Weekly Taxol group
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Annie--people just don't get it. I'm about 16 months PFC and have about 4" of hair. I did start doing a little color several months ago (the first time I tried my hairdresser sent me home--said it wasn't long enough--ugh). The curl is starting to relax, and a lot of people are complimenting me on it. But it's not my hair. I've gathered from lots of BCO posts that the chemo curl typically lasts about two years, so next summer for me, when I'll also have more length. We focus so much on losing it, and then it *is* exciting when it starts growing back, but the fact that it'll be several more *years* before it gets back to what it was feels a bit like another slap in the face. (BTW--I never loved my old hair--it was not curly, not straight, but when I see pictures of myself from 2+ years ago I realize it was actually pretty okay!)
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When I knew that I would be starting chemo soon, it seemed like every day was a good hair day. Personally, I think that when I knew that I would be losing my hair soon, I wasn't so hard on myself for how it looked and just appreciated it. Now that my hair is mostly gone, I hope that I won't be so hard on myself for however it comes back and appreciate that too.
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Does anyone know how bad your neuropathy can get before they start cutting your chemo dose?
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I was constantly questioned (weekly) as to whether I had difficulty “buttoning/unbuttoning shirts or tying things?” At that point (buttoning difficultly) they discontinued my weekly Taxol (week10) and gave it to me with my next H+P dose. Despite icing hands and feet throughout, my neuropathy became bad enough that they did not want to continue it weekly.
Hope that’s helpful,
Diane
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Diane - that is helpful. I have at this point, neuropathy in part of one finger and thumb on my arm that has lymphedema and it was somewhat damaged before chemo as far as sensation. The neuropathy in those two fingers is a little worse but not any more area and seems to be stable from early on in my treatments. I am now 6 sessions in on a planned 12 dose Taxol regimen with my chemo day being Monday afternoons. I started getting some neuropathy in my feet two days before the 6th session. The foot neuropathy is pretty much the whole bottom of both feet. It doesn't hurt but the chemo nurse told me that if it worsens at some point they have to cut your dose.
Also, for anyone reading this, my chemo nurse told me that one lady they had get neuropathy found that putting Vick's on her feet helped. I Googled neuropathy and remedies (or something similar) and did find a link to Sloan Kettering that mentioned using lotion with menthol could be helpful for those with neuropathy. I started doing it 2 nights ago and will continue to use to see if it helps. If anyone else has some helpful remedies for neuropathy, please pass those along!
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I finished T in May. My neuropathy is bad. Both feet and my right hand. I was also questioned on the whole can you button your shirt - put on your earrings - and, yes, I could but that didn't mean that my feet weren't suffering. Now, walking is very difficult, I take gabapentin during the day and at night to ease the pain so that I can sleep. I use aspercreme with lidocaine which helps - and if you can get your DH to gently massage it in, that really helps.
My dose was cut after 8 - due to skin toxicity, not neuropathy. I wish I had quit after 6, but was scared that if I did, I would have a recurrence. I am on Letrozole- and it makes my hands very stiff in the morning which makes the neuropathy feel worse. My MO said to expect it not to get much better before 6 months to a year. My toes may be numb permanently, but maybe the burning and pain will subside eventually.
Cancer - the disease that just keeps on giving!
Annie
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Back when I had weekly taxol in 2012, I used l-glutamine and vitamin B6 to ward off neuropathy. L-glutamine - 30 grams per day, divided into 2 or three doses. Mix with a liquid of your choice. It doesn't dissolve, but it suspends in the liquid. I was told to take it the day of chemo and 3 subsequent days for my weekly taxol. 30 grams is a lot - if I remember correctly, 15 grams is about a heaping tablespoon. You can buy pre-measured 15 gram packets on Amazon (it's called Glutasolve); I was given a supply of the packets at my oncology office, and when those ran out I bought a tub at GNC. B6 - 100 milligrams per day. I think I took that every day. I only had intermittent "flashes" of neuropathy. There is some research out there on l-glutamine for chemo-induced neuropathy - google it and discuss with your oncologist. Continue using the l-glutamine for 3-4 weeks after finishing chemo! I ran out and didn't buy any more, and ended up with a numb big toe about 3 weeks post-chemo. (It's ok now.)
