Weekly Taxol group
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kamboka, my mo said there is a slight advantage for doing dose dense taxol for triple negative, so since that's what I have I agreed to the dose sense
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Gamb— I had zero neuropathy if that makes you feel better. I didn’t ice or anything. I too was told because of my age (44) and triple negative did was the best option for me. I don’t think any of us get thru any of the chemo with no side effects unfortunately. I did feel better overall on taxol than the AC but just different side effects to deal with
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Gamb - I wouldn’t assume that you will have problems with neuropathy. As McNeath said everyone’s side effects are different and you may not have any neurological issues at all. I didn’t have the muscle/bone pain that many others had, so to some degree it’s a bit of a crap shoot. Hopefully you’ll not have to deal with the neuropathy
Diane
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Re: hair, I did cut mine down to about 1" at week four, and then down to about 1/4" several days later. I wouldn't say it *all* felt out--I still had a few stragglies but not many. The women I read about who start seeing re-growth on Taxol have been on AC or some other chemo drug first. Taxol is sometimes called "chemo lite"--it's just not as harsh as some of the other chemo drugs.
Re: neuropathy, I did not ice, but made a point to wear open-toed shoes and did not take any of the warming blankets that were offered. I figured I'd try to keep my body fairly cool through tx, and only ended up with a little bit of neuropathy on the bottoms of my feet.
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Good idea to cut hair a couple of times, thanks Ingerp. I'm going to do that today.
After four treatments, I would say my major side effect is insomnia from the heavy dose of steroids. I hadn't realized they were giving me the same full dose that I got 10- years ago when I did taxol every three weeks. Back then, I didn't think the steroids were a problem, but now I think my body is having trouble clearing such a large dose every week. It also doesn't help that I'm going through menopause now and sleep is more of a struggle overall. I also didn't realize that after the first couple of doses, if the patient doesn't have an allergic reaction, they normally cut the steroid in half. Maybe because I had a terrible allergic reaction to the attempt to get taxotere into me 10 years ago, they didn't cut my steroid dose after my first couple weeks of taxol this time, despite it being event free. But after I talked to my hospital pharmacist about insomnia, the plan starting this week is to try it. If all goes well, I'm going to ask if they can keep cutting by 10 percent every week.
Other symptoms: worsening of hot flashes that were already there. Also I have heartburn and a few small zaps of neuropathy in my hands when I'm doing dishes and switch from hot to cold water all of a sudden. I'm exhausted sometimes but mostly wired from the steroids.
When I did chemo years ago, I had to work through it, and didn't have time to take good care of myself. This time I'm off work and doing meditation, chi gong, acupuncture, green juices, bone broth and fish oil. Last time I had terrible mouth sores, although I found that some myrrh essential oil (diluted in another oil) took care of them. This time I'd read that the practice of oil pulling first thing in the morning can help prevent them forming. Since I have time, I decided to try that. So far so good.
Good luck to everyone going through it! I'd love to know about any other hacks people are finding effective or worth trying to get through this!
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When do you usually lose your hair if you are on weekly Taxol? I am cold capping so not expecting to lose much, I have barely shed, but I am also curious when you lose your body hair? I have barely lost any of that also.
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I just had my third dose of weekly Taxol yesterday and I have noticed that since day 13 after the first dose that I am seeing more hair hair loss that I would describe more as thinning rather than coming out in clumps. I am not cold capping. I have not seen any noticeable loss of any other hair yet.
For those of you that are lost hair on Taxol what can I expect on hair loss? For example, once your hair starts falling out, does it fall out pretty quickly or slowly over the whole process? I have 9 weekly doses of Taxol left. I have just below the shoulder length hair and trying to figure out if I should try to gradually cut it short as it falls out or if it really will just go fast and the next hair cut needs to be a crop or a buzz cut?
