October 2011 Chemo group
Comments
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Terry71: You look so beautiful with your bald head (and beautiful with that lovey long hair).
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For those of you in need of a pretty head cover - try this site
http://www.gailafund.org/site/index.php
They will send you a free one if you are losing your hair. I just got mine today and it is really pretty.
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Thanks for sharing the picts:) Always fun to see cute smiling faces.
Yes welcome Blayz7:)-This is a great group of ladies:).
Thanks for the tropical flavor suggestion of posicles. Always looking for new things.
Tappy- I like your idea of a few hrs a day. Sounds more manageable & less stress. When I finish my brain Chemo I'm going to go back to a 3-5 hrs shifts. When I did just body Chemo I could do that easier but I'm not able to work @ all w/Chemo 3 times a week.
A new week is here my brain Chemo countdown is on. I only have 3 brain chemo left! I hope I can stay healthy do 2 this week & my last 1 next Tues (fingers crossed!) Then I'll only have to do spinal infusions w/hercepitn:). Yahoo! Yea for the small things indeed.
I hope all have fun plans for turkey day & we all feel well w/healthy appetites:). Thanksgiving is always a fun filled day of great memories. I hope it is/will be for you too.
Take care all & I hope your week is as good as mine will be:)
Hugs-
Malinda -
wow those hats are beautiful!! I wonder if anyone knows of a link to make them ourselves.
Its on my bucket list to learn how to use my sewing machine
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Another source for a free headwrap is
http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html
Here's a picture from a few months ago - the one they sent me:
It came accompanied by a "get well" card signed individually by all the staff members of the Good Wishes program.
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Good Morning!
fredntan and others here are a few links for sewing hats. Some are free patterns and some you have to buy.
http://www.brimmingwithlove.com/patterns.html
http://www.nancysnotions.com/text/pdf/CKEasyHat.pdf
http://www.fmfcorp.com/familyspot/haircover.html#Sewing
tappy I just got mine too from gaila fund and it is beautiful!
Also I have made many bandanas 30x30 in all sorts of cute cotton fabric. My sister-in-law just sent one to me made of flannel. It feels so good on my head because it is so soft and as it is getting a little colder in WI it is very much appreciated. I never realized how much my hair helped me stay warm on the cold windy day! The ears and the back of the neck get so cold brrrr!
Thanks for sharing pictures!
Have a great day everyone!
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Thanks for the Websites for the hats! They are so nice! I just ordered mine & can't wait till they come:) Love all the pictures too! Everyone looks so great.
Have a great day. Off to body Chemo this afternoon. Cycle 2 begins:)
Hugs-
Malinda -
Hi everyone - hope your week is starting off great. Terry -you look beautiful - with or without hair. I sure hope mine comes back just as thick and pretty as yours. I had really straight hair before - and thin. Michelle - I love your hair color too. You look sooooo sophisticated! I can't remember how many weeks out you are from your last treatment but wanted to ask if you are starting to feel like yourself yet. It seems the more treatments I take the more the chemo brain/fog kicks in. It's kind of scary sometimes.
My sisters came this weekend for TX3. We were talking about my cat and I called her "Maggie" and immediately knew something was wrong but couldn't figure out what it is was (her name is "Mattie"). Was driving them around and stopped at drug store. I looked up and saw an angel pin on the visor and didn't have a clue where it came from. Well, I wasn't in my car - I was in my sisters' car!! I'm doing things like this all the time now. Anybody else? Just can't find the words sometimes. I sure hope this goes away after treatment.
Malinda - sure hope everthing goes great with your treatments. You are such an uplifting person. You help encourage me on days when I've once again let my big girl panties slide down and am having a pity party.
Hope everyone has a restful night. Talk to you tomorrow!
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Hello everyone!!!
Started my chemo on 10/3. next one on 10/18. Seen the readiation doc today, and they want to start radiation between the second and third chemo. Has anyone else talked to onc about this? I was fine the first 2 days after chemo, then crashed, and I cant possibly imagine adding 5 days a week of radiation as well. The shots for the white clood cell count make my hips and wrists hurt like crazy, but other than that not to bad. Not looking forward to chemo this week thats for sure.Then the rradiation dr scared the living daylights out of me by telling me the type of cancer i had without the chemo or radiation has a 70 percent chance of recurrence! i know im whining but a little freaked out. Take care everyone!!!!
Connie
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Carla - thanks! I am 6.5 weeks post-chemo and I am feeling really good, almost 100% normal. Not 100% because I had surgery to remove my tissue expanders at the request of my radiation oncologist and now I'm dealing with foobs, which are a bit of a pain, although less so than the discomfort of tissue expanders. I have to say that I didn't seem to get "chemo brain" but my DH sure as heck did! He can't remember anything these days...LOL! It's become a family joke!