For those finished with chemo but still suffering with neuropathy, you could try acetyl l-carnitine. Again, you can google it, it seems to have good effects for diabetic neuropathy, but I don't know why it wouldn't work for chemo induced neuropathy as well. And of course, check with your oncologist or other doctor.
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Popping back in with a hair update. Finished my chemo July 5th, started going hatless around 3rd week of August. Last week I got a first hair trim. My hair has come in nearly white. (was about 50-60% gray before) Still very short, especially in the front (I have always had bangs and still not much there yet). I am getting daily compliments on my hair. Many people whom I have not seen for a year (prior to BC diagnosis), tell me they just love my new hair cut. Hoping that this encourages anybody who needs it! Hang in there everyone.
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Hi Lois, how are you feeling? I am a week behind you, and my hair is growing so slowly. I finally have full coverage, but it's only an inch and a half long. However, It's my natural color, and not the white I hear others talk about.
I just had phase 2 of my surgery done, and feeling sore, but not bad. I feel a lot like myself, but still recovering.
Hope you all are doing ok. I haven't been on this site as much since my computer died/ going back to the office/taking the kids to soccer.
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Hey all, this dose dense taxol is really hurting my muscles and joints , it lasted 5 days last time, i suspect it will last 5 days this time also, and pain pills and ibuprofen relieves my pain very little,, but could be worse, 2 more doses to go
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I just had my 7th weekly Taxol injection yesterday so 5 more left! My bloodwork continues to be good every week. Is that normal? I am glad I have been able to so far get all of my weekly injections on time so far but knowing that the chemo is supposed to hurt the good cells as well as the cancer cells, it makes me wonder if it is doing it's job or can your body regenerate the blood cells well enough in a week to stay at a good level as long as you don't get an infection or catch a cold, etc.?
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hi cowgal. I just finished my 12th weekly Taxol. November 21st 🎉🎉. Rang the bell 🔔. I wondered the same thing as my blood levels remained good all 12 weeks. I only received Taxol whereas others received other chemo prior so possibly there bodies were more run down?
I’m thrilled to be done and looking forward to my body feeling normal again.
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Also wanted to say I iced all 12 weeks. In ice socks and gloves and kept my hands and feet in buckets of ice 🥶. No neuropathy except slight tingling in left finger tips. None in my right or my feet. It was pure torture 1.5 hours and I cried at times. But really glad I did it.
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Met with oncologist. Will resume phase 2 of chemo on Friday. 2 of 4 adriamycin and cytoxan. Trial drug placebo being held for 2 weeks. Oncologist feels it was not trial med that gave me pneumonitis. He thinks my immune system was low and I caught what ever upper resp virus that was going around. In two weeks will resume trial med and if symptoms reappear will stop trial med and open double blind study to see if I was actually being given the trial med. I'm okay with that, as long as I don't land in hospital again, and don't have trouble breathing. Happy Thanksgiving all, Enjoy your day. I plan on feasting it, knowing on Friday I will lose my apetite again for awhile. Marta
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Loveflorida- congratulations on being done with chemo!!!
I hope all you ladies are doing good and keep kicking cancer's ass!!! Happy Thanksgiving to everyone stateside!!
~Katie💗
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Marta, sorry to hear you've been sick. I just finished AC and and have one more clinical trial or placebo. Then surgery in Jan. Best wishes to everyone doing taxol!
