Help with neuropathy

AMG2

I just had my first round of Taxol + herceptin yesterday (11 to go), and my hands are already weak/tingly/painful today. I iced both hands and feet 15 min before, all during, and then an hour after. Also had a reaction to the Taxol, so it got slowed way down. Anyway, the neuropathy is scaring me, especially given that I've got 11 more rounds to go. I've seen mention of use of either glutamine or glutamate on here, but am not finding it now.

I'd appreciate any and all tips on how to prevent this going into next weeks' infusions.

Thanks!

Anonymous

I had a little neuropathy near the end of Taxol. I added 1000 mcg of vitamin B12 and an antihistamine. That seemed to help.

Things I was already doing: icing, magnesium, fasting about 36 hours, Epsom salt bath within a day of Taxol, and low dose of Lyrica for sciatica.

I currently don't have neuropathy from chemo. Only have a little numb spot from sciatica. I no longer take Lyrica or B12.

Hope your neuropathy decreases.

AMG2

Thanks so much Serenity. My left (dominant) hand is getting more numb by the minute, and it's freaking me right out. Do you happen to recall how much magnesium you were supplementing, and was the fast before or after the taxol?

Anonymous

I'm a southpaw, too!

I don't remember how much magnesium. I like a variety of sources because oral magnesium can lead to diarrhea. I think I used the magnesium calm drink for extra hydration. I ate prunes (start with a few). Even took a tablespoon of blackstrap molasses if I felt I wasn't getting enough calories.

I fasted a day before Taxol and about 6 hours after. (30-36 hrs)

You could also try nerve flossing. It helped heal my sciatica. YT has good videos by physical therapists.

AMG2

Thanks again, I'll have a look at nerve flossing, and try a fast before next week, up my Mg intake and supplement with B12. Fortunately, I see my oncologist before the next infusion, and can discuss it with him as well.

SpecialK

AMG - I used 30g of L-Glutamine - taken in powder form dissolved in a cold non-acidic drink in 10g servings three times a day. I do NOT recommend mixing it in with food! Lol! I also took a B6 capsule - standard dose, and Acetyl L-Carnitine, standard dose. This was in addition to icing for all 6 infusions of TCH, but I did not continue icing through the balance of Herceptin. If you want to try this please run this by your oncologist beforehand. I purchased the powdered L-Glutamine at my local health food store, but you can also order it online. I did have neuropathy after the first infusion - fingertips, toes and tongue. It resolved prior to the next infusion for the first three, but stayed and slightly intensified for the last three. Neuropathy remained for about 90 days, but was slowly resolving over that time, and I have none now. Wishing you the best!

AMG2

Thanks, Special K!! That is such comforting and helpful information to have. I'm sorry you also had neuropathy after the first infusion, but it's so comforting to know, this doesn't just portend total loss peripheral nerves by the end of 12 infusions. I will check with my oncologist, and if he agrees, add some glutamine, B6 and A-L-Carnitine to my routine. My understanding is that it's the taxol, as well as the cremophor (vehicle) in which the taxol is delivered that cause the neuropathy, and that the herceptin doesn't affect the nerves, just the heart sometimes.

My best to you, too.

moth

It's B6 that is supposed to help with neuropathy. 100mg a day is what I take

I took L-glutamine in 2018 (30mg/day) but have been avoiding it this time around as it doesn't always play nice with the liver & I have liver mets.

There are a handful of studies showing aerobic exercise is helpful. During chemo infusion you want to constrict the blood flow to the extremities - hence the icing. But at all other times, you want to promote it. So walking, dancing, running, massage. Keep extremities warm, wear socks and mitts if you have to - do not let them get cold. Nerves regenerate but slowly and they need good blood flow.

Also make sure your icing is effective. IME, if it's not making me want to cry, it's not cold enough. I swap out my ice packs every 30 min, I bring them all in a hard sided cooler with additional solid ice packs keeping everything super cold. A couple times I used the Fast Freeze setting on our deep freeze overnight for my packs but that made them unbearably cold and I almost got frostbite one time so I stopped that but depending on your commute, storage etc, getting your ice packs cooler might be necessary.

AMG2

Alright, Moth, that is also what I needed to know. And having read that, my feet were about to make me cry, but my hands not so much, and the hands are what are suffering today. It's 11 more days of my life that I need to allow myself to feel uncomfortable.

I'm sorry about the damn liver mets. Cancer just sucks. Also, since I'm talking with you anyway, I wanted to tell you, I love your posts, and SpecialK's, and SerenitySTAT's and am so grateful for all your wisdom.

SpecialK

AMG - happy to help, and I am gratified if anything I have said is helpful. That is the reason I stay here on this site - I would feel remiss if I didn't pass along any hard earned collective experience to those who are new to this now. I brought my own icing supplies in a hard sided cooler as well - and I was the only one icing in my center - but this was 10 years ago. I did use frozen peas for my hands and I dug my fingertips into the bags so they molded around my fingers. I also wrapped insulating material around the whole hands icing set up to try to keep everything cold. I brought a Tervis Tumbler full of ice chips and held those in my mouth throughout the Taxotere infusion as well - both for mouth sore prevention (I got a dozen or more on the first infusion - very unpleasant) and for the neuropathy in my tongue. How long is your Taxol infusion? My Taxotere was 60 mins and required a swap as moth says above. Hang in there!

AMG2

Yesterday's was supposed to be 60 min, but ended up being 120 due to my reaction. I would imagine they'll adjust my premeds to allow the next ones to be 60 min. I may bring some ice buckets with me next time to plunge my hands into.

Anonymous

For icing my fingers I used large water bottles filled partly with frozen ice. I froze them tilted. Top up with water and place my fingers around it. I would switch hands when my fingers started hurting. A large solid piece of ice stayed frozen longer than some of the ice packs I had. Bring a towel though.

Still able to use my smartphone. My neuropathy was in my feet.