September 2013 Chemo Group
Comments
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hi ladies,
I was away all weekend for a hockey tournament, thank goodness it wasn't far away. Had taxol #1 on Thursday and by Saturday , my oh my did the pains set in! I felt like my ovaries were going to fall out! Between the pelvic pain and the bathroom issues holy smokes!! Starting to feel better today, pains off and on, but tolerable! I have been taking ibuprofen which is taking the Edge off. One question... my nails right on the cuticle line are really white and sore. Did anyone else have this? And the hot flashes are crazy!! -
art - when is your wife done with chemo and on Herceptin only?
For those wondering about surgery and the differing types of recon - it is important to note that seldom do plastic surgeons do all types of recon. It is sort of up to you to decide what type of recon you want, and what is feasible with body type and breast size - one-step direct to implant, tissue expander to implant (silicone, saline or anatomical gummy bear), skin and /or nipple sparing mastectomy, or flap - DIEP, TRAM, GAP, etc. - then you find the plastic surgeon who specializes in that type. Often plastic surgeons will only discuss the type of recon they do the most, and will either not mention other types, or dissuade you from finding out about them. Flap surgeries require micro-surgeons with vascular specialty, gummy bear implants just came out of clinical trial recently so many plastic surgeons do not have experience with them unless they were part of the trial. Depending on what type of recon you choose ask your surgeon how many procedures of this type they have done, and what their personal complication rate is. -
Vintagegal1 & Travelmom ... thanks for asking! I'm struggling with the hair loss, not "comfortable" with what's happening to the hair yet. My hair was always very thick and now my scalp is showing and the hair is baby soft & fine, shedding like crazy and I hate it. Haven't been able to bring my self to have it shaved off yet. I have wigs, but embarassed to be seen wearing one. I only venture out to the store at times I probably won't run into anyone. I know I have to get over this and move forward, just not there yet. As ridiculous as this sounds, this has loss has been greater than all the other losses that have happened so far - including BMX! Intellectually this makes no sense to me, but I suppose it's the dignity issue. Both of your attitudes and stories have been very helpful to me, thanks ...
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Special K:
By my calculations chemo will be done by mid to late January. -
Art - most surgeons like to have at least a month, if not more, until they do surgery after finishing chemo so as not to have any inhibited healing, but you can definitely have surgery while still on Herceptin. I finished chemo on June 2 and had surgery to replace my left expander in mid-July, and was only half way through Herceptin. -
Art123,
Interesting you should ask that. I have IBC and am half way through chemo. Today I called to make an appointment to meet with the surgeon. They scheduled it for the last week of November. Seems like a long time away. Surgery will be sometime in January. I want to get the date set so that I can schedule the 3 weeks of leave from work and have a game plan. My treatment plan is 6 rounds of chemo and Herceptin, then surgery, then likely radiation. The Herceptin infusions keep going every 3 weeks thru August.
Started chemo September 5th. Last round is December 20th. Half way through now and don't like the wait. Also don't like not really having some definitive assessment of the chemo's effectiveness yet. I almost cried today... ok... I did cry today... broke down some. Waiting is hard.
Good thoughts for your wife and for you. The waiting is hard. -
I'm ok with the bald head. I'm just tired of strangers calling me, "sir". argggh.
Bought some new earrings to wear but it has been so long since I've worn earrings that I'm afraid my ears will get irritated and infected. -
KJ - I've met with all three of my surgeons (having ovaries out, too) but still have no surgery date. I messaged them today to see if there has been any progress on the scheduling, but nothing yet. My surgery will be at the end of Dec or beginning of January. My mom will be flying down to watch my kids since my surgery will be in Dallas (3 hours away), so it would be nice to know ASAP when it will be.
My son told me tonight he misses my hair. :-( -
Is anyone having a problem with rapid heartbeat? I know I'm anemic so every little thing tires me out, but I've been checking my blood pressure at home (hubby has to check his daily) and my pulse is running around 100! Normally it's around 60. I took my BP tonight and it was only 87/70 but my pulse was 109. Is that a chemo thing, or an anemia thing, or something else? It's kind of freaking me out. I don't really notice a rapid heartbeat or any palpitations or anything, but still... -
Evening Ladies.
Cougarlicious I bow down to you. Congrats on your little one.
Aches & pains No nuelasta but I get joint pain for almost 5 days after tx. This time (tx #3 ) I only had it for 2 days. the knee & hips I can handle cause it is very similar to arthritis, but the feet. There are so many joints in there it really makes it hard to walk. I have had more nausea this round joy. My nurse said that because I had a light breakfast on day of infusion that I would have more this round . She also said I could expect nausea around day 7. She said to eat a bigger breakfast on infusion day. My itchy rash is ALOT less this round as well. Thank Goodness.