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Cowgirl,
I started losing my hair at infusion # 3, thinned at first then came out in clumps. Just touching my shoulder length hair it would come out. Shower drain always full, along with pillow cases and such. Just before infusion # 4, I had it cut. I've finished up treatment with taxol (12) last week, and I'm completely bald. I also had carboplatin along with trial drug for my treatment. Start AC in 2 weeks. No longer have eyelashes or eyebrows. Also pubic hair gone. I personally feel losing my hair was the worst side effect. Yes, I get very emotional, extremely tired, and had some skin and scalp issues, hoping they will subside now that taxol is done. Losing my hair felt like I was losing my idenitity. I did purchase some nice wigs which are hot to wear, but now that it is cooler out they are ok. I mostly wear just caps, of baseball caps with hair attached to them. Some of the women I've met at infusion center did cold capping. Alot of work. Some lost their hair still, some just had thinning. Good luck. I've been told it will come back. Chemo curls, being that my hair was thick, full bodied looking forward to how it grows back. Marta
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started my first taxol, no nausea so far but bone pains and eating well. I wont finish taxol treatments until jan so i have to wait and see.
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Thanks Marta for your reply. Yes, I think hair does affect our identity. Once the hair is gone, people who don't even know us see us as a cancer patient. I already have one wig and a scarf to wear when I lose my hair. Everyone says wigs are hot and uncomfortable so I am thinking about buying a halo wig so I can wear them with some of my different hats. I live in a windy climate so I sure hope I can keep the wigs and the hats on! I already have curly hair so I have been joking with people that mine will probably come back straight.
Moca66 - I am just a couple of weeks ahead of you on the Taxol. If I can stay on my treatment schedule, I should have my last treatment on December 30. So far, I have had a few side effects. I started getting sores in my mouth in spots and started doing the salt/water/baking soda rinse 4 times a day and I think that has curtailed that for now. I had a reaction to the Taxol and they have had to increase my steroids that I am on but will have it tapered down to just what I get with the chemo after 4 weeks. I actually have a decrease in pain in the area I have cancer since starting chemo...not sure if that is from all the steroids or what. Hair thinning started at day 13 for me and I still haven't cut my hair yet but am guessing that this week I will see significant hair loss and am likely a week at the most from having to do something.
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Hi everyone
I just finished my 4 AC treatments on 10/18 and am starting Taxol (12 weekly treatments) on 11/1. I am pretty nervous about it in general but especially because of all the posts I’ve seen about allergic reactions to it.
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I'm with you Cat, i start dd taxol the 7th of November and the allergic reactions people have had are very concerning to me
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Cat029 and Gamb - I have a lot of allergies so my husband wasn't very surprised that I broke out in hives from the Taxol after only 1 treatment, despite the fact that they give you Benedryl and steroids right before the Taxol infusion. My advice is that you just need to be letting your oncologist and chemo nurses know and they can adjust. I started itching the evening of the 6 day after the chemo treatment and by the next day had hives over a good portion of my body but not as bad as I had them from stuff that has put me close to anaphalaxis shock. I contacted the chemo nurse and my doctor was able to prescribe me some steroids so that I could take them immediately and not miss my chemo treatment that day. My steroids will drop down by 10 mg each week and by the time I am down to just what normally comes with my chemo, I should be fine with it. I did have to take some Benedryl for a few nights as well but have not needed any for a few days. Your first treatment, they will monitor you and give you the Taxol more slowly so that they can see if you have a serious reaction. I did fine during that and again my reaction after 6 days would not have put me into the anaphalaxis. I would probably have had to miss my second chemo session though if I had not communicated early that day that I was having hives. So again, make sure that you communicate what is going on with your body to your oncologist and the nurses so that they can help you and make adjustments.
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I just had my 5th taxol, and we tried dropping my steroid dose from 20 mg to 10 mg. It went fine, no problems. I am already feeling less wired. Hoping to sleep decently tonight with the help of melatonin and benadryl!
My hair started falling out after week 4. I noticed it was breaking off in short pieces for the first couple days, but then the clumps started. Yesterday, I got it shaved to about half an inch, and I have to say I'm really relieved to get it over with. Now, I don't think I'll notice it falling out as much.
For me, the most troubling symptom is a mild ringing in my ears. Anyone else have that?
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Cat029 and GAMB. My Natalie had no issues with allergic reactions and so many do not. If you don’t with the first 2 you should be fine. Hang tough and I bet you’ll sail right through Taxol!!
Blessings
J
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Thanks J! I hope we do
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Brooklyn - I had tinnitus (ringing in the ears) throughout treatment. It should go away a couple of weeks after you finish. if it’s bothering you at night, try a little background white noise.
