I've had six Abraxane treatments since February. I'm thrilled that it's dropping my cancer marker, but I think I'm starting to have a bit of neuropathy...either that or someone is sneaking into my bedroom in the middle of the night and putting pins in the pad of my big toes.
I take L-Glutamine for 2-3 days after the infusions, also take B-12. Wondering if any of you taxane veterans have any other supplements, creams or magic potions to suggest? Unfortunately I've been missing acupuncture the last month too and who knows when that can start again. Thanks very much for any suggestions!
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MacroMom
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I am so glad to hear that abraxane is bringing your markers down. I will have mey second treatment tomorrow. My markers are up to 3,800 I need to get them down.
I have neuropathy too. Do you get the muscle and bone pain. Do side effects get better as treatment goes on?
Yes, I have some neuropathy. I take B-6 and L-Glutamine per my NP's recommendations. Also, I get reflexology when I was able to get out the house. My husband will rub my feet and I feel that does help. Also, I've heard that if you want to put your hands and/or feet in ice while getting treatments to reduce bloodflow and thereby chemotherapy agent from going to that body part. I already to do the cold caps for my scalp, so I don't want any more ice on my other body parts!!
HI. Can you also post more about your expreince with the cold caps. Do they work and are they hard to tolerate? Do you need another person to help you with them?
Thanks for the suggestions! My hubby does foot rubs too. Last night I asked him to rub in some arnica cream and I didn't feel any toe pad pain all night. I'll see if that works again tonight.
I've heard about the holding frozen water bottles too but haven't tried that yet. With the virus I don't even bring my water bottle, book or purse into the infusion room anymore. Mask and gloves on, I sit there like a sphinx trying not to touch my face until the infusion is done. Then I come home, go right to the laundry room to throw all my clothes into the washer and run upstairs to shower! Luckily we don't have kids at home and my cat and husband don't seem to mind!
So I took b12, b6, folic acid, lions mane mushrooms 500mg 2 caps 2 times a day, omega 3 fish oil, alpha lipoic acid. It helped my neuropathy heal quickly, but I did stop the taxol because it only helped some of my tumors and the neuropathy was bad
Thanks for these suggestions! I do all the supplements you mention except the alpha lipoic acid. I'll ask my ND about that. I just looked it up and it does sound good for neuropathy, but may also lower blood sugar. Have you noticed that? Mine always runs low so I need to be a bit careful about that. I get VERY grumpy with low blood sugar!
I didn’t notice low blood sugar. Of course lower blood sugar can slow cancer growth as compared to higher blood sugar I don’t think the ALA effect on sugar is profound.
Hi Patty,
I am not on abraxane or taxol, but I have also experienced neuropathy over the last two years (probably due to letrozole). It used to be quite bad. I would wake up every morning with numb hands. My oncologist wasn't interested when I told her, so I had to fix the problem myself. I take CoEnzyme B Complex by Innate on the recommendation of my integrative doctor.
I looked at other brands too, but they were a much poorer quality and contained lots of fillers. This one has high levels of B1, B2, niacin, B6, folate, B12 (which I was deficient in), biotin, pantothenic acid, choline, TMG and inositol. It is vegetarian, glyphosate residue free (this is an ingredient commonly found in weed killer!) and does not contain magnesium stearate.
thanks Sophia! I take B6 and B12 but not the others. I have a Telehealth appointment with my ND on Monday, I'll ask him about the B Complex you mention. I didn't realize that Letrozole could cause neuropathy too; I took it for about 15 months, my first line of treatment and favorite one so far! Hope you are still doing well on it.
You're welcome. I'm glad I could help. I hope you have a good appointment with your doctor on Monday. If you are not deficient in the other B vitamins you might not need it, but I thought I would mention it anyway. My folate and B12 were low, probably because I don't eat much meat.
I'm guessing it's the letrozole that caused the neuropathy. I don't think it's zoladex or zometa. I've been on letrozole for 22 months.
I took B6 at the time , years ago now when I was having a taxane drug. A complex B is a good idea as it keeps the b group balanced but they were very against me taking supplements so I took the B6 alone in a small dose. I had started to get tingles and I think my doctor reduced my dose at my insistence because I thrive on moving and knew I couldn’t cope if I got it badly in my feet . I still felt the B6 helped. Everyone else I knew seemed to end up with permanent neuropathy
Hi June, many oncologists are against vitamins because they are antioxidants (good for you!) and they fear the cancer will also benefit from them. And of course no drug company is going to include vitamins alongside the drug trials so for them that creates a scientific unknown.
