HERCEPTIN and/or PERJETA Threads

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2022

    haven't heard that but I'm on PHESGO shots now.

  • MoCoGram
    MoCoGram Member Posts: 83
    edited March 2022
    Big Peaches, what is the substitute you received instead of Herceptin? I haven't heard about a shortage of Herceptin. But, I've been getting an infusion of Kanjinti, which is a biosimilar to Herceptin, since December 2021. I haven't noticed any side effects from Kanjinti. I hope your headaches go away.
  • Elderberry
    Elderberry Member Posts: 993
    edited March 2022

    I haven't heard of a shortage. I am in Canada and my next infusion is this Tuesday.

  • lulubee
    lulubee Member Posts: 1,493
    edited March 2022

    I just got my first Phesgo injection. What side effects should I expect?

    I am also getting Gemzar and Carboplatin, same day.

    ~ lulubee

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2022

    Have you been on Herceptin and Perjeta before? The only difference I noticed was a few of the usual side effects coming back like watery eyes and blood in my nose. No diarrhea though. If you’ve never been on H&P before the S.E.s might be a little stronger - diarrhea when I first started was the worst but it got better after a few months.

    The first shot is over 8 minutes, make sure they do take the full 8 minutes, I find it pretty painless as long as the needle goes in far enough and the delivery is slow enough

  • lulubee
    lulubee Member Posts: 1,493
    edited March 2022

    Huh. Interesting, Olma61. I've had watery eyes and a bloody nostril but I was chalking that up to allergy season. Maybe it's Phesgo. No diarrhea so far but then I've only had one injection. The Gem/Carbo I'm also getting is constipating to me, so maybe I'll hit the sweet spot in the middle somewhere, LOL.

    I've never been on H&P before. This is the first time in 15 years that I've had any Her2 positive results turn up on genetic testing.

    ~Lulubee

  • DGHoff
    DGHoff Member Posts: 624
    edited April 2022

    I am so happy to learn that insurance finally approved me for Phesgo! I've been doing infusions every three weeks for over six years (takes an average of just over 2 hours from start to finish) and to be able to just get a shot is going to be such a huge time-saver for me. Not to mention that I haven't had a port for almost four years, so no more hunting for a good vein! Hooray!

    Glad to hear most people don't have too many unusual reactions. I still get watery eyes and drippy nose from the regular infusions, so I don't know that I will fare much differently.

  • amontro
    amontro Member Posts: 504
    edited April 2022

    How have I missed this thread all these years? I've been on Hercepitin and Airmidex since 2008, Stage 4 Denovo.

    Last year in January, I was given Kanjintin and after a few infusions, I didn't like the way I felt, so I went back on Herceptin.

    I wake up in the mornings and feel like I'm drowning, with runny nose, post nasal drip, congestion, watery eyes, and I've always suspected Herceptin, but I don't want an alternative. My GP prescribes Fluticasone and it doesn't help much.

    Sure glad I didn't read about a Herceptin shortage. I don't need any more drama with my health.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited April 2022

    Interesting that no one else has heard of a shortage from their Onc's. I see mine again Monday and will ask about it, they gave me something called Ogivri instead, said it was bio-similar to Herceptin. Headache's lasted about 2 weeks and a little pinch like feeling in my back that had me worried but it's gone now too.

  • DGHoff
    DGHoff Member Posts: 624
    edited April 2022

    Bigpeaches, I hadn't heard of shortages either, but before I was approved for Phesgo, my infusion clinic was only offering Herceptin if absolutely requested. This started a little over a year ago. They didn't say anything about a shortage but just said everyone was automatically being switched to Trazimera or Kanjinti. I just assumed the biosimilars were cheaper, but maybe it was because of shortages.


  • BigPeaches
    BigPeaches Member Posts: 266
    edited September 2022

    Sorry I didn't come back, had Covid! It was awful but thankfully I am over it. I am on Trazimera now, I suspect it's cheaper, I don't really know how much it is as I meet my deductible usually the first week of January. I am concered about one spot on my back, if I put too much weight on my left leg, it feels like I'm being stabbed in the back. We did some fall cleaning this weekend and I think I just did too much lifting. I have scans in a few weeks so we'll see.

  • BigPeaches
    BigPeaches Member Posts: 266
    edited September 2022

    Sorry I didn't come back, had Covid! It was awful but thankfully I am over it. I am on Trazimera now, I suspect it's cheaper, I don't really know how much it is as I meet my deductible usually the first week of January. I am concered about one spot on my back, if I put too much weight on my left leg, it feels like I'm being stabbed in the back. We did some fall cleaning this weekend and I think I just did too much lifting. I have scans in a few weeks so we'll see.

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