Weekly Taxol group
Comments
-
Romantic~~I can't really answer your question about sex, but I do know the nurse told me to still close the toilet lid and flush twice for the first few days after a Taxol infusion, so it must be somewhat dangerous.
Deb~~Have you been taking vitamin B6 100mg twice daily? Also taking 30 grams of L-Glutamine everyday will greatly decrease chances of getting neuropathy. You can take L-Glutamine 2 or 3 times daily. The pills won't give you nearly enough, so you need the powder. I took 15 grams twice daily. (3 heaping tsp) in a tiny glass of grape juice. Use whatever drink you prefer. It isn't gritty, I didn't even taste it in my juice.
I did nothing to protect my nail. I did loose 2 large toenails painlessly, but I'd dealt with fungus under those 2 for years and was glad to see them go. Now the fungus is gone too.
Blessings
Paula0 -
I am finished my Taxol! YAY ME!
Moving on to rads starting July 22. So after this week, I look forward to feeling stronger and fitter every day!
Good luck to those just starting out. I found it easier on the body than the AC, on which I developed clots in my legs and lungs, and was a bit crappy to be honest!
The taxol has been harder on my stomach, and #10 was postponed due to diarrhea issues, but I was back to normal after I missed a week, so I know I'll soon be good again now I'm done!
I have some very minor tingling in my feet, and occasionally feel a bit unsteady, like I am walking on a boat! And my nails are a bit sore and discoloured, funny shaped at the tips, and lifting slightly. I have hopes they will settle down and grow out without losing any!
Apart from that, I'm just happy to be moving on!0 -
Thanks Ladies... I am hoping someone can answer this question for us... Cancer has robbed us of so much ...I miss the closeness with my husband most of all. My Onc is so against any suppliments or vitamins but as I have read through the boards here I see so many say that they have helped them with the neuropathy. I have MANY neuro issue, a pituitary adenoma, severe migraine syndrome,and the meds given for the debilitating headaches I have had since age 11 gave me tardive dystonia, Which is a movement disorder. So I do not need any more problems with walking or functioning...Would try anything to avoid it if possible.
0 -
Morwenna, Yay for you...so happy to hear you are finished... I am counting down just had Taaxol number one 3 days ago... Did you find the SE accumulative with Taxol as they were with AC?
So far alot better than AC I had a horrendous time with it and spent more time In the Er and Hospital hooked to IVs than at home... Got septic once as well...Spend almost the whole 3 months in bed or in the chemo chair or the hopital bed... So I am praying this is not as bad. Wondering how your counts stayed through the taxol... last course of AC My neutrophile were .0... Really wanting to stay on course and get this over with.
0 -
One more question then I wont monopolize the boards anymore...Noticed that today my eyes are very blurry?? I had runny eyes with Ac but this is more like a focusing issue... Anyone able to relate to that?
0 -
Morwenna~~Congratulations on finishing Taxol!!! Yippee!!!
I also developed DVT in my left femur due to AC. I was pfc on May 17, but had to have some scans done after to determine if there were bone mets. Praise God there were none!
I start rads Monday July 1.
Romanticrose~~All oncologists haven't bothered or haven't had time to read the studies on supplements, especially the ones that help with neuropathy. They usually don't like you to take a lot of antioxidants during chemo, but at my cancer center which is a Comprehensive Breast Center, a pharmacist works very closely with oncology for each patient. I was told to take B6 & L-Glutamine for neuropathy. They were fine with me taking B12 because I have Pernicious Anemia, and D3, because I had a deficiency.
We have to be our own advocates. I stopped taking L-Glutamine about half way through Taxol, (I kept forgetting) so I did end up with some minor neuropathy in my right foot. I'm 6 weeks pfc today, and that's getting better, but I could have avoided it all together. The Nurse/Practioner in oncology looked up the dosages for both B6 and L-Glutamine for me.
Blessings
Paula0 -
Thank you Soteria... I am going to shop for these suppliments today...
0 -
Yes I think the side effects are cumulative with taxol. Most people say they are ok for the first 7 or so, then increasing fatigue etc, and the tingling and nail changes start.
I shall be so pleased to get all this poison out of my system and start to feel "normal" again!
0 -
Moewenna~~Since finishing chemo 6 weeks ago today, starting about 2 weeks in I've been getting stronger every single day. I fill pretty much like I did before chemo, surgery, etc. I start rads next week. The onc tells me the fatigue from rads is more of a grogginess, not that bone weary tiredness I had with chemo.