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Hi all - I haven't been on here in about two months. I'll be having my 11th Taxol on Monday, then finishing up on the 23rd, just in time for Christmas. Yay! I've had various SEs to deal with, but the fatigue has been the worst. My blood levels have stayed good through the whole time, just a tiny bit low of normal, and I haven't gotten sick. I'm thankful for that. I've been icing my hands and feet. But maybe not diligently enough - I started getting neuropathy in my left fingertips after Taxol #9, and in my right fingertips and a little in my toes this week (after infusion #10). I wonder if they'll cut the dose or the number of infusions. It's starting to be uncomfortable for me to do some things with my fingers, including typing this message. Developing neuropathy that's permanent is pretty much my greatest fear surrounding Taxol.
If you've had neuropathy start around the 9th or 10th week of Taxol, I'd love to hear your experience and whether it eventually went away. Is it more likely to resolve if it develops later on in the 12 weeks than if it starts earlier?
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Lovemy4kids. Sorry to hear about the neuropathy but CONGRATULATIONS on almost being done with taxol. My wife was very diligent on icing hands and feet. She developed neuropathy in her toes on taxol #11. They reduced her taxol on #12 by 10%. She is 8 weeks pfc and 4 weeks post DMX. Neuropathy still in her toes. Bothers her when barefoot on hard floors. Otherwise not too bad. Some days she thinks it’s getting better and other days it seems the same or worse. The cancer center believes it should get better but may take 6-12 months!!! She has done a little acupuncture but not sure it helped. Her workouts seem to make them feel better. I do massage her feet and toes daily. Hope this helps. Hang tough!!
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I did not ice and got a little bit of neuropathy on the bottoms of my feet. It took about a year to resolve. Nerves are very slow to heal.
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Tolerated 3rd AC with trial med/placebo much better this time. Steroids suck though. Up at midnight tonight, drinking a cup of sleepy time tea, hoping that will settled me down. I love the high energy during the day, but at night I need my sleep. Only one more to go. Thank god. Neuopathy in toes now just interminant. Mostly when I put my shoes on in morning then it goes away. I hope it continues. Skin issues clearing up. Brown nails now growing in normal. Hopefully new year will be back to somewhat normal. Surgery scheduled 1st week of February. Last dose to AC December 27 so will feel ok for christmas. I can't wait for Christmas this year. My whole family will be here to celebrate.
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Marta,
Good to hear you were able to tolerate your 3rd dose of AC. Sorry to hear the steroids are still keeping you up at night. By this time in my treatments I know longer felt the effects of the steroids. Rest up when you can and have a fabulous Christmas with your family. Your ready to cross the finish line. I had my surgery 12/11, doing well with the recovery. Pain is tolerable, but remain very tired. Looking forward to Christmas with my family 😊. It’s good to have something positive and fun to focus on 🎄🎅🏻
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HI all - Dx in November with Stage 1 Grade 2 IDC/ER+ PR+ HER2+. I had a lumpectomy so the tumor is gone and I will need treatment to hopefully keep it from coming back.
I start Taxol (12 weekly doses) and Herceptin (every 3rd week for a year) on January 7th. I'm having a very difficult time dealing with my fear of the chemo and all of the side effects everyone talks about - diarrhea, constipation, mouth sores, neuropathy, insomnia and especially losing my hair. I just can't seem to wrap my head around that one. They told me that the weekly dose of Taxol is a lighter dose since it's weekly. I feel like a big baby and get angry with myself for worrying and crying about things like my hair when I should be focusing on saving my life and being grateful that I have a life. But as hard as I try to get past it - I'm an emotional wreck some days. I had Triple Negative Breast Cancer 3 1/2 years ago that was caught very early and I did not need treatment - I had a double mastectomy and reconstruction and I feel like I handled that way better than I'm handling this. I am so scared of chemo! Any advice on getting past my fears and losing my hair will be appreciated. Thank you!
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HI all - Dx in November with Stage 1 Grade 2 IDC/ER+ PR+ HER2+. I had a lumpectomy so the tumor is gone and I will need treatment to hopefully keep it from coming back.
