Weekly Taxol group
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Ingerp, my treatments were long enough ago that I honestly don't recall some details. I think for my first infusion I was scared about nausea, so probably didn't eat breakfast. However, I never had any nausea while on taxol/herceptin, so I subsequently always ate something before going for treatment. Your first treatment will be longer than subsequent ones, since they run things slowly to make sure you don't have allergic responses. For me, I cold capped so I was at the center for 6+ hours every time (longer the first time). My helpers and I always brought something for lunch.
3) clothing. since I was cold capping I dressed in sweatpants and a flannel shirt. I had a port, so no issues with sleeves. You'll see a variety of clothing options - depending on whether people are going on to the office after infusion. I would say just dress comfortably.
4) water. Particularly with cold capping they encourage you to drink a lot of water. My helpers always reminded me to drink up, and refilled my water constantly. After a couple hours I was hitting the bathroom every half hour. You just take your pole with you. I really didn't remember to hydrate as much when I wasn't actually being reminded by my cold cap helpers...
5) I didn't take claritin - usually used if you're getting neulasta, which you won't for weekly taxol. Some people get bone pain anyway on taxol; I didn't, maybe because of the pain killers I always take for arthritis (tylenol and glucosamine chondroitin). Also, heartburn is an issue for some - I was taking daily omeprazole at the time, but still had some heartburn episodes and took extra pepcid to help with that.
6) Diarrhea/constipation. I had both. Mainly diarrhea after the first infusion; had to buy emergency supplies for that, including the baby diaper rash stuff (can't think of the name right now). Later I had to buy supplies for constipation. I tried a variety of things, including Miralax, senokot, smooth move tea. I would suggest you stock up before starting treatment, so you don't have to run to the store. I wouldn't take immodium before treatment - wait to see if that is the effect you have.
7) Going to the gym is a good idea, I think. I tried to go 3 times a week during treatment, although I didn't do anything too strenuous because I didn't want my head to get sweaty while I was trying to save it with cold caps. I think keeping moving really helped me, and it's usually very doable on weekly taxol.
8) It's usual to give you benadryl in your pre-meds, and it has a tendency to make you sleepy. You might not need much in the way of entertainment during your taxol infusions. Once you move on to herceptin only, you don't get any pre-meds so you can read or whatever, but you're only there for a short time.
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Ingerp, forgot to address a very important issue with taxol, that you didn't ask about - peripheral neuropathy. In my reading about taxol and preventing neuropathy, I knew that a combination of l-glutamine and vitamin B6 had been used to good effect. You can do a search for preventing chemo neuropathy with l-glutamine and find some articles. I talked to my chemo nurses about it, and their suggestion was to wait to see if I started feeling the tingles in my hands and/or feet, and at that point start with l-glutamine and B6. (Some people never have any problems with neuropathy.) After the 3rd infusion I started getting tingles, and my nurse gave me several pre-measured packets of l-glutamine to try. The packets are "gluta-solv" and are 30 grams, which is the amount you need to take daily, divided into two or three "servings", mixed with a liquid of your choice. I was advised to take it for 4 days - day of treatment and 3 subsequent days. When the packets ran out, I bought a tub from GNC and measured my own doses - 15 grams is about a heaping tablespoon. I took 100 mg of B6 daily. I never developed any serious neuropathy.
A lot of people are now icing hands and feet in an attempt to prevent neuropathy. Neuropathy emanates from the spinal cord, so I'm not sure how icing would stop that. Icing hands and feet does help protect the nails from damage, which apparently is fairly common with taxol and taxotere. I did not ice hands and feet - and would not have even attempted it since I was freezing my head! - and did not have any nail problems. It is just one of those SE's that some get and some do not.