We had snow here on the weekend. Last night it was to go down to -20 C . It is f'n cold without hair. I wear a toque in the house. Can't figure out what to wear if I go out. Maybe I can layer in bright colors & look like I am a roll of lifesavers! -
lighthouse - it is a chemo thing and an anemia thing and a steroid thing. -
Lighthouse: Could be dehydration.
Taxol/Herceptin #3: Major complaint is that my appetite has come back!!! Craving sweets, which pretty much nauseated me until this point. 😜 Anemia is also an issue, but continue to pray that my levels will remain stable for 9 more txs!
Stay strong, everyone!!! -
LHL- my pulse is high like 100 every time I go to the doc and they say it's related to the chemo.
70charger- yes I do agree...it's amazing how much colder I am without my hair! -
I really want to rant tonight. I really want to rant tonight.
But, alas, this is a marathon, not a sprint... and I am in it to win it!!! -
lighthouse, yes me too. My pulse is usually in the high 80's and low 90's, so bizarre since I was always a sub 60 BPM resting heart rate kinda girl. My blood pressure has stayed low however. And if sit quietly and just relax my eyes? I can see my pulse beating in them. Ack. My eyeballs throb.
kjsimpson, I hear you on the wanting to rant. I keep hearing everyone tell me "but you're have way done" and I just feel like i'm half way to nowhere right now. Still dealing with the period from hell. 8 days and counting. No chemo pause here yet. -
KJ - Rant away! That's what we are here for!
Peacockgirl - You explained it perfectly - you feel like you're halfway to nowhere. I feel like I've been plugging away on this journey for so long already, and yet I have LONG road ahead of me still. I'm sorry about the period from hell. When I first started chemo I had two periods in three weeks, and the second one went on FOREVER. However, that was the end of September and nothing since... so maybe I finally hit chemopause. Hope you get some relief soon. -
KJ,
Thanks. We have 4 more taxol/herceptin than AC every 2 weeks for 8 weeks. I'm trying to be proactive because my wife likes to procrastinate. This is too big if a decision to do that with. I found a good link that lists all the recon options with pots & cons, I'll post it.
Onc was not sure for radiation yet and still possible she could fave a lumpectomy.
This waiting until surgery to know whether tumor is all gone & nodes etc is crazy. However my wife & onc definitely feel it's shrinking.
The wife and I got in a tiff this morning because her parents were taking her to chemo today instead of me. I've been to 8. I needed a break and in running out of vacation days.
I feel bad but I'm a little frustrated.
Anyway, I hope everyone is well. -
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Been following all the posts. Isn't it great for the AC people to be on the edge of being done. Finishing my 4th AC today. Just have to get past the next 8-10 days of SE's. Nice thing is my Onc. is letting me have an extra week off before the taxol and herceptin starts. So I will actually have a full week of feeling almost normal. Good luck to everyone heading to the chemo bar. -
Art-sorry you and your wife had a tiff-I think it can be just as hard for our family to go through cancer with us as it is for us to go through all the treatment. It can be so hard to be on the other side and feel so helpless. My mom had cancer so I have been through it with her. I am sure your wife understands why you could not go this time and hopefully she will enjoy a change being with her parents. I have a bunch of different people who go with me and I do not mind at all. In fact, I enjoy the change. I have chemo on Thursday and it is Halloween so my chemo nurses have already told me they are dressing up and bringing in tons of food. Needless to say all of my chemo friends having been fighting over who would go with me. It is nice to be on the receiving end!
Hang in there! Your wife knows that you are her greatest supporter! -
LHL: Unless your normal BP is low, 87 is low for a systolic blood pressure! You need to be careful that you don't pass out. You may want to call MO about going in for some IV fluids.
kj: Vent away.
