I am on my 6th cycle of 125 mg IBrance, monthly Faslodex shots & Xgeva shots (every 3 mos). I am experiencing intense Peripheral neuropathy in my fingers & toes.
I know it is a result of toxins. When I was on original Dx IV chemo in 2016 the oncologist told me to tell them immediately if I experienced Peripheral neuropathy. I did at my 11th round of the chemo. They immediately stopped the chemo (I had only 1 more left to do anyway). Over time all my feeling came back in my toes & fingers.
However, I was Dx as MBC 4/2019 and the oncologist has never said anything about Peripheral neuropathy. Yet, in the last several doctor’s visits I have brought it up as a concern. I’m not sure which drug I’m on that is causing it. I assume it’s IBrance but it doesn’t list Peripheral neuropathy as a side effect.
Do any of you have Peripheral neuropathy? If so, what do you do about it? Thank you for any advice you can provide.
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hopenowandtomorrow
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I'm not on ibrance, but I have experienced peripheral neuropathy from letrozole. My oncologist did not seem overly concerned by it when I mentioned it to her and my GP said she would only administer vitamin B12 injections if I had a vitamin B12 deficiency. A blood test showed my levels were normal, so there were no injections. What I have found useful is consuming food and drinks rich in vitamin B12 (kombucha, nutritional yeast, marmite etc). I don't have any issues with peripheral neuropathy anymore. I would still go ahead and mention it to your oncologist or oncology nurses. There may be something they can do if you are suffering from it.
I took 13 rounds of Abraxane 5 years ago. Had mile neuropathy in feet esp toes. It has faded but sometimes I notice it. When I juice greens I feel much better. I don’t notice any such side effect from Ibrance or faslodex
I am also on 125 Ibrance and an aromatase inhibitor. I had residual neuropathy from the chemo too. I have gone for acupuncture and that worked ok. I am taking L-Glutamine 6 gms in the morning, but when the neuropathy was bad, I took that 3 times a day. Sometimes I use an acupressure mat for my feet and an accupressure ball for my hands. Unfortunately, I get neuropathy in my scalp, and there's nothing special for that.
Ive only had 2 cycles taxotere and herceptin but my oncologist asked me if id experienced it.
If you feel its not been taken into consideration, raise it again .... perhaps... "what will you do to stop the neuropathy?" If he/she says "nothing" or words to that effect, repeat it back to them.... "so you're not going to do (or change) anything to stop the neuropathy?".....At this point they usually say .... "well we could..." but if they dont i'd say " can you please record that in my notes". Showing tgem that youre holding them responsible usually works - Its always worked for me!
Sorry to hear that you cannot feel your fingers or toes! Actually, this condition has the potential to be dangerous, especially if you use knives, etc.
I am on Verzenio and Faslodex. I really think it might be the Faslodex. Mine comes and goes. When it gets really bad, my paid med (oxycodone) helps a bit.
I started getting neuropathy in my toes and feet while on Taxol infusions. It got really bad, even after the treatments, it took a year for my feet to feel okay. Then diaganosed with MBC. Ibrance didn't bring the neuropathy back, but when I moved on to Eribulin infusions, it came back with a vengeance. So, it seems most all of the cancer drugs can start it up. My doctor insists the the Eribulin has not caused the reoccurence of neuropathy and that it is still from the Taxol which was 3 years ago...What??
Anyway, hard to explain to somone who has never had neuropathy that toes and feet can be numb, but at the same time HURT. I have found that visiting an acupuncturist has relieved the pain which is wonderful, but the numbness is still there. After my first treatment of acupuncture, the pain was gone! I go once a week to get a treatment. Also lifts my spirits a bit!
I have peripheral neuropathy, but have had it prior to the Ibrance/letrozle (I severed the nerves in my right leg when I broke it in the 90's. It does appear to be getting worse/more frequent. I have been prescribed 300 mg, one at night. I take it with 2 tylenol arthritis strength tablets, which generally put me to sleep. The other side effect you will note is hair thinning/loss.
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