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Excellent info, patin. I'd forgotten about the heartburn many experience. Roger that on the Claritin. I've researched cold capping but in the end will not try it. I've also seen about the icing hands and feet--I know this sounds weird but my hands and feet tend to be pretty cold anyway and I have it in my head that I'm going to wear flip-flops during treatment to help keep them that way? Also, my MO spoke to this briefly--she said the half-life of taxol is <??>, so in order for the icing to actually have an impact you'd have to do it for like 24-36 hours. Re: the neuropathy--she also said she monitors this very closely and will treat it <not sure how> if I start experiencing any. Re: nails, I remembered that back in the day we used to eat Jello to strengthen our nails. I might try that--haven't had it in a couple of decades but figure this might be in the "couldn't hurt" category.
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Ingerp, I eat a nice healthy meal the night before chemo- maybe a hearty salad. I've been craving red meat since starting taxol. It's lowered my red blood cell count, so I've been adding beef the day before as well. Morning of I eat a piece of toast with avocado and green tea, and a piece of fruit. The pharmacist suggested eating with the premeds that I take an hour prior to chemo would be best for my stomach. I just had my 6th infusion, and will continue this routine. I wear jeans or sweats and take a bag of things that includes a blanket, neck pillow, ipad, water bottle, etc. The zurtec that I take (instead of Claritin) makes me sleepy so I nap. Typically I'm up all night due to steroids kicking in. Drink fluids by the gallons! The dehydration is real. The stomach issues are no fun. Alternating between Big D and constipation seems common. Fiber supplements can help with both.
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- hi ladies,
- Been reading all your posts,it’s so comforting to have this site.
- What prompted me to post is downdoggie mentioning avocado. I love avocados and have always eaten them more than a few times a week.
- However last night I read about foods that affect chemo, I read that we should avoid many foods and avocados was in the list of things to avoid. They had lists of eat and don’t eat foods and how they affect different types of chemo. My goodness all my favorite foods were just about in the don’t eat list that it freaked me out. I mean it explain why for each food before breast cancer, during and after for life.
- I will try and post a link if I figure out how because it’s so very important since it goes into how certain foods even bring the cancer back and how some prevent it.
- Anyway. I went through my 4 A/C and I start THP this coming Wednesday and it has me totally freaked out because I already have neuropathy and once twice I took meds that cause neuropathy and I was bedridden for 3 months each time because of it.
- I need to continue to work or I will lose my State licensing. My job does not qualify me for FMLA and I’ve managed through red devil to be in more than out but now wow if I get that bad reaction my entire life will change. This cancer sure does not only take away your health. I worked 30 years right out of college to get where I am and now I can lose everything.
- If taxol as someone said emanates through the spinal cord I’m sure it will happen because that’s where my problem is with 7 all messed up disks.
- So I’m asking God to please please let me suffer ok but not my children for the life they have will change even more.
- I’m already on a low dose of gabapentin so maybe idk. I use that idk frequently lately so that’s why I chose it as my name here. Silly I know. Ha lol I know.
- Ok I’m sorry to be rambling but no one understands what I’m going through.
- I have that strong game face and attitude and sick of hearing oh you don’t even look sick. Ha really ok well step into my body with A/C and pushing to get into the office.
- I pray everyone who has side affects get better and those who don’t stay that way.
- I’ll post more often instead of reading only. I think I brain was saying ok if you don’t post you’re sort of not really going through this.
- Can’t think of the big picture, thinking one step at a time. It’s such a long journey and difficulty. Yes we are strong warriors. Chin up right ?
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https://foodforbreastcancer.com/
THIS LINK IS THE HOME PAGE AND I BELIEVE FROM HERE YOU CAN LOOK UP THE FOODS FOR ALL TYOES IF CHEMO.
Get ready to say “WHAT ?
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Downdoggie thanks for the info. Not to put too fine a point on it but how bad is the big D? Did it interrupt your life? I don’t want to be afraid to leave the house. And what kind of fiber supplement do/did you take? (Your screen name makes me a little sad—my BS didn’t want me doing too much with my upper body so I haven’t done yoga since my surgery. :-( )
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Don't know if I will hit everything on Ingerp's list but I will try.
