Starting Chemo September 2021
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Mindthief and Spades-- and anyone else on AC+T-- I'm emerging from round 3 and have to say that it was much more like round 1 than round 2. I had a personal message from another thread when I found out I'd be undergoing chemo from someone else on AC+T who said the second round was the worst, so I am now conferring. Here's to getting through it and a happy weekend!!
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Hi Debbie, you are not alone.. I have had nosebleeds pretty much from week 2 on. I do live in a very dry climate, and this may have something to do with it. I haven't found anything to help with them, and figure chemo will end, my capillaries will get stronger, and I'll eventually stop having to carry a box if tissues everywhere I go.
You have my empathy. Really hate nosebleeds. Hang in there.
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All of you on ACT, I'm so sorry, and wish it were easier. I'm just on Taxol and feel like I'm whining any time I complain about it because I think of you and know that protocol is much harsher. Hugs to you all.
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AMG2 - don’t apologize! We’re all in this together, whatever our protocols may be
Hummingbird - i may be a bit of an outlier, since my nausea was SO bad in cycle 1. Generally I was much more tired in cycle two and so far cycle 3 is going okay but we’ll do how that progresses! I’m glad 3 is going better for you
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Reporting back on the diarrhea - well my doc had me stay on a clear liquid diet yesterday and it did the trick. Today so much better and just eating a bland diet per instructions today. I feel back to normal, thank goodness.
Hope everyone is having a good Saturday.
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Happy Sunday to everyone. I wanted to ask those who have already had either a single or double masectomy about the surgery/recovery and any tips/tricks that would be helpful for before and after. I am having a double masectomy in January when my chemo is finished and want to be as prepared as possible on what to expect. My sister bought me a masectomy pillow thing and a double drain holder thing for the shower. Thanks in advance.
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Hi Debbie, I can chime in on this, although I had a partial. Three things I found most helpful post surgery were my My Pillow Roll and Go pillow for the car, the bed to rest my arm on, sleeping at night, etc. I carried it everywhere and it was great that I could compact it and throw it in a bag. Second, one of those college dorm-like bedrests with arms. It just feels better to have your arms supported while sitting. And, most important, some alcohol wipes to get all the sticky tape they put on the dressings off. I ended up pulling skin trying to get that stuff off, which is the last thing I needed with all the healing. I'm 9 weeks post op and have been using silicone patches (Scar Away) to minimize the scarring, which work great. Hard to find on the store shelves so I ended up getting on Amazon.
Mindthief--forgot about all your nausea. I'm so glad I avoided all that and happy you have it under control. My onco nurse said to me that the body gets "kinda used to" the chemo drugs and a lot of women build up a tolerance. I didn't really believe her but maybe she was right?
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Debbie, I had a single Mx in April and will have the other side done next month. I did not do any reconstruction.
I stayed in the hospital one night, and only needed prescription pain meds for about 2 days. Be sure you have constipation meds on hand. Since I don't own a recliner, I bought a wedge pillow for sleeping that I used for 4-5 weeks. My husband helped me maintain my drains because I found it tricky on my own. Definitely keep a small pillow in the car to protect yourself from the seat belt. I found driving awkward until the range of motion in my arm started noticeably improving about 4 weeks after surgery. Do those arm exercises!
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Ewwwwww, just noticed my nail beds are turning blackish, guess I'm getting "chemo nails".
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Debbie - I had a mastectomy in July without reconstruction. I agree with the list so far: wedge pillow for bed, support pillow for under your arms, seat belt pillow, lanyard to clip your drains to when you’re in the shower, also, robe with drain pockets, hand held shower head will help with independence in the shower quicker. I also started with a physiotherapist once my staples were out which was very helpful with range of motion, cording, and scar management. I have full range of motion now.
Hummingbird and mindthief - okay so it seems as though maybe round 3 won’t be so bad? I’m going to hold onto that because I found round 2 extremely challenging
. But it also sounds like new symptoms keep popping up and they don’t sound pleasant (black nails???) ! I do find myself experiencing more anticipatory anxiety during my ‘good’ week when I think about round 3 and feeling so sick again. 0 -
Thanks all for the great info re. the masectomy. I am also not having resconstruction. (these boobies have served their purpose
). My daughter in law is buying me these yarn/crocheted inserts to put in a bra when I feel the need for a little shape. She says they are so much more comfortable than the plastic ones. Today (Day 11 of Cycle 2) I am aware that the tips of my fingers are tingly. It's not super unpleasant, just a sensation I'm aware of. I have been doing the ice bags during infusion of taxotere (or maybe its carboplatin). Not much for appetite and my taste is still gone. On the upside the Big D has finally tapered off, thank goodness. My doc had me do interim blood work yesterday to check electrolytes and all seems good.
Hope everyone enjoys the rest of the weekend!!!!