Second time I had chemo rounds I decided to stuff that theory and took quite a few supplements . I certainly wasn’t anywhere near as sick . But the chemo was different so who knows. Mets diagnosed 9 years later so I think I did pretty well.
Thanks for the reply. I can understand the trials not wanting you taking anything other than what they prescribe. In the end though they are dealing with peoples differences. Pluses and weaknesses. So many variables.
I agree, I would not want to have neuropathy. My husband has it, left over from Shingles in his left leg and foot. He takes Vitamin B12 and Omega 3 fish oil capsules. The pain and neuropathy comes and goes.
Good that you have shared your experiences. We need all the information we can get.
I have never been advised not to take supplements. But in any case I don't take any. I try to make sure I eat a well balanced diet. I was diagnosed with MBC in 2013 but I now know I had the Cancer from at least 2011.
Had a lump in the breast that the doctor ignored. Said he was sure it was not Cancer after monitoring it at 3 months intervals. No changes. Of course now I know we have to be our own advocates.
Ugh, I’m so sorry to hear your doctor didn’t opt for better ways to assess your lump Especially with so much technology available to us these days.
And I didn’t realize someone could get neuropathy from shingles. Boy, it sounds like he must have had a very bad case of it. Good he’s taking the supplements although he might want to add B6 to that too?
His diagnosis is Post Herpetic Neuralgia. Not quite the same as Neuropathy but almost. He has pain in his entire left leg with tingling and numbness in the foot. Just my thinking they both affect the nerves just taking a different path, as I understand it.
Neuropathy stinks!!! I've had it now for over a year and it is awful! I'm starting to think that the 60mg dose of Cymbalta helped me. I took myself off of it, though, when I thought it was making me numb to all of my feelings. I wish there was an easy answer to this. Try anything you read here and see if it helps!
Hi, I’m so glad to hear Abraxane has been bringing your markers down. I’ve been on Tecentriq and Abraxane since November 2019. I had very bothersome neuropathy at first. My NP recommended those cold socks. At first I was a little skeptical but I saw several women at the chemo room using them and they said it helped their neuropathy. I ordered a pair on amazon . It’s called Natracare Cold Therapy socks and yes, they have worked to minimize my neuropathy. I can sleep better and not in as much discomfort with the tingling and numbness. Please give those socks a try , they might work. I’ve been using them for every chemo. Good luck and best wishes.
That’s interesting and good to know. Personally I tend towards cold feet so the idea of icing the feet sounds , ugh, not sure if I could tolerate it! Better than neuropathy though because that really creates its own ongoing problems.
Hi. I leave the cold packs in the freezer overnight and use them the next day for chemo. I only put them on when nurse starts the abraxane drip which is about 30 mins or so. I remove them immediately afterwards. It was tolerable and not too bad. Please ask your dr about vitamin b6 and L-glutamine. It doesn’t provide instant relief from neuropathy but in the long run might help. Also if you can, try to walk daily if possible. I find light exercise for circulation is helpful. All the best to you.
Thanks! I'm going to try the ice packs tomorrow. I don't have the fancy socks yet but I have small dental ice packs that I'm going to put on my socks and put another sock on to hold them in place! And then I'll ask for an extra heated blanket!
I'm also going to try holding frozen small plastic water bottles. I do take B6 daily and L-glutamine, 10mg/3x day for 5 days after chemo. And yes, I walk! So grateful that I can still do that too.
Another thought, besides exercising, is to rub your bare feet on something like a carpet square. The stimulus of the rough surface is said to help stimulate the nerve endings.
Homeopathy has helped me stay clear of neuropathy. I take Hypericum 6c, 2 little pellets, twice daily. You can get it from any health food store or vitamin shop. My local grocery store (Yokes) carries it too! I had the tingling/numbness start in my middle toes after my 7th infusion of Abraxane and it is not there now after my 10th infusion.
Homeopathy needs to be better understood. A great place to start is Joette Calabrese and Practical Homeopathy. The remedies are highly diluted and work more from the energy. They spur your body to heal on its own. Not from an herbal standpoint but an energy one. I am always jealous of people in Europe who have better access to homeopaths. Ther are very few in the States. Mine lives in U.K.
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