1 and 2). I ate my usual meals both the night before and the morning of chemo. Don't skimp on protein during chemo. I admit that I made very few diet changes in the last 18 months and am comfortable with that decision. HapB has started a thread for "healthy" eating and feels quite strongly about it but giving up my steak and ice cream would become a quality of life issue for me. My chemo center had a coffee bar (using that term very loosely) but anything else one wanted to eat was out of a machine. Especially the first few times, you will be there at least half a day (for me it was visit with MO or PA, then blood draw, then "precocktail" which took 40 minutes after the blood results came back, then Taxol (and hour as I recall but it may have been 90 minutes) and then 30 minutes of Herceptin. So take a snack. I usually took a "Kino" energy bar and a bottle of water. Seems to me that occasionally I took a piece of fruit (quartered apple for instance.)
2 and 6). In terms of day before preparation - Because I have never been a daily "pooper" I learned to manage the constipation/diarrhea issue by being certain I was pretty cleaned out on chemo day. For me that was a daily probiotic and miralax (which I drank with diet leomonade) and some weeks a laxative the day before. Once I figured that out, the big D did not keep me home.
3). Jammies work but I usually wore sweats. If you are not using a port (I'm glad I did), I would think short sleeves with a sweater or jacket would be best. My center offered not very exciting "blankets" but some people brought their own.
4). Water, water, water everyday, not just chemo day. You will be able to push your IV pole into the restroom as often as you need to go. In fact, I always picked a chair close to the restroom. In addition the the water you are drinking, they are pumping fluids into you the whole time, another reason for comfortable easy clothing.
5). I took (and continue to take) claritin. I take the generic from where-ever I'm shopping (usually Walgreens). I'm not certain why it helps, but I think it has lessened my joint pain. I was already using Biotene toothpaste and mouthwash. While I was given anti-nausea medication to take by my MO, I figured out fairly quickly that I wasn't really nauseated, just having some acid reflux. I took nexium on a daily basis throughout taxol.
7). Exercise - I'd play it by ear. The pre stuff has both benadryl and steroids so it may depend on which has the most influence on you. I wouldn't plan a big gym day. Sitting around and pushing your IV to the bathroom can be pretty tiring. Take a short walk rather do a gym workout. Most of us find that it helps to do some moving all week.
8). I always took my kindle and sometimes my laptop but I'm not much of a movie person. Most days I didn't sleep, even with the benadryl. As I mentioned, I had a port, but I would think a newspaper would be hard to manage with an IV.
If you haven't had a tour of the chemo area, I suggest you ask for that. I have to admit that mine wasn't very "user friendly" in terms of frills but the staff was wonderful and it was 2 miles from my house. No one there cold capped or iced and there wasn't much privacy. Most annoying for me was that "house make-over" was on the TV all the time. I love to read and was able to block the noise out but many wore headphones. Also, because of space, "helpers" often ended up in very uncomfortable chairs. I didn't take one and was fine but I also didn't have much of a drive home. If someone drives you there, he/she may want to find other things to do away from the center for at least part of the time. Although I actually had a friend who said she "would come and watch me sleep" I was happy to have that time to myself. On the other hand, I have another friend whose friends always brought her lunch and they made a party of it so it depends on what your facility has. That wouldn't have worked for me at my location.
Questions you didn't ask. More than my hair, I missed my eyebrows. I wish I had had my permanent make-up redone before I started chemo. I did gel nails the whole time and never had a problem with my fingernails. I had regular pedicures (at a place that I have used for several years and always passes the white glove test) but lost two toenails.
Assume you won't get much sleep the night of chemo. I usually "slept" on the couch the first night although we have a spare bedroom. The back of the couch gave me support and I read and dosed. A good recliner would have done that too.