DH's parents were here for the weekend, and as they were leaving, DH makes a remark to them about me almost being done. I bit my tongue becaus his parents are old and getting frail, but I came really close to going through the roof. I am not even halfway done, and January 3 might as well be 3 years away, because that is what it feels like. Why do people say such stupid things? I wanted to just scream!!!!! My parents do the same thing everytime I talk to them. Last ime I spoke to my mom, she said, "You ONLY have a couple months left. You need to have a really positive attitude and you won't have any side effects. Remember me? I treated my breast cancer like I just had a cold and I didn't even lose my hair during chemo". How, oh how am I going to deal with HER (my mom, the one who said that) when she comes to visit at the end of Nov? ....... Yep, just smile and my side effects will all disappear. Got it. For the record, she did not lose her hair during chemo, but she also go the least strong meds, very, very low doses, and, that was over 20 years ago when they used different drugs!!!! Eek. Rant over. I think I may stay at a hotel during her visit. She means well, but she drives me bat shit crazy about his whole cancer thing. What is it with all of these people that think chemo is a convenient time to visit anyway. Uuuugh. Sorry for the vent. January just seems like it is an eternity away, and I have been feeling hormonal, like I have had PMS for the last week. I really want to snap out of it and find the positive me again. May be time for a really long walk today; maybe that will clear my brain. -
I agree Art, you are super sweet to be doing all of this research and supporting your wife so much. I have a different person with me every week - it's a nice chance to catch up with friends and I think it helps them to see what is going on with me - the chemo bar isn't a horrible place!
I'm with you KJ...I am sooo tired of waiting and want this to just be OVER! I've ran two marathons and this requires way more patience. Hang in there! Step by step, day by day. Everyone is different. Ann is happy to have an extra week off when changing meds and I'm asking for my 2 week wait to be changed to one! -
LHL: i agree with KBee. That sounds really low to me and you should probably get checked out. My first thought was dehydration too with the high heart rate.
I guess in hearing you all vent about family I am kind of glad that I don't have to deal with that lol. I can only imagine how bossy and know it all some people in my life would be and it would drive me bat shit crazy too.
i agree about the "half way done" crap. Yeah...I'm ONLY HALF WAY DONE! I already feel like I'm 180 years old. What are the next treatments going to do to me? I have been going through a bit of a depression is my problem. In part because of what I meantionsed above: there is no one here for me. My sister that I really thought would be here for me, and the only one within hundreds of miles, couldn't care less. Things haven't been great between us for awhile but it is a crushing blow. I mean, if she doesn't care that I have CANCER, I kind of know where I truly stand with her. Then it worries me because I known cancer and depression are a seriously bad combo, and likely the whole reason I got into this mess in the first place. I lost my first true love a bit over two years ago (yes, after my ten year marriage ended, sadly) and it nearly devastated me. I was so depressed that I was only eating every 3 days or so, living on energy drinks and coffee, not sleeping much. That went on for over a year; my sister turned her back on me during that time (we were previously like best friends) so that made things even worse. I don't even know how I survived it let alone I am not really surprised that I got cancer; I treated my body like crap and I deserved to get cancer. I finally had begun to really get past it shortly before I found out about the cancer. I don't do antidepressants though because I have bad reactions to all of them and they usually make my mood worse. I am trying to find a support group but it was difficult before and ridiculous now... Blah. -
Sooooo... On the subject of diet from my last post, kind of lol. Someone (sorry I don't remember who or when) posed the question about diet changes. Maybe I understood it differently than what anyone else who answered did, but at any rate it is something I am curious about anyway. Has anyone made any lifestyle-type diet changes since finding out? Like I said, I couldn't have treated my body worse pre-cancer, and after I found out I was gung-ho to change EVERYTHING about my diet. I cut out caffeine and energy drinks completely, started eating breakfast everyday (which I NEVER did), I was afraid of eating any fast food at all. That all kind of faded away though. I have eaten a ton of Halloween candy...maybe the depression. I know I should eat better and a friend of mine sent me The Cancer Fighting Cookbook and I would like to implement those things. It is just so hard to do all that cooking and preparing. It is sooo expensive to eat organic foods too! I have made a few changes but I can't afford to do a lot. I would really like to go mainly vegetarian and all raw food but I doubt there is anyway I could afford that. Ever lol. Part of me says that I will just wait until after I am done with chemo to make and permanent major changes but then I worry that I am not taking care enough of my body during treatment and it is just wearing me down more than it should. And what about supplement or complementary medicine? Anyone doing any of those things? There is so many I don't even know where to start! I think I am going to do Iodine supplements. I have read about that and links to cancer a bit and I did have symptoms of low thyroid before all this anyway. Just curious what you all are up to. Sorry my posts are always so long. I have no social life so it comes out online lol. -
Ann - Congrats on the last AC!!! And an "off" week, too - that's a bonus. :-) (although I'm like knightzoo and want to get finished ASAP so I wouldn't want any delays!! )
Babyruth - I totally agree with you. I think it's almost harder on those around us. We have no choice but to DO what needs to be done. But our loved ones? They feel helpless and can't always know what the right thing to do is. Have fun on Halloween! :-) That's a nice way to spice up a chemo day!
