anywhere else.
Sandra
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Hmmm, it sounds like a lot of us are in the same boat. Totally shocked to get BC with little or no history. I sure hope docs can figure out the cause(s) soon. I would like it if my 2 daughters didn't get BC, too. In the meantime, I'm trying to buy more organic foods, and get rid of products with synthethic fragrances, parabens, sulfates, and phthalates; BPA containers and flame-retardant clothing; oxybenzone in sunscreens, etc.
MakeLemonade: My MO sent an order over to the PT office yesterday and I was supposed to get a call today from them to set up an appointment, but I never heard from them. I'll have to call tomorrow if they don't call me first. I want to get rid of this cording now!!! Thanks for the info on LE massage up through first week of rads. Good to know. Wow, yeah, tell your period to stop already...YIKES! I had 2 periods during early chemo and then they stopped. So now chemo is done, I wonder if it'll come back. Probably. Yuck.
Ddkath70: Yay, another rad buddy.
I've been lucky in St. Louis this summer to have very mild temps. Usually, it's crazy hot & humid here in the summers (90s-100s), but it's been 70s-low 90s so far, so I've been walking my dog when I feel up to it (when I'm not out of breath taking only 3 steps).SwissMiss: I think it's gonna take several months before we can ditch our headcovers, unfortunately.
I hear it takes a while for the hair to come back. Glad you're feeling better each day, though!MomMom: That's great that rads are going well for you and port removal was a piece of cake! I haven't decided whether to get mine out before rads or wait until after they're done.
Timbuktu & Mscaruso: I'm always amazed when I find out about others who've beat BC. There are SO many of us out there. You can't tell by looking at them because they've resumed a normal life, and we will too. One day at a time. We'll get there.
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i was negative for brca genes too. i don't think I will ever know what caused my cancer. I just hope my treatment works.
Sorry Timbuktu...wish it was going better with the docs.
Tomorrow I have my dry run for rads and then start my 33 treatments Monday.
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It took all week to find out but there was a misunderstanding with my dr and she didn't mean that I had another malignancy! Alll week! No one called back! I got through today by calling the social worker, explaining my situation and she called my dr. for me who had her nurse call me. All's well that ends well but I wish it had been taken care of sooner!
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Timbuktu - any chance you can get a different MO? You really don't need the kind of stress this doc is putting you through!!.
My GP said that everyone has cancer cells in their body and that there is some kind of trigger that sets them off in some people. Viruses have been suspect, chemical exposure have been suspect and genetics is definitely suspect among other things. I believe it is mostly environmental toxins. I was stationed at Ft McClellan Alabama for basic training. It is now considered one of the dirtiest places on earth. Monsanto made the town of Anniston one of their dumping grounds. There is a fund to provide for care for the people of Anniston by Monsanto for all the cancers that have come out of that area but it does not provide for the soldiers stationed there. Our government refuses to acknowledge that this is an issue cause then they would have to provide the healthcare. Ft McClennan was a testing ground for alot of chemical agents including agent orange and worse. I got really sick when I was there in the late 70's - an unknown virus. I think that may be my trigger. But on the other hand I have a friend with BC - she has always been the most health conscience person I know - was eating organic when most didn't even know what that meant, has always been in shape, and no one in her family has ever had it. When she was diagnosed she was very angry. She kept telling me that she didn't "deserve" it. This was before I had it. She stayed angry for about 6 months - she finally accepted it as just bad luck.
If they could figure out the triggers for cancer then they could find a cure. I really think they are starting to get there as they are developing more and more gene therapy drugs that turn triggers off. We can sure hope.
On a whole other subject - I am awaiting a bone scan test. My alk phos continues to rise even after chemo has been stopped - over 6 weeks ago. Initially the MO thought it was chemo caused and he still mostly believes that but I also have a nagging back pain since the middle of May so with both of those happening he is a bit concerned with mets to my spine - uggghhh. Had the test yesterday but will not find out the results until next week. Keep me in your thoughts and prayers.
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Linda, I'm saying a prayer for you right now, Let us know when you find out it's all clear!
As for how we get cancer, what a mystery! My aunt used to have a coffee klatch every evening in her apartment. A group of about 5 women would smoke and drink coffee all night. Four of the women died early from cancer. My aunt is still going strong at 85, no cancer. She eats meat and cheese, stays away from carbs. Smoked for decades. Had plenty of stress. No one in my father's family had cancer, just cardiovascular disease.
Then there's Jimmy Carter. His father and all his siblings died young from pancreatic cancer. He's still going strong. I read that they're studying him. There is a very carcinogenic fungus that grows on raw peanuts. But he seems immune. BTW, my son took a class on cancer when he was in med school. The one thing he walked away with was to never eat raw nuts. Never buy unroasted peanut butter. The professor said Jif, Peter Pan, etc were the way to go, preservatives are good!
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Wishing you the best outcome, Linda.
Congrats on the last chemo, MommyQ ( and anyone else who may have hit this milestone).
Funny, I don't really question getting breast cancer. Because my mother and aunt had it, I may have just expected it - and glad it held off so long. Still not happy about getting it, obviously.
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Linda, Praying for a good outcome on your bone scan. I have no idea why cancer picks some and not others. I'm BRCA neg and have no history of BC in my family except for my paternal grandmother.
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hey there BC sisters, wonder if anyone is dealing with swollen ankles. I was feeling like my legs were tight And heavy so my husband gave me a massage. Next thing I know my feet and ankles are swollen and my legs are fine. My MO seems to think that it's due to the steroids and water retention, even my face is puffy. She gave me a water pill, seems to be helping. Just wondering if anyone else is experiencing this.
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Ddkath, I have had the same issue for awhile. It started with the Taxol. I am on Lasix and also needing to wear compression stockings. My face is puffy too. My MO tells me this should disappear once I finish chemo.
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For those who have finished chemo...have you been in contact with your MO? I am four and a half weeks PFC, and have not heard from my MO at all. I started radiation a week and a half ago, and still have several weeks to go. But wouldn't my MO wonder how I'm doing since my last chemo? Or want to set up an appointment for post radiation plans? I'll probably be put on tamoxifen after radiation, but I'm wondering why not now? I know I must be over thinking this, but from the beginning of my treatment I've felt sort of lost in the shuffle, like I'm always being forgotten.
I have an appointment with my breast surgeon tomorrow (finally!) to have my port removed in her office, and to go over my mammogram results. Wish me luck!
Wishing you all a great day!
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I saw my onco one week ago. When I had a question I could not reach her. It's weird.
Now I'm getting nervous about skipping the sixth infusion and it does feel odd, it's as though she's done with me. I'm not supposed to see her for three months.
I had a talk with the social worker. She told me it's important to advocate for yourself. But then she contacted my onco. It was the only way I could reach her!
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Swissmiss, I agree that you should have had an appointment with your MO by now. She should certainly be checking up on you to see how you're doing post chemo and suggest a date for beginning rads. She should answer any questions you have on what's next regarding other treatments and when, and when you should next see her. I would call and make an appointment and come to the visit with a list of questions/concerns. BTW, my MO suggested starting rads 3 wks PFC, but my RO was in charge of that & it was only 2 weeks, which made me very happy as I was ready.I think I posted here that my in office "Deportation" as my breast surgeon referred to it was quite easy and I've had no issues with it 6 days later. Steri strips have almost fallen off. I'm sure you will have a good experience too.
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Swissmiss / Trina - My MO wanted a follow-up appointment at one month PFC. Because we were leaving the state, we agreed to meet at 3 months PFC. I knew I could call if I had questions (as I mentioned before, she was always on the phone with someone else during my visits, so I wouldn't hesitate to call if I had a question).
I guess I should make a 6 month follow up visit with my surgeon (although I can't recall if he said 6 months or a year).
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Swissmiss - I saw my MO just before my final chemo tx. She indicated she didn't need to see me until after radiation was completed, presumably for tamoxifen script.
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I was seeing my MO with every third infusion. Last week when he said the last cycle of three infusions wasn't needed and I could stop after the next two he said he wanted to see me in a month which would be 1 week Pfc and we would start tamoxifen. He would then see me every 3 months.
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Why did he say the last infusion was not necessary?
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Timbuktu, my original treatment was Taxotere and cytoxan. I only did one round of Taxotere because it gave me chemo induced colitis and neutropenia resulting in a 4 day hospital stay. He then switched me to AC for the remaining 3 rounds and 9-12 x weekly taxol. He is satisfied that the 9 are enough and I would not get any added benefit from the additional 3 or 1 full cycle. So, I have two Tuesdays left in the chair.
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Timbuktu: Wow, glad you got that misunderstanding cleared up & there is no malignancy, but sorry you had to worry all week!
linda505: I'm sending positive vibes that your bone scan is clear.
SharonDe: Thanks! I'm happy to have finished all 6 chemos. Now I just have to get better from this round to close this chapter.
SwissMiss: I think Tamoxifen can start either same time as or after rads are finished. I have a 3 week PFC followup scheduled with my MO for first week of September just to see how I'm doing. It's worth a call to see if you're supposed to have a follow up visit and also to go ahead and schedule your post-rads visit to get on hormone therapy. Your MO could have forgotten to schedule you when you were there for your last chemo. Good luck with your port removal (let us know how it goes) and your mammogram tomorrow!
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So, we had a bit of a fright yesterday. I had my 6th TC chemo on Wednesday. Yesterday, at lunchtime, I made a sandwich and got a drink. I felt lightheaded, was breathing in short shallow breaths, and was sweating profusely as I sat down to the kitchen table. Feeling weak, I put my head down on the table. My husband said I passed out for about 15 seconds. Freaked him out completely since he was holding me and said my eyes were open but I was unresponsive. He yelled to wake me and I finally did. He moved me to the couch where we took my pulse, and it was like 42! Scary!!!
I guzzled some Gatorage and laid down on the couch to rest, where my pulse went back up to the 60s. I think I was dehydrated because I didn't drink anything all morning (I know, stupid me!).
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Hey all - thought I was going to have to wait until next week for results but that were posted on my site that the MO posts my info on and ALL CLEARS - NO METS!!!!!! woo hoo so relieved - thank you all for all your positive thoughts and prayers!!!
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OK mommy, you just made up my mind. That's what can happen with the 6th infusion! Thank God you came back to normal! How frightening!
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Woo Hoo is right Linda! Celebrate!
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Yay, Linda! Great news!
Timbuktu: Thanks. Yep, skip #6! Yikes!
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Celebrate, Linda!!! Great news, and glad you didn't have to wait.
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Great news Linda! Go celebrate!
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Linda, SO happy for you!!! Go celebrate - Yay!! -
Linda - That is wonderful news!
MommyQ - Just reading your scary moment made me. cringe. Rough go.
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Thanks all - so relieved and I got scheduled for my exchange surgery today - will be on Sept 19th!!
MommyQ - scary stuff - hope you are feeling ok now!!
timbuktu - make that decision and don't second guess yourself - you know you are making the best one for you!!
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Brigadoon and Linda: Yes, Saturday was very scary. I think I'm better now, thanks. I'm a bit nervous to be home by myself today though. I just need to be careful, make sure I eat and drink, and take it easy. I'm also keeping the cell phone with me at all times.
Linda: I'm jealous that you get your exchange surgery soon. That's great! I can't wait to get these cannonballs out, and I'm sure you probably feel the same way.
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Mommy, have you talked to your dr about what happened? I couldn't sleep last night so I was doing some research. One article said that 16% have that reaction to the sixth carboplatan infusion. And it can happen up to 3 days out. I'm wondering if antihistamines or some other med could help?
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Hey ladies!! Wow I hadn't realized how long ive been away from here, congrats to all those who wrapped up chemo, and good luck to those wrapping up soon! My final chemo was 7/24 - had some wicked side effects including my the aweful mouth sores that I battled through each round, but now im feeling tons better and my bilateral is on wed (soooo nervous and anxious yet in a wierd way, excited to get it done!). And ive got stubble on my head woot woot!!!!
Can I ask, for those of you that already had a bilateral, how many days did you spend in hospital and what did you think was the hardest /worst part??? My dr said average is 2-3 days if things all go well, but just curious about everyone's exoerie
Xoxo
Jen
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Timbuktu: I haven't told my MO about what happened Saturday. Should I? Thanks for looking online for possible causes, but actually, the "C" in my "TC" treatment is Cytoxan, not Carboplatan. Sorry for the misunderstanding. I took a Claritin Thursday and Friday around 3pm to aid in minimizing muscle pain from my Thursday Neulasta shot. I think my problem was dehydration.
Jen: Glad to hear you're feeling better post chemo. I was only in the hospital one night after my BMX. The hardest part for me was not being able to lift myself up from bed and lay myself down without help for the first 2 weeks afterwards. It was just painful. Also, the drains were uncomfortable. The surgery scars themselves surprisingly didn't bother me too much. Washing my hair was a pain too. I had hair half way down my back. Trying to keep my chest area dry while washing that much hair was crazy. Plus, I couldn't raise my arms up that high so my husband or my daughter had to do it! So, take a really good shower/bath before you go in for surgery!
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I'm so happy for you, Linda! After all this worry, it's wonderful to see you get good news
Mommyq...oh my goodness, that is scary! Glad you're ok. With all the sweating I do with my constant hot-flashing, I often feel like I'm dehydrated too. Your scare is a good reminder to get more fluids in.
MomMom...I head out in an hour for my "deportation." Love that term! Were you sore after? I'm taking my husband along today, but wondered if driving might be an issue tonight and tomorrow. Three kids have me on "mom taxi" duty every day
Hope you're all having a good day!
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Hey Jen - I had surgery at 3 pm and was out of the hospital by 1 pm the next day. The hardest part of the BMX was the inability to get myself up and out of bed for the first week or so. I spent that time in an electric recliner - I rented it from rent-a-center and it was the best thing that I could have done - it gave me the ability to get up and go to the bathroom without help in the middle of the night. Just remember you can barely use your arms - that is the hard part. Make sure everything that you need to get to is counter height or lower. Think of T-rex - that is your arm movement range. Also hard to open jars, bottle etc as that force is more than you can manage. My pain was very minimal - really very little pain. I had more muscle spasms than pain and my PS gave me valium which I used at night for a number of nights to help with the muscle spasms in my chest. I only took pain pills for two days I think.
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It's really amazing how little pain there is with a mastectomy.
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great news Linda! Congrats!
MommyQ, that is scary! Hydration is so important in our condition. I can tell when I need to drink more.
I have my simulation on 8/25, anyone have that yet? And....drum roll please...I get my port out on 8/29! Yay!!
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Ddkath that's great news! Getting port out has to feel so exciting!
Thanks girls for helping ease my nerves aboutpain level!!! How was evereveryone's experience with anesthesia? I had only ever had twilight (during my port placement!) And was fine with that, but jve been warned anesthesia can cause some bad nauseas and sometimes vomiting when you wake up?!?
My big day is tomorrow and so nervous! I want to believe that after 6 rounds of chemo, this has to be easier, right??!!
Xoxo jen
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In the chair for taxol #11. One more to go in a week then I get to drop the taxol part. I am so excited about next week. I did have to get more magnesium again today but I am almost done.
. Radiation I think is going to be a pill but I will deal with hat one day at a time. -
Has anyone else who finished chemo experienced SEs after the final round that last longer than usual? I am 13 days PFC and I am having serious drippy nose and watery eyes. It's much worse than usual (although usually I take Claritin for about 10 days after chemo). I'm in California now to recuperate at my cabin and the air is very dry here so maybe my head is overcompensating.
Nosey McDripperson
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Why so many Taxols? How are you holding up? Neuropathy?
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Ddkath70: I am the WORST when it comes to staying hydrated. I almost never feel thirsty, so I have to just make myself drink. Yay, you're getting rid of your port! I haven't scheduled mine yet. My simulation is 9/3. I don't know if I should remove the port before rads or after. Are you just doing an in-office port removal or going into the hospital for surgery?
Jen: If you are prone to nausea, let your BS know and he/she will set you up with anti-nausea meds during surgery and afterwards, to make sure you are ok. I did that and I don't remember really suffering from nausea. Best of luck tomorrow!
EverForward: My SEs seem to be about the same for each chemo cycle. But maybe it's totally unrelated to chemo and you're just allergic to something in California that's making your nose and eyes water. Hopefully it gets better. Enjoy your recoop time at the cabin! That sounds nice.
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Swiss Miss, No, I wasn't the least bit sore after the "deportation" and hope you are not either!
Just found out from my MO's office that Taxol had one last parting gift for me. My eyelids were somewhat swollen, went to ophthalmologist and discovered I had infections in both eyes. That was cleared in one week w/steroid eye drops. But then my eyes, especially one of them, are non-stop watering all the time. Clogged tear ducts, which my MO's office can happen post Taxol. My last chemo was July 24. Hopefully it will go away on its own. Anyone else have this issue, and if so, how long did it take to go away?
Thanks!
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Hey Jen,
I had a little nausea after my BMX - gave me something for it and I was fine. But as MommyQ says if you are prone to nausea - then ask for something before surgery and that will help.
In my opinion the BMX was WAY EASIER than chemo. You have the surgery and you get a little better every day - you don't have to have it every three weeks lol -so you are always seeing improvement. You will be fine - you are a super hero!
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Everforward - the herceptin can cause the drippy nose - I get that after each herceptin and sometimes it lasts a long time and sometimes it is only a few days. The advice I got was that alot of the SE's were cumulative and lasted longer with each treatment.
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my eyes and nose are tearing a lot.
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Timbuktu - Do you think your tearing eyes are also clogged tear ducts? When was your last chemo?
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Jamieh, I am in the chair for taxol with one more next week, too. No rads for me but start tamoxifen in September. Exchange to implants October 29. As you say, one step at a time but it sure is nice to see a bigger and brighter light at the end of that tunnel!
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I don't think my tear ducts are clogged. My last infusion was July 21. It's not constant, just as my nose doesn't run constantly, but more than normal.
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Sunshine...best of luck to you tomorrow! I only had mild nausea after anesthesia; it was more like being slightly carsick. No vomiting at all...but your nurse will be able to give you something if you are nauseous.
I had my port removed yesterday
It only took a few minutes in my surgeon's office...I was grateful she could do it there, rather than spending the whole day at the hospital. The only discomfort I had was the lidocaine shots, the rest was smooth sailing It was a relief, and a wonderful milestone to finally reach. I have a few stitches, and the incision is quite sore today, but nothing that keeps me from getting things done.Hope you are all enjoying your day. I'm so happy for those of you nearing the end of chemo...we are all getting the job done
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Hello Ladies!
Congrats to all who have finished up/are finishing up, and best wishes and hugs and prayers to those going on to further treatment. Such a long journey we've traveled already, and still it feels like we have miles to go, doesn't it? Whew.
Ddkath - I think I mentioned this previously, although my memory is NOT what it was, but I have had terrible swelling in my legs and feet. Also in my arms and hands and STOMACH, and a wee bit on my face. Seventeen pounds worth, in fact. My MO tells me this is NORMAL water retention, and it will all disappear in time. Over the past couple of weeks, I have lost 6lbs, so I'm inclined to believe him.
I drink lots of water, and I try to take a walk every day, even just for 10 minutes. The activity seems to help a lot. Linda - HOORAY for a clear scan! So, so SO happy for you!
MommyQ - Congrats on reaching the Finish Line! So, SO scary about the delayed reaction. I will say that I did have my light-headed moments in that first week following the final infusion as well. Some fluids, some sugar, and a nap seemed to set things right, but still, more than a little bit terrifying, right? So glad you're on the mend.
Sunshine - I second what everyone else has said about the mastectomy. Compared to chemo, that's the easy part. I kept having to remind myself NOT to do things. My MIL was staying with us to help out at that time, and she actually LOCKED ME INTO THE RECLINER so I would rest a little. The Tyrant!
I couldn't operate the release mechanism, so I was completely stuck and had no choice but to take a nap. Too funny. Still dealing with some serious muscle pain. My legs ache ALL THE TIME, and my arms aren't far behind. And stairs, AAACK, stairs about kill me. Again, staying active seems to help a little, but WOW, I wish I had known how much I would HURT after chemo. Yesterday I almost got stuck in my shirt because my arms were too sore to cooperate. Oy! Actually, as frustrating as that last part was, it was also pretty hilarious.
Some annoying news: my surgeon seems to have forgotten about me. I had to contact his office to remind him that I'm due for a screening, and SOMEHOW, no one bothered to send in my referral to the plastic surgeon, so I now have a year-long wait from TODAY before I even get a consult. Grrrr. My knitted boob is lovely, but I was kind of hoping to get some information about something more permanent. Ah well, thinking of getting fitted for a silicone friend for the time being.
Enjoy your day Ladies!
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MommyQ, I am waiting until after my simulation to have my port removed because I was told I would have contrast as part of the CAT scan. I have trouble with my veins so I figured what's a few more days.
Jen, my eyes started tearing about 10 days after my last infusion. And I also had some other SEs like mild nausea, but that went away now.
Cold, I hope my retention starts to subside I really think it's causing some of this muscle fatigue. I've been swimming to try to get my energy up, I'm on a water pill now and a trip to the grocery store is like an all out work out for me. I literally have to rest after bringing the packages in and rest again after putting them away. Frustrating and depressing, but like you said we've been pumped full of poison for weeks, it's gonna take some time. I have to allow myself that time, but it's hard.
Sunshine ask for the patch that goes behind your ear for your surgery in addition to whatever else they want to give you for nausea. I had two lumpectomies and I had it both times and was not the wee bit nauseous and I'm very prone.
Yesterday was my official last day of my treatment, the 21st day after last infusion and my balloon wall is done! I feel quite accomplished...Now if only my hair and energy would make an appearance I will be all set.