Best wishes to you.
Blessings
Paula0 -
Romanticrose~~as far as I know, you'll have to get the L-Glutamine at a vitamin or Health Food Store. I got mine at GNC. I get my B6, which I'm still taking at Walmart.
Blessings
Paula0 -
Romantictrose,
My husband and I were instructed to avoid oral sex totally while I was on chemo and to use condoms. i was so sick and miserable that we avoided sex altogether for the past six months. Of course we are much older than many people on these boards, so my heart really goes out to you younger ones. You are right: intimacy is vitally important for many of us. I have missed that aspect of my life.
It is very hard to get straight talk about sex while undergoing chemo. Everything is so vague.
0 -
Just had my first Taxol+Herceptin yesterday. Bone tired today. Don't know if it is stress, or chemo. Got extreme redness on my face last night so took some Benedryl at bedtime.
Odd how this round freaked me out... I wasn't nearly this nervous with the AC.
0 -
6cats - the red face is from the steroid in the pre-meds. I thought it made me look healthy! I think the first dose of Herceptin (the "loading dose") can make you tired. Probably a combination of things, including stress, making you tired.
0 -
Thank you so much honeybair... for sharing what you doc told you...
Paula, I went to walmart and got the vitamins...they had the l Glutamine on walmart.com but not in powder form in the store so I will order it now as Im not up to going out again. I appreciate you sharing the dosages...
I am leery of not being my own advocate since my cancer was missed for roughly seven years...
0 -
I had my first Taxol+Herceptin on Thursday. Yesterday and today I am bone-tired. Today, achy all over, scattered brain. Tell me it gets better...
0 -
Wow interesting on the B6. I take b complex once a day if I remember. My onc wants me to take 5000 u of Vitamin D daily. I am low and she said it might help prevent recurrance of breast cancer.
0 -
For those of you taking Glutamine, how are you taking it, and how much? I got powder from a Vitamin Shoppe, and one heaping spoonful is 495 milligrams. I mixed that amount into some applesauce one morning, and on the way to work I got heartburn so bad I almost threw up. I've seen recommendations of 10 grams a day, which is about 20 of those heaping spoons. I don't think so.
0 -
Hi, I just finished my last AC yesterday Friday. Will start 12 weekly taxol in two weeks. I was wondering what are the worst days after weekly taxol? I did my AC every Friday andi was out and loopy on weekends. It's summer, and my young kids are home from school, and I'd really like to be able to do something with my husband and kids on weekends. So if I wanna be up and able to go out of town on weekends, when is a good day to do taxol? Thanks!
0 -
Tr4c3y~~My N/P at oncology looked up the L-Glutamine dosage for me. She said 30 mg per day taken in 2-3 servings. A heaping teaspoon is 5 grams. I took 2 heaping teaspoonsful 3 times daily. You can make it 3 and just do it twice. I mixed mine in a tiny glass with cranberry/grape juice. It wasn't gritty and I only tasted the juice. I had no side effects from it at all.
Paula0 -
Just started weekly Taxol on Thursday and already feel like a whiney-baby!! Any others here that also have Fibromyalgia? What has been your experience with Taxol?
I complained about bone-tired fatigue the first two days... Now, on Day 4, I'm in what feels like an extreme Fibromyalgia flare -- Or does Taxol just cause that extreme amount of pain? I'm interested in the Taxol pain that others have experienced. How long has it lasted? Anything relieve it? Where is it centered (all-over, hips, back, etc).
For those that have experienced pain, does it get worse with each weekly dose, or is this first time the worse?
Thank you everyone for your support, experience, and input!!! It is great to have a place to come to ask these questions.
0 -
6cats had my first dose Thursday also. Was fine until last night when hips started hurting with pain radiating down thighs to knees. Advil not helping much...think I have leftover oxy from surgery. Wasn't prepared for this. Not sure how I will work tomorrow!
Lisa0 -
Hey ladies!
I had a few SE questions that I am hoping you can help me with. I am on my 9th weekly Taxol, the 10th one is this coming Wednesday. So far, side efffects have not been too bad at all, but I am noticing a HUGE weight gain. I have gained 25lbs in the past 8 weeks. I am told that this could be due to the steroids given with Taxol. If so, will I lose the weight when I am done? I know it seems trivial to worry about this with everything else we all have to worry about, but it is really effecting my self esteem. Its bad enough having no hair and no breasts, but this too??
I have also noticed shortness of breath, but I think that is due to the weight gain and low red blood cell counts.
