Neuropathy from IBrance or Chemo?

[hopenowandtomorrow]

Hi dear MBC ladies: I have been struggling with neuropathy in my fingertips & toes. It started on my initial stage III chemo treatment back in 2016. I did 15 of the 16 prescribed IV chemo sessions. It was stopped due to neuropathy.

My toes & fingers recovered. However, I was shocked to get an MBC Stage IV diagnosis to my left pelvic bone April 2019. After SBRT I started IBrance, Faslodex & Xgeva.

I have been responding well to treatment but I am suffering from IBrance related neuropathy. I was speaking to my Case Manager with the cancer center & she recommended L-Glutamine. I looked it up on the Sloan Kettering app & it is listed as a viable supplement for neuropathy!

I started taking 500mg per day yesterday. I’ll let you know how it goes.

Has anyone else tried this? If so, what’s your experience?

Thank you! ❤️🙏❤️

[jersey-jazz]

The neuropathy in my legs as well as feet and toes is very worrying because I think that the internal trembling I've had since April may be related. (Neither the oncologist or the neurologist can give a reason for the internal shimmering.). Your post about Glutamine may have given me an answer. Right after tomorrow, Thanksgiving, I will buy it and begin it. I will let you know if it makes any difference to the neuropathy. I hope that it makes a difference to you.Thank you!

[mariootsi]

I hope the L- Glutamine helps. I had neuropathy in my fingers and toes when I had chemo my first dx. No one suggested this supplement then. I wish they had. Good luck and I hope it works for you.

[Blondslovelife]

Thank you for posting this. I have it off & on in my hands. I will try L-glutamine also & post how it works for me. I have been off ibrance for a year & have dealt with this for 1 1/2 years now. It's getting y but still a problem.

[viennagirl]

Thank you Hope. I also suffer from neuropathy. The drugs affect my toes. They feel spongy and sort of numb. I think it is related to the Ibrance and Letrozole that I am taking. I recently started taking potassium and it seems to be helping. I hope the L-glutamine helps you and I look forward to knowing if it does help you.

Hugs Marlene

[Cocothecat]

I take glucosamine via my oncologist at Dana Farber and Gabapentin--up to 3000 mg a day--can go up to 4000mg. My Maine-basedPalliative care NP prescribed the gabapentin which measurably helps neuropathy.

[NeverOutOfTheFight]

I have neuropathy in my hands. I started taking a Vitamin B complex and ensuring I drink my 64 oz of water, and it seems to help. Also have tried medical THC gummies at night.

[Merma]

I took L-glutamine after chemo. I took fairly large doses and it worked. But after being on Ibrance 125 mg for 3 years, it started to come back. I hoped it would go away after reducing Ibrance to 100 mg, but it’s worse. Especially since I started teaching school outside. Going to start the l-glutamine again. I like the THC gummies idea. I may start that as well. Hadn’t heard about potassium, but my levels of that are ok.

Beware, too much B6 actually makes peripheral neuropathy worse.

[BarbieBeat]

I was able to cure my grade 2 chemo induced peripheral neuropathy in my fee and legs with a scrambler therapy. My oncologist now refers people to it and they have had similar responses.

[PJBinMI]

Thanks for the update! And it's good to hear that Abraxane is working, though neuropathy can be hard on us. I had a little neuropathy due to spinal stenosis and back surgery and now the chemo I've been on for several months has made it worse. I was on Xeloda for several cycles and now on Taxol since last December. I've been prescribed Gabapentin 300 mg two, then thre, now four per day. And Cymbalta was added last month. The neuropathy has stopped getting worse and has gotten a bit better since adding the Cymbalta. I hope the neuropathy you are experiencing eases up and goes away! Sending healing thoughts....

[Klamato]

Hi, I recently have been experiencing neuropathy in my toes and bottom of my leg! It only started after I started to be treated with Doxil chemo! My PA suggested and wrote for Gabapentin 100 mg. Which she says usually helps with the nerve pain, you are able to increase the dosage depending on your response, so I am starting it today! I will let you know, but it’s worth a try! Good luck! Kathy Fr Syracuse, NY

[hopenowandtomorrow in reply to Klamato]

Back when I had chemo they told me to let them know as soon as possible if I experienced neuropathy. They said they would stop the treatment at that point. I still ended up having it in my fingers & toes. They prescribed Gabapentin too (after the chemo treatment was ended).

I have since weaned myself off of Gabapentin due to the side effects & addictive nature of it.

I now use Nervive topical roll on when needed for my neuropathy.

All the best!

🙏❤️🙏

[Klamato]

I am presently using Gapapentin for neuropathy as a result of my chemo treatment! It is starting to work for me! Thank God!