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How wonderful that all the balloons are gone! And that youhave the kind of husband who would make that for you. I'm always amazed when you guy complain about fatigue shopping, carrying in bundles, walking, working. I do NOTHING! Yesterday i went shopping for a bit with my husband but I waited on the bench
while he went to buy things. Just walking from the car was exhausting, I have to lean on him. Today I went to the library on my own and felt so accomplished! I think you guys don't realize just how much you do.
My last infusion was July 21 and I definitely feel the motivation and energy returning but sooo slowly!
We have to be patient with ourselves!
But what a great photo, of those busted balloons, I feel it's for all of us.
What is hitting me now is fear. I think as long as I was under treatment I felt I was doing what I had to do.
Now I'm not so sure and it's scary to be waiting and seeing what happens next.
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Still in the chair today for taxol #11. My clean photo
And how I really feel about number 11
Just ready for next Tuesday. It's break up day with taxol. Onto my two main men herceptin and perjeta. Only bad part is I have rads simulation on Thursday and I am not mentally handling the tattoos very well. Good thing it that it is in the AN so I will get it done early.
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Timbuktu, the balloons are for all of us! :-) They represent the strength, struggle and perseverance we all had through this Hell.
And don't be too impressed with my grocery store visit. I don't do much either. I work from home so I can literally go days without leaving the house. Lol. I've just recently felt little improvement s that have allowed me to swim a little longer and walk around my house with huffing and puffing. My last treatment was 7/29 and I agree it's coming back slooooo....but it's coming back. Good for you getting to the library!!
Jaimieh, love your pic!
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Hi Cold!
Nice to see you! I have had terrible swelling also. Have been on Lasix, and even had my dosage doubled. Am now also wearing those lovely compression stockings. I initially lost about 8 pounds, but since I've been on Taxol, have gained about 15 pounds! Ack! I have trouble walking because my neuropathy has gotten so bad in my feet, that my toes are numb. It is creeping up the bottom of my feet now. I trip a lot! I'm sure hoping that this goes away. Your MIL sounds like a smart woman! Lol. Hope you can get rid of your knitted boob soon!
Jaimieh,
I'm right behind you. Getting Taxol #11 tomorrow. Can't wait to finish. Love your pic!
Sunshine,
I had the patch behind my ear for my surgery, plus whatever else they put in my IV. It worked well for me and I ALWAYS get nausea! Good luck!
Timbuktu,
I am like you with the fatigue. I can barely drag myself around the grocery store. I have been tempted to use those electric carts, but I NEED to walk more. So I get a regular grocery cart, even if I don't need one, just for something to lean on as I walk through the store.
Ddkath,
Love seeing your ballon wall all finished! Wow! You've come a LONG way! Hopefully, we will get over this awful feeling of fatigue soon. I'm anxiously awaiting some cooler weather so that I can get outside again!
Wishing you all a peaceful night, lilyrose
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Swissmiss: Glad to hear your "deportation" went well.
I hate shots but I guess getting a couple of shots in an office is better than doing the full hospital surgery (no eating, IV, early start, etc). I was wondering how they close up the hole in your vein after they pull out the tube, but I guess it closes on its own because they don't do anything but just pull it out! I watched a video on YouTube last night and was amazed how simple the port removal procedure is.ColdinCanada: Thanks! I'm hopeful for no more scares as I recover from this last chemo infusion! Sorry to hear about your surgeon forgetting to file papers to refer you to the PS. That IS annoying. You'd think they'd do that sort of stuff practically on autopilot. Is the one year wait due to healthcare rules? Or is there a way to shorten that wait time?
Ddkath70: Yeah, that makes sense to keep the port in for the IV they'll run during the CT scan. My RO said that he wouldn't be using contrast dye for my CT. I wonder why your RO is using it and mine isn't. I think I'll just keep mine in just in case he changes his mind...at least until after rads are well underway. I'm impressed you've been working through chemo. I couldn't do it so I've been on short term disability. I got back on Sept 3 on a reduced 25 hour/week work schedule. I hope I can manage! Congrats on being completely done with chemo! That balloon wall was a cool idea. I bet it feels great to have all the balloons popped!
Timbuktu: I agree it's so hard not being able to do things that we used to do without even a thought, but hang in there. Energy will come back! I went to Target yesterday to buy my daughter face cleanser. I was so tired just standing in the aisle, trying to read the labels, I had to squat on the ground, and I even struggled with that! I couldn't wait to get home so I could sit on the couch again! It's funny. Before BC, I almost NEVER sat down on the couch. I'm the type to always be doing something. Now I'm there everyday in the same spot. There's a dent the shape and size of my butt in that spot! As far as being worried about recurrance, I think IF it does come back, we will be able to catch it very early and treat it, simply because we are so much more aware of watching for anything weird AND we're going to be at doctors' offices a lot from now on for follow ups, so they'll be another check point for early detection.
Jamieh: You grew another hand! I thought that wasn't supposed to happen until radiation, LOL! Good photos.
I like your cap, too. Hey, I'd ask your RO if he can do markers instead of a tattoo, if you don't like the idea of a tattoo. My RO actually prefers markers.Well, time to get off my butt and go take a shower before I take my daughter to get her braces off. Have a good day everyone!
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Good Morning All!
Thinking of Sunshine today was she heads into surgery! Sending prayers and hugs and all sorts of happy thoughts!
Ddkath - I LOVE seeing that balloon wall - all used up! I bet it felt SO GOOD to pop the last one. Your hubby is a smart, wonderful man to have done that for you.
Jaimieh - That second photo. It about sums everything up, doesn't it?
MommyQ - The PS wait time is because it takes that long to get in to see him. Unless you're a priority, which I am not. And I understand this - "Disfigured Face After an Accident" should come ahead of "Needs a Fake Boob". But my referral SHOULD have gone in right after my surgery in February, and since it didn't, I've lost 6 months in the queue. Truth be told, I'm not sure I WANT reconstruction - I'm not terribly keen on more surgery - but I feel I can't make any kind of decision until I've explored all my options. And after living with just one boob for 6 months, I can see the convenience of having an implant. At least I wouldn't lean to the left so much.
Regarding the muscle fatigue: I have been told that a Vitamin D deficiency can contribute to muscle and joint pain. My MO ordered me to start taking Vitamin D supplements, as well as Calcium/Magnesium. It's only been a week, so I can't say it's making a huge difference YET, but I am hopeful. I also have a friend who is currently studying Naturopathy, so I'm going to quiz her as well. There has to be SOMETHING we can take that will help these muscles heal. I counted backwards and I've been dealing with constant muscle pain since Round 3. That's about 13 weeks of PAIN, and quite frankly, I've had enough.
I was at the store the other day, needing to look at something on a bottom shelf, and I had to SIT ON THE DIRTY STORE FLOOR because my muscles couldn't hold me in a squatting position. *sigh*. And MommyQ - I have my very own Butt Groove on my couch too.
Found this the other day and thought it would make a lovely t-shirt. Or a wall hanging. Or perhaps a billboard?
Have a great day Ladies!
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My wonderful hospital social worker just called and talked to me for a solid hour. She told me how to contact the dr more easily, how get in touch with the hospital, etc. I highly recommend contacting the social worker if you have any questions or problems!
Beyond this she told me that when treatment is over there is a different process that kicks in. People are often surprised by the fear. It's all part of it and has to be worked through.
The right words at the right time can really help, as we all know on this site.
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jaimieh: i am 4 weeks pfc and 2 days into radiation. The fatigue from chemo went away about 3 weeks afterward. I finished 7-22 and had the rads sim on 7-29 but actually didn't start rads until yesterday 8-19. I got 5 tattoos...2 on each side and one in the middle of my breast bone. They are all about the size of a peroid on a keyboard. The only one that hurt was the one on the breast bone. The others were like you got a scratch maybe. I will not be concerned about the ones on my sides because i have a bunch of freckles so they blend but the one in front I will have removed because it is visible to me.
Best of luck everyone...oh! And LOVED the balloon wall. I remember when that f#cker was full!! Congrats to all of us for getting through all of this!!!!
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I see hair!!! And stubble! Not as excited for the leg stubble, but hair is hair! :-)
Cold, thanks for the tip on the vitamin d, mine is really low and my MO gave me a prescription but I can never remember to take them. I will make sure I do now. I hope it helps the muscle fatigue, I went swimming again today and I'm in pain already. Every muscle aches. I tried to do some stretches but that's a joke, I might as well be made out of wood. I'm the most inflexible person on the planet. Lol.
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Ddkath - congrats on popping all those balloons! And, yay for stubble
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yay for stubble on your head.
. Rads simulation today and no tattoos for me. They decided to do stickers because I was so against more tattoos. I have two on my body and plan on keeping the number at only two (they are circular in shape and match on each side. Lol). So I officially start on Sept 9.
So I am feeling pretty wimpy today but the fact that I have 5 days until the last taxol is pushing me thru. I just want it to be over and start healing from chemo. Some hair would help thing feel better also. It doesn't help that today my taste buds are off and that seems to make me cranky.
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Greetings from lovely Big Bear, California! I arrived in CA 9 days PFC and after a few days with family near LA, I came up to my cabin in Big Bear - my happy place. It's wonderful here, but the high altitude makes even more winded! A gentle stroll along a mostly flat bike path along the lake wore me out and killed my glut muscles. I've been forcing myself to do chores around the house (I planted rose bushes yesterday) but for every 2 minutes of exertion, I have to spend a few more minutes catching my breath.
It's nice to know that I'm not the only one dealing with this. No chores this afternoon, just sitting around watching the birds and chipmunks.
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Jaimieh, I know how you feel regarding taste buds. I got thrush with every treatment and it destroyed my taste buds. Everything tasted like salty swampwater. Gross. Hang in there, your in the home stretch. Things seem to come back very slowly, my last treatment was 7/29 and I'm just now feeling bits of energy, and seeing a little bit of hair. It's amazing how little things like that can give you a lift. I've cried more in the last 3 weeks than I did over the entire course of my treatment. By this point we are just done!
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Jaimieh - glad you worked out the tattoos. I didn't know they could do that.
Everforward - sounds like you are having a good time. I wondered where you would be in California (we lived in Running Springs 1985-1995). It's amazing how nice and peaceful it can be in the mountains.
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You mean that there is life after chemo? Sounds great Ever! Just take it easy. My dr said that for the next 3 months I have to rest and heal. Of course they also say excercize is always good. Go figure!
I spent 3 hours today with an onco nurse with 30 years experience. Amazing. My hospital has a program to help you transition out of treatment. Too much information for me to remember off hand but I do remember her saying that losing just 5 or 10 pounds will lower rate of recurrence. Also, of course, walking a half hour a day. Turns out I have osteoporosis now so it's double the reason to walk. She asked if I take calcium and I said I stopped about a year ago when that study came out saying that calcium pills don't work. She said that was for most people, people with osteo must take it. Hard to keep track!
Enjoy that cabin...we all deserve something great after what we've been through!
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Dkath, i know what you mean. By the end of chemo you feel like a prizefighter down for the count.
My last chemo was July 21 and I do have to say that I feel like a new person. A person with painful neuropathy, insomnia, exhaustion, fears galore, but still better off than I was a few days ago! The body is amazing, it does bounce back!
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ColdinCanada: That's one busy PS you have! Must be a good one. I can understand you wanting to achieve some balance. Haha!
Interesting you mentioned Vitamin D helps reduce muscle aches. My muscles felt constantly sore, as if I had just run a marathon, starting around the middle of my chemo treatment (#3, I think, like you). It had subsided towards the end. This was about the same time the weather got nice and I started driving around in my convertible with the top open, for 15-30 minutes at a time, every couple of days. I wonder if that good ole Vitamin D-generating sunshine did the trick?
Hey, I ALMOST sat on the floor at Target but I really didn't want to, so I suffered in my squatting position until I couldn't take it anymore and had to get up and go!
Glad to hear I'm not the only one who made a butt groove on my couch!
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Jaimieh: My taste buds are off majorly today, too, so I feel your pain. Hubby and I went to Hardee's for dinner tonight, and the burger and fries tasted so bad that I only ate about 1/3 of each. The only positive to my taste buds being wonky for the last week is that I've lost 5 pounds! Unfortunately when the new taste buds grow back, I'll put that weight right back on by eating too much!
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dang MommyQ sorry to hear about your taste buds also. I found your missing 5lbs even without taste buds. Grrrr.
So 4 days until last infusion. Yes. I am counting and one more trip to the Friday hell day. When I started taxol Thursday night into Friday was bad but by Friday night I am better. Now it's just that Fridays stink. They are horrible. My skin hurts, my lip cracks open, heart burn flares up, taste buds are off, I am grumpy and just down right miserable. So I declare next Friday my last Friday in chemo hell. If it wasn't he last one it would be time for a reduction because no one wants to be around me on Friday.
The really stinky part is next Thursday I have to shot a wedding before I hole up to get thru Friday. After all this time all I can think is I got this 7 days isn't anything compared to the 100+ that I have spent feeling off and just not right.
I hope everyone is recovering and those if us pulling up the rear of the group and finishing up taxol are doing okay.
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Fiotballnut how are you doing ??
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Jaimieh: Sorry my 5 pounds found their way over to you. Maybe I can take them back from ya next week.
Hang in there. Only one more bad Friday to go and you'll be DONE!!!I'm recovering from my last chemo that was 9 days ago. Just starting to feel less fatigued today, and I can see my tongue starting to turn from white to pink again, which means taste buds are starting to come back! Next week should be fairly quiet and then I go back to work the week after that, just after Labor Day. By then, I'll have been away from work for FIVE MONTHS! Yikes. Gonna be rough, going back!
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Hey ladies!!! Im here and I did it! My bilateral was done on wed!!! Surgery (incl the te's) was about 7 1/2 hrs, and most of the day is foggy to me! I spent just two nights in the hospital and was happy to come home. I was very pleasantly surprised how much range of motion (without pain) that I had!! I thought I wouldn't be able to use my arms at all! And as long as I take my painkillers on time, then the pain has been mild and manageable. And justlike everyone hhere warned me, the drains are a pain in the !@#$@$! I viewed my bare chest and scars with my hub before each shower, and although hard to look at, the scars didn't scare me? The te's feel funny and when I lay back too far, like I have a sumo wrestler sitting on my chest
And I heard the best words come out of my hubby's mouth when I was coming to in recovery.... my sentinel (and 4surrounding) nodes were clear. Thank you jesus. We cried happy tears for so many reasons at that moment.
Xoxo hugs to all
Jen
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So happy to hear Jen - especially about he nodes!! Also - here is something you to need to hear about healing "Just because you can doesn't mean you should" Remember that most of the nerves in the area where you had the bmx are gone and therefore things that would cause pain during healing don't. So limit your range of motion to a T-rex - don't lift your arms above your head and not more than 5 lbs. You want the inside to heal nicely. Also - eat as much protein as you can -helps with the healing!!
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That's great news, Jen. Last night I had an anxiety-inducing dream about my upcoming BMX, so it helps to hear that you are managing well. I'm sure knowing your nodes were clear makes it easier to rest and recuperate. I hope your recovery continues to go smoothly.
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Linda - thanks for the chuckle! They sent me home with a few short exercises to do at home while I have drains, and then a bunch more to start when drains come out (cant wait!)! Its hard sitting around while my hubs does everything, but im trying to remind myself that I have to rest and relax!
Ever - girl, dont even sweat the bmx. Everyone here assured me that after chemo, this would be a breeze! And by no means would I call it easy , but I was pleasantly surprised how smooth it went, how fab the painkillers work, and how I was able to view my bare chest without sadness, etc! You got this girl - 100%. Hugs!!!
Jen
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Hi All,
I read here a a lot but don't comment much (I'm actually a regular on the May board although it is much slower than this board so i hang out here more).
I wanted to share my experience with pain and the BMX in case anyone wanted the option I was given. I haven't seen anyone mention it yet.. My surgeon inserted a sprinkler-like system under the skin that distributed a lidocaine-like drug over a period of 5 days. It was fantastic! I was trying to avoid the other type of pain meds (because i am a recovering alcoholic/drug user) so the BS and anesthesiologist had a pow wow and decided on this system.
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Jen - very glad your surgery (and results) went well. Best to you for a quick recovery so you can keep up with your adorable kids.
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Jen so glad it went well. Funny I was told to move by my BS that I needed to take it slow and keep moving. My piece of advice is to move you arms while walking. Sounds silly BUT my shoulders hurt from holding my arms in a defensive position and not moving them. I was able to get my full range of motion back but it was a. PAin.
2 days before last chemo I am ready.
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Wendy that's a great system. They called them pain balls in NOLA.
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Wendy I also had the on que pain ball and it was wonderful. It helped the recovery go much smoother.
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hellooooo everyone! Back from a chemo vacation in the beach with the family! Was great to not think about chemo, appointments and the usual fears.
Glad to see you guys have eye issues as well- my eyelids are sticky and soooo dry - vision is all funky- hoping it comes around once chemo over.
Today is my genetics appointment- not expecting much- large amounts of cancer on both sides of family but only one cousin with breast cancer. My father had kidney, lung and larynx and my mother had stomach . We will see. At least my kids will have some info to refer back to down the road.
Body aches? Oh yeah!!! My lower back has joined the party in a big way.
Puffiness? Of course! It's hard to look at photos of me- my face is definitely puffy. Hoping that's one of the first things to go!
Who's still finishing up? Footballnut - you done? Jamieh- last one Friday! Brigadoon- you know we are in your pocket every time you go. My chemo brain won't allow me to remember who else is lined up- please refresh my terrible memory?
I have 2 more to go- Thursday and Tuesday 9/2- I stacked them closely as I want to start the school year chemo free!!! I'm also not counting herceptin and perjeta.
Looking forward- implant exchange mid October. Trying to decide round versus natural shape gummies- really conflicted. I am trying to avoid fat grafting (I have thin skin and would probably need with rounds) as I know they sometimes cause lumps and that would completely freak me out.
Can't wait to join you guys on the other side.
Sandra
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ONE day. This time tomorrow I will be prepping to leave for my last taxol.
I am more ready than you can imagine. I just want to start the healing of my body. I know rads is gonna take a toll BUT the rest of my ody can start. I am still hoping my finger nails stick around. I have 4 that our discolored that I am questioning. My legs feel like they contain led which means my counts are down in the tank. Guess I will know tomorrow.
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I am almost three weeks PFC and I'm hoping these lingering SEs will go away soon. My leg muscles are still so weak that walking makes them burn. I'm so out of shape that getting dressed leaves me out of breath (the high altitude in Big Bear may also contribute to that). My eyes are twitching and watering constantly, more than they did during chemo. My fingernails keep getting darker and tender, but no actual lifting yet. Hair on my legs is growing back in small patches, but no new growth on my head. On the plus side my taste buds have finally calmed down. Maybe when I hit the three week mark and my body realizes there's no more chemo, it will finally start to heal.
I know, I know, patience.
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Sorry to hear of your problems Ever but I have to admit that it's a comfort to know that I'm not the only one.
I'm two weeks after chemo today and I don't feel myself at all. Yesterday my eyesight went blooey!
I thought I might be having a stroke or something. Everything looked like waves on a swimming pool. It only lasted a short while but scared me.
I started excercizing a bit on the advice of my onco nurse. Half an hour a day cuts recurrence in half!
Then there's the benefit for osteoporosis. So I've been trying to stay on my feet, do a little excercycling, etc.
My ankle bursitis went crazy! Swollen, very painful, I am back off of my feet and icing my ankle, which thankfully seems to help.
Then emotionally....need I say more? I'm feeling down. Remembering my parents illness and how I could have and should have done more.
My friends have been wonderful to me. I am grateful for their kindness.
But it makes me remember how, in the past, I was not as thoughtful. Maybe that is the good that comes from this? I will try harder in the future.
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Tomorrow I will be 5 weeks PFC. I am finally feeling better in terms of the chemo brain. The tiredness went away mostly after week 3 or so, but I still have days where I'm more tired than I ever felt before all this began. I also started rads, on number 4 of 33, so that hasn't changed much yet, except the number of times I'm going to the doc office/rads etc. One day last week I had three appointments. Ugh. On a really positive note, I have noticed the hot flashes have started to subside. At least I'm having way fewer of them over the course of this past weekend. And I had my first 3 week dose of Herceptin and really didn't notice much in the way of side effects there. Thankfully!!
Timuktu: hope you're feeling better soon. I've definitely learned a lot from this experience, some good and some not so much.
I have decided I'm done with the wig and hats. I have about 1/4 inch of hair and I'm not covering up anymore. It's too hot and humid and since I'm not at the office, I see no reason to be hot and uncomfortable.
Hope everyone is starting their week off with few SE's!!!
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Jen: Glad to hear your BMX went well and nodes are clear! That's great!
linda505: love the cartoon!
Jaimieh: Woo hoo! Last chemo is almost here!
Sandra: 2 more to go! Yay! Re: the implants, my PS said the natural gummies have a 15 year life span where the rounds only have a 10 year, so I'm going for the gummies. I figure, the less surgeries the better.
Everforward: I think it's going to take a while for our muscles to get strong again. I mean, we HAVE had to let them go for the last 4 months while we rested from chemo. All in time...But, at least the taste buds are back!
Timbuktu: Eyes going blooey sounds scary. Glad you're ok now. Like you, I think I've learned to be more thoughtful of others after going through this. Before, I had no idea what to even say to someone who was diagnosed with cancer.
jhodro: You're braver than me. I still cover up with wigs and hats whenever I go outside, even to check the mail!
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Well, I'm 12 days PFC and the energy and the taste buds are returning, thankfully! I went to the PT today to have her start helping me with the cording. She did some massage and showed me how to do it on my own. I will see her again next week on Friday. Next week I also have my rads simulation Wednesday and my 3 week PFC checkup with my MO Thursday. Oh, and I go back to work next Wednesday. So, next week is going to be a busy week, but going back to work will help life feel more normal, I suppose!
Have a good evening!
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Wow Ladies - it sounds we're all starting to heal. But MAN, are there some bumps in the road or what? Whew!
