Does Ibrance Cause Neuropathy or Not?

buttonsmachine

Hi All, I would really appreciate it if any experienced and knowledgeable community members could weigh in on this question: Can Ibrance cause neuropathy or not?

According to BCO's Ibrance informational page, neuropathy is listed as a "common" side effect. https://www.breastcancer.org/treatment/targeted_therapies/ibrance

However, the labeling page from Pfizer, which is cited on BCO, does not list neuropathy as a side effect. http://labeling.pfizer.com/ShowLabeling.aspx?id=2191

My MO wants me to start Ibrance, but if it causes neuropathy I'd rather take a different CDK4/6 inhibitor. I have already mentioned this to my MO, who says that Ibrance does not cause neuropathy. (However, my MO did concede that many patients who take Ibrance already have neuropathy due to other prior treatments, so this could possibly contribute to a lack of clarity on this issue.)

So what is the real situation here? What do the drug companies say? What do patients say? It is very important to me to avoid drugs that cause neuropathy from a quality of life perspective. I would really appreciate some clarity on this.

Moderators

Hi buttonsmachine,

We brought your question to the attention of our Editorial Team, who did confirm you're correct -- the prescribing information does not list neuropathy as a side effect of Ibrance. It's possible when the medication first was approved, neuropathy was listed as a side effect, but then was removed from their prescribing information for some reason. We will be updating our site to reflect the current prescribing info. We are also in the process of an ongoing research QA to help catch these types of inconsistencies as time goes by.

We thank you for bringing this to our attention and please let us know if you have any questions at all!

--The Mods

Lexica

I am curious about this, too. I took Ibrance for 2 years as part of the PALLAS trial and I feel like my neuropathy (while not bad at all - only in my fingertips) did seem to worsen slowly over the last 2 years. Pure uncertainty here and only anecdotal info but... curious if others will chime in.

buttonsmachine

Hi Mods, thank you for checking on this - I really appreciate it! I am cautiously hopeful that I can start Ibrance without anything major happening in the way of neuropathy.

Lexica, thank you so much for chiming in also! I really want to hear from other patients too, because I think sometimes we notice changes in our own bodies before the medical community catches on and recognizes that what we are experiencing is a real thing. (The classic example of this is Taxotere related permanent hair loss.) I think sometimes as patients we "get it" before the doctors do, just because we have actually lived through the weird things that sometimes happen to us, and we recognize in each other that we have shared experiences.

My neuropathy is also relatively mild at this time (mine was caused by Taxotere), but I really don't want it to get worse than it is.

BlueGirlRedState

Please keep posting about unlisted SEs that might be SEs. It seems like many cancer treatments and cancer itself and other medical conditions/treatments might cause/contribute to neuropathy. I feel like I am getting increasingy clumsy. Is it getting older? cancer? arimidex? Ibrance? radiation and tamoxifen in 2009? Chemo/bilateral AI/tamoxifen in 2016? Ibrance/Arimidex in 2019? All of the above?

MinusTwo

BlueGIrl - I did make an appointment and saw a Neurologist. At least I felt I was hearing the cutting edge of their specialty.

Spookiesmom

I’ve been on ibrance about a year. I already had neuropathy in my feet from diabetes and taxotere. I don’t think it’s any worse.

buttonsmachine

Hi All, so I am supposed to start Ibrance today. Big day. I received my Rx in the mail from the specialty pharmacy a couple weeks ago, but I haven't even opened it until today. I just didn't want to face this new chapter until my start date was here.

Anyway, as I was looking through the papers the pharmacy sent, I see that "numbness and tingling of the arms and legs may occur." Huh. From past experience, I know that "numbness and tingling" is one of the euphemisms for neuropathy.

They told me "numbness and tingling" when I had neuropathy from Taxotere, but my neuropathy felt more like beestings and needle jabs. Every moment suspended in pain. Fortunately my body managed to heal somewhat on its own, and it's not as severe now. But that experience put the fear in me, and that is why neuropathy is on my list of things to avoid.

Anyway, I'm going to start Ibrance. My cancer grew back in my axilla again despite Zoladex and Faslodex, so I clearly need something more treatment-wise. Maybe Ibrance will help me. I feel like I should at least try it, and I'll look out for any "numbness and tingling."

Thank you all for your reassurance.

Sunshine99

I'm only on cycle three and have not had the tingling. I do remember well the pins an needles of the Taxotere/Cytoxin chemo I had in 2008. I felt it in my trunk and it was super annoying. It must have resolved, eventually, but I don't remember when.

The biggest SE with the Ibrance is the low ANC and WBC. Your oncologist will monitor those. Hefty price for those pills, right? Did you talk to the specialty pharmacy about the Co-Pay Assistance program? I believe it's directly from Pfizer and it covers the $70-$75 co-pay. I pay nothing for this drug.

buttonsmachine

Hi Sunshine99, I'm glad you haven't had any neuropathy-like symptoms on Ibrance. I hope that since Ibrance is a very different drug than TC chemo, the thing that happened before will not happen again.

It does seem like Ibrance is hard on blood counts, but I know my MO will keep an eye on things. My counts only became normal again a few months ago, actually. They had been acceptable, but not "normal" ever since iv chemo a couple years ago.

Anyway, I hope Ibrance will help me. I was fortunately able to get help paying for Ibrance. My jaw definitely dropped when I saw how much it costs. I had no idea.