Kbeee - OMG I am laughing at what your mom said. Not that it's funny, but it's funny that she would say that to her daughter of all people. Good Lord. I was freaking out about my mom's visit last month because I didn't think I could stand the "mothering", but it turned out better than I thought. Maybe your mom's visit will, too. How's that for a positive attitude? :-)
mamastewart - {{{hugs}}} No matter what you did or how you acted, you did NOT deserve to get cancer! It's just a bad roll of the dice for all of us. I'm sorry about your sister - it breaks my heart that someone you were close to turned her back on you now when you need someone the most. Ugh. What is wrong with people???
As for your question about diet..... I really haven't changed much during chemo, because frankly I just eat whatever I'm able to eat. I don't eat 100% healthy but I try. I love fruits, some veggies, salad, etc, but could never switch to an all raw diet like some people recommend. My mom sent me a book "Crazy Sexy Cancer Tips" and it's really a fun book to read... but the author went totally vegan and organic and her diet is 80% raw food and she describes eating things I've never even heard of. Um... I live in Abilene Texas, have two small children and we live on one salary. I just can't make a radical change like that! I have given up soda except for Sprite because it all tastes nasty. I still like a piece of chocolate here & there and will take french fries any day.
I feel like I'm drinking plenty of fluids and am peeing a normal amount.... so I don't think I'm dehydrated. I'm not supposed to see my MO until next chemo day (next Thurs) though, so I'll keep an eye on it and call if I get worried. My BP normally runs on the low side. It's usually around 100/70, but whenever my immune system gets down, my BP goes lower. Last year I had Lyme Disease and the only symptoms I had were extreme fatigue and really low BP (80/43).
Oh, and the hot flashes have started!!! So weird, because I'm usually ALWAYS cold. -
I figure I will wait until I am done with chemo in January to do a detox diet, why even TRY when they are toxifiying me with poisons every 2 weeks right now? Honestly I really didn't eat badly to begin with... but now if I want ice cream for dinner? I do it. One thing I have given up is alcohol. Not a drop since labor day (my husband gave it up in solidarity as well). Just didn't want to add the extra stress to my liver. And it had really gotten off the hook since my diagnosis in July...I could down an entire bottle of wine on my own. Nightly. How was that for self medication? I am in a wait and see mode about whether I drink again when this is all done or not. I've heard from everybody it's a risk factor and more than 2 or 3 drinks a WEEK is too much. I'd like to get to where it's an unusual thing...maybe a nice glass of wine for a holiday dinner or a special occasion. Part of me doesn't want to be "numb" to life again.
Lighthouse ...how is the taxol SE /pain going? Did it dissipate at all? Are you still having to take meds for it? My MO gave me oxycodone for pain when I am dealing with the neulasta SE...I swear it doesn't do much at all for me. I just suffer about 36 hours and hurt all over and then by today it lifts away like a blanket getting taken off of me.
oh and as for mothers...my adoptive mom died when I was 27 (1998) ...but I am in contact with my biological birth mother (found her and my 1/2 sister 17 years ago. Her response to my diagnosis was that it was "too upsetting for her to talk to me about it and just made her feel guilty for giving me up for adoption". WTF? How is this about her? At least it was easy to get my BRCA test paid for by insurance because I am adopted and she won't share with me who my biological father is.
~nichole -
Nichole - that's CRAZY! Too upsetting for her.... well too damn bad! It's upsetting to you, too!
The taxol pain is better. Sunday was the worst of it. I was on the couch all day and alternating ibuprofen with my pain meds (percocet)... but nothing really touched it. Yesterday and today I still ache all over, but it's not the awful "Oh my God that hurts" kind of pain. And it may be a pain (literally), but I'll take this over the AC yuckiness any day. My taste buds aren't all wacky (or gone) and I haven't felt pukey at all. Just achy and very, very tired. -
lighthouse-thanks for the info on SE of the taxol. I agree about the yuckiness from the AC, always trying to take some kind of pill to try and combat the SE's and to feel some kind of normal. Are you taking any steroids post taxol infusion? -
kbee- I don't think unless someone has gone thru chemo can they realize how long and slow the days pass! I am sorry that you are still only half way thru! I just had a friend post on fb that October flew by...I wanted to say "want it to slow down try chemo."
On subject of food. I know I have to start eating better too...just feeling over whelmed as to where to start and how to cook for my picky eater family. Not sure how to get my boys to eat better. Really not wanting to be a restaurant, but not sure how to just get the junk food out and get the better healthy food on to the menu. -
Ann - I'm not taking any steroids. They gave me some in my pre-meds, but that's it.
I think chemo must be like pregnancy as far as time going by..... it seems like it flies by as long as you're not the one going through it.
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