Regimens, side effects, and support from others going through chemo.
Posted on: Oct 18, 2020 11:37AM
I hope I can find others who will be starting chemo in November. I am having 4 cycles of taxotere and cytoxan after surgery since my mammaprint came out on the lower side of high risk. The plan is to cold cap. I am seeing my oncologist 10/22 to finalize details to start the first week of November.
Anyone that is a veteran - please let us know any helpful hints. I did read the helpful hints section and it was great!
Posts 31 - 60 (128 total)
Nov 10, 2020 12:18PM Jujumartin wrote:
I just finished my second chemo treatment. The nurse told me I will most likely lose my hair between now and next week. I have a wig and hats ready, but it'll still be weird to not have hair! Then everyone will know what's going on...I just finished reading Joan Lundens book called "Had I Known". It was a good read. She is honest about everything. Nice to hear about another woman's experience. I am using the Neulasta patch again. Had no problems with it last time. Here in Michigan it is sunny and supposed to be near 70! A year ago we had 9 inches of snow fall in one day! I plan to get outside and enjoy it. Hope everyone is doing well. We got this!
Nov 10, 2020 12:51PM Etincelle827 wrote:
I had my fist TC treatment Friday 11/6, and so far all the side effects seem to be from the steroids and the Neulasta shot. I woke up this morning (Tues 11/10) feeling about 90% normal, just that weird taste/feeling in my mouth and also sleeping quite poorly. The last two days I felt the effects of the Neulasta shot—like having a cold with body aches and fatigue. My brain is working much better today!
I'm not writing off the possibility of more side effects but for now am feeling lucky!
Also, the cold capping experience was something else (I used Penguin cold caps). It was a ton of work but surprisingly comfortable and definitely doable for the rest of treatment. I "pre cooled" for at least 2 hours before my infusion started out of an abundance of caution (didn't know exactly when the infusion was going to start) so I ended up having the caps on for 10 hours that day. I'm so curious to see the amount of shedding I get next week. I'm also scared to do anything with my hair beyond gentle brushing and VERY gentle washing, guess I'll just resign myself to unstyled mop for half a year =D
Nov 10, 2020 01:05PM WordGirl1968 wrote:
Hello good folks -- I'm starting the HER2+ chemo protocol on Monday. To be perfectly honest, I'm terrified...far more so than I was before the BMX. I'm nauseated by the smallest things (light sedation, bad odors), so that's one fear. I guess the mindset I use in order to prepare and endure is to read everything I can -- all the research and all the anecdotal info -- in order to feel like I'm exerting at least a little bit of control over the situation by being well-informed. Sometimes that backfires because it makes me panicky and overwhelmed. I don't really identify with the warrior mindset or the idea of being on a journey, but becoming a scholar on the topic is more resonant for me.
Anyway, my current concern surrounds Neulasta. I just hear terrible things about that bone pain, even with the Claritin on the side. I don't see that there are many medical alternatives, but I did propose to my doctor that I skip it and opt to strictly quarantine and disinfect during my nadir period. However, upon further reading it seems that infection can start from within the gut and you never really know what's in there that can cause the febrile neutropenia that Neulasta is supposed to prevent. So, I'm doubtful that he'll condone skipping the Neulasta but perhaps there's an alternative I don't know about?? By the way, I am in no way suggesting that anyone skip Neulasta, especially if you're over 65.
I have a world-class fear of pain. All feedback appreciated!
Nov 10, 2020 04:20PM Jujumartin wrote:
wordgirl1968, my experience with Neulasta has been great. If I had bone pain last cycle, I didn't notice it. I have taken Zyrtec daily for years (allergies), so maybe that's made a difference. I hope it doesn't cause any issues for you!
