Perjeta Side Effects: Neuropathy? Taste change? Others?

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kirklandgal
kirklandgal Member Posts: 63
edited June 2014 in Chemotherapy - Before, During, and After


I want to ask what side effects everyone is experiencing that they think is due to their Perjeta? Specifically, I'm wondering about neuropathy???


I have been on Perjeta with Herceptin for 4 treatments now - started out with TCH, then Herceptin only, then added Perjeta.


Since starting the Perjeta, my neuropathy has worsened. It was severe after the TCH, started to improve in Sept, but has worsened in Oct and Nov. I am wondering if the Perjeta could be responsible for the worsening neuropathy. I paid attention before and after my last infusion and the neuropathy in my mouth and legs definitely changed/worsened within a few days of the infusion. Has anyone else noticed worsening of neuropathy that they think may be associated with Perjeta?


Other things that I noticed and think may be attributable to the Perjeta - increased fatigue, diarrhea/nausea, taste change (my taste was starting to improve on the Herceptin only then went back to weird after starting Perjeta), and a lot of acne (although the acne could be due to my hormonal changes).


Observations anyone?

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  • Chiclet92
    Chiclet92 Member Posts: 14
    edited December 2013


    Hi - this is my first post. Came onto the board specifically looking for Perjeta effects. I'm doing neo adjuvant chemo TCH and Perjeta. I had 2 rounds of all. Today I had my third round just TCH. My doc stopped the Perjeta. I had terrible diarrhea, nausea and cramping. Doc thought this would give me some relief. I'll still have side effects but hopefully not as bad. I also have a shot of Neulasta. I think I might have a tiny bit of neuropathy but it is only occasionally noticeable. I think it is important to note: my tumor was/is close to the skin and easily palpable. It has shrunk to the point that we cannot feel it! So this response is part of the decision to drop it.


    I hope this is helpful to you. Good luck!!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2013


    Kirklandgal - Perjeta paperwork does list neuropathy as a possible side effect. A research doc from MD Anderson that I talked to at a seminar said not really. I had mine combined w/Taxotere/Carboplatin/Herceptin & Perjeta. That tx ended in August and I still have pronounced neuropathy. I'm scheduled for herceptin & perjeta for a year but that will depend on the SEs.


    Sorry I can't add anything definitive but will be watching for others who might.

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  • kirklandgal
    kirklandgal Member Posts: 63
    edited December 2013

    MinusTwo -

    Thanks for the reply.  With Perjeta being such a new drug, I find myself wondering how much is really known about it.  Since I started my Perjeta after finishing my Taxotere, I already had neuropathy but it seems to keep getting worse.  I decided to stop the Perjeta after only 4 Perjeta/Herceptin  treatments although I am still going to finish my year of Herceptin.  The progressive neuropathy is so limiting that I am willing to try anything to stop it from getting any worse at this point.  It will be interesting to see if others reply with their experiences.


    Chiclet - That is great that your tumor has shrunk so much!!  I hope you are doing better with your side effects.  Stay strong!

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