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I was told to ice hands/feet during both, Carboplatin and Taxotere since both of them can cause neuropathy. It is quite long, 2.5 hours. If I recall right C was 1.5 hours and T was 1 (or vice versa?)
My second cycle is this Friday if everything goes well. This time I will also try Neulasta. First cycle I could do it without but they are too cautious and made me go to hospital 3 times for checks last week. I am trying to avoid it. Anyone else going through it without Neulasta?
When I read about surgery I get so anxious :-( I am not used to ask people for help for anything and from what i read for weeks after that I will be dependent even to go to the bathroom. That worries me a lot. When I am in survival mode, diarrhea, stomach issues or fatigue, I can't get too much worried but now that it is my good week, I keep on thinking about it. How stupid actually, I should rather be relaxing and enjoying my time *sigh*. Seems I will need axillary complete lymph node dissection (since they can't radiate it again, I had radiation given to that part before) and I am anxious about side effects, not being able to swim free style after that, which is one thing I like a lot, I usually plan my holidays around it. Then I am not sure about leaving the right breast or not, if I will get a complete response or not.
I like your positive attitude Debbie, you seem to be getting ready and feeling good about it being planned. I am still in denial I think. Yet I read the tips from Spades, TXL, Hummingbird and took notes.
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Sarah_78 - re. getting both breasts done - I only have issues with the right one and I did consider NOT doing the left one which has no issues but as this journey has progressed I realize (very strongly) that I don't want to have to go through this again should something pop up on the left side. I only want to do chemo once --- and so off they both come!!!! I will be better balanced and hopefully not have to worry about anything breast cancer related again. I am trying not to stress about the surgery because so far I have done well with previous surgeries that I've had and been able to manage mostly everything myself. I too hate asking people for help with stuff. My mom was very sickly all my life and I never wanted to be like that so I push myself in the opposite direction. Hopefully the same with this!!!!
Enjoy your "good week" (I am waiting for mine to start soon) and know that you will be that much further to being all done after the next treatment!!!! Whoo HOOO!!!!
Happy Monday!
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Spades2525 - I crashed pretty badly yesterday (day 3). Fingers crossed today is better. I think the fatigue may be cumulative to some extent, and the other symptoms depend on the cycle. I also did a 36 hour fast before cycle 2 and 3. I’m not sure if it had any benefit except making me feel like I was doing something, lol.
I’m going to be watching the mastectomy discussion as well. I had a lumpectomy but there’s still some debate about whether the margins were enough, and I’m also waiting on genetic testing, so I still may end up with no more surgery, single MX or double. Did anyone in the group opt for reconstruction or planning on delayed recon? I’m not sure how I would feel about being flat, but also have been told I don’t have great options for reconstruction.
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Mindthief - in regards to reconstruction - one of the main reasons I opted NOT to go for it is that it seems to involve multiple return procedures/surgeries for inflation, etc. and I am definitely not a fan of going back for more. In the past 4 years I've had both knees replaced, a hysterectomy and now this. I want to be done as soon as possible!!!!!! Plus I'm 63 and who needs boobs at my age anyway. Kauai is calling my name!!!! Hahaha.
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Hi All,
TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)
Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)
Register in advance for this meeting
After registering, you will receive a confirmation email containing information about joining the meeting.
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mindthief - day 3 is typically my horrible crash day too .. I’m thinking of you and hoping the bad days pass quickly! In terms of reconstruction, I wasn’t given the option at the time of mastectomy because COVID restricting operating hours, it would have delayed my surgery.. I still have reconstruction on the table but now I have to wait until 6-9 months post radiation.. I am also not a good candidate and depending on how my skin reacts to the radiation that may further reduce my chances. I’m also waiting on genetic testing.. so that information will add to the discussion.
I thought having only one breast would really bother me but oddly I have managed that change better than I thought. I wear a prosthetic occasionally which, in clothing, works really great for looking symmetrical! I’m not sure how I would feel without both breasts … I have a feeling that would be much harder.
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I read that most have moved on from the worst days of cycle 2, my 2nd infusion is on Friday so I will be going through it again. Too bad I was just feeling like myself for the last week.
Any tips on Claritin before Neulasta. I decided to give it a shot (literally ;-)) but my team doesn't know much about Claritin. I should get it one day before? How many times? Tips are much appreciated.
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hummingbird, oh no, I'm so sorry about your nails! I've been icing and also using something called Polybalm on mine, and between the two, I've not had too much in the way of nail issues, but I'm also only on taxol + herceptin. Polybalm does have a small placebo controlled trial on its use for nails, and it convinced me to try it. The company I ordered from (Hope and Beauty) has been fantastic to work with.
I hope something brings you relief.
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sarah_78 - I’ve been taking Claritin the morning of Neulasta (I do my injection in the afternoon) and the following two days.
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Sarah_78 - I have been taking Claritin the same day as I get the shot and its worked so far - no bone pain in both Cycle 1 and 2. Hope your next Cycle is not too bad. Mine will be next Thursday 21st. Ugh, I am just starting to feel better from the prior one. Oh well....