Nov 11, 2020 06:52AM Jujumartin wrote:
word girl1968, yes I am doing well. My first chemo round went very well with few side effects. I had a slight headache a few days, Foggy head feeling days 2-6. Diarrhea day 8,9. Slight fever day 11. Felt completely "normal" day 12-14. I only had to take anti nausea meds the first night of chemo. Very slight nausea woke me up during the night. The RN told me it's best to treat is ASAP so it doesn't get worse. Yesterday was day 1 again and I woke up feeling the slight nausea, so took a pill. I feel good this morning, but I know it's the steroids working, and the anti nausea med they pre treat with. She told me that stays in my system for about a week. The next big hurdle will be hair loss. I'm expecting it to happen any day now. I meet with a plastic surgeon this Friday to discuss options For reconstruction after right side mastectomy in April. Not sure I am on board with reconstruction....sounds like it opens the door to many future surgeries! Hope you are doing well. When is chemo for you? Juli
Nov 11, 2020 04:43PM sherichie wrote:
I feel exactly the same. I was first diagnosed August 24th. Had my bilateral mastectomy Oct 9th and just found out yesterday I have to do chemo. My first infusion is November 24th, AC every 2 weeks for 4 cycles , then Taxol the next for 4 cycles every 2 weeks. Then herceptin for the next 8 months, followed by tamoxifen for 10 years. ugh. I almost convinced myself I was going to be done with cancer after the mastectomy and all I had to worry about was my exchange possibly in April 2021. I've been reading the chemo forums and it's totally freaking me out. I hope all goes well for everyone on here.
Nov 11, 2020 04:45PM sharon0706 wrote:Hi WordGirl. Wanted to let you know how much your posts resonate with me.
Nov 11, 2020 05:10PM marie914 wrote:
Hello wordgirl and sharon0706,
My words of "wisdom" is I like to be prepared but if it makes you too nervous - stop googling Also what you see on some of the boards are the people who are having bad side effects and wanting advice/help. You don't see all of the many that do not do too bad. The doctors and nurses are great and they have so many weapons in their arsenal on how to fight side effects.
I was one of the few that the neulasta did a number on me but most people are fine especially if they use the Claritin.
The chemo itself was fine and the steroids make you feel energetic. The day of chemo is day 1. Neulasta was day 2. I started feeling bad end of day 3 and day 4 was the worst. Then I started feeling better every day. Some days it went up and down but lots better. I am having trouble sleeping which I never had problems usually so I am just more tired than usual. I even went and had another fill on my expander today I am on day 8 and I think I will be almost normal by the weekend. My treatment is every 21 days so I will have 10 days of feeling good I think. I am optimistic. I know my doctor will review my infusions and meds and see what they can do to prevent the neulasta from affecting me that way again.
We can do this! We are women hear us roar!
Nov 11, 2020 05:20PM Melbo wrote:
I’m from the July chemo club doing TCHP, my final round of chemo is next Friday and I cannot wait to be done. That being said, my experience, for what it’s worth, is that it’s all tolerable. I’ve had a whole gamut of side effects, but other than the fatigue there has been some sort of treatment that has improved the side effects. Mybiggest advice is stay hydrated - especially right before your infusions — and reach out to your doctor or nurse line about your side effects because chances are they can do something to help.
Nov 12, 2020 09:51AM Elledwriter wrote:
Today is the first day that I’m starting to feel a bit better after my first round of chemo 8 days ago. Chemo day was no biggie- did the dignicap which was also no big deal. Hope it works to keep my hair. I had to go get a shot the next day instead of the neulasta, since insurance wouldn’t go for it. I was pretty good with the shot- took Claritin. Did have a bit of lower back pain a few days later which went away with aleve.
The tough days started two days after chemo day. I felt like I had a bad case of the flu after being hit by a truck. Very hard to function, had three very bad days of feeling awful. Slightly better each day after that but still feeling brain fog. Maybe the worst of it was the rage I felt (my poor daughter :( I’ve read that it’s the steroids. Today - 8 days later- is the first day I don’t feel the awful rage. It brings everything 100 times magnified. It could be that I don’t really have any support from family- single mom, and upset that no one in my family has bothered to ask how I am doing. 😔
Anyway, I think everyone has different experiences going through all this. I know we all get through it and are grateful for the medicine which allows us all to live longer and healthier lives. Just think back to even fifty years ago, we didn’t have the medicine available like we do now. Trying to stay positive knowing this is just a small blip along the road and worth it all in the end.