Idkidk - This a long journey for those of us who are TP. I don't know what to tell you about your work - don't get me started on the FML stuff. It makes me so mad that fear of losing one's job enters into health decisions. My "starting chemo on" group set up a private facebook page and we have gotten very close even though we have very different diagnoses. Do stay close and try to find a support group near you. My nurse navigator gave me a list. Talk to us. We do know what you are going through! Many of us suffer from PTSD from all of this and you shouldn't try to be "superwoman." This IS hard. I am 18 months post-diagnosis and am doing fine but I won't minimize that there were difficult times. My neuropathy was VERY painful. Do what you can to simplify your life. When people ask what they can do to help, tell them. Fix a meal, take my kids to the park, be my driver, etc.
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Idkikd, thanks for the avocado warning and links. I'm afraid to look but I will. Thought I was so informed- but the information is endless and often contradicting. My acupuncturist reminded me this week that I am the driver of this ship. Not easy to navigate!
Ingerp, my D is erratic. When I have it I don't leave the house and don't feel well. The first time, about two weeks in, I also had stomach cramping. Since then it's been only on days 3-5, and followed by constipation for days. Metamucil and Citrucel were suggested to me, with mixed opinions. Metamucil has artificial dyes and sweeteners which I don't like, but it's what I have, it helps, and I'm gonna use it up. I didn't use it last week and things were worse. Somehow it helps with both issues by keeping things moving and binding in the case of the big D.
I couldn't do any upper body stuff for weeks either, after lumpectomy and port placement. I can now put weight on my arms and am getting back to more yoga.
My feet just started to show signs of neuropathy today. It's freaking me out.
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Thanks for posting the link Idkidk - I recall having read it months ago while on EC but forgot to check back for Taxol.
I lost so much weight prior to EC that I need to gain some. So far I've put on 5 lbs but my BMI is still only 18 and the only way to get the flesh on is through food. I have learned in these past 5 months that obsessing about food only makes me miserable. I also believed that I had a pretty healthy diet (mostly organic, no processed foods other than cereal) and guess that didn't help much either.
I do believe that fewer supplements during chemo is better but continue to believe that the research done on fish oil to prevent neuropathy during Taxol to be of great interest. I can't believed they ran a study and promoted the use of it if it undermines at all the efficacy of the chemo! https://oregon.providence.org/news-and-events/news...
I am up for Taxol #5 tomorrow and it already ruins my Sunday because of looming Monday.
As to what to wear, what to bring, I have a heated wool pad (I am cold capping), a heated neck shrug, and I wear comfortable clothes that allow easy access to my port. I have my own room (which is actually not nice because I am shut up by myself rather than having the possibility to chat or people watch) and my day runs from 8am (check in) to around 4:30pm (I have to wear the cap an entire hour after the hour of infusion and 30 minutes of pre-infusion cocktail). Needless to say, I really hate Mondays!
I haven't experience any D or C with the Taxol. In fact, since I've been on chemo everything is running quite soundly on that end! It must be the H or P that causes it.
I am using Opi Original Strength Nail strengthener on my hands and feet. I read somewhere that it can help. I flat out refuse to ice as I have to ice my head and that makes me grumpy enough.
I feel very fortunate to be strong and otherwise well (so far --- fingers crossed for the duration!). I logged over 65,000 steps and spent 6-8 hours walking around in these past few days and hope this kind of stamina follows me through the end. Why did I read it is better not to exercise before or right after chemo?
Waiting anxiously for June 11th.....
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Taco, downdog, amelia--thank you all for your responses. Trying not to think too much about my hair. Maybe I'm kidding myself but when hubs asked about it I said my best guess is I'll lose some but not all? Seems losing all is more of a given with the heavier duty chemo drugs?
I'll try to leave you guys alone (you are so wonderful!!!), and I do have a patient education session tomorrow, but one more question <for now!>. Let's say you have your infusion Day 1. Which day would you say is your worst? My first two appts are on Wednesdays, but following #3 I have a college reunion. I'm wondering if moving that week to Tuesday would make me feel better on Friday and Saturday?
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Ingerp - so far I haven’t had any bad or worse days (again, only done 4 Taxol so far). I do mine on Mondays and by Tuesday this past week I was running errands and doing big grocery shopping, Wednesday I was out until 1am at a concert (sitting, not dancing!) and Thursday-Saturday did those 6-8 hours of walking.