EverForward - I am now 5 1/2 weeks PFC and the muscles are still sore. But they're slightly better than they were last week, so I count that as progress. My friend, the Naturopath, suggested Glutamine - 1mg 4 times a day. It's an amino acid responsible for tissue repair. I'm off to find some today. I figure it's worth a try - anything to help with the constant pain and weakness in my legs.
jhodro - WAIT! You have 1/4 inch of HAIR??!! I am so super jealous over here! I have baby fuzz. Soft, WHITE baby fuzz. Which FEELS cool when you touch it, but doesn't LOOK like anything but a bald head. Still, I've (mostly) quit covering up too. Too hot, too much work, and I just don't care anymore. *High Fives* on the hair regrowth!
Sandra - I've been noticing my vision is kind of wonky too. I'm told it will go back to normal in time. Once again, it's the whole PATIENCE thing for me. I just want to be normal NOW.
Jaimieh - HOORAY on one left! I'm waving my pompoms and cheering you on! Regarding nails: mine were discolouring too. And then they stopped - so now the TOP of all my nails are browny-yellow, but the new growth at the bottom is completely normal. Hopefully, yours will follow the same path mine did.
Taste buds - at almost 6 weeks PFC, my taste buds are STILL acting up. Pretty much everything still TASTES right, but my taste buds swell and get sore and then eating can hurt just a little. I will say that the "flare-ups" are becoming less and less frequent, which is positive, but every once in a while I have to live on mush for a day. Also I'm finding that my digestive system STILL doesn't get along with certain foods, like spinach (which I LOVE). Everyday is an experiment in the kitchen.
Who knew it would take SO LONG to heal, right?In other (GOOD) news - I have managed to drop 8 of the 17 pounds I gained during chemo. It's amazing how much water the body can hang on to! Just a few more to go and MAYBE I'll be able to fit into my pant before winter.
Take care Ladies!
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I just saw someone on tv mention that soy sauce has glutamine. I bet it's in some other foods too.
I too have what feels like hair on my head but looks like a perfectly bald head!
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so I am now officially one hour past chemo.
. I had to wake up to take the picture. Yes, I slept thru a bunch of today's treatment. 
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7 weeks PFC. Nails are a mess. Ends yellow/brown/black that I was covering with polish, but now they are splitting way back in the quick and tearing off. Not too painful like would normally be thank goodness. Apparently they have previously separated from the base and there appears to be a very thin layer of new nail covering . I also have prominent ridges (1 for each cycle of chemo I had) which makes polish less than smooth. Ahhh...the things I won't miss from this whole experience!
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Yay, Jamieh! I am one hour PFC, too. Got very emotional with the nurses and my sister when we left. Will post more later. Congrats to us all!
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Big Congrats, Jaimieh and mmtagirl!!!! And to anyone else PFC I missed (Cold, jhodro, and more!).
At almost 2 months PFC, I am happy to say I feel pretty much like my old self. Taste buds good, energy almost back, and seem better emotionally. Heartburn is really the only leftover. Oh, and being bald and having a toenail or two hanging on for dear life
It's nice to see most folks checking in - I hope those missing will pop in to say hi. It is understandable that some may want to put the forum out of mind as they get on with life after BC.
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Cold: my hair has started to grow, but what's funny is that it's got a gray stripe down the center, so basically that looks clear. Slightly reverse mohawk from afar. Although, to be honest, from afar, it probably still looks like I'm mostly bald, but I FEEL like I have a lot of hair. So I'm going with that. And even better, I realized today, the hot flashes are definitely SLOWING down. YAY!! And congrats on the weight loss!! That's awesome!! I'm still holding steady at a good 20 pounds to the positive from January. I'm hoping next week when the kids are back in school I can come home after rads in the morning and do something to get rid of some of this bulk!
Huge congrats to all of you finishing. The light at the end of the tunnel is near!!
Mmtagirl: I still am emotional. Twice today I teared up, once at the woman who encouraged me not to put off my mammogram in the first place (my dentist office's receptionist, who is now my good friend and also a survivor) and then when my husband was telling me that someone asked about me. Ugh - these emotions! I can drop a tear like no other!
Today I finished 5 of 33 rads. Progress, that's for sure!
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I went to see The Giver today with my daughter. I was so embarassed! I cried and cried and cried.
It was a great catharsis though and I felt so much better afterward.
My onco nurse finally got back to me and told me I couldn't have the sixth infusion. I give up. I have such pain in my feet that it's probably for the best but I don't see why they took this attitude.
Yesterday a different onco (I have two) explained that because of my osteoporosis I need to have IV infusions of some drug that can cause necrosis of the jaw if I have a problem in my mouth. So I have to wait until all of the chemo is out of me, then I have to go to the dentist and make sure I have no dental problems and then have the infusion. Hmm, I may be repeating myself... But the point is, today I have a toothache! lol How on earth did that happen?
I haven't had a toothache in a long time but now that I'm scared of any dental problems, I have one.
Maybe I'm grinding my teeth from all of the tension!
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congrats Jaimieh and mmtagirl!!!!!! Yay!!!!
Cold, please share your secret to losing the weight. I gained about 11lbs and it's not budging. I have been drinking a ton of water due to ankle swelling , which I thought would help. I swim just about everyday, I walk and jog in place and do leg exercises every day. Now, don't get me wrong this is at a slow pace, it's not P90X up in here. But, I thought I would see something...sheesh.
I'm also part of the peach fuzz/fine baby hair club. I can feel it which makes me happy, but like most of you have said, I still look bald. My eyes have slowed down on watering. The stomach has calmed down a bit and taste buds are back. My muscle fatigue is getting better I don't feel that burning stiffness while walking. All good things.
Jhodro, I hear you on being emotional. I cry at the drop of a hat. I'm kind of a mess. sometimes I'm so frustrated with how slow the healing is going, and I just sob. But, as my husband reminded me, I have to be happy about what I've accomplished so far and that chemo is over!
I had my simulation yesterday and got 6 tattoos!!! WTF! I thought 2 or 3. I also have to hold my breath for 30 seconds, they say it will move my heart out off the way. Did you ever try holding your breath for 30 seconds, it's not easy! And I never smoked! But I'm all for protecting my heart :-).
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the paranoia runs deep- how do we know it's gone? In the absence if scans (only 1 positive node), how can we trust the treatment? Have 2 chemos left- done on Tuesday next week, and I am already a mess. I can't concentrate on anything and the back to school process is hard given the anxiety and chemo brain.
Is anyone else fearing whether what we have been through actually worked? The side effects (poor vision, aches, ringing in ears) make my anxiety worse. I keep thinking- is it mets? Sigh.
Just looking forward to next week. Mentally I am so DONE with being bald, puffy and tired.
Hope you are all well, getting stronger evey day. Please keep checking in, it helps keep me going this last week.
Sandra
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Today I am three weeks PFC. I hope my body realizes that we are done with chemo, so it can start healing in earnest. My MO let me push back my first Herceptin-only infusion so I could enjoy a long vacation in California. I'm celebrating this milestone with a cup of tea from the deck of my cabin.
We all should be very proud of ourselves. And mscaruso, don't be so hard on yourself. Doubt and fear are normal considering what we have faced. The key is to come up with a plan (mammos, MRIs, whatever it takes) so you feel like you are staying in charge of your health.
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I just showed my husband the photo. He said "does she rent it?"
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Ack! Just wrote a big post and went to upload a pic and everything is gone!
I was on vacation for 9 days and am not caught up entirely on the posts. And the break from cancer world was great. I will post more later but I am just leaving for Taxol#11!
Congrats to everyone who finished while I was away
Hope your SEs are all less than they were the day before. I am also regrowing hair.... about 1/4 inch but also lots of white fuzz on my face. The same length! !! So I waxed it. Oh the joys!
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Hey Sandra - I understand your stress and I think we all go through it at different times and for different reasons. I think all we can do is trust that the treatment worked and wait for symptoms to have anything checked out. That is what my MO has said - that he will explore and do tests as deemed appropriate on symptoms. I also know that we have to give our bodies time to heal from the chemo so we know if the issues we are having are SE's or something else. It is scary but you have to go back to prior to BC - if you had a pain or a headache or something we didn't immediately think we were dying - we have to find a place where we can live without constant fear and anxiety. We will get there - we just gotta be patient.
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Timbuktu, The drug is Zometa and is given by infusions twice a year. My MO tells me that studies show it can help guard against bone mets. I assume that because it's a bone strengthening drug it will make the bones stronger and thereby help prevent an easy pathway for mets?? I'll ask more about it when I see her end of September when I'm done with rads. I also had to get an "all clear" from my dentist. I will also get an updated bone density test first week in Sept. My last one was two years ago which slowed some osteopenia - not severe enough to be on any bone meds. My MO will use the bone density results to go to my insurance and see if they will cover it. Evidently, most insurance will cover it for one infusion a year, but many will NOT cover the second infusion. If not, maybe would have to pay for it myself. On another thread, saw that it can be very pricey. The chance of jaw necrosis is about 1% - or so I was told, which is why they want to be sure you have no pending dental issues. -
Sandra, I feel the exact same way. I think we all do. I'm almost 4 weeks PFC and stress out that maybe I needed more. I had my simulation the other day and spent 40 minutes on the CAT scan table and I kept freaking out like they were going to come in and tell me they saw something. Will the anxiety ever stop???
I'm also done with the bald, puffy and tired version of myself. It's hard to look in the mirror, I don't recognize the person staring back at me. I can only pray for the patience I need until things start changing.
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Hi all!
Feeling pretty good right now. I had my last of 12 Taxol today! Got all emotioal when all the onc nurses came over to congratulate me and clapped. It felt SO good to know I don't have to go back next week! I must admit I will miss them. I have three weeks off before starting rads. Just need to get blood work and. CT scan before seeing my MO and RO in three weeks.
I am so happy for all who have finished chemo! I can't wait to start feeling 'normal' again. I'm hoping that my SE's start subsiding soon.
Wishing you all a peaceful week, lilyrose
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Congratulations lilyrose!!! How awesome to be a Chemo Grad!
Ddkath - Regarding weight loss: I found I started losing weight when I STOPPED exercising so much. True story. I found that the more I pushed myself, the more my legs would swell, and the less weight I would lose. SO, I decided to take days off - I walk for a couple of days (some days 10 minutes, some days 40 minutes - whatever I feel up to), then rest for a day. I elevate my feet whenever I'm sitting or laying down, and I drink disgusting amounts of water. I also limit my sodium intake. But the thing that had the most impact was slowing down my work-outs. Who knew, right?
Sandra - I think we all worry that the chemo has failed, that we have completely wasted our time with all the CRAP that we put ourselves through. That little voice in our heads that whispers "what if?" is nasty, and has the potential to cause so much damage to the life we've been fighting for. I tell it to SHUT UP and BACK OFF and LEAVE ME ALONE every morning, before it even speaks. Because I know that if I let it get a foothold, I'll never be free of the fear. Ever.
Here's the thing. Not one of us here expected to hear the words "You have cancer." And now that we have, and we KNOW that it CAN happen to us, we are naturally going to worry that it WILL. Which is perfectly rational. Now, I can't speak for anyone else, but for me? Chemo was the hardest thing I have ever had to do. And the way I see it, I did NOT put myself through 4 months of HELL just so I can live the rest of my life in fear. So I TRY, every day, to NOT worry, to have Faith in God, my doctors, the treatment. Which is, of course, easier said than done. But I'm getting there. Just like all the other lingering side effects, the fear fades a little bit more each day. So HANG IN THERE. And, as always, we have your back.
Oh, and P.S. I am SO OVER being bald. And it is so NOT FAIR that my lashes and brows continue to fall out 6 weeks PFC. I have exactly EIGHT lower lashes left - 3 on one eye and 5 on the other. Yes, I counted. Even worse are my upper lashes - each eye has only HALF remaining. As in, only ONE SIDE of each eyelid has lashes. I look ridiculous. And also hilarious.
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I just started to lose eyebrows and eyelashes, while I am growing hair on my head..... comical or not, but I choose to laugh (today)
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Lily, congratulations on finishing. I was super emotional, too, after my last treatment on Tuesday. I got all teary eyed with my sister and the nurses. Lots of hugging going on. Two days later and I am still emotional, and super tired, much more so than previous weeks. I think I had been pushing through the emotional and physical toll that chemo has on my body and it all surfaced.
Good tips on losing weight, cold. I finally got back on the scale yesterday after 2 weeks of living in denial even though my chemo belly was growing at a very fast rate. Gained over 5 lbs in past two weeks and it is all in my chemopause/menopause belly. It hasn't helped that I haven't exercised much other than a couple of walks the past few weeks. Have been too busy working and getting my daughter off to college so DH and I could become empty nesters. I am so ready to get over the fatigue and get my body strong again!
And the lashes? I quit wearing mascara a few weeks ago when my daughter told me I looked scary with it on. I guess my attempt at trying to strategically place them to hide the gaps wasn't helping nor the fact that there were only a few in the center of my upper lids any way. My brows are completely penciled in and connected by fine white hairs. Boy I thought this was it....no idea that they could fall out weeks PFC!
I am curious when those of you several weeks PFC felt more like your normal self? Specifically, I have an opportunity to travel to Latin America end of September for work. A part of me wants to go and yet another part of me worries it is too soon and will take too much out of me. I asked my onco nurse on Tuesday and she thought my WBC should be back to normal levels soon and I would be ok to go from that perspective. I am so torn. If I go I need to be assured I have to stamina for full days of work followed by business dinners. When I get tired chemo brain hits at the moment. Is 3 weeks PFC enough time to be through that?
Thanks much,Ann
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you guys are the best. It's true, I need to beat back the dementors! In chair for taxol # 11. I will believe it is killing off everything. Tuesday is last chemo, for forever. For forever. I will believe. Love to all of you.
Sandra
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Ddkath - yep, this bald puffy version has got to go!
Lilyrose - congrats! Such respect to those of you who also do the 12 doses of taxol/taxotere.
Cold - great words to live by ( as always - you know what to say)
Clarrn - laughing is good!
Mmtagirl - can only speak for myself, but 6 weeks PFC seemed to be a turning point. Travel would have been tough at 3 weeks - can you possibly go, but participate with a reduced schedule if necessary? We have a trip to Disney planned at the end of September - I'm feeling a little more confident I can make it without a scooter!
And, as others have said, it's easier said than done, but we don't want to be :
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love it! That's me!!!!
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oops, Sandra - I missed you in my rundown. Good luck on finishing up - you are almost there!
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Congrats to all of you who are finished! I have been reading your posts just not participating . I have 2 taxol to go so I will be done 9/18 as long as the neuropathy doesn't get worse. Anyway the reason I am writing is to tell you all what the NP said to me when I was telling her how bad I felt. She said they worry more about people sailing thru treatment. In their minds they wonder if the chemo is doing its job. When you feel horrible the chemo seems more like it's doing it's job of killing cells. Just a thought!
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congrats lilyrose!
Ddkath...I am so with you! I'm six weeks PFC and still feeling puffy...and the bald look just isn't working for me
Cold...as always, you have a way with words that makes me want to say "yes, what she said."
I just did my 16th of 33 radiation treatments. So far so good! I'm still dealing with severe hot flashes though. I finally asked my MO for help, and he prescribed Efexor. I've heard scary things about being on this drug (horrible withdrawals), but I'm desperate. I'm literally drenched with sweat most of everyday, and I can't sleep more than 90 minutes. Is anyone else PFC still experiencing hot flashes like this?
Thinking of you all...wishing you a wonderful day!
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Congrats to those who just finished with chemo! I'm now 2 weeks PFC and actually feel pretty good, although my head still gets sweaty several times a day (localized hot flashes???). I'm nowhere near my condition pre-chemo of course, but I don't expect that for many months yet. Two positives: my taste buds have returned (as have pounds I lost when everything tasted bad) and I have enough energy to walk the dog (albeit at a slower than normal pace, with stops to rest) for 1/2 mile. Yay! I return to work next Wednesday part time (25 hours/week), to allow me time for rads, travel for rads, and some down time for fatigue. We'll see how it goes.
So, apparently, hair loss on the face continues PFC, as several of your posts indicate. I'm experiencing the same thing. 2 weeks ago, I had about 50% of my brows left. Today, I would say I have 30% left. As I apply brow pencil, I see brow hair falling out! My eyelashes have managed to mostly stay put. I think I have maybe 80% of my eyelashes and most of what fell out was on my lower lid. I gave up using mascara a few weeks after I started chemo because I was worried that the application and removal of mascara would make the lashes fall out.
Meanwhile, I have 1/8" white fuzz on my head. It's ALL WHITE! I don't know what I'm going to do if the color doesn't return. I'm not ready for all white hair! I was 30% grey before chemo and had my hair colored every 3 months. But I was recently reading about how bad hair dyes are so I don't know if I want to color it anymore. I suppose I could continue wearing wigs...bleck!
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Not only have my eyebrows been growing, five weeks PFC, but my moustache! Yippee! I just plucked about 10 hairs and I've never been so happy to do so! Wish the hair on my head was growing as well.
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Cold, I love the second paragraph of your posting in particular. I copied it and sent to a friend who finished her treatment and has a feeling of dread rather than optimism. Your thoughts are stated so well and should resonate with all of us post treatment. Love it!
As for SE's during and after chemo. We are all different. Some of us didn't have horrific SE's (I was one of the lucky ones in that regard) but NONE of us are unscathed. Yep, I lost toenails, tastebuds, hair and had a few other SE's that were more pesky than debilitating. Do I think my chemo and now my rads worked are working?? Oh YES, big time. They are working!!! And I am grateful, grateful for all of it.
Take care all. Paula
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saw this on cape cod during my week off- too funny and had to share! What do you think my kids were desperate to do?
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mscaruso- in answer to your question a few days ago, I opted for the anatomical shaped gummy. And I am very happy, it really does look extremely natural. I went with the high profile plus one as I wanted adequate projection for my age. It does not sick out too far and I don't look like I am a porn star
Can't wait to get the TE out of the other side and get my other one in!! -
Cold, as always, your words are spot on. Thank you so much for putting into words what most of us are feeling and reminding me that everything I went through was not for nothing. I too have lost almost all my eyebrows PFC and some lashes. I am so tired of being bald and puffy. Just when I thought I was no longer puffy, I saw a picture of myself that I almost didn't recognize. Okay, good thoughts from here on out.
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I just noticed the white fuzz on my head. the thing is, I also have some rather long hairs. I'm wondering how to handle this? Big problem, right? But just letting it grow in will not result in a normal head of hair.
The hair grows at different rates. Should we shave again?
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Timbuktu - I was wondering the same thing! I have some longer strands and some shorter strands. Should we shave it all down to the same length? I'm just so darn happy to have SOMETHING up there, I'm scared to mess with it!
MommyQ - I had all white hairs on top until about 2 weeks ago. There are now some darker hairs mixed in with the white, except that the darker hairs seem to be mostly located on the SIDES of my head, while the white hairs have taken over the TOP. I am SO going to look like a SKUNK if this continues. And with no eyelashes or eyebrows...well, Halloween should be easy this year. lol!
mmtagirl - At 3 weeks PFC, I, personally, would NOT have felt up to any kind of travelling. I'm at 6 weeks PFC tomorrow and I STILL don't feel like I'm back to "normal". Like SharonDe said - could you go with a reduced schedule? I would hate to see set-backs in your recovery because you did too much. That being said, only you can say how much is too much, right?
SharoneDe - "Anxiety Girl" - love that!
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thanks for the input. I think I am going to postpone the biz travel to Latin until later. It sounded good when I was still on my steroid high but now that I have crashed 3 days Pfc it doesn't sound appealing at all.
I agree with the input And don't want to do anything that might put my exchange surgery in jeopardy in October. I have a few other trips in the states coming up in October that I will use to test myself on first. Thanks everyone!
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Breast turned bright red today
Back on antibiotics, no fever yet, hope it stays away this time! -
So sorry clarrn!!!! This too shall pass!
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Hello all! Haven't been on here for 2 weeks ...life got busy!
I need to read through the last few pages of posts, but don't have a lot of time right now.
Am 3 weeks PFC and head is really clearing. No more muscle or joint pain. I only had slight neuropathy in my finger tips and that is gone.
My head keeps thinking I can do a lot now ... But my body says no :-). Energy is coming back very slowly.
Have peach fuzz on my head!! Hard to see but it is there!
Started radiation yesterday ... Will have 23 whole breast then 7 boosts, for 30 in total. 2 done, 28 more to go :-).
Surgical breast started leaking last week again .. Due to the cellulitis I was told. Was afraid that it would delay radiation, but it stopped and there was no infection that goodness.
Looking forward to reading what everyone has been up to the last two weeks ... Probably will catch up in the next few days!
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just read a bit above - I also have been losing eyelashes and eyebrows! Started really noticing it last week which 2 weeks PFC. Bottom lashes are gone, most of upper lashes gone. Most of eyebrows but still have enough to get by. If they don't grown back as full I will be happy :-)
I had no trouble with the hair loss. I am patiently waiting for the peach fizz to turn to hair, but not impatient about it. However, the eyelashes are a different story! I didn't look like a chemo patient before while wearing my wig, but now with my naked eyes I am impatiently waiting for those :-)
Taste buds are totally back ... Had a tuna sandwich the first day of chemo and haven't had one since. Have now had two in the past week and it tasted normal again :-)
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ColdinCanada: Well, that's good to hear that the hair with color can come in later. A skunk-do would be interesting.
Timbuktu & Cold: I also have some longer hairs mixed in with the 1/4 inch white stubble. I'm not going to shave it. I'm going to leave it alone until it's all long enough to cut into some sort of hairstyle.
Clarrn: Sorry to hear you got an infection. Good you got on antibiotics early.
MakeLemonade: I agree with you. Losing facial hair made me feel more like a chemo patient than losing hair on top of my head! And yay for taste buds coming back! It makes eating much more fun.