Next chemo is the day before Thanksgiving, and I’ll need to get the shot on Thanksgiving. Must call them to be sure a nurse will be there on the holiday.
Wish you all well during these trying times
Nov 12, 2020 10:28AM marie914 wrote:
Hello Leslie (Elledwriter) We are here for you. Sometimes family does not know what to say or feel uncomfortable so they avoid us. :( Big Hugs to you.
I started the same day you did. I am also using the Dignicap. I am getting taxotere and cytoxan. What chemo are you on?
I had bad reaction to the Neulasta but maybe not - maybe it was just chemo. I felt bone pain though. if day 1 is the day of chemo Wednesday for me, then late on day 3 and day 4 and 5 felt awful. Day 6 and 7 were a little better. Day 8 was better and today is Day 9 and I feel lots better. I can't get used to that nothing tastes good and the drinking is the really hard part. Everything I used to like to drink tastes awful so trying to find new things I can tolerate so I won't get dehydrated.
Nov 12, 2020 12:24PM Elledwriter wrote:
Thanks Marie! I am on Taxotete and Cytocan - the same as you. So far, I don't have a problem with taste. I drink a lot of liquids, always have. Lots of water and also diet ginger ale, which makes me feel a bit better. I'm sorry your having the problem of not enjoying food/drink now.
I've noticed that at night I sweat like crazy, going from cold to hot and waking up with wet hair. Ugh. I'm trying to only wash my hair once a week with a sulphate/ paba free shampoo. Normally that would be fine, but the night sweats make it unpleasant. Dignicap mentioned not to wash hair more than 2x week, and only use conditioner on the ends and not the scalp, but no conditioner on chemo day
I didn't do neulasta ,but a bio similar drug given as a shot the next day. Udenyca is the name. They said to take a Claritin day before , day of and day after the shot. I had minimal issues with it, but I also have always used Flonase every day for years and that might help? You might want to call and ask if the Udencya might be better for you?
We're on the same chemo schedule- next is Nov25, Dec 16 and last one Jan. 6. After that I'm supposed to wait about a month and thenhave 3.5 weeks of radiation. Then hopefully I'm done! Can't wait for that day!
Nov 12, 2020 01:26PM WordGirl1968 wrote:
Elledwriter: I'm curious about your steroid dosage. Do you think they could lower it to reduce the "roid rage?' I'm totally susceptible to that, too. I was once treated with steroids for a cluster headache in the ER and I felt completely psychotic for several days. I told this to my oncologist ahead of my chemo (which begins on Monday) and he prescribed a very low dosage (2mg) of the Dexamethasone. I hope it's helpful but I'm nervous about even the low dose.
Sharon0706, Sherichie, and Marie914: Thanks very much for your words of wisdom. I'm trying to take it day by day but it's so hard to anticipate pain and discomfort. I took the good advice of pulling back on the reading about chemo that I was doing. Instead, I'm just trying to gather supplies and prepare physically.
Jujumartin: So glad to hear things have gone relatively smoothly. I hope that continues!
May we all endure and move along to easier, happier phases of our lives.
Nov 12, 2020 03:10PM magpie4121 wrote:
Marie - the bad taste is my biggest problem now too! I started last Friday, so this is Day 7. I had some back pain that I don’t know if it was related to the Neulasta or not. Generally just felt bad for a few days, but I’m mostly doing better now except that everything tastes funny! Food still smells really good, so it’s disappointing when it all just doesn’t taste like much at all. My physical therapist had breast cancer 10 years ago and went through chemo and she said the bad taste gets worse over the course of the treatments and took her a few months to get totally back to normal.
All things considered, things could be a lot worse. Since it’s all cumulative, I’m sure it will get worse, but each treatment is one closer to the end.