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Hey Sarah-- I get the Neulasta patch at each infusion, which self-releases the following day. My instructions say take Claritan for 5 days (once daily) starting the day after infusion but my onco nurse said to start immediately when I get home the day of infusion, which I've done. I do get some bone aches on the last day of my "down time" but it's completely tolerable. I have no idea why an allergy medication would help with a white blood cell booster, but I realize a lot of things don't make sense anymore!!!
AMG-- I anticipated needing the cold gloves and booties while on Taxol but didn't think the nail thing was a part of AC. Guess I was wrong. My last AC infusion is Friday so I'll ask about the balm. I notice it's much worse on my right hand than my left but nothing is lifting or getting too icky--just purple!
In general, I feel pretty beat up and am not looking forward to Friday, except it's the last of the first part. My body feels broken, toxic, damaged and over it....
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Hummingbird - I totally get what you're saying. I'm feeling pretty beat up myself and am expecting cycle 4 to be potentially the worst of the bunch. It's not really one specific thing that's gotten harder, just the cumulative effect of dealing with a rotating carousel of side effects. Good luck tomorrow - I hope the chemo powers that be go easy on you.
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Hummingbird - hope your session tomorrow goes well and the effects not too bad. We will all be there eventually. Sending good thoughts your way
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Thank you for the Claritin inputs Hummingbird, Debbie and mindthief. They gave me a shot (called Pelgraz), my husband will administer it. It seems to be the same with Neulasta. They told us to do it in 48 hours though so will be Sunday.
Hummingbird, you also had chemo today? Me too :-) You did AC I think?
This time they wanted to give Herceptin in half an hour, I made them prolong the time (1.5 hours). It is written "if no allergic reaction, reduce to 30 min" Anyone has this too? I read in this forum with fast administration, some people had problems. Why risk? I don't understand it.
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Hi Sarah_78 - you survived! Is this treatment #2 or #3? I have #3 on Thursday, same meds as you. Each time I've had the Herceptin I've had a mild reaction so they probably won't speed it up for me. Not sure what that's about but I am fine with doing it slow. Hope you have minimal side effects.
Question for anyone who has lost their hair like me - mine went on Day #15 of Cycle 1 - but I still have my eyebrows so far (Day 16 of #2 today). When did anyone else lose the eyebrows?
Happy weekend to everyone!
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Hi Debbie, I just had #2 yesterday. What kind of a mild reaction do you have? I read eczema between people who were given it in 30 min and those who were given it in 1.5 hours. I have that on my hands and some patches around my body so dreaded it might be more if they rush.
I still have my eye brows but I am behind you so it won't help that much. I have seen your lovely photo, you have lots of those so probably you will never lose them fully? If they grow while falling out, it might look normalish with some eye brow fill in, it is what I am hoping anyway.
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Hi Debbie and Sarah! I had cycle #4 of AC yesterday and am GLAD that is over, although I have 2 weeks of side effects to deal with. I start Taxol in two weeks, which everyone has told me is easier with about the only side effect being neuropathy, which I'm going to try like mad to avoid. My taxol will be dosed every week for 12 weeks (happy holidays!) instead of every other for six weeks to help avoid that.
My hair loss has been weird. I shaved my head on day 16 after so much feedback to do so, but it really didn't start to fall out until last cycle, so even still, there's a lot of 1/4" hairs to deal with. My oncologist told me yesterday that the rest and everything else, will fall out on the Taxol. My eyebrows are a little thinned but still there, although I have noticed a couple gaps in eyelashes. No leg or underam hair has grown so shaving is a thing of the past, for now anyway. Maybe your Taxotere is similar to Taxol, perhaps why losing hair is quicker for you?
I'm going out to play in the garden and do some harvesting/canning before the big fatigue fall on Monday. Happy weekend everyone!!
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Thank you mindthief, yes they said it was the Emend or Zofran through the IV. They skipped it the second time and what a difference. I can put up with mild nausea (use prochlorparazine) and diarrhea (use Imodium). I still had a sinus headache, mild compared to that first migrainish one. I use Sudafed and a Vick's inhaler, along with the Claritin they have me on for the Neulasta - that keeps it manageable. The weather here has been rainy and cold then hot, hence the sinus issues.
I hope you are doing well!
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Hi Sarah_78 - the mild reaction I had to the Herceptin was a tickle in my throat that made me keep wanting to clear it and the nurse noticed me doing that, she said that was the start of a reaction so they gave me IV Benadryl and steroids. That seemed to take care of it. Going forward they will give me those two IV meds ahead of the Herceptin to hopefully aleviate anything. I'll know for sure on Thursday.
Also just noticed the other day that my skin in peeling in patches on the front of both hands, even though I am moisturizing like crazy. My nurse says thats very common.
Hummingbird - hope you have fun in the garden - that's my happy place too!
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