Have a great Labor Day weekend!
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I think you're right Mommy, what's to say that the new hair would grow in evenly after it's shaved?
Anyway, it's hard to part with any hair!
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Exactly! There's so little hair, I'd feel bad shaving any of it! So I'll just cover up my stubbles and give my hair a chance to grow.
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I wanted to share a milestone. Yesterday, after 8 weeks PFC, I finally felt good enough to plan an evening activity and drive myself. One of the local towns was having a Festival and were shooting fireworks. I had about a half hour drive there, an hour at the fireworks, and then drive home. Normally this would be no big deal. But for months I haven't had the energy to do anything - even laundry! I guess part of me was also worried energy would never return.
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That's awesome Sharon! Just AWESOME. Thanks for sharing.
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I'm almost 5 weeks PFC and I feel mostly human again! My muscles still ache when I use them or do even mild stretching, but I'm not letting that stop me. I'm not running a marathon anytime soon, but I do feel up to getting out and about more. My attitude has changed for the better as well. Maybe it was my vacation in California, but I'm so much more positive about moving forward. I know I still have months to go before I can feel like this is "over," but I'm bold enough to envision a future where I feel healthy, am able to exercise (and lose 10-15 pounds), and have great new boobs!
All I need is a full head of hair!
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I'm done! I'm done! Clarrn, you are done tomorrow! Ok, when do I start feeling like myself again? Timbuktu, Sharon, cold, ever, mommy, Linda, anyone I've missed, thank you for continuing to come and update us on how it's been going PFC. Anyone hear from footballnut?
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I was 6 weeks PFC yesterday. Still napping almost every day but feeling better when awake! ;-)
I find the mornings are ok, almost normal. Around 1 pm I go downhill fast. Mostly just fatigue.
Congratulations on finishing up now every day in every way things will get better and better.
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Congrats Mscaruso!!!! You did it!
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Congrats, Mscaruso! Like Timbuktu said, every day gets better! I'll be 3 weeks PFC tomorrow and I feel pretty good. I don't need to nap anymore, although I still need to stop to rest several times when I walk the dog around the neighborhood. But it feels good knowing chemo is over!
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Congrats Mscaruso!!! Footballnut is doing good - i think tomorrow is her last taxol. she is very busy planning two fundraising events for breast cancer with her band!! She is a super hero lol. I have my herceptin treatment today #7 - I am now 9 weeks PFC and feeling pretty good - RBC and HGB finally back to normal so the muscles have stopped burning. Stomach is still a little po'd but getting much better and my fuzz is getting more visible Here it is today
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Hello sisters!!!
As you may have noticed, I have been away for
awhile. NOTHING IS WRONG - I AM FINE! I apologize if I have caused
any of you to worry. As you may recall, I am organizing two fundraising
events. The first to be held Saturday Oct 25 in support of the
Trillium Health Partner Foundation - Credit Valley Hospital, Cancer
Services; the second to be held Friday, November 21 in support of the
Canadian Breast Cancer Foundation. For the past several weeks, I have
been devoted to this. Both will be held under the banner name - ROCKING
IT BALD. I have created t-shirts using my hubby’s design, bought the
domain name rockingitbald.com (the site will be up shortly - I have been
working on it for weeks!!), trying to get items for door prizes and
silent auctions, meeting with representatives from the Trillium Health
Partners Foundation, updating my ROCKING IT BALD facebook page and
trying to get volunteers for the events.
On top of this, I have
been rehearsing with my AC/DC tribute band BARE RUMP and classic rock
band LEFTY AND THE GOONS as both will be performing at the events in
addition to the Relay For Life, Friday, Sept 12 in Norval, Ontario.
On
top of this, I participated in a video to share my story sponsored by
Scottie’s in support of the Canadian Breast Cancer Foundation. I have
another video shoot this Friday for the cancer centre at the hospital
where I am being treated - Credit Valley.
In addition to this, I have been trying to go to the gym 4-5 times per week, and have been continuing my treatment.
Needless to say, I’ve been crazy busy so again, do apologize!!
Tomorrow
is my last chemo treatment of taxol. DONE!!!! Can’t wait - I’m too
busy for this! I can’t complain about the side effects. I had 3
treatments in a row then was off for a week, then the last 3. I am
starting to feel some needles and pins in my finger tips and have an odd
ache in my left rib. I’m waiting for swelling due to water retention -
after my first 3 rounds I gained 6 pounds of water. It was awful!!
I’v also had ringing in my right ear for WEEKS but this started off and
on last year. My mom calls it “age”.
lol
I will also get round 4 of herceptin tomorrow which will continue every 3 weeks until the end of June 2015.
If
anyone wants to keep in touch, I would suggest hitting me up on
Facebook if you haven’t already. I’m Angie Sandow and you’ll see a
picture of me in a beanie. I will continue to pop in but for now, I am
soooo busy that I hardly have time to reherase with my bands!!
I
would also appreciate if you would “like” my Rocking It Bald facebook
page. As I mentioned above, my website will be up shortly. In the next
few weeks, I will start volunteering at Wellspring and hope to commence
my volunteering with the Canadian Cancer Society. I hope to use this
and my Rocking It Bald site to network in the hopes of starting a career
in public speaking down the road.I hope that all are well!!!!
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football you ROCK! Congrats on the last one- FOREVER!
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Comgrats, Mscaruso & Footballnut on finishing up!!!
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I did it!!!!! Can't say enough thank you's to you all for sharing this journey with me and giving so much of yourselves when you, too, were going through so much!!!! Off for my benadryl/post chemo nap! Big Hugs!
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CONGRATS CLARRN! was waiting for your post today!
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Congrats to Footballnut and clarrn! Woo hoo!
Wow, Football, you're making me tired just reading about all the stuff you've been doing. Rock on!
Linda: Yay, fuzz!
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Congratulations to you too FBN!!!!
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Congrats Clarn! and Congrats to FBN.
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AND ... Drumroll ... Congrats Clarrn !!!
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good morning all
Well I rang the bell hard and loud yesterday - twice and will do so again once herceptin is done next June!!
Congrats clarrn!!
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congrats clarn and footballnut!!! you both look great!!
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Have you seen this video of a young cancer patient who made a video parody of a rap song based on his chemotherapy called "Bald So Hard"? It's awesome! It manages to capture some of the crappy stuff that happens with chemo, but in a playful, funny way.
https://www.youtube.com/watch?v=BHpz3UEmvQg&feature=youtu.be -
The video is awesome.
Congrats to FBN and Clarrn and anyone else finishing up!! So much closer to moving on for all of us.
I'm on day 12 of 33 of rads...getting there!!
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Sharonde, I was so glad to hear that you were able to capture a little time at the fireworks and that driving felt ok finally. Its just astonishing how much this stuff can take out of us. I have enjoyed your droll sense of humor and very balanced view of things. Enjoy your remaining time in Maine, if you are still here. My best to you.
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Congrats Clarrn, Footballnut and Mscaruso! It's a great feeling knowing you're finished, isn't it?!!!
You guys look great! I'm still waiting for my hair to grow. It's still just peach fuzz...
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clarrn, how did you keep your hair?
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Timbuktu- that's what's growing back. I did lose it all on AC. My last few doses were reduced and it's growing fast I think. Also have to shave legs like before. But eyebrows just fell out last week!
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clarrn- I have hair envy.
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MameMe - I hope you are doing well. I've missed seeing posts from you (and from Brigadoon). We plan to enjoy Maine until January, with a trip back to Florida in 2 weeks to see Mickey Mouse and a follow-up with my oncologist (guess which one I am looking forward to?).
Lilyrose - I'm with you in the peach fuzz club!
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Its so great to hear about the people who are finishing up chemo! Milestones really help me get through the hard stuff. I am now stopping Taxol and starting a different chemo, Xeloda. the Taxol did all it could, and the oncology team thinks this new one will knock things back a bit more. The ponies in all this xxxx are that I will take Xeloda orally twice a day at home, and that it seems to be well tolerated by patients. PLUS, my hair will grow back! It never all fell out with Taxol, but got thin and weird. Its already starting to fill in some, as are my brows and my itty bitty micro lashes. I got really sick a few weeks ago and that threw me off of my BCO time. It was a virus, probably, but laid me up for much of two weeks trying to get over the darned thing. Much better now. I have a few more days of no tx until I start Xeloda, so am enjoying the time like a kid on vacation! Hugs to you all, Mame
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Hello warrior sisters! I haven't been on here in weeks. I'm 6wks out of chemo and three weeks into radiation. I honestly thought I'd be feeling much better at this point. I'm still getting mildly nauseous during the day, and experience a lot of fatigue. The radiation isn't terrible but it's trying in it's own right. I thought I'd magically get back to my active lifestyle after chemo, but have been reminded to slow down and give it time. I am anxious to lose the weight I put on but it will be a little while before that happens. Hoping everyone else here is doing well. Thinking about you all.
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It took a long time for me to recover from CMF. But radiation is exhausting in itself. Hang in there!
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Today I had a few girlfriends over to say goodbye to "the girls" before my BMX on Tuesday. It's been forever since I socialized with more than one friend at a time. It was great. I feel mostly human now I hope everyone is enjoying the weekend with minimal. SEs.
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Well I was supposed to start Rads on Monday but due to a NP that didn't listen I will be delayed some. They are not sure how long but possible a week. I am NOT happy about this but nothing that I could do about it.
As far as feeling better I am getting there. i managed to do a session of T25 today, photograph my son's football game, went to dinner, processed pictures and I am finally getting ready to relax some. You know it sounds like a lot but I honestly felt some what normal for the first time in a long time. I do have neuropathy and some questionable nails but all in all I think I am gonna recover
. I am now preparing for my busiest season of the year all while going thru radiation. Yes, it's gonna be trying but I have to get it done. -
Wow! Way to go Jaimieh
I can't wait to do T25 again but I am nowhere near that this week. 3km walk for me. I have to remember to be patient. I had chemo 3 days ago but feel terrible and so discouraged. I know that it takes time but I just want to fit my pants again! Little by little we'll all get there Go team April! -
Wow! Way to go Jaimieh
I can't wait to do T25 again but I am nowhere near that this week. 3km walk for me. I have to remember to be patient. I had chemo 3 days ago but feel terrible and so discouraged. I know that it takes time but I just want to fit my pants again! Little by little we'll all get there Go team April! -
clarrn you will get there just some time and you will feel like working our again. I am following the modifier but that is still movement.
Does anyone have any good fingernail solutions. ? I gave one that is lifting and leaking
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What is a NP?
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NP is a nurse practitioner
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Ah! thanks!
Drs make enough errors. I do not like nurses taking on so much responsibility!
The system should have more safeguards, especially if you're giving so much responsibility to nurses.
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I don't mind NP normally but this one spoke to me like I was an idiot. She looked at me and said your recurrence was in you skin. I said no it wasn't you need to look at the pathology report and she just said "oh your right". The she started talking about how the radiation could hit some of my heart and I sit there looking down at my right breast and I finally asked how because my right breast is the one that had cancer. She was talking about radiation to the left one. I left feeling more confident after I spoke with the RO but now I a,d back to feeling less than confident.
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good morning all!
Football has started. Woo hoo! May sound nuts but I had been so looking forward to this since starting chemo April 30. I always knew that when football started chemo would be done!
I have what I consider to be a discomfort on my left side near my lower ribs. It's been off and on for 3 weeks. Feels a bit like a pull - when I lie on it at night I can feel some sort of pressure and then within 15 minutes of waking up it is there. Not a pain. More like a dull ache. Called my nurse today to see of dr might want to see me. I don't think that it's anything serious but just curious why it's there. Hubby suspects a pull or maybe chemo liked that spot. I have a few aches left from taxol but this is the only consistent spot
I have some peach fuzz growing on my head. It started a few weeks into taxol. It's coming in mostly white but I'll take it!! I think I have two eyelashes left on each eye and it seems that my eyebrows continue to fall out but I'm getting good with the pencil!!
:-)
Now for brekkie, gym and practice the geetar!! Rock and roll!
Have a great day all!!
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Good luck Mame on your new treatment. I hope it treats you really well!!
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MameMe - thanks for the update, and wishing you the best with the new treatment.
Longisland - it will get better. Congrats on finishing chemo and soon to finish rads!
Everforward - sending good thoughts for your surgery tomorrow.
Jaimieh - you are certainly getting lots done and keeping active. Good luck getting rads sorted.
Footballnut - you are another who amazes with your activity level. And, nice work with your charity efforts, you're making a difference that will help others.
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Thankyou sharonDe! I'm certainly trying! I was going to hit the gym today but decided to listen to my body as I feel tired. It's a beautiful day so I'm outside reading which is nice to do as well!
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Not so nice outside here today. I woke up to SNOW! !!? Yikes. Hope it melts before I drive to Calgary tomorrow. Brrr.
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Good luck to you Clarrn, driving in tomorrow and in the procedure as a whole. You have been through a lot! FBNut, yay for peach fuzz! And for your sake, football season. The Pats took a big loss yesterday, leaving my husband and others bleak and forlorn. He got over it, but it was hard to kick off the season with that. Hope you can clarify what the feeling near the ribs is. Best of luck.
Thanks to Jhodro and others who have been so supportive! I super appreciate it. Hugs.
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Well, another day another problem... Saturday I got a mosquito bite on my left hand, the mastectomy side.
Last night I started feeling nauseous and noticed that the mosquito bite looked red and inflamed. So, at ll pm I went to the ER. I'm on Clintomyacin. The nausea is gone. i think the skin looks better. But my nerves are shot!
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....and, Everforward, I will be thinking of you tomorrow. A big step and hopefully one that brings some relief.
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clarrn snow? Snow?
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Just got back from my internist. He says I have Lyme Disease and put me on a different antibiotic.
It's been a lot! He said it was lucky i came in. I never used to go to doctors but now I don't hesitate.
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Lyme Disease - oh man, Timbuktu, you can't get a break. But, that's so great that you got in a got a quick diagnosis. Smart thinking on your part to go to the doctor.
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Timbuktu- so glad you went in!!!
Football- yep SNOW!!! My daughter is singing "Do you want to build a snowman?" from Disney's Frozen...lol I hate winter. Not ready for it to start. Thursday is supposed to be like 23C so I am just going to hibernate for 3 days! And I picked myself up a Skinny Pumpkin Spice Latte... made the mistake of looking at the calories!
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Hello Ladies!
Just wanted to pop and and say BEST WISHES to EverForward tomorrow as she says "So Long" to her Girls. I've said it before and I'll say it again: the mastectomy is so much easier than the chemo. You've got this Girl! Thinking and Praying for you tomorrow!
A little something that helped me out: Remember how I complained of some serious MUSCLE PAIN? It just was NOT letting up, so I asked a friend, who is studying to be a Naturopath, what she would recommend. She suggested Glutamine supplements - 1mg, 4 times per day. So I tried it. I took my first dose this past Friday (Sept. 5), and today, just 4 days later, IT'S WORKING. Seriously. Last week I had to brace myself on a wall or table in order to sit in a chair. This afternoon I SAT CROSS-LEGGED ON THE FLOOR. And then? I got back up. ALL BY MYSELF. This is miraculous, Friends. Truly.
In other news, I had my first post-surgery/chemo screening today. And everything is CLEAR. Woo hoo!
Next screening will take place in December. Isn't it amazing how many medical appointments we now have? Whew.Oh, and I will also CONFIRM clarrn's report of SNOW in Southern Alberta. Calgary is now under a Heavy Snowfall Warning. True Story. And I can't even say it's a Shocker. This is kinda the norm here - you just never know when the snow will show up. Keeps things exciting.
Wishing you all a wonderful week Ladies!
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Congratulations Cold on the all clear results. I have to say, that snow looks wonderful, especially with these hot flashes.
Thank you for the tip on the Glutamine. I will be trying this, as my muscles feel as if I just work out, even though I haven't had the energy to do so. Glad you are feeling good. -
Cold, how long after treatment stopped did you get your physical? My Dr. said I should make an appointment for 3 months after, which seems like a long time.
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Cold- What did the screening involve? Tests or symptomatic?
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Thanks, Cold! Congrats on your clear results. Must feel good. My muscle ache is slowly subsiding on its own. But it is taking forever or so it seems.
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thoughts and prayers are with you Ever.
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Internist just called. He says my calcium is high. Has anyone else had this? I looked it up and it says that if your parathyroid is normal (mine is) it can be a sign of mets. I have to see him again in two weeks. He told me to take half of the calcium I am taking.
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Hi All,
Just to clarify: my "screening" was merely a physical one (in hindsight, I probably should have been more clear). I will see my BS every 4 months for the next two years, and then every 6 months after that until the 5 year mark. Basically it involves examining the mastectomy site and my remaining breast (and surrounding areas) for any lumps, bumps, puckering, etc. I get asked a WHOLE SHWACK of questions, and there is an ultrasound machine in the room if I have concerns, or if we discover anything suspicious during the exam. So that was yesterday's screening, and we found absolutely NOTHING of concern.
In December I will go for a full mammogram and ultrasound, and a more thorough exam, UNLESS I have some concerns before then. And THEN, I have a complete physical with my family doctor in January. As to any further screening for mets, I have no idea. I think it might be something my MO will deal with? I haven't even thought to ask.
EverForward & nancybel: I *highly* recommend the Glutamine. I can NOT believe how much it has helped in such a short time. Last night I hopped on the treadmill and actually went for a BRISK WALK, rather than a slow crawl. MIRACULOUS, I'm telling you! I bought the Glutamine at GNC, but I know Costco carries it as well.
timbuktu: Girl, when it rains, it pours, right? Yeesh! Thinking of you and praying for healing.
In other news, Calgary is expecting an all-out BLIZZARD tonight and tomorrow. Blech. But THEN? Next weekend, we're back up to +22C (71F). Ah, Calgary weather. It's never boring.
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Thanks Cold, I was wondering what to expect here for after treatment
I survived the drive to Calgary today with all the craziness of the first snowfall where everyone forgets how to drive. Ack!Timbuktu - you need a break! Sending more prayers your way!
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say NO to snow! We didn't get to enjoy our summer yet, let's hope for a nice autumn.
I bought my glutamine on amazon. Just over $20 if memory serves....lol, right? You are all chemo brained like me so I am not worried if I am off, but, found it was the cheapest I could find in my area!
So happy for everyone finishing up. Two weeks PFC and finally starting to feel better. Think I turned a corner. Even worked out tonight. Every muscle in my body will be sore tomorrow and it will be the BEST feeling!
MO is sending me on a radiation consult. Really? It has always been no rads needed since I had BMX and chemo. He thinks the answer will be no but he is sending me to U of M to be sure. My exchange is scheduled for October. This one came out if the blue for me. One day at a time and patience....we should all be saints after all this!
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mmta - before this March it would have been no to rads for sure, but a large meta analysis came out this year showing benefits for rads for people like us with 1-3 nodes and chemo. The benefit was something like 30% reduction in recurrence rates. So I am in the same boat.
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thanks, Clarn, I had not seen this study. Btw, I am so jealous of your hair, I will look like Einstein if my hair on top keeps it's current trajectory !
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hey Beautiful ladies!!! Sorry I haven't been checking in as much as I should - I miss reading all your posts and love the comradery (sp?) We all share!!!
I'm 7 weeks post final chemo. I've got salt and pepper fuzz on my head (yay!!!!) And can see the start of my eyebrow regrowth!!! My nails sure did go through the enter though- my last round was when they all (all but one actuallt) lifted and came off
I'm happy to report they are slowing growing back but they still look kinda ugly. Booo. Thankfully my excessive eye tearing has stopped!!!!! That was such a pain these last few months!!!!! The twitching seems to have subsided a lot too!!! My energy is coming back (been walking 3 miles a day with my friends in the neighborhood!). So my chemo is over, my BMX is over and I'm healing and feeling better than I imagined I would just 3 wks out from surgery, but tomorrow I have a consult with radiation oncology. Although my MO and SO both feel I will not need rads, they leave the final decision to the rad onc. So I should find out tomorrow if I'll need more treatments. I'm pretty nervous.
As of now I'm scheduled to return to work mon!!! Eeeek. Although I continued to work ft throughout chemo, I've been off for nearly 4 weeks since my BMX so it feels super nerve wracking to head back feeling this "altered"!!!!
Hope you girls are all doing great!!!!! :-)
Xoxo
Jen
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Ever - prayers to you for a speedy recovery
Cold - awesome news! and thanks for your tips. After I got my port out they told me not to swim for 2 weeks!! Do you know what that's like in Arizona - I stare at my pool when it's 103 degrees out! LOL. Anyway, since I stopped, my water retention has dissipated and I feel a little lighter. I will see for sure tomorrow when I see my MO. I don't have a scale in the house.
I will ask about the Glutamine as well - they are particular about the supplements that I'm taking while going through Rads.Clarrn - I have hair envy as well!!! Congrats on finishing chemo!!
Speaking of hair, I'm 6 weeks PFC and I still have fuzz that looks pretty light except for the back. Then I also have darker "sprouts" on the top which never fell out after I shaved my head during chemo. So my hair is all different lengths and colors (although from a far I still look bald), and now it seems that the back and my hair line around my head is growing quicker than the rest. Anyone else in the same situation? Maybe this is the start of the growth - can it hurry up!!!
I started Rads this week, so far pretty uneventful just a pain to get there every day. Luckily I feel a difference in my energy level. That started about a week and half ago. I feel a little more energy every day - so that is definitely encouraging. For awhile there I thought it would never get better. But it does. I'm also getting more hot flashes, joy.
Hope everyone is feeling good and recovering well!
-Dawn
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I keep studying my head and my hair! I actually measured the length last night, l/4 inch. Yet still, as you say, from a distance I look bald. OTH, my eyebrows and lashes are in and that goes a long way to making me look a little more normal. And the facial hair, that's doing the best! Lovely! I tweeze and tweeze and yesterday shaved. Not sure I'm thrilled with that...but I guess it's one step closer to "normal". And yes, the hair in the back seems darker and thicker. I'm 7 weeks pfc.