Wishing you all the best
Nov 12, 2020 10:37PM sharon0706 wrote:
Hi Julie. Hope you are doing okay. Are you doing cold capping by any chance? I am starting TC treatment on 11/24. I had planned to get a wig before treatment, but the nurse advised that if I try cold capping that I don’t necessarily need to get a wig until I need it. I like to be prepared and am trying to figure out if I should just find a wig next week anyway
Nov 13, 2020 01:34PM Jujumartin wrote:
I opted not to do any cold capping. I am day 18 and hair is beginning to fall out. I do have an appt for Monday to have my hairdresser shave it. I have hats and 2 wigs. A friend told me about PaulaYoung.com Less expensive wigs. Best of luck to you!
Nov 13, 2020 02:26PM Elledwriter wrote:
I called my doctor yesterday and told her how horrible the steroids were for me. She said I could cut my dosage in half- which will now be 8 mg of dexamethasone instead of 16. Still seems high to me, but I guess it is supposed to help with the chemo. I have an appointment with her next week to go over how I did a with the first round. I still feel very off. I think I will try to be moving around more than I have been. Should help.
Curious to know the dosage of dexamethasone others are on with TV chemo.
Nov 13, 2020 03:38PM marie914 wrote:
it looks like I am getting 4mg of dexamethasone twice a day; the day before and the day after chemo. The day of chemo they are giving me 10 mg through my IV.
Nov 13, 2020 07:27PM Elledwriter wrote:
That sounds more reasonable Marie. I’m going to ask why mine is so high. No wonder I was so crazy. Argh!
How did that dosage affect you? Did it make you rage or sick feeling? I wonder if they prescribed too much to begin with. Each pill is 4 mg- but mine said take 2 in the morning and 2 late afternoon day before and day after chemo. I’ll ask what mg it is at infusion
Nov 13, 2020 08:50PM JoW888 wrote:
Glad to have found this group! I've been reading the posts and have learned so much. I received my Oncotype score yesterday and since doing chemo would reduce the recurrence risk from 12% to 6%, I decided to go for it. Seems like things are now moving again! I have my port placement scheduled for Wednesday and chemo should start on 11/23/20. I'll be having 4 rounds of Texotere and Cytoxan... TC I guess? Sorry, still learning these abbreviations! I'm also trying to prepare as much as I can before chemo starts. Got my teeth cleaned today. Will be having my hair cut super short next Friday and will be shopping for head wear this weekend. I looked at using cold caps but I think it's too much for me to handle at this point.
Just wondering... does anyone have family members living in the same household as you who are working or going to school while you're having chemo? With Covid cases rising here in TX, I'm torn with this issue. My husband can work from home for the most part but our son is currently doing in-school learning. I discussed this with my oncologist and she did suggest taking the usual precautions but was wondering what you all are doing to stay safe.
Ever since my diagnosis, I feel like my life has "stopped". Moments where cancer is not on my mind are rare but I had a moment yesterday when listening to the 80s music while grocery shopping. It felt so good, For a moment, I felt like things were normal again. I have decided that I will start my subscription again to Sportify, maybe music could help me through chemo.
Thanks for reading my post and may we all get through this so that we can get on with our lives!
Nov 14, 2020 07:26AM Jujumartin wrote:
Welcome...sorry we all have to meet under these circumstances. Yes, rock out to all the fun music you can! That helps me as well. My husband does go into his office, but it's just he and a secretary. I have a college sophomore who lives in a house off campus with 4 boys and I have 2 high schoolers at home doing virtual school. I spoke with my MO (medical oncologist) about face to face school. There is talk of the high schoolers going back before December. Out Covid numbers are rising in Michigan as well. The MO said it isn't ideal, but as long as they wear the masks and social distance etc. She is ok with it. I have to ask my college son to self quarantine before coming home for Thanksgiving. I too am having more blocks of time where I don't think about cancer. It's a nice mental break! Good luck as you begin treatments. I just finished round 2 of AC. Two rounds to go before starting Taxol for 12 weekly treatments. Please reach out here, there is such wonderful support. Juli
Nov 14, 2020 01:29PM Etincelle827 wrote:
Sorry you felt so bad after chemo. I had a pretty bad time on the steroids too—my doc had me on 16mg dexamethasone daily for 3 days, plus the IV dose of course. I was pissed about the side effects and am definitely going to ask to have a reduced dose next time—but it's important to keep in mind that the high dosage is the reason we aren't experiencing worse side effects from the chemo (or in my case, no side effects).