Believe you’ll be fine and energetic!
I think that keeping myself hyper-busy is the best thing for me. On the days that I did sit around and take it easy I did feel some joint pain.
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Amelia you are an inspiration!!
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Day after chemo (day 2) was pretty good because I was still stoked on the steroids. I'd say 3 and 4 were the worse but until the neuropathy hit at about taxol 5, I pretty much was able to do what I wanted all week. My BFF entered hospice after 5 years of living with stage 4 the week I was diagnosed and died the week I started chemo. After the first chemo, the C/D plus cramps were so bad I worried I wouldn't be able to go to her celebration of life but as I mentioned yesterday, I got that figured out too.
Anne is my role model. Was always very clear what her options were and always kept her family and friends as a priority. We had several wonderful vacations together as couples and she had enough time for her grandchildren to know her. She always had "something she wanted to live for" - realistic, not too far in the distance. The first year (2012) she wanted to live long enough to cancel out a friend's vote for President. She did that again in 2016. She danced at her son's wedding and had one final Christmas (in 2016). She rode the coloring book wave and began to write poetry to go with her art. A friend helped her put together a wonderful book with some of art work and her family and friends memories.
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So sorry for your loss, taco.
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Ingerp....I'm finished with Taxol. I had 15 infusions. I had my infusions on Thursday...I was fine on Friday and Saturday -- Sunday and Monday were the "not so good" days, but not that bad. Now that I've finished Taxol...I do have very bad neuropathy. I've been taking Gabapentin, hoping it will ease up some. It's one side effect of Taxol I wouldn't wish on anybody. I get very little sleep at night due to the pain/burning I really never had any other bad side effects the entire time....no nausea, sore mouth, C or D, no loss of appetite. Basically, I had a bit of joint pain for a couple days. Think positive...you will do fine.
Hope
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Thanks, Hope. I can see trying to move my days up (currently Wednesdays) so either I get the bad days out of the way or back (like Fridays) so Sat/Sun are okay. And I am really sorry about the neuropathy. I am keeping my fingers crossed--my MO said she keeps very close tabs on that and at first sign will start treating (although I don't know how?).
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My MO stopped my taxol at 8 sessions because my neuropathy had gotten so painful. She did say that she would have encouraged me more strongly to continue if I had had a larger tumor or lymph node involvement. I like her more at each visit and the staff is also very responsive. I was told by both my MO, my neurologist and a psychiatrist friend that gabetinin is an effective drug for many although I was taking a fairly high dose in the end. I have actually been able to decrease my thyroid medication since diagnosis (was that discussion on this thread or elsewhere??)
Sorry, but I do think you need to plan that you will lose your hair everywhere - and I do mean everywhere. People who have had AC or TC first sometimes start to have regrowth before the taxol is done but most taxol alone ladies are shaving their heads by about week 4 or 5. I know the reviews are mixed, even with cold capping. I actually liked my bald head but did cover it when I was outside because the Arizona sun is not even kind in the winter.
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Ingerp....My guess is that you will be given Gabapentin or another med as soon as the first symptom appears. I should have spoken up sooner than I did. I had tingling that I should have reported.
Hope
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Thanks for that, Hope. My MO did stress to let her know at the first sign. I have my patient education session this afternoon and was told I'd be getting several scrips. Oy. . .
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Ingerp....I hope all went well at your appointment. Keep us posted.