Connie - I was told I had a 70% chance of recurrence by my first radiation oncologist, but a 30% chance by the second one, who happens to be the Chief of Radiation Oncology at Dana Farber. Radiation reduces my risk to 10%, so I must do it. You're probably Stage 3, and it does have a higher recurrence rate but radiation will reduce that significantly. Are you taking Claritin for the bone pain after Neulasta? I took it the day of and four days after the shot, and I didn't have any bone pain at all. I did have some joint pain during days 4 and 5 after each of my 4 Taxol treatments.
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Way to go ladies:) It sounds like we are all hanging in there in spite our aches, pains & fears. I know a lt of what we go through is with the strength of mind.
Carla-thanks! I've found my mind to be so powerful that the more positive I think the more positive I feel. I know that the results I'm having has a lot to do with my mind set. The Drs are amazed!
I saw my ong today & after just 1 cycle he says all the tumors in my breast are gone & they are back to almost normal! And that's just 1 cycle out of 6! Plus I was told today that I only need to do 1 brain Chemo Tx a week because everytime they've done a cytology on the cells in my spinal fluid it comes back negative! WOOT! WOOT! So only 3 more weeks w/1 Tx a week for brain Chemo then we switch to Herceptin in the spine, then retest w/an MRI!I'm so excited I'm doing my own happy dance:) I knew today was going to be great!
. Then I find out you are all doing well or at least fighting back is amazing. There definitely are good & bad days/weeks so each good moment is so sweet:).
Enough rambling. I'm just so happy & felt better today than awhile. Oh how sweet it is. Progress & baby steps:)
Have a great night & I hope this week just gets better! Hugs-
Malinda -
Just got home from MO app, last chemo for sure Nov 17th, Picc line comes OUT!!!!!!!!!!!!!!!!!!!!!! herceptin for 1 yr and onto rads....... Sheesh after this treatment thats gonna be a walk in the park..... Right?? LOL
TallM: wow thats awesome so happy for you, doing the happy dance with ya :-)
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Terry-
Thanks & Ya the finish line is in site:) Happy dance indeed. Lol-ya piece of cake:)-Ha. Onto the next-I've heard rads isn't as bad:o Just makes you tired. I'll be anxious to hear how if is. For now happy dance. We need to take time to celebrate the moment for now:) -
Good Morning everyone,
RULiving, no I didnt try the claritin, but you can bet I will. Too many people keep telling me that, so cant hurt to try right? And yes im stage 3. Just seems so daunting. Tallm and Teri yeah for the both of you!!! And Carla, I have been doing things like you for about 2 years now, like not being able to remembeer names of certain things, like chair or car or uh uh uh.... I thought I was going through menopause or going crazy. And yes I have tried to get in other peoples cars, duh? lol I hate to see what this chemo gonna do to me. Love to all
Connie
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CFDR - My husband got help. He was definitely feeling anger at me, and knew it really wasn't me he was angry at. He went and spoke to someone, and got help. And since that moment, it's all changed. If there is anyway you could talk to your husband about that, I'd suggest it. I know men never like to do it, but it has made a world of difference for both of us.
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Woo Hoo - so nice to get on here and see some good news. Malinda and Terry - I'm doing the happy dance for you.
I've managed to get through today even though it's Day 4 post-treatment and it usually kicks my butt. No breakdowns - just really REALLY tired. I just have to think positive though - half-way finished with chemo. Woo Hoo!! It's all down hill from here baby!
I hope you all have a great night.
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Also - Connie - we'll just blame our memory lapses on chemo. I'm blaming it for everything these days!!
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Hi, everyone. Just got caught up on posts, and I love the strength and support here!!! We ladies are truly awesome. I think we are all beautiful with our bare heads, maybe I'm just getting used to it. But I think our beauty comes from within so all of you look beautiful to me!
Yesterday I attended the Look Good Feel Better class at the cancer center, one of the sponsors is the American Cancer Society. It is a free class for women going through treatment, and they give you a free gift bag full of nice makeup and show how to use it. They also talk about wig care and scarf tying. If any of you haven't heard of it, you can check to see if they have one in your area at: www.lookgoodfeelbetter.org or call 1-800-395-5665. Or contact your local ACS office.
I love the pictures! I'm too much of a computer dunce and I don't have the energy to figure it out right now, but maybe my sister can help me post a pic when she comes.
And thanks for the links to hat patterns. I am knitting a cute hat, and I can sew, but again, my energy is so low I haven't made any yet.