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Timbuktu - 1/4 inch - I probably have that in the back of my head, my neck (should I shave my neck? it looks kind of weird), and sporadically on the top, but the rest is still "fuzzy". Thanks for letting me know that this is normal! I was starting to think my hair was going wonky! I hope you are feeling good. I actually had Lyme Disease back in 2002, but it was a very bad case. If you do have it, it seems like it was caught early and that is key as it relates to symptoms.
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Lyme disease is in Arizona too? I got on antibiotics a little more than 24 hours after being bitten so I'm hopeful. Have you had any lingering effects? What were you symptoms? A bulls eye rash, right?
Were you nauseous? Wobbly? Fever?
Do you think that rads might effect hair growth?
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Timbuktu, no I'm actually from NJ - lived there my whole life. I've only been in AZ for 4 years. I had Lyme Meningitis with it so I was hospitalized for 10 days and had to have pic line to administer IV antibiotics for 30 days. It was a nightmare and nothing like what you seem to have. I was nauseous, fatigued, couldn't eat, stand, walk, and I had a fever of over 103 that lasted for 5 days which is what ultimately put me in the hospital because I couldn't hold down any medications. No bulls eye, but I did have red rash. The doctor thought it was everything but Lyme, until I demanded a Lyme test. No surprise to me that it was positive since I had every symptom and lived behind a wooded area. I never saw a tick on me.
Hmmm.... rads effecting hair growth? I sure hope not!! it seems that plenty of people have hair growth while going through rads.
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I was weirded out by the radiation and it was so easy compared to the chemo. It went so fast. About 6 minutes. I took a nap every day and slept great at night. About 3 weeks in burn under boob. If you have big, kinda saggy ones, it's inevitable. Made it through, though and she the RO Friday -
What an ordeal Kath! So glad you diagnosed yourself! I did too, because of the strange rash.
Horrifying, what you went through! I never saw the tick either.
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I haven't had internet for several days, so I'm not sure how much I've missed.
Everforward, I hope your surgery went well. You are in my thoughts and prayers.
Timbuktu, unbelievable! You can't catch a break. I'm glad to went to the dr right away! I hope you're feeling better.
Cold, Thanks for the tip on Glutamine. I heard a few others are taking that. I will get some.
Footballnut, What can I say???? You are amazing and inspiring!
Sharon, I hope you are enjoying your time in Maine! I'm still looking at white peach fuzz...I wish it would grow faster!
Hope you are all feeling well, lilyrose
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Hello all you wonderful ladies!Congrats to everyone finishing chemo, thoughts, prayers and hugs to everyone moving on to RADS and BMX's.
Today I still feel very blessed but am so confused.
Just when I was ready to get my pom poms out for finishing my final chemo on 8/18 I got knocked back. I feel as though I got through rounds 1-5 pretty good with all of the tough but expected SE's then round 6 kicked my butt big time. My SE's went through their normal cycle but were more intense for some reason. I thought my arm and legs were just going to fall off on day 5.
This past Friday I went to my PT appointment and was excited about going to get my nails done finally and then off to get my hair trimmed up. (I did not shave my head so I had thin strands) I was feeling great about starting to get reset but started having heavy chills. Well..... got home took my temp and WOW..... it was 101.5 so I called and was told to go to the ER. Temp jumped to 103 in ER and I was having the worse chills of my life. They did blood work, two types of antibotics through my port, chest Xray, CT scan, pee check and everything came back normal except I had a very mild UTI. I was finally released today and they never did find out why I was running a temp. While there my hemoglobin went from 8.1 to 8.7 then down to 7.3 yesterday so, last night they gave me two pints of blood and now I have this huge headache. Yesterday I would have been out of breath just typing this. I do feel a bit better but I am still soooo very tired. Those of you that have received blood, when does feel better stage start? Has anyone heard of or had such and experience? I don't mean to be a winny baby but I just can figure out what has just happened and the idea of getting blood is still a bit freaky.I have not had time to do my normal research so any insight will be greatly appreciated.
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It seems that round 6 is different than the rest. I skipped mine because of the horrible tales.
I have had many second and third thoughts about skipping it but your story confirms the rest.
I don't know why 6 is so horrible. I know there is an allergic reaction in some but yours doesn't sound like that. To me it feels as though we're boxers in the ring and with each round we get weaker. I did not feel as though I could withstand one more round. I'm so sorry you had this happen but from here on in it's going to get better and better and hopefully all of that hell you went through knocked the cancer right out of you.
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Thanks for the kind thoughts and prayers. They must have worked because both my BS and PS (along with what seems like every med student, resident, and intern in the DC area) are pleased with my incisions and flat chest so far. I get to leave the hospital today. Woohoo! Will try to go back to sleep now. More later.
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usually takes a day or two after blood transfusion to start feeling better,but with your haemoglobin being so low,Dr may consider giving another transfusion. When is he doing blood work again? I had three transfusions during chemo. Was nervous the first round,but made me feel so much better I was excited to get the others.
Hang in there. There is no such thing as being a whiney baby. This process is brutal, but does get better!
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EF- Glad that everything is going okay so far. I hope that you get released soon.Blessedme- I had 2 transfusions last time and I felt SOOOO much better afterwards. This time I didn't need any but 2 weeks PFC and I am recovering just a little bit each day.
As for me I FINALLY start radiation on Monday. I say finally because I was supposed to start last week but it was pushed off one week. Now I feel like I am sitting around just waiting. I seem to be able to sleep lately much better than while I was going thru chemo but now I seem to be craving more sleep and want to nap during the day. My nails are still a mess but I think they are all going to stay on even with the blood blister look. Overall I think I am about 1/2 way to the other side and 1/2 to feeling human again.
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Hey girls!! Yesterday had my 1st real fill at the PS - 50cc's in each. No pain and just mild discomfort. The girls are comin' along nicely lol!!! I'm 3 weeks out from my BMX and (boooo) heading back to work on Monday . As much as I've enjoyed being home and able to rest and relax, I am feeling pretty good and it's back to reality! I definitely have mixed emotions.
Happy to report I have salt and pepper fuzz on my head and lashes and brows are showing signs of new growth to hopefully come soon!!!#!
TGIF to my fav cancer warrior friends
Jen
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Sunshine, I will be watching closely how things go for you, especially going back to work. I was discharged from the hospital yesterday and today I unwrapped my dressing myself this morning. I admit it was quite a shock. I could use some reassurance that I'm supposed to look this hideous right after the BMX!
I think the next few days at least will be me sitting in bed with Netflix streaming.
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Everforward - Yes! I had my surgery on a Friday so the PS's fellow (doctor training in a new field) was the one who took off my bandages. And I ugly cried, and couldn't stop for a good 5 minutes! Poor man!
But it will look SO different when you are healed up and filled up. On my direct implant side I've had doctors who thought it was my real boob. Just remember that you aren't done yet, and it will look way better soon!
Gentle side hug!
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I did Netflix too...lol. Watched three seasons of Downton Abbey!!!
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Everforward with each fill it will look better and better. I actually got Boob greed and wanted them much bigger than before...lol... Hang in there they are not completely filled and will look better with time and some more expansion. Your pectoral muscles only allow them to initially fill so much. ((HUGS))
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Hello all!
Sounds like everyone is making progress, yay!!!!! I just finished 17 of 33 rads, so to those of you who are being thrown into that not expecting it - - it's way way way easier than chemo. The actual treatment for me is about 10 minutes, most of which is positioning and measuring. I got 5 micro-tattoos, although some use sticker and sharpies, all but one is not really visible, just the one on my breastbone is visible and I'll want to lose that one after treatment.
The worst part is the anxiety (like before we started chemo) of what it will be like and how it will effect us. The other tedious part is going every day. My girl is red and sensitive, but I've been doing an exercise class and working out every day (still gaining weight, but I'm active, dammit), and as long as I get a quick nap in the afternoon, I'm good. On days I don't exercise, I'm not as in dire need of a nap. I had my first bloodwork this week and I'm low on Hemoglobin - like 9.9, but not too bad, which I guess accounts for the need to sleep. I also have a gel thing that I keep cool in the fridge and can use when it is more sore, like when I'm more active, and that relieves the majority of the discomfort.
I'm 8 weeks post chemo and I've got eyebrows and eyelashes again. And like many of you, about a 1/4 inch of hair that is enough to go wig-free 99% of the time. Although, today, it was pretty chilly here, nothing like snow, but I'm thinking I'll need hats again to stay warm!! I keep getting "nice haircut" from people - thinking that I chose a micro-pixie of my own free will, hahahaahah!
I'm having some major water retention from the Herceptin so today I got a prescription to hopefully resolve that. I wonder if I'll fit back in my old jeans after that - - 20 pounds or so of water, right?!
Happy Friday everyone!!
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Hoping everyone is doing well.
Sounds like some of you are making good progress with hair coming back. Mine seems very slow - 11 weeks and still not quite GI Jane, although I do have at least a hairline shadow now
. I was reading the Hair thread on here earlier today when my husband asked what I was doing. I said, "reading about hair." He responded, "Why?." Hehe - funny guy. Patience ...
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I had my follow-up appointments with both surgeons this morning. Pathology report looks good so my BS said I am officially cancer free! They also removed 2 of the 4 drainage tubes and I removed the two pain tubes yesterday so I feel less like an octopus and more like a human being. I also switched the annoying surgical bra for a more comfortable camisole. I've been on pain meds virtually non-stop since my surgery a week ago; I'm hoping to wean myself off this week but I'm not pushing it. Will decide later when I feel up to going back to work. Both surgeons are pleased with how I look, even though I think I have a long way to go reconstruction-wise. But no sign of infection or dead tissue, so I'll take it. All in all a pretty good day! (No sign of eyebrows yet, but at least my eyelashes have hung on.)
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Sounds like a very positive report, Everforward. Good to hear things are going well.
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Good news all around and what a wonderful expression, "cancer free". Yipppee!
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Jhondro, it was good to read your post because I was thrown a loop last week from my MO. I am headed to U of M next week for a radiation consult. Word on the street since January after my BMX was no need for rads. Didn't start this journey thinking chemo or rads on the table but there you go. I read the link from Clarnn and now am more convinced my next opinion will be rads.
3 weeks PFC tomorrow for me and I feel better every day. Tongue neuropathy persists and still working on fatigue but it is better and I am exercising more and more every day. Hair on head is slowly appearing. Like dandelion fuzz!
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Ever, congrats and glad you are doing better!
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Ever, sounds like great news, glad you're feeling well!
I have a hair question for y'all. I am going on 7 weeks PFC and have all kinds of things going on. The back of my hair is really coming in, like you all say about a 1/4 inch. The sides still have white and the top had "sprouts" they never feel out during chemo, but they are sporadic and in between those there is fuzz. It's kind of a hot mess, anyone else have portions growing more than others? I guess I should maybe shave it a little to be even, but I can't bring myself to cut any of it. Lol.
-dawn
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The back of my head has much more normal hair. I'm 8 weeks pfc today. But my whole head is starting to look hairy.Almost like a crew cut but not thick enough. Eyebrows and lashes doing very well. It's very encouraging and I can't wait to lose the hat forever!
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DdKath70...we are about at the same PFC I have even fuzz/hair all over. See photos on Hair Hair Hair. I've been using Nioxin and taking Biotin. MO wouldn't let me start Biotin until 1 month post chemo. I have my exchange scheduled for Oct 21. My goal is to go back to work topless after that surgery. Did I say I REALLY hate my wig. I have been wearing my running hats everywhere. I just don't care!! I'm tired of the stocking cap all day feeling!!! Also, my scalp is tender where the dumb wig is on it all day!!!
I'm still really achy muscle wise...I hope this goes away...it is driving me crazy. I've been taking the tamoxifen for about a week now. Has anyone had muscle fatigue/achiness with that? Or...am j just trying to do too much too soon?
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It will be two weeks PFC tomorrow but wow am I emotional and exhausted. Tears galore! Has anyone else had this? I wonder if it is my hormones/ovaries trying to kick back in after being in chemopause. I would seriously not get out of bed at all if I didn't have my daughter. Today she went to grandma's again because I just can't be a good mom today. Is it just the post chemo blues? Yuck!
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Clarm- Hello- I have been quietly following this thread but haven't contributed much. My oncologist made a huge point of warning me that it is quite common to go through depression after chemo is done. Has something to do with the "fight or flight" syndrome. We have been putting a whole lot of energy into making appointments, researching options, infusions, etc. etc. and all of a sudden it slows down. She also pointed out that we aren't going to get the level of support from others at this juncture. I thought it was kind of pointless to tell me this since I have not been "down" much and have been pretty perky. HA! ....... At day 10 of my radiation, I sat on the table and cried and cried. The four technicians were wonderful but they couldn't continue with the treatment until I calmed down because I was so upset....I had just HAD ENOUGH of this shit. I had lost my eyebrows and lashes six weeks after PFC (very rude) and I was gaining weight. Hair wasn't doing anything much either. Turns out that the head tech just finished chemo two weeks prior herself and really understood. I've felt better since "losing it", but have occasional blahs on and off. Meanwhile, hair is better and growing the at about the same rate you ladies are describing in this thread. Lashes and brows are back, and I have lost a couple of pounds. I have a pretty significant radiation burn, but it is nothing compared to the chemo and I am getting a huge bunch of energy and ambition back. I hope you are feeling better soon. I totally understand. Thanks for letting me share, and I'm sorry this is so long-winded.
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I don't know the cause but I definitely have what you have. I WISH I could cry, it would be a release! But I constantly feel like crying. I am in a lot of pain and can't walk much because of tendonitis. I just finished the last antibiotic for my Lyme disease. I have nightmares and just this sense of dread that I can't shake.
I don't want to be around people too much because all I do is complain and I'm sick of hearing it myself.
Thursday i'm flying to New York for a post op with my surgeon at Sloan. I'm am on the verge of panic about it.
I can't imagine walking through the airport. I'm petrified he may find something. My nerves are totally frayed and I've run out of courage. An occasional xanax helps if I feel I'm really losing it.
It's hard to explain this to anyone, not that it makes a difference. It's just this feeling that the well has run dry.
But I have to find more courage...what other choice is there?
Possible causes? NO estrogen. Antibiotics. Chemo misery. AI's. Inactivity. Boredom. Fatigue that is so debilitating that there is no motivation to DO anything. Any other ideas?
Rosebud, your post came after mine and I just read it. Yes, no hair! lol I study my head every day trying to see more hair than there is. I hate the bald head. OTH, it's objective evidence of what is going on inside.
No denying the trauma when I look at that bald head!
Wish someone had warned me about the depression. Thanks for posting.
Why do we think we are supposed to be happy go lucky at this point? lol
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Thanks rosebud and Timbuktu. I wish you weren't feeling the same but also glad to be understood. It helps some. Hugs and kleenex and maybe a great nap for us all.
And a walk tonight. I know that I need to get out of my house.
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Life is always better...out of the house!
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It does seem like many of us are going through similar feelings. Timbuktu - I hear you on your concerns about your check-up. I fly out on Saturday and will have my first check-up since chemo ended. Not expecting anything odd, but our minds just go strange places.
I think the hair issue is symbolic - losing it was one of the early signs of what we were going through. I just keep telling myself I am lucky it is growing back, but it sure seems to be taking forever and a day to fill in.
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Sharon, where are you flying? I'm not a good flier and I'm feeling lousy and I just can't imagine it.
Just got back from physical therapy where I got nauseous and exhausted. I plan on going to New York
alone but it scares me so! I keep telling myself not to be such a baby but when you're sick you do feel kind of helpless and like you need someone to care for you.
I think it's time for a Xanax!
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Timbuktu - it's even harder when you don't like to fly and are going alone, and also when you aren't excited to get to your destination. Wishing you a safe trip - deep breaths and know this is something you need to do.
Flying from Maine to Florida. A week of doctor/dentist/dermatologist visits, then at least I get to go to Disney World. We will fly back to Maine before driving back to Florida in December.
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Timbuktu, great point about the bald head being evidence of what's going on inside. I feel like crying every time I see it. I half joked about covering up the mirrors in the house until it really starts growing. Good luck in NY. Take it slow.
clarrn, I was right there with you for a few weeks after chemo ended. Cried and cried at the drop of a hat. Just feeling weak and helpless, worried, and just overall unhappy with the way I look. Bald and fat. It started to subside around week 4, I still feel that way but I don't break down nearly as much.
Rosebud, I totally feel the same. I'm on my 6th radiation and I get waves of just being sick of being sick. It is cruel and rude to lose your eyebrows and lashes 6 weeks PFC. I just lost one whole side of my bottom lashes. It looks ridiculous, but I still wear mascara. Lol
I have an interview on Thursday, and am nervous. Wondering if they are just going to be distracted by my wig and half lashes. I'm still so bald, seems like mine is going much slower than the rest of you. I'm still looking at white fuzz
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I am glad you all posted about depression. I am having my last DD taxol tomorrow. I feel like I want to cry. I think its because the SE are cumulative and I am dreading the next couple of weeks. I am still in some pain and have numb fingers and feet. Feels like I am walking on balls and my legs feel like dead weights. I already whined on another board and feel guilt about doing it again. I am just exhausted. I tried to work normally and took only treatment day and some 1/2 days off. Looking back that was a mistake, I should have taken more time to rest. So, I am leaving work early today, and am taking at least Monday and Tuesday off next week. Friday I will work for couple hours and thats it!!!! It took me all this time to realize I really needed to take care of myself and not worry so much about work. So, if anyone is lurking out there who is starting chemo soon. TAKE TIME TO REST!!!! Oh and don't be afraid to take any pain meds they give you!
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It's funny - we all seem to be on the same page. I am 8 weeks PFC and 20/33 rads. But I am on an emotional roller coaster. I had an interview yesterday since I quit my job in August and was stressed about whether or not they would think I looked 'off' in my wig with stubs for eyelashes and brows. It went fine and I'm pretty sure it wasn't noticed. I had a day a couple weeks back where I couldn't stop crying all through rads too - they were great about it, but I really never have experienced this much emotion over the smallest things. I did get the end of chemo-pause last week, so maybe that was a contributor as well.
Hugs, ladies, hopefully this too will pass!!!
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Damn chemicals playing games with everyone. I spent Monday getting x-rayed for radiation and then cried during rads the entire time. I am not much of a crier but I had just about had enough of everything. I feel much better as the week is going on but I am just SICK of everything. I want to be well and not deal with all of the cancer crap. I realized a couple weeks ago that I have been bald for at least 1 year out of my 37 years and I am just sick of it. I want to be well and healthy.
As for this week one more radiation treatment and then I will have finished 5 out of 33 treatments. My mold is a mess as they had my head straight when they did it and now during rads I am turned to the side. My appetite has finally slowed down and I am not sure if it is rads or the fact that I started back doing T25 (today was day 3) but I will take whatever is working. I have 10lbs that I would like to go away at least. I am only 5lbs up from my starting point but before that I was up. I am hoping that working out and moving will help keep my weight down and deal with the rads SE's.
My hair is seeming hopeless.
. I know it will be back but it is taking it's good old time coming in. -
So I started exercising a bit more to help with my "mood" hopefully. Now today the radiation tech says I'm not allowed to lose weight while on radiation or it will mess up their measurements. Grr.
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clarrn. I say to heck with them. I am gonna get in a shape beside round while I am doing rads. Exercise makes me feel better and feeling better helps me deal with them. Plus I get checked for alignment twice a week. So they will just have to fix it.
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Feeling very confused - Bilateral Mastectomy is what I have been thinking of doing until my surgeon and oncologist explained - Breast cancer patients with bilateral mastectomy don’t have better survival rates. Do I have this major surgery for what I thought was more peace of mind? Is the surgery that bad? Never have been but I know I will be terrible layed up like this. Would really appreciate thoughts and experience from you brave ladies. Thanks! VeraAnn
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Jaimieh- I agree.. an extra xray or two can't be so terrible for me at this point! Did part of a T25 yesterday
hope to get through more of it today. .. so out of shape and sore! -
Verann. Tell us about your stats. That may help and we can explain why we had the surgery we did.
Clarrn Great job. A little T25 is better than no T25. I am supposed to abs today as I am following my own calendar because of the rads x-rays. I need to space out Total Body circuit so it's not before x-ray day. My arms and shoulders hurt after TBC.
. So 5 rads down 28 more to go. That seems like forever.
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Hello ladies! I really say that loosely because as I said a long time ago, not having a smart phone kinda kept me out of the loop. Now I find myself feeling as though I was shunned from my own group because I did not have the ability to pick up my phone a hit reply. I know in my heart no one meant any harm, but the last time I was here I was called a stalker, and now (just so all of you ladies know) I do not share or even feel welcome. Just wanted all of you to know that just because someone can not be here every minute of the day does not mean they are not hurting or need support. Just go way back in this thread and maybe you will see where once I actually existed in this group. No worries though. I will make it alright without stalking "Your Group" even though we started together. Hope you have fun at your pirate reunion!
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Cold, Clarn, Linda, Swiss Miss we were all here from the beginning together.
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mikishelley~ I remember you and I am sorry that someone said something nasty. I just was hoping you were out feeling great and enjoying life. I hope you are recovering and doing well.
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Mikishelley, I don't post a lot on this thread but sorry someone called you a stalker. Please feel free to post. Imhabe not had the same experience.
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Vera Ann, I remember your posts from awhile back but don't remember your stats. I agree, that would be helpful. Are you done with chemo now? What has been suggested for treatment ?
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Hi Jaimieh, well I have that sneaky one that never showed up on a mam - ILC - 6cm in left breast - a cyst in the right. I think the way to go is by removing both but I am so scared to go through this and to be so layed up. But, I guess we do what we need to do. How bad is it?