Hope
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Oh I got lots of good info but as hubs said, also kind of sobering. Funny--after I'd asked all of my questions (posted here) she said there wasn't much left to go over. :-) I did find out the details of what will happen--check blood every time first, check it more thoroughly every few weeks, the initial ~40 minutes is the pre-meds (steroid, anti-nausea, Benadryl, Pepcid), then 90 minutes of Herceptin (the first time--30 starting with second), then 60 minutes of Taxol. I brought up the many good tips I've gotten from y'all (mouthwash, hard candy, . . .). The two I hadn't heard yet were she said a lot of women like gummy bears (along with the hard candy), and that some women avoid their favorite foods when they're in treatment, at least when they're feeling bad. They don't want to have a negative association with them, which kinda made sense. We talked about my "big D" fear, and she said it is usually well controlled with Imodium. (I've been envisioning super severe/dangerous D.) For some reason I'd gotten it in my head that since Taxol is relatively tame for a chemo drug, it might not have the hair impacts, but I read just yesterday morning that 96% of women lose their hair, and she confirmed it's one of the worse ones for hair loss. That made me a little sad--I actually thought I'd make it through with just thinning. I'm thinking there's no way I have hair for my 40th college reunion (first weekend in June).
We got a tour of the facility--many of the rooms have TVs (my preferred time waster, although I will bring newspaper, iPad, phone), and of course I came home with a buttload of papers/pamphlets/. . . .So. I ordered a couple of scarves from eBay last night. I've already placed an order from Walgreens for generic antacids and Imodium. I have a short shopping list for later today and will pick up the two scrips (anti-nausea). I still have lots of time (trying not to count days but first infusion is three weeks from tomorrow), but I'm traveling the week before--I get #1 the morning after I get home, so I want to be all set up before I leave. (And oh yeah--I'm out of town this weekend! I keep forgetting!)
You are sweet to ask, Hope. I know you guys will be invaluable going forward.
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what are the gummy bears and candy prescribed for? The Heceptin?
With Taxol there is no need for anything (some claim that sucking in ice chips helps reduce tongue issues).
Some well meaning people brought me Lemonheads for chemo (guess they both read the same article!). I don’t eat candy (unless it’s chocolate) but upon insistance from my 9 year old (the beneficiary of the boxes of Lemonheads) I tried one. It just about shredded my tongue!
There is a whole thread on cold capping if you’re interested in saving your hair. I’m doing it and have mixed review. It isn’t any fun - that’s for sure and maintenance is very high on saving what gets left.
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Ingerp,
I was usually slightly constipated after taxol/Herceptin infusions, although it resolved itself after a couple of days. Perjeta is known to cause the "big D", but I did not have that one for my HER2+. I also kept my hair through cold capping, and got away with only some mild thinning. It was a lot of work, but well-worth the effort.
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Amelia--hard/other candy was just to help keep the mouth hydrated and get rid of the metallic taste. I can't remember the last time I had any, though--I remember now that it can get kind of sliver-y and slice-y!
Shay--I'd love a little constipation! But my body really does not tend that direction. :-( It's just that with D, I get nervous about leaving the house (like "when's it gonna hit?"). I am gonna try really hard not to let this interrupt my life too much, but being nervous about not being near a bathroom seems like it could have a big impact.
To both--I spent most of a day reading about cold capping. I know it sometimes works (the nurse we met with yesterday said she thinks it's about 50/50), but I read too many stories about women who got through tx with most of their hair only to lose it a few weeks/months later. After much consideration I'm gonna skip it.
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Not trying to change your mind, Ingerp, but just for the benefit of others coming along - cold capping works extremely well with weekly taxol/herceptin. Other chemo regimens are much harder on the hair, but with the lower dose involved in weekly taxol, cold capping is very successful. I didn’t lose more than 5% of my hair, if that. The 50/50 odds are for the AC/T regimen.
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Wow, Patin--good to hear!! I will definitely take another look.
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Remember that your Taxol dose is based on your weight and height. So, it's different for everyone.
Hope
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I did EC prior to the weekly Taxol, which absolutely destroyed my hair. The clinic keeps trying to dissuade me from using it for the 12 Taxol so I finally asked why and they said it was a staff issue -- it takes time (yeah, to roll the machine in and out and the 10 minutes max to get the cap on my head). I suppose they were being honest that it bothers them....
I have lost about 75% of my hair but am hoping the weeklies will keep the remaining tufts in place.
Ingerp - ask your clinic if they offer any of the machines --- the other option is renting caps and dry ice and switching out caps for about 5 hours.
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