Treatment #3 tomorrow, not looking forward to the next week. But my sister is coming so that will be great. I already told my family that I will not be doing any cooking for Thanksgiving, so they will have to figure it out. I'm going to try to relax and enjoy the moment, and smile as much as I can, and I know that will mean more to my family than any beautiful meal or clean house.
Have a great week everyone, and keep drinking!
Barb
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Day 2 of Round #3 TC. Three down one to go, Woohoo! When I met with the MO they explained exactly what was going on with the stomach issues. Apparently the TC intereferes with the function of the pylori sphicter valve between the stomach and small intestine. This malfunction allows stomach acid to flow freely all the way up the esophagus all the time. No wonder my insides felt on fire! I will have to use the rx Nexium for at least 60 days PFC because it takes at least that long for it to heal. At least the insurance company approved the prescription for the next year even though it's expensive. If I have further problems the MO said to let him know because there are some other things he can try too. I will wait until after I'm done with the steroids because they can also aggravate the condition. I can't figure the steroid thing out. On one hand they're supposed to help the stomach issues and inflammation stuff and then they can cause all sorts of other craziness. I woke up yesterday with one side of my face red and puffy because of the steroids, but today it's fine. I do get lots of bruises from it though, especially on my stomach where I inject insulin. I look like a ripe banana lol!
My day in the chair was uneventful but long -- 5 hours! One problem is that one chair was out of commission and they had a lot of unscheduled sick people getting fluids and transfusions. The other reason was they added additional saline to my drips to help keep the taxotere from blowing up my veins again. The nurses thought I should be able to avoid the PICC to make it through my last infusion. Yeah!!
Got my Neulasta shot today. Had a lot of energy early on (suprisingly), went out to lunch and walked quite a bit. By the end of the day, I was REALLY tired. Fell asleep twice on the couch watching TV before dinner. A dear friend brought dinner to us, so I didn't have to do anything. Love those friends! For some reason, the metal mouth hasn't hit me very hard yet. Usually, I start getting it halfway through the Cytoxan infusion. I'm sure it's coming. I haven't heard of anybody being able to avoid it. Stomach issues have been minimal so far. One more day of steroids, so we'll see what happens after that. I have to continue with the small, bland meals which effectively puts a damper on my Thanksgiving! I had very bad chemo brain and shakiness today, but the activity did help with the shakiness. The fatigue is partly due to lack of sleep the past two nights (steroids of course). Hopefully I'll do better tonight.
Well enough of this book, hope everyone's week goes well!
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Sounds like there's lots of good news here. Terry - congrats on your last tx, Malinda - happy for your most excellent progress, Michelle - for getting your "normal" back!
Michelle - how long did it take to get your scarf from Good Wishes? I ordered mine about 5 weeks ago and haven't gotten it yet.
Barb - I have my Look Good Feel Better class on Monday. Was supposed to be last week, but got cancelled because of too few people signed up. Can't believe that with all the people who go to my cancer center! Anyway, now I have to go to a different site. Can't wait, I've heard such good things about it. Don't dread next week. Let's just look at it as that much closer to being done!
Hugs everyone!
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Enjoyed reading such good news from so many of you.
TallM= every one of those baby steps is one closer to victory!
Terry=good news and we'll all celebrate no pic line for you!!
Auntie= I also ordered my scarf several weeks ago w/no sign of one. Looking forward to it too!
My fever has finally left my building. We are back on schedule girls. Had my 2nd tx of the A/C today. My steroids have been cut down quite a bit and am taking pills to kick start my insulin naturally. I get my monitor next week to start checking those ever climbing blood sugars. I feel pretty good so far and am hydrating while I can. Go for Neulasta tomorrow and to see PS and hopefully get a good healing report!
I did sign up for chemo angels. I've found it to be really cool and uplifting. I ended up w/2 from different parts of the US. They send me cheer up stuff, cards, homemade cards, trinkets, and even got a sari from an bazaar in India. I'm glad I signed up. PM me if you're interested and I can get address for you.
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Hi All-
It sounds like a good week for all indeed:) So glad to hear. Just want to say a quick hi & that I've enjoyed reading everyones post:) There is definitely strength in numbers. I've used so many of the tips you've given & the info is priceless! I've even been able to pass on info to my Chemo buddies @ the hospital:).
Good luck the rest of the week. I'm taking a day off tomorrow from going to the hospital! I'm so excited:) The countdown is still on. Yahoo!