Thanks, VeraAnn -
Hi mmtagirl, I am going on my 5th out of 12 weekly taxol - already did the 4 A/C. They are telling me that I don't have to do the right and if I do there is not much difference as far as survival. I have a 6cm in the left breast (shrunk by now of course), ILC - the sneaky one is who got me. After the surgery, they highly recommend radiation which I am not happy with. I was not happy with chemo either but I thank God every day that I have done really well with it. Are you happy with all of your decisions? It's so hard to really know if you are doing the right thing. Oh and that pill that I have to take for 10 years also makes me uneasy. My ONC said only 1% chance of causing something in the uterus. Just don't know. Thanks for your help, VeraAnn
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VeraAnn. I think the anticipation was worse than the pain. I had about 4 days worth of pain and then I was just tight all over my chest. I had immediate reconstruction (expanders placed) with SNB done at the same time. The SNB caused the most discomfort. I had a time with implants as my body didn't like them and finally had a free flap done. If I could do over I would have just gone straight to the free flap.
I think if I had ILC I would really consider doing the double. What little I know about how it doesn't show up in the Mammo (which is the reason I did the double with IDC it never showed up in a mammogram or MRI) and I heard ILC likes to mirror itself (could be a false piece of info) in your other breast.
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mikishelley- I remember you! Sorry you feel unwelcome, and I definitely don't mind people reading along without posting! I think we have quite a few people who have said that's what they do for the most part. Anything that helps someone along is good, and I think there have been times when all of us have been away, or just not posting, or just trying to escape cancer world for awhile. And that's okay. I hope this place will be helpful and healing for everyone, no matter how much they are able to contribute.
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mikishelley, I remember you too! I just figured you were off living life after treatment ended. I'm sorry someone was nasty to you. So uncalled for. I tend to be sporadic about getting on this site...I'm easily distracted by other things.
I hope you are doing well.VeraAnn, I was told my chances were pretty even between double mastectomy and lumpectomy with rads. I chose lumpectomy with reduction. I had my sentinel node biopsy done at the same time. But I am also BRCA neg. We each need to choose what we are most comfortable with. I don't know your stats, but they can help you make an informed choice. I hope you find peace with whichever you choose.
Wishing you all a peaceful evening, lilyrose
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VeraAnn- It is a very personal decision. That being said, I went for the double. I have a huge history of cancers in my family and I still have another 9 months to wait before I get in for genetic testing. So I still don't know if I am gene positive. I also worked on a cancer unit as well as palliative care so my view is skewed because all I saw were the recurrences and new primary cancers in the other breast (so I worry about it more than I should). My breast surgeon said I didn't need the bilateral but my oncologist wrote in his notes that he thought I was very wise to go for the double. I was not a candidate for lumpectomy as 95% of my breast was DCIS. If I ever get to have a second child I will miss breastfeeding and I miss my sexual side of having breasts. But overall I would make the same decision. Pain was an issue for me for about 3-4 weeks and I still have not been able to sleep on my side with the TE.
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Mikishelly - I remember you and glad you got a chance to post and say hi. I hope you are doing well and could care less how often anyone posts - some peeps post alot and some now and then to update or ask a question. I hope you do feel welcome here cause you are!!
Veraann - I had IDC in both breast that were not seen on a mammogram. That is why I did a BMX - I knew I couldn't trust mammos to find it. My BS told me the same - that I had about the same odds or recurrence with a lumpectomy or BMX and she would do either one. I would have most likely had to have radiation with the lumpectomy. I asked her if she was the one with BC in both breasts and ones that seem to hide what would she do and she said BMX - so that is what I did. Recovery and the experience is different for everyone. I stayed out of work for a month because I had some healing issues. I think had I not had those issues I could have done a desk job after two weeks or so. My pain was very minimal - I only took pain meds for two days. The TE's were uncomfortable at times but for me not really painful. The first couple of weeks after the BMX you are very restricted in your movement due to internal healing so you need to have help at times. I was pretty self sufficient by the 2nd week but there were things I couldn't do. When you have made your decision on what you are going to do go to the surgery thread for the month or two before yours and read the experiences and ideas. The March group was what I was in and Sandra was extremely helpful. Also feel free to ask me about anything you are concerned about. I had my exchange surgery yesterday and so happy to have one more part of this journey completed.
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Vera Ann, my experience with BMX recovery was very similar to Linda's and she offers some great advice. I have not had my exchange yet and have been living with the Te's since January 29. Keeping my fingers crossed that implant surgery continues as planned October 29. My onco wants another consult for rads which is next week. Timing will change if treatment plan changes. It really is a year long process to recovery!
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I am 11 days out from my BMX with tissue expanders. I was just complaining on another thread about the TE discomfort, lack of motion, etc and was feeling depressed about having to put up with this for 3-4 months. But seeing how long many of you have been dealing with TEs, I don't know what to think. Does it get better after a while? My God, mmtagirl, you've had your TEs in since January?!
I'm just sick of all this. I was diagnosed in January, had three lumpectomies in a row, followed by months of chemo and it's aftermath, and now BMX and TEs. I'm so sick of being sore, of feeling sick, of being bald, of not being able to exercise properly or do the things I enjoy. And right now I'm sick of not being able to take a shower. And it's funny because two days age I was feeling good and positive about my ability to do this. Today, not so much. Maybe tomorrow I'll feel better again.
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Jaimieh, you are right - I have read this also. This is why I was aiming to do both. Thank you for your input - truly appreciate it. VeraAnn
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linda505, thank you so much for this - it helps me feel more positive! Uggggh, I like many women have gone from A to Z - never having a thing wrong with me to this - so frustrating. But, we will all get through it because we are all strong! I never ever thought that I would be faced with chemo - my worst nightmare - just the word itself scared the hell out of me. I did it and am half way through. I certainly understand what "Day by Day" means now. Thank you again, VeraAnn
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mmtagirl, thank you for your encouraging reply - it definitely helps! VeraAnn
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Everforward - it gets better with time - the TE's were more painful for me early on and got better as time went on. You are really still recovering from major surgery. I didn't have any fills other than what we put in at the surgery for 3 weeks so I think that helped. How much did you have put in your TE's at surgery? Do you still have drains? When do you see your PS next?
Just to give you all some encouragement - had my exchange yesterday and only taking tylenol today and just regular strength. Chest feels tight but not really any pain. Taking the tylenol for my throat from the tube from surgery lol. I haven't looked yet. I can take the ace bandage off today and shower but I think I am going to wait until this evening. I think the shower might relax me a bit - had a hard time sleeping last night - sure it was the after effects of the anesthetic - but my brain was working overtime.
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Again, it's been a bit since I logged on ... busy again! :-) My head space feels normal 6-1/2 weeks PFC, so I can things done. My body, not so much as there is just no stamina. I am on track to get to my event in California next month and the last two weeks have been spent working on the computer for that event. Still another couple of week's work left to do.
Have had 17/30 RADS ... actually it is 17/23 whole breast treatments, then will follow with 7 boosts. Skin is holding up really, really well and am only starting to feel a little tired. Not like chemo where any little thing I did made me needing a nap ... .more like I ran errands all day and need to sit and put my feet up kind of tired.
mikishelley ... I am surprised someone said anything about lurking or was nasty to you! That is too bad ... I don't post that often, or even get a chance to get here that often, but like to know this place is here.
Hair is growing!! Not enough that I would feel comfortable going "out in the world" without head covering, but head is all dark now. Eyelashes and eyebrows coming back! Only lost those 2 weeks PFC, so glad they are reappearing. I also had to shave my legs today for the first time since the beginning of May!! I did NOT miss doing that all summer ... one of the silver linings to all of this ... didn't have to shave and no bad hair days :-)
Good luck to those of you doing the reconstruction ... more power to you! I had a lumpectomy as my cancer was all in one quadrant and my survival rate would have been the same regardless of what surgery I had. However, I have had a recurring seroma and two breast infections. Whereas I once MIGHT have considered having a breast reduction on the non surgical breast (I am liking the new size of the surgical side), now having gone through all of this and it only finally seeming to resolve 2 weeks ago, no way will I ever go through surgery that I don't absolutely have to go through :-) Not brave enough and would worry that something would go wrong with me again. Whereas chemo was NOT fun at all, at least nothing hurt for the most part. Yeah, had bone pain, but it only lasted for 2 days after Taxol treatments. I had pain after surgery and had discomfort during the two infections and then again during the bouts of seeping of liquid.
Time to go and moisturize the radiation field again ... they want me to moisturize 4 times a day and so far, so good!
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Linda, glad to hear you are doing so well after your exchange. You have become my inspiration! I have another appt with both surgeons Monday. I had two of four tubes removed last week and suspect the remaining two will come out later this week. I'm sure that will help; if nothing else, I'll be able to take a shower and that usually makes me feel better. I think I had 50 ccs and 100 ccs put in at the surgery. I've never really responded well to pain meds (Vicodin has no effect on me) so I'm having a hard time with the TE discomfort. I'm taking Valium and hydromorphone. I also have prescription strength ibuprofen.
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Hanf in there, Evwrforward. The TEs do become easier to live with. The first 6 weeks or so are the hardest.
I won't say you will ever like them, but, after awhile you will feel like you are wearing an iron bra or turtle shells 24/7. Not painful, just uncomfortable.
I am learning patience through this journey. I think I may end up with the booby prize for wearing TEs if the docs next week recommend rads after all this time! My PS tells me that the longer you wear them the better the outcome so I keep my spirits up remembering those words.
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Wishing those of you who've recently had surgery a speedy recovery!
Just completed my first post-chemo follow-up with my MO. Just a vitals check, physical check, and questions to see how I was doing on the arimidex. I will have my mammogram in February, which will be a year after diagnosis. I know some have a mammogram or MRI at 6 months, but I'm ok with a year.
I went topless to the onc's office (talking about my head) - I still don't have a lot of hair, but enough to visit the Cancer Center.
Tomorrow is the dermatologist, then the GP to deal with the other after effects of chemo like reflux and high blood sugar.
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Sharon, your schedule sounds like mine. Just got back from internist. Tomorrow is the geneticist. Last Friday was the surgeon, onco and radiologist. Then there's the physical therapist, who has time for her?
I need to see the dentist so that I can get the Zometa shot for my osteoporosis.
Cancer is a full-time job!
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You have a few more on your schedule than I do, Timbuktu. I do see the dentist on Thursday, but won't see the surgeon or radiologist til after the first of the year.
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I had my first fill of the expanders yesterday. Oddly, even though I felt the tightness a couple hours later, I think the fill actually relieved some of my discomfort - like the sensation of someone pinching my armpit.
It's amazing how quickly my mood and attitude can change. Looking back over the past year, a psychologist would probably have a field day with the inner dialogues that I've had with myself since my diagnosis. They kinda went like this:
"This sucks. I don't want to have cancer and I don't want to deal with surgeries and chemo and reconstruction."
"But you're a tough chick and you can do this. You're strong."
"No I'm not."
"Yes you are."
"Just shut up."
"You shut up! You've got this thing licked. You'll come out of this even better and stronger than you were before."
"All I want to do is lay on the couch, binge watch an entire season of The Walking Dead, and eat ice cream all day."
"Fine, you can have your pity party today, but then tomorrow you have to bathe, get dressed, and go outside. Buy something at the farmer's market and make yourself something healthy to eat."
"Ok, fine."
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everforward LOL at the conversation.
I stand in front of the mirror and wonder who that person is then I say "Hey you talking to me?? you talking to ME???"
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Good Morning Ladies! I have been absent from posting, but definitely still "lurking" and trying to keep up with all of you.
mikishelley - I remember you! Just thought (like others) that you were off enjoying your post-treatment days. Sorry someone was rude; maybe they meant "stalker" as something not-so-bad? Sometimes it's really hard to make a joke in text. Still, I'm sorry you were hurt, and I hope you'll still feel welcome to hang out here, even as just a "reader". We don't mind.
timbuktu - "Cancer is a full-time job." - You got that right, Sister.
EverForward - Love that inner dialogue. Totally cracked me up! I can't count the number of times I've had the "No, YOU shut-up!" conversation with myself. Too funny.
VeraAnn - I think I'm in the minority here. I had a unilateral mastectomy on the right side. I had 3.5cm of DCIS and only 0.6mm of IDC (that was HER2+, but that's a whole 'nother story). I was given the choice of lumpectomy versus mastectomy, but NOT a choice of single or double - my BS was in a hurry to get the cancer OUT, and I agreed. I had my surgery just two weeks after diagnosis. Looking back, if I had been given the choice of both (and some time to think about it), I probably would have opted for the double mastectomy. I now spend an awful lot of time looking at my remaining breast, and wondering if there's cancer hiding in there. My 4cm cancerous lump, that you could physically SEE, did NOT show up on the mammogram. So now I worry....Also, since I haven't had any reconstruction, I lean to the left a little.
Well, Friends, I am 9 1/2 weeks PFC and I FINALLY feel like I've reached a turning point. This is SUCH a long healing process, yes? Whew. The Glutamine supplements have helped TREMENDOUSLY - I can now walk long distances and climb stairs and even SIT CROSS-LEGGED on the floor with my kids! My muscles still stiffen up more quickly, and a squatting position isn't quite there yet, but MAN, oh MAN, I feel better than I have in a LONG time.
My eyelashes are coming back. Hallelujah! The bottom ones ALL fell out, and I had about 2 dozen TOTAL left on top, and I totally looked like a chemo patient at 6 weeks post-chemo. And this was NOT FAIR. But then, this past week, I noticed teeny tiny baby lashes growing in! There was some happy dancing going on, I'm telling you! My eyebrows are nearing normal status too - I actually had to pluck a little yesterday. Hooray for the little things!
As for the hair on my head? *sigh* It is a shadow of it's former self. I used to have THICK, curly, BROWN hair. And now I have baby soft, thin, straight, hair that is more grey than brown. I'd say it's about a 1/4inch long already, but you can't really tell because it's SO THIN. Even so? I've been going out topless. Oh YES, I HAVE. And, curiously, it's the WOMEN who stare and make rude-eyes at me, as though they can not believe I would be seen in public that way. The men? Smile and nod. The children? Don't even notice. But the WOMEN, who should be lifting me up and celebrating a VICTORY? They pretty much SUCK. So, I made a Note To Myself: When you see a bald woman who is brave enough to publicly go topless, give her a high five, and tell her she's GORGEOUS.
Speaking of GORGEOUS WOMEN, *High Fives* to ALL of you!
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Hey Cold - good to see you and hear that things on their way up.
Sounds like you and I have the same hair do lol - below is a pic of m with my "growth" on my daughter's 30th birthday last week. I have lashes and my brows really need to be waxed. They came back 2rd only to my CHIN HAIR - which would make me extremely happy if it was on top of my head!! lol, and my leg hair which seems to be in a rapid growth pattern - ughhh.
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Same hair I have at 9 weeks PFC. Hooray for you going out topless. I'm still wearing my hat but, you know it's kind of silly when you think about it because everyone who sees it KNOWS. You can tell I'm bald even with the dorky hat on. So what am I ashamed of?? When I finally am ready to ditch the hat I plan to have a ceremony in which I burn it.
My eyebrows have grown in THICKER than they were before! How weird is that? And yesterday I found a few stray hairs growing out of my skin, BELOW my eyes, on my cheek bone, somewhere they really did not belong. It's as though Now that the follicles are free to grow they are over compensating. Except for on my head! Go figure.
So glad your energy is back Cold. i'm at the point where I know it's not back but I kind of don't want to admit it.
I feel it SHOULD be back by now and feel guilty giving in to fatigue.
It helps to be on here and hear that others are not back to normal either. I look at my friends running around, doing things and I have to admit I am jealous. But I have to remind myself to be glad I'm alive!
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YES! The Rogue Facial Hairs! I've plucked a few out of my cheekbones as well. What the HECK is up with THAT? Geez.
I should clarify. YES, my muscle fatigue has improved a LOT, and YES, I have more energy than I've had in a long time. But I wouldn't say I'm back to 'normal" energy-level-wise. In fact, when I convince myself that I am, it leads to me doing way, WAY more than I should, and then I end up sleeping for four days to recuperate. lol! It is amazing to me how much the chemo tears a body down, and how long it takes to heal. And I SO get the GUILT that shows up when we take that time to heal - it feels like weakness, right? And people around us are all "Oh you're done chemo and all better so you should be able to do this and this and that...", and it just feeds those "I should be all better NOW" feelings we have. Every day I have to remind myself to focus on how far I've already come, and to give myself a break already.
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Speaking of hair... I have exactly two eyebrow lashes over my left eye, but both legs are furry. Seems unnecessarily cruel. And my mad scientist hairdo is coming along nicely.
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12 weeks PFC
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Oh my word, you guys! I am loving this last page of posts, and relating like crazy! Sharon, that is hilarious! Just how I feel. I am almost finished with my first round of a new chemo, Xeloda, two weeks on and one off. I had two weeks between ending Taxol and starting this, which added to some nausea and heartburn for me. Its pretty well worked out now, as I am taking a raft of SE meds with the Xeloda. Since I take all of this stuff orally twice a day at home, I find I am thinking about cancer more than when I had IV chemo. It takes time and attention to get the hang of remembering all the stuff to take, how much, and when. My hair is filling in a bit now, but since the new growth is really super white, my scalp shows through quite a bit. Soon I will color it all, but meanwhile, I have one wig that is comfortable and long enough to wear up with clips. Many people have told me how real it looks. I wear hats for walking and the gym. Maybe by Christmas or so there will be enough hair to style and relax about. Energy: I am so on board with how much this stuff drains us. I can feel quite normal for a day, but if I do normal amounts of things, find that I am mentally and physically slowed down the next day, and have to almost do nothing. I loved reading your entries, Sharonde, EF, CinC, Linda, Timmy, mmta and all you others. Big hugs and big hopes for getting the time we need to go slow in the recovery process.
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Apropos of this discussion, have you seen the new People Magazine cover? Joan Lunden, bald!
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Mama, feel well!
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Just looked it up Timbuktu- she looks great!
Mame- Do you have a smartphone? I had an app called Dosecast You put in your prescriptions and it reminds you what to take and when. I found it helpful. And I like that if you don't take something exactly when if has options for you to record that and adjust if necessary! And yes about the energy... I did a normal amount of stuff yesterday and today I couldn't drag my butt off of the couch!
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She looks great! I wish I was as brave!
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Hello folks. It's been a while since I've posted since I've gone back to work now, although I've still been reading the posts and trying to keep up. I've also been spending more time over on the Fall Rads Board since I'm doing rads now. At 6 weeks PFC, I have soft fuzzy hair about 1/4" long, which is so thin that I still look bald from 2 feet away. It's black on top and white on the sides. I'm gonna be a skunk! Or a reversed skunk, I guess.
My eyelashes continue to fall out and they're almost completely gone on the bottom and about half there on the top. Eyebrows are falling out AND growing in at the same time. Weird. I've mastered penciling in fake brows now, just in time for having to start plucking wayward brow hair that are growing in in the wrong places. And I shaved my legs about a week ago. It was the first time since about 3 weeks into chemo. It was soft, fuzzy, light colored hair, which is weird because it's normally black. Does anyone still have their port in place, like me? I'm waiting until after rads are done to get it taken out. I figure I'd try to do only one thing at a time medically! I think my MO said that I'd have to get it flushed every 3 months if I kept it in. By the time rads are done, I'll be just 2 weeks short of 3 months.
mmtagirl - That's a perfect description of the TEs! You said that it felt like wearing an iron bra, and I thought, "YES! Exactly!" I've had mine in since April and will have them for about 6 months after completion of radiation in October before my PS will do the exchange surgery. So in total, I'll have them in about a year!
EverForward - I too found the TEs got more comfortable after a fill or 2. I think when they were empty, they sat flat and had ridges that poked me in the ribs. Once they filled up a bit, the ridges went away.
It's so nice that everyone is starting to feel better and recovering well from chemo. We had a rough summer, didn't we, but we made it to the other side just fine.
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Good Morning Ladies! And Happy National Coffee Day! How thankful am I that I can celebrate it now. lol!
Hair. I took some photos. APPARENTLY I was mistaken in how much (or rather, how little) I have. It's super thin and soft, but there's lots of it. In the BACK. On top I look like I I have male pattern baldness. Sheesh.
Also there's A LOT of grey in there. So maybe that's why it looks like Grandpa's hair? Here's hoping that one day soon I'll have enough length for a comb-over.
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You are a riot, cold! I called my husband over to compare my head to yours and he said that we're almost identical, Today is 10 weeks PFC for me. I only had the 5 infusions though, We're close to going "topless" eh? A few more weeks?
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Oh Coffee! How glad I am that it tastes right and doesn't make me want to puke anymore
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Cold - Good for You!!! Looks like you're coming back strong.
Mine is filling in a little, but definitely a long ways to go. From earlier today:
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Sharon, Good for you being in Orlando! We fly there soon with our DIL and 5 & 3 year old granddaughters to join our son who will be wrapping up a business trip. It will be such a treat to watch them with the princesses! I love the freedom I now have since I finished daily rads last week. Going to the beach for a few days soon and had a fantastic time on a church retreat in the mountains this past weekend. Freedom. How sweet it is!!Cold, Hair growth looking good! I used to love my morning coffee so much. Taste buds for coffee still off even though last chemo was July 24. Ugh. I'm still trying to love it again though.
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We all look like we go to the same hair dresser LOL. At least we are getting some back!! Mine looks alot like yours Cold - only I think you have a little more length - but we have the same male pattern baldness.
I never lost my enjoyment of coffee - but I still can't eat anything that has a smokey flavor - which is ok cause most of that isn't good for us anyway. Other things still taste a little off or different but not necessary bad.