Diane
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So for those of you that have already experienced complete hair loss on your head, once the hair started thinning and coming out how long did it take for the rest of it to fall out? My hair started thinning the evening of day 13 after my first treatment with Taxol. I just wondered how many days once you are in this phase it typically takes before it is gone. I am assuming that when I do the big cut that leaving hair at least an inch or two long so it can lay over might be more comfortable on my scalp so nothing is sticking up and prickly as the rest of it falls out.
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Thanks Diane -- that's reassuring!
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Concerning hair loss and head coverings. Any head covering that has chemo attached is super expensive. Google how to make a chemo t-shirt head wrap. I bought t-shirts at WM for less than $3 and added a bandanna or scarf. It stayed on during all types of weather and made me feel less like a patient. I can't tell you how many compliments I got. It was so easy to match colors to my outfits. There's no sewing and the wraps are really easy to make and use.
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Just an FYI, the American Cancer Society in my area provides free wigs. They have many styles and choices. I was told to call them by my cousin who also got a free wig from them. They were extremely helpful. Good luck
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hair: if there isn't an Amer. Cancer Society wig bank by you , they will give you a code to order online and you can get a free wig shipped to you. (the $65 range). when my hair fell out it hurt for about 48 hours. the foliciles get inflamed I was miserable. when you don't have hair wigs are super itchy. Buy a bamboo wig cap to wear under your wig. It's a must IMO.
I'm allergic to avocados so they list me as a latex allergy, I am also allergic to the hibiclens stuff so I get achohol swabs before port access. Benadryl causes me to have restless legs so I have a script for Gabapentin to offset it. The first couple of treatments I had 50 mg of Benadryl and now I get 25. I'd be happy if they cut it back more because of my intolerance for Benadryl. Anyway my point is I'm kinda allergy prone and knock on wood no allergic reaction to the Taxol - I had treatment #7 today.In general I am having a much easier time with Taxol than A/C (as do most people )
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Finished up Taxol and Carboplatin last week. Thank god. I have this week off, next week start AC along with trial drug. Maybe my counts will come up in that time. Maybe my taste will return? I hope so. Hang in there folks there is an end.
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Annie60 - Thanks for the t-shirt wrap idea. I think that is a great idea and I like that I can customize the look with bandanas or scarves.Katiekins and 2019what - Thank you for the ideas on wigs.
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I sympathize on the taste weirdness! i'm on week #5 of taxol, and have been experiencing a bitter taste, especially with plain water. I don't remember having this the first time I went through chemo 10 years ago. I'm assuming things will go back to normal -- anyone else have experience with this?
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Completed 6 of 12 today. Half way there! I am very lucky I really haven't had any bad side effects and I am cold capping so have kept all of my hair. Hope everyone has a great weekend!
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Anyone deal with bone pain and muscle spasms after Taxol?
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CAT, yes I had bone pain after my 7/12 taxol, carboplatin. I still have lower leg pain and have been off Taxol for 1 week. It hurts. Motrin 400mg helps, but don't like taking it. My oncologist said it was from the taxol. I have been doing yoga to help it and it does, but in the middle of the night it wakes me. Hopefully will go away. My taste has returned 40%, not completely, I don't have neuropathy I don't think. start AC on Friday
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Hi Ladies and guys if your out there. I have a question, how come some are doing the Taxol first then AC? My MO had had me do the AC first then Taxol. I wounder if we are all just part of some study that in 10 years will come out and say. " Those that did the Taxol 1st did better than those who did the AC 1st ? Just wondering. Either way not looking forward to the Taxol seams to have a lot more SE than AC. I have had no real problems with the AC yet, just hair loss but still have 2 more infusions to go.
Blessings to all
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So I had some mild bone pain in my right femur before I started chemo, but now the pain is constant and feels like a bone bruise that won’t heal. There’s no actual visual evidence of bruising and I can’t help but worry that it is a metastasis to the femur. I don’t know whether to bug my CO about it, or hope it resolves on its own.
I’ve also, 5 weeks out from chemo, lost all my eyelashes and most of my pubic hair as well. The eyebrows are hanging on and I have peach fuzz for hair. I can’t decide if I should shave it again in hopes of making it grow a more consistently whatta ya all think would work best?
I was not offered a bone scan subsequent to the biopsy procedures. What were the rest of you offered? Are PET/bone scans now standard of care, or just mammogram and breast exams.
Further thoughts on this would most certainly be appreciated!
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