Hugs-
Malinda -
Hi All:
Has anyone experienced feeling light headed and faint when they stand or walk? I have had this happen twice and also ended up with cold sweats with both of these bouts. I don't have a fever, so not sure if I should be alarmed. I have had 2 rounds of chemo (FEC) and go for my 3rd on Monday. I go for blood work tomorrow.
Take care!
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Normandy-
I have had all yes. When I had my bad week last week I couldn't even sit uprigt for very long w/o feeling like I was going to pass out. The cold is a body response to protect itself. In fact when I walked I couldnt walk upright I leaned on my parents & was hunched over. At one point he nurse had to grab hold of me beacause I was going to fall. This week is much better & I think all the meds/Chemo caught up with me. I hope yours will pass soon. Mine lasted about a week. Not the most fun to be down but it should go away.
I also get still get night sweats even though I don't always have a fever. If I do get a fever it's been in the morning.
Good luck & I hope you get better soon!
Hugs-Malinda -
Well another A/C treatment is on for Thursday and I am just feeling better from this horrible cold so I hope it does not throw me back again.
I have decided I can only work part time/ 3 hours a day is the norm, any more than that and I run a low grade fever at night. I am really not that productive right now..but at least I get a few things done.
I am really trying to to this one day at a time and not get to far ahead of myself. Little baby steps. I do feel light headed a lot and I wondered if it has something to do with low blood sugar or something like that.
Any way - hope all the Oct ladies have a good SE free day.
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TaIIM: Thanks for your quick reply! This has been a busy week at work--and I also have my husband in bed with a chest and sinus infection and my daughter home with a migraine--so a full house these past few days!
Take care!
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Tappy-
When I can can work I can manage only 3 hrs at a time as well. I've tried to do 5 but find it a bit much. Baby steps for sure:) I'm glad your cutting back Tappy:) I hope the nasty cold leaves you alone & you can make it through your A/C Tx.
Normandy-
You're welcome. I hope all in your house get better soon. They say it gets worse before it gets better. Fingers crossed that you've had the worst.
Happy Thursday to all you wonderful ladies:). Hugs-
Malinda -
Ladies - the scarves will arrive, I promise. I think it was at least six weeks before I received mine.
Regarding the light-headed feelings, it is probably caused by low red blood counts. I was anemic and I experienced the feeling several times. I also had a fairly low blood pressure, and that can cause it, too.
Auntienance - great explanation of the esophageal reflux problem. I took OTC prilosec and then OTC pepcid and that worked for me. I took it every day until a couple weeks post final chemo. I was always in the chair for at least five hours. By the time I got an hour of hydration even before my pre-meds, then 15 minutes of saline between adriamycin and cytoxan, and the cytoxan took an hour, well it was just about 5 hours. When I switched to Taxol, same thing except Taxol was a 3 hour drip. Slow infusion prevents some of the headaches with cytoxan and the allergic reactions with taxol or taxotere.
Stjude - I hope you can get your blood sugars in control. Because I am diabetic, my steroid dosage with dose dense AC was just 6 mg on treatment day and none on any other days. Try talking to your onc about giving this minimal dosage a try. If you're not having any excessive nausea issues, 6 mg may be enough.
Small frequent meals got me through treatment and kept me mostly nausea-free. Even now, I am still not able to eat a "normal" portion of food. I didn't gain any weight during chemo, actually lost a couple of pounds.
Anyone (and especially you diabetics) who will be taking Taxol or Taxotere should discuss with your oncologist some supplements to prevent neuropathy. Here is a link to a Phase 3 clinical trial using acetyl-l-carnitine for prevention. I took it on my own and have not had a problem at all:
http://clinicaltrials.gov/ct2/show/NCT00775645
I also have taken L-Glutamine and Vitamin B6. I discussed these with my oncologist and she supported my taking these supplements.
You are all doing a great job! Keep it up, keep drinking, take care of yourself and listen to your body.
Hugs to all,
Michelle
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Michelle: thank you so much for your info! I always find it so helpful. I just ordered my hats & they said 6-8 weeks. It was so much fun picking out the ones I wanted & so nce of them to send them to us:) Thanks again for all the info:) We should call you the info guru (you're like "ask chacha":) I too hope you have a great day!:)
-Malinda -
Michelle, I already had neuropathy in my feet when I started TX. After the first round I had increased burning in my feet (usually I just have numbness). I started on B6 and it has made a noticeable difference. My mo also recommended alpha lipoic acid, but it seemed to be contributing to the stomach issues, so I stopped. I may try again after this is all over. I will check out the acetyl-l- carnitine
I can't believe I'm sitting here on day 3 drinking my one little morning cup of coffee (had to cut back the caffeine :-( and it still tastes good! What's up with that? Small blessings!
Cheers!
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