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Wow, what a boost to see you all with the new growth! I was whining about my hair being slow to grow back, but mostly I just needed to see some comrades who had been thru chemo recently. For us, its normal I guess. Orlando looks mighty nice, Sharon! And CinC, you look grand, all smiles despite the work you did to get thru all this. Go, team, go!
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Happy coffee day! It's nice being able to drink it once more. It tasted so bad during chemo! My hair is about half of what Cold has. But it's nice that it's coming back finally.
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Hi all,
Been awhile since I was on here. Looks like I've missed a lot! I'm envious of the hair growth I'm seeing on you ladies. Mine is still more like peach fuzz...and mostly white! The back is coming in grey. What happened to my brown hair???? Also I have the male pattern baldness thing going on too. The top of my head still shines. Ugh. I need some miracle grow for hair!
I'm 4 weeks PFC and finally starting to feel better. My chemo brain is clearing up some and I actually have some bursts of energy every day! My heart rate has finally gone down to an acceptable level. It was 78 at the dr's this week! I'm also not napping as much. But my neuropathy is still bad. But I can see light at the end of the tunnel. I've only had 3 rads, so hoping to have minimal SE's with those. I'm just wanting to feel like I can do anything I want to again. And I'm working on getting rid of these extra pounds I picked up during chemo.
Wishing you all well, lilyrose
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lilyrose - At 4 weeks PFC my hair was COMPLETELY WHITE too. All you could really see was scalp, and I was more than a little freaked out about it. But over the past 6 weeks, the darker shade is coming in. SLOWLY. Here's hoping the same thing will happen for you.
As for the weight loss, I found mine started when I STOPPED exercising so much. Seriously. Turns out that most of my weight gain was actually WATER, and the more I exercised, the more I would swell. Once I slowed down a bit (1 day of exercise, then 1 or 2 days OFF with my feet up), the pounds started coming off. I've officially lost about 14 pounds of WATER, and still have about 4 pounds to lose. I think these last few pounds are actual WEIGHT, and not so much water, so it's taking longer. But whatever. I can fit back into some of my pants now, so YAY for progress!
Sharon - we're heading to Orlando in December for a post-chemo family celebration. Can't wait! You look FAB, by the way. I was thinking I would be wearing a hat the whole time I'm there, but you have inspired me - Disney will be done Topless.
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Hello all. It's been a while since I've been on here. I too have been busy living life and trying to stop thinking about cancer for a bit. My hair growth is about the same as everyone else's on here. It's coming in but still not fast enough for me.
Glad to hear everyone is doing well. I will be having surgery in Oct. and getting my TE placed. I'm concerned about the pain and being uncomfortable, but also excited to get this part started. -
Nothing PROFOUND, but definitely worth a giggle. Happy Wednesday Ladies!
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Cold - December in Orlando should be perfect. It is hotter, with more humidity and rain than usual in September. We are having fun, just pacing ourselves and staying in while it rains in the afternoon. You'll definitely be ready to go topless - I'd say wear a hat for sun protection, and remove it to cool off.
Lilyrose - You sound better than I was doing at 4 weeks PFC. It will get better. It took me a full two months, and I'm still a bit fatigued.
Nancybel - Good luck with your TE surgery.
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Cold, It is comforting to know that I'm not the only one with white hair. I hope yours gets back to normal color. The weight loss thing is slow. I've only lost seven pounds. I need to lose another ten just to get back to pre chemo weight. But my waist has expanded to a ridiculous size! I need to do a LOT more walking to help that. Glad to hear you are planning a family vacation!
Sharon, You look great 'topless'. So happy that you had a little getaway with your hubby! I hope your fatigue is subsiding. I'm feeling a lot better, but I'm not nearly back to normal. Now that im doing rads, I worry that the fatigue will get worse again. Are you heading back up to Maine? It's so beautiful there in the fall.
Good luck to those of you facing surgery. Wishing you all well, lilyrose
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My weight is not budging! I am getting pretty frustrated but will just keep trying
I didn't get into a cancer patient retreat I applied for
Originally they said you could go as long as you weren't getting chemo, but now they added radiation onto it. I was really counting on it to somehow get my husband and I to actually talk about our feelings about all this, and kickstart the post chemo active lifestyle. He is wonderful but we are a little disconnected at the moment. My parents had even planned to come watch our daughter and hubby got the time off of work. It felt like the one good thing about this cancer business. And now I can't stop crying. I have cried about it more than I did about getting cancer. My poor husband says we should just go away anyway. But we can't really afford it, and we won't get the personalized fitness and meal plans, or beautiful healthy food. I know I had counted my chickens but the organizer had been emailing me tonnes and I felt like a shoe-in. I feel silly that this is affecting me so much. But you beautiful ladies will get it. HUGS! Lol.... and our hot water heater has died so no warm bath to calm me down
Grr... I feel like I should say something happy to balance this out.. I know, I got a foot rub from hubby WITHOUT asking last night. And I could feel 3 toes.... so there is hope that the neuropathy will reverse
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Clarn, I'm so so sorry about the retreat. I understand the disappointment. It was a ray of sun in a sea of clouds and it was taken from you. If you can manage to get away for a night to a nice B&B (always less expensive on a week night), that might help. Stay strong and hope the neuropathy goes away!
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I also have not lost any of the weight I gained since my diagnosis. Even after the BMX (come on, that should have been good for a couple pounds!). To add insult to injury, I still have two drainage tubes/bulbs and hiding them under my tops makes me look *even wider* than I really am. The hair is slowly growing in, but like everyone else, it's just gray and white.
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Hi Ladies! It's been forever since I've been on the board, and it was nice reading through all the posts I've missed. You all look wonderful...and yes, it does appear we all go to the same hairdresser...lol! I was truly hoping I'd be one of those gals with thick and luxurious locks growing in by the first month PFC, but I'm nowhere near going topless at 10 weeks PFC. Patience is a virtue, no? I'm short on that virtue right now, but it helps to see all your beautiful smiles
I completed radiation last week, and seem to be healing well. I'm still so very, very tired all the time. I'm thankful all my kids are in school and I can rest when they aren't home. All the things I usually get done at home is not getting done! I feel like I should be doing more...but a dear friend of mine (who is a ten year BC survivor!) told me I need to stop "should-ing" on my self and give myself a year to recuperate from all this. Sounds like good advice to me
I am still suffering from hot flashes...at least a dozen a day. They are almost debilitating, as I feel like I cannot go out as often as I'd like and I cannot get anything done while I am drenched in sweat. I was prescribed Effexor for relief, but it make me violently ill, so I quit taking it. Then I started taking the supplement black cohosh, which was only mildly effective. However, my MO told me I must stop taking it immediately, as he feels it is not a safe supplement for a breast cancer patient. So...looks like I'm looking forward to winter for the first time in my life...the cool temps have to bring at least a little relief, right?
I was also given a prescription for Tamoxifen. I dread taking it. I haven't filled it yet, as I feel so nervous about the side effects. Even more hotflashes? Hair loss? Ugh...just when I thought the worst was behind me, Tamoxifen takes the worst of it and sentences me to five more years of it. Just doesn't seem fair.
But, I must say that I am happy to have a break from all the appointments. I actually have full days of just being me, with no thoughts of chemo or radiation or driving to appointments. I think once I can go without a hat or scarf, I'll truly feel like me again.
Wishing you all a wonderful day!
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We've been through so much, we have to give ourselves a break. A friend of mine keeps asking me if I have started volunteering again. I felt so guilty! Defensive! I'm just starting to pick up normal, daily activities. I can go to the supermarket, yay! I can go to the library, yay! I just did the dishes and put up dinner, double yay! So what is up with these people? They seem to think that if they see you doing a lot you are OK again. Well, one step at a time. I will volunteer again when it does not feel like an ordeal! Yes, have to get the "shoulds" out of our minds. Everything will get done when we have the strength to do them. When we feel bored and restless because there is some energy in our bodies. Until then, we have to trust our instincts.
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Hello Ladies,
I'm happy to see you all surfacing back to life. A word about hair - You all look like cute little baby chicks with that soft hair. The next stage when it gets longer feels like the 'mad professor' look which was tough to deal with. I ventured into my teenage daughters room during this stage to search for hair products and found one called Not Your Mother's Beach Babe texturizing sea salt spray. Loved it! Put it on while your hair is wet and do some scrunching and if there's any curl or wave in your hair it will bring it out. I liked it because it wasn't greasy or look like I put a bunch of product in my hair and should push you through to the next length when your hair starts to lay down. I bought my own bottle at Walmart. It comes in a blue & white spray bottle.
Timbuktu - Just WOW! Some people just can't seem to comprehend what you just went thru. Tell her you are taking time to heal first but that you are happy she misses you. As a former multi-tasker & volunteer for everything, I make a goal to get at least one thing done everyday and anything else I consider a bonus. The bottom line is you just got your butt kicked. If there was ever a time you get a pass its now.
Be kind to yourselves!
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I was going to type Good Morning Ladies, and then realized it's already afternoon. HA! And I though chemo brain was a thing of the past.
SO, Good afternoon Ladies, and Happy-It's-Almost-The-Weekend!
LovieLovie - THANK YOU for popping in here and offering us your wisdom and support! I know we all appreciate it (and you) tremendously.
clarrn - I am SO SORRY about the retreat. I know how much you were looking forward to it. And it really, really SUCKS that you don't get some away time with your husband. Sending you a big virtual hug.
swissmiss - YES to the hot flashes! Mine are slowly subsiding, but I still get them several times during the day and at night. The night ones are awful - who can sleep when your body is ON FIRE?
timbuktu - Isn't it funny how, once we finish chemo, the support pulls back and everyone assumes that we're back to "normal"? And even WE think we should be, and then we try to do a whole bunch of stuff we're not ready for, and THEN? Then we sleep for a week to recuperate.
I plead guilty to overdoing it every day. After a few days, I wake up to feeling like I did today: EXHAUSTED. I seriously contemplated staying in bed all day. I feel like we constantly have to remind ourselves to take it easy - which is like a foreign concept to most of us, right? If we curl up on the couch with a book, or take a 2-hour nap, or indulge in an afternoon movie, the GUILT starts to seep in, and that little voice in our head whispers "Lazy...". It's like we have to completely re-program the way we think about things. Taking care of ourselves IS okay, and NECESSARY.
In other news, tomorrow I'm going Foob shopping! I haven't decided on reconstruction yet, so this is an external prosthetic I'm looking at, and I am SUPER excited. The knitted one I've been wearing is lovely, but it moves around a lot, so...well, YOU know how that can be a problem.
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cold- are those EYEBROWS I see? If so, lucky you.
We all have the same hairdresser - or should I say barber- soft fuzzy chick hair here about 3/4 inch long, but too thin to go topless. Have been wearing baseball cap to gym.
That's right- the gym! Energy is almost all back. The weight is a long hard road to get off. I gained about 10 lbs during chemo- noticeable on my short frame. Lost 4 lbs since gym started up again, but last few lbs not budging. I'm chalking it up to chemo induced menopause. Grrr
My kingdom for some eyebrows- anyone else still lacking? Eyelashes trying hard- lots of short stubbly ones. But I'm really tired of penciling them in. I am about 4.5 weeks pfc.
Clarrn - I'm so sorry you didn't get that trip. You sure deserve one. I'm pretty sensitive myself- at dinner last night my daughter pointed out I had penciled in angry eyebrows (I'm so bad at the eyebrow thing). I burst into tears because it just captured the whole indignity of this cancer shit. Just have to chalk up some things to having a bad day and move on.
Hope you are all very, very, very well!
Sandra
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Eyebrows? What are those?
At 7 weeks PFC, mine are still mostly penciled in, although I do see some short stubbles coming in slowly. Eyelashes haven't started coming back yet, though! -
hi all,
I am in the same boat as the rest of you. Grey hair but it is getting softer as it fills in. Swiss miss, yes on hot flashes and I hate to be the bearer of bad news but they became daily for me with the tamoxifen. Other than not losing weight, it is my only side effect....silver lining? Eyebrows? What are they? Lashes are still about 1/4 of their pre-chemo luster. I am having brow envy looking at Cold's brows:-)
Decided for the month of October I am showing up to work in my suit and a scarf instead of my wigs on Friday. My little tribute to BC awareness.
It is confirmed I will be joining several of you on the fall rads board. Giving this beast the 1-2-3 punch.
Clarrn, so sorry to hear about your retreat. I understand the need to get away. I am sooooo ready for a retreat away from the house with my DH!
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hello ladies. I just realized that I am 5 weeks and 2 days PFC and I am feeling okay. I am more than half way thru rads (14 out of 26) and hen I will get 7 boost which made me happy to know. Rads is still making me grumpy and having my appointment at 7:15 is making me more tired. In addition to rads I still get herceptin and I have been working like crazy. Getting back to work makes me feel better but wearing the wig is getting very old quickly. I had a friend t,ell me she loved my hair and when I said thanks you can have it to for $300 bucks she thought I got a haircut for $300. It was kinda funny in a way. I still need to come out on Facebook a both my diagnosis. I know that I don't have to but I have decide that I am ready and I think that it would kill any rumors that people have heard.
Now about my hair. Grrrrrrrr I feel fuzzy but no real hair growth yet just a ton of fuzz and more rogue curly hairs all with no color what so ever. My eye lashes and eye brows have left.
. They eyebrows are coming back white also so maybe I am going to have white hair. At this point I don't care it just needs to start growing because I am getting cold. -
Thanks for all the support! I am definitely feeling better because of you all. So grateful that you all just get it and don't make me feel like I'm upset about nothing. I got a email from the retreat organizer and she wants to get together with me to discuss the possibility of having me as the medical part of the board. Lol. I should tell her I will only volunteer if I get to go
But honestly, it is something that I would love to be involved with. My radiation was supposed to start today but my incision opened up again, so I get break until after Thanksgiving
(Oh Canadian, so Oct 14th) I am happy about it as I hope to feel a little bit better and shed some of the weight before then. (But I am eating ice cream as I type this...lol. My hair is growing...little thin at the front but it is an inch long. I feel almost bad about that, but the eyebrows are mostly gone and I am terrible at drawing them on
Glad that slowly but surely we are all making progress. Go team April!
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Hi Ladies, so I met with the plastic surgeon for the first time yesterday. He tried everything to find some fat on my body that he can possibly use to build the breasts but he could not. He recommended direct implants to me. The only problem is I need radiation after surgery and there is a 50/50 chance of the radiation effecting the implant. I don't know what to do but don't think I have much of a choice. Has any one been in this situation? Thank you and I hope every one is feeling well to enjoy a beautiful day! Thank you, VeraAnn
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Have you all filled out that survey about the Breast Cancer Awareness Campaigns? I am so curious about the results but I think only 160ish people have filled it out yet. The mods have posted it on a few threads, but if you search pinktober survey it should come up somewhere.
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funclassygal- I was told the same thing with my local PS but I went to the center for breastrestoration and they were able to do a flap. It's worth checking out.
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Jaimieh - I am also contemplating coming out on FB, especially since it's BC awareness month (what better timing, right?).
VeraAnn - I have tissue expanders (TEs) in place and will have them exchanged for silicone implants about 6 months after rads are done. Would that be an option for you?
I'm attaching a photo of the back of my head, which shows the salt and pepper that's coming in. I'm excited to finally have a little hair, even if it's not much!
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clarrn - I found the survey you spoke of and took it. Here is a direct link to the survey, for those interested:
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mommy- love the hair. I think your salt will soon be all pepper.
. Clarrn- I hope you incision heals soon.
. Did I mention TGIF
. no rads for 3 days thanks to an upgrade that is being done at the radiation office. 15 down and praying my skin continues to hold up. -
MommyQ - another person that goes to the same stylist as me. Last night I was getting ready to go out for dinner and noticed that I actually have a little hair that is lapping over the top of my ears - guess I need a trim LOL
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Thank You Jaimieh!
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Hi MommyQ, well he doesn't seem to think I am a candidate for expanders and he doesn't love them either. So confused! I have some time to think about it but I just want to make the right decision. Would hate to see the radiation mess up the implant but I understand this is a 50/50 chance that I would have to take.
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My eyebrows are growing back! After this week I think I can stop drawing them on.
I have another TE fill appointment with my plastic surgeon this afternoon. My drainage is still virtually the same as it was when I came home from the hospital almost four weeks ago. If she says, "Let's wait one more week" I think I might throw something. Anyone have any experience/advice about post-BMX drainage that doesn't decrease? It doesn't seem to matter if I sit on the couch all day or if I go to work or do errands. Each of the two drains still produces 50-60 ml of fluid every 24 hours.
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Progress, EverForward! My eyebrows are still falling out. Drains 4 weeks post BMX is a bit unusual but you have not been a usual case thus far. Wish I had some words of wisdom for you. Just know that if the doctor was really concerned you would be on a different path. Hang in there!
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Hey ladies !
So far so good! I'm 6 weeks post surgery and am doing and feeling pretty good! I've had 4 fills already I'm each te (I have 325cc in each te!) And am pleasantly surprised how nice the girls are looking? Maybe I'm just so used to seeing the scars that they don't look scary anymore?
Still having herceptin every 3 weeks, and even though it's not really chemo again, it's still very odd when I'm back at the infusion center in the chair! But 30 mins and no more benadryl so it's quick!
My port is still annoying as ever, always uncomfortable and the skin around it and my port scar is always red and irritated. Has been for months - no matter what lotion or cream I try.
My hair is really coming in - just about a GI Jane, but a few spots where it's still scalp but I think will be more even soon. I'm 11 weeks post final chemo so I feel like the growth is finally gaining some momentum! My brows are actually great, they began growing back the quickest, but lashes are taking their sweet Ole time growing back. So strange!!
Hope you are all doing and feeling great!!!! Amazing we've all been connected since this thread started in April - it's been one heck of a year ladies.
Ever forward - hope you get those drains out!!!!! After mine came out, things got soooooo much easier!!!!
Mommyq- your hair looks great!!! Very even !!!
Xoxo
Jen
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Update: Did another fill yesterday and the PA (I assume that stands for physician's assistant) said she'd take out the drains Thursday regardless. But I'm to revert to T Rex mode (not moving my arms very much) until then.
Glad to see we're all moving forward. Maybe not as quickly or as smoothly as we'd like, but we're a lot farther along the path now than we were back in April.
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Everforward- glad you very those drains out soon!! And yes, April does seem like forever ago.
Who knew we were all so strong? Hope everyone can enjoy some beautiful fall weather today!
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ever forward - good news for thurs!!! You'll feel tons better when they come out!
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Happy to read those of you who've had recent surgeries seem to be doing well.
I can report I've now lost 7 of 10 toenails. It wasn't messy, the old ones just popped off when new ones started growing - weird.
Hair growth was so slow for the first 12 weeks, but picked up momentum recently. I asked for some help for all of us:
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Sharon, your recent posts just make me smile. Thank you!
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Hey ladies - any of you that are doing just the herceptin for 1yr now that regular chemo is over experiencing joint/muscle pain in hips and legs? I'm just now noticing it now that all the other Se from chemo have ceased (I think the joint and muscle pain was there all along but I was more focused on the nasty se's I was dealing with during chemo). Just curious! I read it can be a Se from herceptin and was hoping it wasn't just me!
Xoxo
Jen
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Sunshine, I've had two H-only infusions and haven't noticed any SEs. In fact, I'm so happy that my muscles finally feel better and I can walk up stairs without feeling like I just climbed Everest.
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ever - I never had much muscle pain during chemo so maybe my body is ma king up for lost times lol. Figures!
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sunshine- I first noticed hip pain with taxol/herceptin. More on one side than the other. Most of the taxol aches have gone, but hip and leg aches still here. Legs feel mostly heavy and tired, but hips are achey. I'm retaining a little water, too, I think. I report everything to onc- if she is concerned she has not said anything to me! I figured it was taxol- but it makes more sense that it's a se of herceptin!
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Sharon- I love your spirit! Lol!
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MommyQ - Your hair is looking great! Mine is mostly white.
Sharon - That photo is hilarious! You have the best sense of humor! And your hair is looking good! You have more than me. But I just realized this morning that I am starting to grow eyebrows. Yippee! Still no eyelashes though.
Had my port flushed this morning. Then had rad #10. My skin is really turning pink. I'm hoping the emu oil will keep me from burning. Feeling a little better every day. I'm now 6 weeks PFC.!
Wishing you all the best!
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Sharon...love your photo! I think I need a little Disney myself
Have any of you experienced hair growth on your face? I have longish peach fuzz all over my cheeks and chin...I totally look like my teenage son! Will this go away on its own, or will I need to start some sort of removal process? I am afraid to wax or pluck, as I don't want to make the hair come back dark...why or why is this happening? I guess it's not bad enough that my hair stopped growing at half an inch, now I feel like I have more hair on my face than on top of my head
I started Tamoxifen yesterday...I actually had the bottle sitting on the counter for a week before I psyched myself up enough to take the first dose. Why is this medicine so scary? I've read on message boards it causes even more hot flashes and hair loss...ugh. Anyhow, I decided being bald is better than recurrence, so I'm giving it a try. Anyone else on Tamoxifen now?
Glad to keep up with you all, even six months after we started chemo...wishing you all well!
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I have facial hair growing in all the strangest ways. Under my eye, for instance. I think my body just got confused. It's trying to make up for lost time and doesn't know what it's doing. So I pluck. I don't think that will make the hair come in stronger. If anything it might stop it from growing. Before all of this I overplucked
my eyebrows and they became thinner. Now they are back, fiercer, thicker, longer than ever.
No hair on my legs yet, which is nice.
The hair on my head...a little over half an inch and it's just sort of starting to look like a crew cut.
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Jen~ This is my second time on Herceptin and it does cause joint pain. Not everyone experiences it but I noticed in the last week that I am getting it again
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I waxed mine, and it did not come back dark
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Trina - had very mild pale facial hairs very early PFC - waxed them and nothing since! Lilyrose - hang in there! Rads over soon. Everforward - I LOATHE drains. I feel you!