I start Taxol (12 weekly doses) and Herceptin (every 3rd week for a year) on January 7th. I'm having a very difficult time dealing with my fear of the chemo and all of the side effects everyone talks about - diarrhea, constipation, mouth sores, neuropathy, insomnia and especially losing my hair. I just can't seem to wrap my head around that one. They told me that the weekly dose of Taxol is a lighter dose since it's weekly. I feel like a big baby and get angry with myself for worrying and crying about things like my hair when I should be focusing on saving my life and being grateful that I have a life. But as hard as I try to get past it - I'm an emotional wreck some days. I had Triple Negative Breast Cancer 3 1/2 years ago that was caught very early and I did not need treatment - I had a double mastectomy and reconstruction and I feel like I handled that way better than I'm handling this. I am so scared of chemo! Any advice on getting past my fears and losing my hair will be appreciated. Thank you!
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Chemo isn’t what you think about from decades ago, particularly not Taxol (which is sometimes called “chemo lite”). Of all the things you mentioned, the only one I had was hair loss, and a little bit of neuropathy on the bottom of my feet that has resolved. I never felt awful—just kind of heavy, like getting up was harder than it should be, and that was only for a day or two, and only the last few chemo sessions. Chances are you’ll get through it just fine. Enjoy the holidays, treat yourself gently, and then put your big girl panties on to do what you have to. You’ll come out the other side—really you will.
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Thanks Ingerp! Hearing that not everyone gets all of the nasty side effects eases my mind a bit. Despite my very needy post, I really am a very strong, resilient person lol. I'm just feeling extremely overwhelmed by the unknown. I appreciate your kind words. I hope you have a wonderful holiday and a happy HEALTHY new year!
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Dmp1960– I know exactly what you mean about being strong and resilient but needy as the changes in treatment happen. I have been told many times that I am the strongest person someone knows yet when it came to this, I was on here worrying, sharing stories, trying to be supportive for others and basically being a hot mess! We all have been there and get it! Good luck.
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DMP1960
I just finished my last of 12 Taxol treatments on Friday, I had very minimal side effects (a little dry eye and every once in awhile a few stomach issues). I had my treatment every Friday and was able to go out every weekend and live my life and go to work all week. I didnt lose my hair because I cold capped. Make sure you drink a lot of water, I was told that was one of the things that helped minimize by side effects and don't be afraid, it is very doable.
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mncteach thanks! It’s reassuring to know that others feel the same when they are going though this. I just wish none of us had to!
ik0106 - so glad to hear that Taxol had minimal side effects for you! This gives me hope that I will have a similar experience 😊I hope you continue to do well!
Thanks for your responses and best wishes to both of you for a happy and healthy new year!0 -
Losing hair is difficult and temporarily life changing but remember that===TEMPORARY. I am 5 1/2 months out from last Taxol (I had AC first so hair was gone from that) and hair is at a length that is acceptable/normal and I get daily compliments on it, even from people who didn't know about the cancer/chemo. Here are a few "positives" (I know these are not major but just to be a bit lighthearted for a moment)---you can sleep later because you don't have to do your hair, you will save money on hair products, you can wear different hats/scarves/wigs depending on your mood.
Since you didn't mention this I am going to add it here just in case you hadn't thought of this yet--if you lose your hair you will also lose eyebrows and eyelashes. This happens a bit later than the scalp hair. In some ways this is harder to handle than the head hair. Eyebrows are fairly easy to pencil in. I am still doing that. I never did false eyelashes, but you can if you want to. I think they are kind of a hassle for every day. I don't know much about cold capping but you have time to research that before you start. I am sorry you are dealing with this AGAIN--doubly not fair.
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Thanks loiswb - it really is helpful to hear the experiences of others. I have thought about the eyelashes and eyebrows and the eyelashes are gonna be a tough one! And you're right - it is temporary and I need to keep that in the forefront of my thoughts.
I'm working hard to try to stay positive and be very grateful that this was caught early and that I have the opportunity to get treatment and hopefully live many more years. I think what I have is just a fear of the unknown lol. Some days it's overwhelming 😳
Thanks again for taking the time to respond to my post. It was very helpful 😊
Have a great holiday and a healthy new year!
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