Personally I didn't sleep for a week and was super scatterbrained. When the steroids finally started wearing off 5 days after stopping them, my blood pressure dropped so low that it hurt to stand up after sitting. Two days of that and now I am feeling better, BP is still low 104/64, but I'm finally sleeping, and a rash has appeared where the IV was in my arm. I guess that means they've worn off at last. Dexamethasone has a half-life of 36-72 hours, so it stays in your system for a LONG time.
Cheers, and thanks everyone for contributing, it's helpful to compare others' experiences with this.
Nov 14, 2020 01:38PM Melbo wrote:
wow 16mg dose of dex? That seems like a lot. I get dex in my iv on chemo day and then take a 4mg dose twice a day for two days after chemo and that’s it. My very first infusion nurse also told me I didn’t have to take the dex 12 hours apart — she recommended taking it first thing in the morning and then with lunch or in the early afternoon so it wouldn’t mess up my sleep schedule so much. I’ve done it that way since the beginning and while my sleep is somewhat iffy the couple of days after chemo, I can at least sleep and don’t suffer from insomnia.
Nov 14, 2020 02:18PM JoW888 wrote:
Hi Juli, thanks for the welcome! You mentioned in one of your posts that you take Zyrtec which has a different active ingredient to Claritin. Does it work just as well as Claritin would? I take Zyrtec too as it's more effective on my allergies. I need to start reading about Neulasta and Neuropathy so that I'm prepared.
I have a high schooler too and he does better doing in-school learning. I feel bad for him if he had switch to online learning all of a sudden. Since he's a teen, we rarely see him anyway, he's in his room most of the time so I figured I'll just be a little more careful around him.
Nov 14, 2020 06:10PM Jujumartin wrote:
I've been taking the Zyrtec for years. Not sure if it's the same active ingredient as Claritin, but I've not had any of the bone pain with Neulasta. All in all my chemo experience so far has been great. Very few side effects. Last round I did get diarrhea and a slight fever on day 9,10. I'll be curious to see if that happens again this round. I met a friend today and we walked in the woods for an hour with our dogs. It was a good day. Hope you stay well.
Nov 15, 2020 07:39AM Elledwriter wrote:
Thanks for the note Enticelle. I’m seeing my oncologist on Wednesday to go over my first chemo. It seems not many people got the high dosage of steroids that you and I did. It was a nightmare for me- when I tried to sleep my heart was pounding hard and I had such bad night sweats that I’d be soaked in the morning with my hair wet as a rag. I felt I could barely move. Chemo was on a Wednesday and fine Thursday, but Friday through Monday was the worst. The depression and anger were overwhelming. It makes me really dread the next one. I’m not sure if this is a combination of steroids and chemo together.
Do others feel like this with a smaller dose of steroids? Is it the chemicals from the chemo? I asked one doctor before starting if this would make me feel debilitated. She said no..,something must be wrong then , because I certainly was
Nov 15, 2020 10:48AM Melbo wrote:
I feel generally feel okay with the 4mg of dex. It offsets my chemo symptoms for a couple of days, generally keeping me propped up and feeling okay, albeit a little spacey, especially in the evenings as it’s wearing off.
I don’t know if it makes a difference, but I’m in TCHP chemo, so maybe they prescribe the much stronger steroids for the other chemo regimes? Either way it seems like you can at least ask if the dex could be reduced since it’s causing such adverse reactions.