Funclassygal - any particular reason why you are not candidate for expanders? The radiation? It seems so many of us on BCO have done this. In the end they decided not to do radiation on me, but originally I was headed for reconstruction first, then rads.
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Hair progress update - I think I am developing a faux hawk - hair on top growing faster and straight up LOL
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Here is a link to an absolutely perfect article on a breast cancer survivor's take on Breast Cancer Awareness Month:
I survived breast cancer, but I hate Breast Cancer Awareness month
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Faux hawk! Perfect! Me too. Straight up, like a baby orangutan.
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Me too!
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Everforward, Thanks for the link. Great article!
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It's Canadian Thanksgiving weekend and I needed to thank you all. Thrown together by something terrible, we have become friends and confidants, sharing the ups and downs of chemo. I honestly wouldn't have made it through the hardest days without you and my keyboard is getting a shower just thinking how grateful I am to have found this place. Some selfish part of me wants to keep you all forever, but I know that we will all move on (maybe posting occasionally) with our lives. We can't be stuck here forever, and I am ecstatic that we are feeling well enough to get out again, but I won't forget what you meant to me. So thank you!
I am not saying goodbye though
And PS..., another thing to be thankful for today. Remember that I cried for 3 days about not getting into that retreat that I was sure would practically fix my whole life? Well I got a phone call from the organizer. Someone backed out and now I get to go!! I have to keep the fact that I am in rads on the DL. So excited
I guess if things are supposed to happen they do. And either way lesson learned, no more 3 day pity parties allowed. For now -
Clarrn - that is wonderful news about the retreat! I hope you enjoy it.
Linda - faux Mohawk is the perfect description. It took my hair a long time to start growing back, but after 3 months, it's starting to kick in.
Glad some of you enjoyed my Let it Grow photo. I do use humor to show how I'm feeling, but I also know how serious this whole experience is for all of us. The trip to Disney did a world of good for me - physically I was motivated to walk a lot more. I felt better at the end of the week than the beginning - this really improved my mental outlook as well.
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Clarrn, that is a beautiful post and I share your feelings. And what a perfect ending. No one knows what the future holds. Sometimes things work out better than imaginable., I'm so happy for you and it gives me hope.
Sharon, yesterday my husband and daughter said I had enough hair to go hatless so I did. It was cold! IMO, I still don't have enough hair in certain lights but who cares? It's progress. And don't we all need a trip, an indulgence, a reward after all we've been through. Of course I feel every day there are little rewards. The ability to clean my kitchen or do my laundry feels like a reward at this point. But I've had two cancers in 3 years and I think it's time to live it up a bit. No one knows what the future holds!
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Dear SharonDe - Your sense of humor is awesome. And I want you to know how much I appreciate it. You could make me smile even in the Dark.
Oh, and Ladies, Ditto what clarrn said. I am so THANKFUL for this group. You are all beautiful, inside and out.
timbuktu - I kept finding dark hairs under my eyes too. Freaky, right? I totally plucked those guys right out of there. And they eventually stopped coming back.
Hooray for all of us who are going "topless"! I DO get some *looks*, but whatever. Worse are the people who AVOID your eyes. Or who move WAY to the other side of the grocery aisle so they don't accidentally TOUCH you. Sometimes I think about COUGHING or SNEEZING right on them, and then saying "Oh MAN, I'm so sorry. I hope I didn't give you cancer."
In general, though, I find that most people don't even notice. And the biggest problem with going au naturale on top is that it's COLD here now. How the HECK do boys DO this?I'm currently in the midst of planning a super Birthday Bash for my kiddos and it is going to be EPIC. I'm totally overdoing it, because I CAN.
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Clarrn, So happy to hear about the retreat! And I totally agree with you about this group. It has helped me more than I can say.
I'm happy to report that I can see hair growth now! Eyebrows are really coming along FAST! And yesterday I realized that my eyebrows are actually starting...yay! Still have weird hair growth pattern on my head but at least the top no longer looks like it was waxed.
Rads are going ok. Mostly it's a pain driving the 30 minutes there every morning and then home again. But I have enjoyed chatting with others who are there going through the same thing. It may be weird, but I feel more comfortable talking to other Cancer patients that are virtual strangers, than I do with some people I've known for years.
Wishing you all a peaceful evening, lilyrose
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Cold, you made me smile! Yes, how good is it to be able to overdo it a bit?
Today was the first day that I was almost pain free. I ran errands. For the first time I did not wear a hat.
I met an old friend who was warm and polite and did not ask about my hair. She was so nice I just up and told her. And she told me that her husband, her mother and about 10 other people we know had cancer too,
What the heck? Is it the water?
My under eye hairs stopped coming back too after just one or two pluckings,
But today, for the first time, I felt real joy. I could go and do. I bought tickets to a show. I got my flu shot (with some trepidation). Went to the library. I felt I could just keep doing things, my body wasn't stopping me, And that was occasion for joy!
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I'm glad to see many of us are getting back to doing normal things and living our lives. I echo everyone's comments about how this board has been a godsend. I still think it would be wonderful to arrange a group get-together down the road when we've all recovered from our various treatments. I would love to give you all a hug in person. In any case, if anyone ever makes it to DC, I hope you'll let me know.
My MO gave me a presecription for Tamoxefin, now that I've recovered sufficiently from my BMX surgery. I can't seem to bring myself to start taking them. It just feels so permanent. Surgeries have a clear end state. Same thing with the chemo. But taking hormone pills for 10 years, something about that scares me. It's like a daily reminder that it could still come back. It's completely irrational, and I'm the most rational person I know!
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Everforward - I know exactly what you mean - I had a really hard time starting my armidex. It was very emotional taking that first pill - but been doing it for a month now - I take it with my other supplements and just think of it like a vitamin now.
Timbuktu - woo hooo - it is great having an almost normal day isn't it? I love those days and physically most of them are like that now. I am still not totally physically the same - more aches and pains, not quite as much energy but close to normal. I am good with that and hopefully it will only improve from here.
My hair is still growing straight up on top of my head with all kinds of weird waves and collicks LOL. My hair was VERY straight so I am not sure what this means. I would say the hair on top of my head is almost an inch. The sides and back are laying down nicely and behaving and playing nice together. But the top of my head thinks it is a member of a punk rock band. I think I may need to get some gel. I think the color is the same as before - maybe slightly darker. It is not as full but it does seem to be filling in and I see less and less scalp now.
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I hadn't thought of it before but it's true, the hair on the back and sides are fine. It's just the hair on the top of my head that stands straight up . And it feels softer, not like normal hair, more like fur. I measured it last night and the longest hairs are 3/4 inch. I suppose when they get long enough they will lie down at least I hope so!
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well I finally had the nerve to come out on Facebook. It sure didn't help that I went to the Baltimore Ravens ladies night without the hat.
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You are so beautiful! What a smile!
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Now THAT is awesome! Good for you Jamie!
Hope you are all feeling better every day.
Having my exchange surgery Monday - I am so happy to get these expanders out of me! The upcoming surgery brought many fears and anxieties to the forefront of my mind. The fears reached a major pitch mid-week, and I was in a panic. I guess it's PTSD from the diagnosis, mastectomy etc. nightmare. Spoke with someone on a support line who had the same diagnosis as me (not exactly same treatment) and she is 8 years out and doing well. Made me feel a lot better. There are days when I just really feel like I'm the only one out there, you know?
"See" you all soon!!!
Sandra
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Timbuktu - I think we are hair twins - you described it perfectly - the top does feel like fur lol - I couldn't quite describe it and the sides and back feel like hair - it is very odd LOL.
Jamieh -you look great!! Just beautiful!!
Mscaruso - good luck and hope you have a great exchange surgery and a quick recovery. You will enjoy being on the squishy side of this adventure and it will give you a little more closure - at least it will put one more hurdle behind you - but I totally understand the panic - had it too about a week before mine. Don't know why - but I think it happens to many - some have it after exchange.
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btw - here is my latest hair update photo - I am very close to having an "alfalfa" and on my way to a buckwheat - or maybe I am just hiding a conehead? Note the top of my head lol.
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Linda, you look great! It's really growing!
A heads up to those of us who have sparse hair on top - at CVS I picked up colored hair fibers - forgive me I forgot the name. Comes in what looks like a giant salt shaker. Comes in several different colors. Sprinkle on hair, rub lightly, and go! It actually fills in nicely and makes it seem like there is a lot more hair there than really is. Have been leaving wig at home lately after I sprinkle! It looks passable!
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Has anyone tried coloring her hair yet? In another couple weeks I think I can start going topless, IF I can cover up the dark gray. I may try the "no ammonia" hair color. I've heard that chemo hair may not respond to hair color the way normal hair does.
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everforward I tried the last time to color mine blonde and it had way too many chemicals so it turned orange. If you try it yourself just make sure you have a hairdresser back up plan.
Speaking of hair FINALLY I started to grow mine back. It's coming in like crazy including all of the places that I really don't want hair back. I will take it though because I was tired of being bald. So my hair is dark at the bottom and white on the tips which is odd looking. It's only about 1/4 of an inch but is filling in pretty good. I love listening to my kids about it. I am now just hoping by the time we go on our cruise in Jan that I have some coverage. At least I know it will only take me a couple minutes to do my hair.
. I also finally finish rads this week.
. Now I just pray it doesn't ruin my flap from 5 years ago. -
Hello Ladies! Had the big Halloween-themed Birthday Bash for my kiddos this weekend. I dressed up as a pirate - go with your strengths, that's what I always say.
I love that we're all out living LIFE right now. Sending hugs to all - I miss you, but I'm so happy for you.
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Are you getting some snow, Cold???
Just wanted to wish everyone a happy November. Hope everyone is out and about, feeling better every day. And, if still in treatment, positive vibes that it's doing what it's supposed to do.
I still have little boy hair, but it's getting pretty thick (dense? - as in, not patchy, so that's progress).
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We had snow in Chicago yesterday,
My hair is getting dense too but its still strange. Thick and standing straight up on top and normal hair on the sides and back. I dont know what to do with it. I have been going out without a hat but I know it still looks strange.
I feel stronger and more ambitious but I still worry about every little thing. A backache may be mets,until a heating pad takes it away. A cut may get infected. Sigh... I've never been one to be so careful with my body but I have to now, I've had 2 chemos in 3 years. amazingly chemo brain seems to be subsiding quickly.
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Glad to see everyone doing so well. 10 weeks PFC on Tuesday. Eyelashes and brows made their great return last week. Lashes still not at full length but long enough for mascara and pretty thick. Hair is filling in densely, very gray and a texture that is part Brillo pad, part puppy fuzz.
Can you believe how much better you feel now? It is amazing to me looking back over the summer. I thought I tolerated chemo pretty well until I think about how much better I feel now vs then. So glad to have a clearer brain again!
Now, if I could just get the tamoxifen SEs to subside and get through the next 6 weeks of rads I will be all set!
Happy November!
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mmtagirl - You're so right. I feel so much better now than I did during chemo (final tx 8/13). I just realized last night that I can easily touch my toes again! During chemo, I couldn't because my leg muscles felt so tight! I can also do stairs again without feeling like I just ran miles. Woo hoo!
What sort of SEs are you getting from the Tamoxifen? I just took my first pill 2 minutes ago. I finished rads last Wednesday. The 6 weeks will go by fast, plus the SEs aren't as bad as chemo SEs. I only had the burned skin, which is turning back to normal already, and a little fatigue (nothing compared to chemo fatigue). -
Mommyq, the first two weeks on Tami I really didn't notice much difference. I had some joint and muscle aches but I attributed it to chemo. However, as the weeks have gone on the aches have persisted and have become more intense. My lower back, legs, hips and hands mostly. I find that exercise helps a lot even if I think I am too stiff to do them. I went to a yoga class today. I am not nearly as flexible or strong as I was a year ago but I could tell that I had improved from the last class I took. The stretching felt really good.
Good luck to you--wishing you no SEs!
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I've found a heating pad really helps the back pain.
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mmtagirl: thanks for the tips regarding SEs and what helps to relieve them. I hope the SEs lessen for you over time.
Timbuktu: thanks for the tip about the heating pad for pain.
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Timbuktu - sharing this with you to see if the top of your head looks like this??
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Thanks linda. The color is very close but I think your hair is longer. But very similar. The sides lie flat but the top has a mind of its own.
I just got back from the onco and so far so good! Everyone complimented me on my hairdo! People keep telling me how great I look and I know I don't. I don't know if they're just trying to make me feel good or if I really do look a lot better than I did a few months ago. I sure feel better!
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Here is the top view - just for giggles
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You have a real little swirl of hair there. I just have a straight crew cut. The nurse today was patting it! lol It still feels like fur.
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Lots of hair, Linda!
Right after asking Cold if she had snow in Calgary, we had quite a snowstorm in Maine have not had power since Sunday, but we do have a generator, so it's okay. Hope Mame Me and anyone else from around here is fine - lots of trees and power lines down. So thankful to be done with chemo, since that's one less complication with the weather. Oh - and the dog stuck her nose in a porcupine
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Stay warm Sharon! !
Today I saw my oncologist and pointed out a new lump in my armpit. Thought he would say it was nothing to worry about, but he said it needs to have an ultrasound and possible biopsy. I am still in radiation. YUCK! Not a good feeling. Just feel angry, that I was almost done treatment and could be heading back to the beginning, or maybe nothing at all. BOO to you breast cancer and the games you play with my poor mind! !
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It still may be nothing, I know this stinks but try not to panic, ha! My dr just called me a "panicker".
I think we're entitled to panic at this point, better than letting things go. But this may just be an infection or something I had a lump under my arm when I was pregnant with my daughter and it turned out to be nothing,
Try to wait until you know more, Easier said than done!
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clarrn. I had something similar last time and it was a stitch. I hope you get the b9 soon.
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Thanks ladies!! I knew you would keep me sane
Yeah I am hoping that it is just a normal lymph node compensating for the ones I am now missing! Before cancer it took me 3 weeks to get in for an ultrasound, now I get in at 8 am tomorrow morning...lol #cancerperk -
clarrn, while I doubt sincerely something would pop up so soon and suspect it is rads related lymph issues, I would be panicking as well. Heck, I will panic with you until you get the all clear tomorrow. Big hugs, lady.
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While we're in panic mode....my big toe has been infected since Friday. I've been on antibiotics since Sunday.
And as I sit here I'm watching the whole foot turn crimson. Has anyone else had this happen?
I'm freaking out and going to the dr 8:30 tomorrow. I tink I may be on the wrong antibiotic. Missing nodes, diabetes and post chemo infection=panic!
Just took a Xanax.
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I am worried about your foot Timbuktu. Glad you have an appt tomorrow too!! Sounds like you may need a different antibiotic
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Hugs, Clarnn and Timbuktu. Check in tomorrow please so we aren't worrying about you!
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Good thoughts going out to Clarrn and Timbuktu
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Hoping we hear good news from Clarrn and Timbuktu today.
I'm two months PFC and have noticed mild tingling in my feet recently. I had no signs of neuropathy during chemo. My toenails are in bad shape and haven't grown at all since August. My new MO is practically useless. I guess the next stop is a podiatrist.
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Thinking positive thoughts for Clarrn and Timbuktu. Hate these detours that BC puts us on.
Everforward - Herceptin can cause tingling in the feet and hands. How long is your infusion? If it isn't over 90 minutes ask to change it to that and see if that helps.
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Thanks, Linda. I've been getting the 30 minute Herceptin since April and only now noticed mild tingling. If it gets worse, I'll ask about slowing it down.
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Relief! Just got back from the dr. He said the toe is no longer infected. I had a piece of toenail that was irritating the sore part of the toe so he cut it away. The foot turning red is just a normal vascular difference. I probably never noticed it before. Hmmm, not too sure about that but anyway he said he's happy to give good news and I'm AOK. He's so nice. He said he was so glad I came in, that he much prefers to treat things early than to have people come in with huge problems that they've been ignoring.
So, let's hope this is just the first of a series of good news on this thread.
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Woohoo Timbuktu!!! So glad it's good news and a great doc!! My appt got moved, so I am just sitting in the waiting room now.
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It will be good news for you too! I'm praying.
I just got my tumor marker results. LOW! Yay!
Let us know.
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And the verdict is MUSCLE!
A weird little pea sized bit of muscle. They aren't sure why it's there or why it hurts but I am so glad -
Ha!!!! hOORAY FOR YOU!!!!
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Yay to Clarn and Timbuktu! So happy for you both.
Anyone one else having tongue neuropathy? Mine is getting worse, not better. And, that awful metallic taste in my mouth has returned. It gets worse as the day goes one.
I know I shouldn't Dr Google but I did and Burning Mouth Syndrome sounds similar to what I am feeling. Could be chemo pause induced. Haven't called the onc yet. Was hoping it was a phase that would go away.
Still have a little neuropathy left in my index fingers and toes once in awhile. Otherwise I feel great and got some good workouts in as well. Oh and day 4 of rads!
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That's amazing, that you have energy while on rads. Good going!
Has anyone had wavy sight? I've had it twice now and the dr wants me to have a carotid artery ultrasound. But it occurred to me that every nerve in my body has been damaged by the chemo, why not my eyes?
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Woo hoo for muscles and irritating toenails!!!
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clarrn glad it's a piece of muscle.
Timbuktu my eyes are still not right. It drives me batty. Glad those numbers are staying low.
As for me I am still healing from chemo and rads. My feet are still just cold all the time which drives me crazy. I have started this past week working out. It's not pretty but I have been getting thru it and it's been helping me with sleeping at night. I go to bed and I fall asleep super quick. My rads skin is starting to peel and leave pretty new pink skin. I am now just hoping that my reconstructed breast doesn't shrink too much.
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Hey girls!!!
Sorry I don't get a chance to come around too much and check in!!! But I wanted to extend the invitation to a closed/private fb group we created for some of us girls from this april chemo thread who became close and chat often (outside of this site). The fb group just seems to make it easy to all stay connnected and in touch - there's about 10 of us now but if anyone else would like to join, just send me a message or request to join the group. It's called My Sweet Survivor Sisters . Just an easy way for us to update our journey and keep in touch!
And to the other girls doing their year of hereception - I too have mild tingling in my hands and fingers. It's very mild so I can't complain, but I do notice from time to time.
Hoping everyone has a great weekend!!!
Ps - finally got my date for my exhange surgery! Jan 22nd !!!
Xoxo
Jen
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thanks for the invitation, Jen.. I just sent my fb request in.
Yay for your exchange Jan 22.
What a year we have had!
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Jen I sent a request to join.
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Sunshine...I just sent my request to join your FB group
Thank you for creating it...FB is much easier for me ! Trin -
Trina - the request didn't come through - can you try again? Or find me on fb and I'll add you (Jen Elkins Massinger) :-)
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I WANT MY HAIR BACK!
I can't do the wig at work for too much longer, it's getting to itchy. This weekend I'll try coloring the short pixie cut and hopefully it will do and I can start going topless next week.
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EF- I am with you. I want mine back I am tired of the looks and stares. I go topless all the time except to events that I photograph. Even a pixie cut will do...
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My hair is over an inch long now and still stands straight up. I look kind of punk and I'm liking it! lol
I don't have to comb it. It never looks messy. And at 65 I think I look kind of "cool". I keep asking my husband and daughter what I should do with it and they both say it looks fine so I'm going with it. I'm not working, which helps. And it's FREEZING in Chicago so I don't look unusual with a hat on.
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this is my second week without a wig at work. Feels soooo good! And, liberating! Really don't care too much any more about what others think about it. Typically, it has turned into a non-event. Go for it!
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Timbuktu - like this??? lol My Marge Simpson is on its way
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Very close! Why on earth does it grow in like that? Not quite a Mohawk but getting close!
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The decision of when to go topless (particularly at work) has been an indication of just how vain I am! The pixie cut (I guess that's the feminine version of a buzz cut) is definitely not a hairstyle I would chose for myself and I won't feel very comfortable with it. I'll have to come up with a readymade response to the "why'd you cut your hair" questions I'm sure I'll get the first day. Any suggestions? (Some co-workers know that I was in chemo, but many don't.)
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the pixie is about 1 1/2 to 2 inches all over. I have the GI Jane thing going on right now
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Everforward - if the people asking you are people you don't want to talk to tell them you had lice. LOL. Seriously - you could say that you always wondered how you would look with that short of hair so you decided to just try it. Or tell them that you are supporting someone who has cancer or that you did it as a fundraising thing. But I think I would go with "I just wanted to see how it would look and hair grows back"
Timbuktu - I don't wear a hat or anything out and I get some serious stares LOL - I try to comb it down with a hair dryer after I shower and it still goes straight up - that picture is after I tried to tame it. And on the crown it is one huge swirl. My daughter's friend says it looks like a hurricane up there. So weird...
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Thanks, Linda. Great advice, as usual.
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Linda, Love the hair! I think mine is going to look like yours soon. Mine is shorter, but will not lay flat on top no matter what I do. Lol. At least it's growing!
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Everforward, I was a little hesitant to go topless. My hubby convinced me that I should just go for it! He said if people want to stare, it's because I look so good in super short hair! Lol. I'm just glad I don't look like Uncle Fester anymore.
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Giving thanks for all of the wonderful strong, courageous, compassionate women on here who helped me get through a very difficult time! May you all be well!
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Have tried to post a few times, but had problems with the Internet connection.
Just wanted to say Happy New Year to everyone, and hope things are going well for all.
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Hey Ladies!!!! Just wanted to swing by and say hi. Seems like our April chemo group hasn't been posting here too often, which is an awesome testament that we are all slowly putting the pieces back together and moving on with our lives
Just a friendly reminder that a few of us from this thread are part of a private fb group that we share on - we all all pretty active on there (who doesn't check the fb through out the day lol), so if anyone else would like to be added, you can send me a message through here and I'll add you
Hugs to all!!
Jen xoxo
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