Please let me know if any of you have experienced this.
0 -
tori39,
I too have young kids. Dont worry, the Taxol is not nearly as bad as the AC, at least for me. I am hoping the same for you. I noticed fatigue about 3 days out, but I think you will be fine for traveling and stuff. Just pace yourself and get lots of rest when you can! Hope that helps.
0 -
I found days 3-5 were the worst days after each weekly taxol, after the steroid kick died down. Mostly from the fatigue point of view. The first few Tx, I did get sharp shooty pains, but this seemed less of an issue as the weeks went on.
The main pains I have had latterly is in my nails/fingertips. It makes using my hands, especially opening some packaging etc, rather difficult. Now I am day 4 pfc, my toenails seem most sore! It kinda moves around!
I'm somewhat more short of breath again, and I put on 8 lbs in the last two weeks, but it was so quick, I'm sure it is fluid mostly. Perversely, I find if I increase my fluid intake my weight actually decreases. I'm sure it will drop off again once the steroids and meds are all gone (she says hopefully)
0 -
NikNak, I gained weight (about 15 - 18 pounds) on taxol also, and I think it's quite common. I have lost some of it but it doesn't just go away as I had hoped. I'm now about 7 - 8 pounds over what I was before starting chemo. I'm 6 months PFC. As for the shortness of breath, it's because of being anemic (low hemoglobin/red blood cells). Stairs were seriousy difficult, but it will get better!
0 -
NikNak, I also have gained about 20 pounds while on Taxol. This week will be my last treatment.yay. Hoping I can start getting this weight off. I had to go back to work to keep my benefits from ending (can't afford COBRA) thought for sure I would lose weight this week, because I work in retail and move all day long, but the scale didn't even budge. I also get short of breath, especially going upstairs.
RE: neuropathy, I wish I had started L-glutamine earlier...the numbness in my feet has gotten worse the last 3 treatments..come home from work in tears some days. I purchased mine from hi-health powder form 4500mg which equals 4.5grams per teaspoon. I Take it 3x a day in juice (heaping-tsp). Has taken the pain away I was feeling, but numbness still remains, but hoping it helps to not get worse. My oncologist gave me the ok to take it, but she wasn't aware of its benefits and just said it can't hurt to try it.
6cats- hang in there...I guess I was lucky the only pain I have is in my feet...but every once in a while I will get some random shooting pains in my shins, arms and even my head
Soteria205- good luck with the rads on Monday. I have my lumpectomy/ALND July 30th and will be soon following your footsteps in rads. Keep us posted on how you are doing.
Morwenna- congrats on finishing Taxol!! you go girl, now you can get stronger before starting rads and be that warrior woman!!
0 -
NicNac~~I'm 6 weeks post final Taxol. Since finishing I've lost 10 lbs without doing anything different.
I had an easy time on taxol. Minimal joint pain, minimal neuropathy that's almost gone. I lost 2 large toenails, but no issues with fingernails and I did nothing at all to protect them. My biggest complaint was fatigue. I'm now getting stronger every day.
I didn't have steroid issues, because at my cancer center they really keep up on the studies and they know if you don't have a reaction with the first 2 treatments you don't need pre-meds after that. So I only got steroids & Benadryl for the first 2 treatments.
Blessings
Paula0 -
We all react so differently to Taxol, I had no weight gain, no pain and no neuropathy. Did lose eyebrows, most of lashes and had nails to loosen, but lost none. Fatigue was my main side effect. Maybe all the water I drank helped in some way. Also took Vit B-6, had B-12 in jections once a month and took 2000 mg. of Vit D-3. i did develop a blood clot behind my right knee. That was my major side effect and the swelling of my left calf and ankle are still present.
Hang in there, those still undergoing treatment. Time will pass and you will make it to the other side. I will be three weeks out next Wed. from my last treatment, and I feel better each day.
0 -
6 cats - I got a lot of pain on Taxol. I had knee pain, shoulder pain, neck pain, nail pain, tooth pain. I took 2 extra strength tylenol and 1 extra strength ibuprofen which really helped a lot. Are you on Neupogen - if so, it can cause extreme joint and bone pain.
0 -
Paula,
I wish I'd known about no steroids after no reaction!!! I had Taxol and steroids for 26 weeks. I think the steroids were responsible for more trouble than benefit.
Candace0
![[Deleted User]](https://us.v-cdn.net/6037276/uploads/defaultavatar/nF0ALO3I3QJM7.jpg)
