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Hylecta

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Is anyone receiving Hylecta only? I was dx October 2011 with MBC. Was on Herceptin and Perjeta until August 2015. Then Herceptin only until 2019 when we switched to Hylecta. Hylecta was easy breezy. Until 2022 when we found some pesky small lung mets. Wondering if Hylecta was not a wise choice for someone with MBC. Thank you in advance.

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  • margaritams
    margaritams Member Posts: 183
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    Hi jacque1102. I'm also receiving only Hylecta. I was diagnosed with MBC in 2015 and went through a bunch of treatments including Herceptin and Perjeta, both with and without Taxol. After progressing on Kadcyla, I went onto a combo of Keytruda and Herceptin. To be honest, I'm not sure why I wasn't also given Perjeta - maybe it is not indicated with Keytruda - but due to side effects that I had attributed to Perjeta earlier when I was on it, I was perfectly happy to have only Herceptin. My infusion was also switched to Hylecta a year or more ago even while I was still getting infusions of Keytruda. When I exhausted the recommended 2 years on Keytruda, I remained only on Hylecta and I've been NEAD for a few years now.

    I've also sometimes wondered if Hylecta alone is sufficient to fend off progression but since the few and minor side effects I have from Hylecta are manageable, I've decided to just go with it for as long as I can. I totally understand the temptation to second guess prior treatment decisions in the face of a progression (I'll always wish I'd just had a double mastectomy back in 2005 despite my doctor's recommendation that all I need was the unilateral - I ended up with inflammatory MBC from a new primary in my remaining breast 10 years on) but since we can't go back in time and change our decisions now, we will make ourselves crazy with second-guessing them in hindsight. All we can do is try to make the best, most informed decisions we can with the information that we have on hand. Plus, perhaps you are in a better position physically to manage the treatment for your progression since you've had a long break from Perjeta. What was the reason it was dropped in 2015? Was it side effects? Will you be going back on it now? What's your treatment plan?

  • margaritams
    margaritams Member Posts: 183
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    By the way, have you experienced muscle cramps while on Hylecta? I get these pesky aches - usually in my legs - that feel like that pre-cramp ache that usually comes just before a full-on muscle cramp. They usually go away so long as I move and reposition my legs but I've always wondered if they are due to the injections or maybe a result of the cardio-drugs I take to protect my heart from Herceptin/Hylecta. (I've had incidents of low ejection fraction from treatment before that resolved with a short break from Herceptin).

  • jacque1102
    jacque1102 Member Posts: 14
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    Hello Margariams. Thank you for the conversation. I stopped Perjeta in 2015 due to side effects. Indeed, I hear you about how we can second guess or reflect what may or may not have transpired through the course of our treatments. Hylecta was a breeze and my QOL was amazing. Lung mets popped up in 2022 which led me to the Enhertu treatment. The plan for now is to remain on the Enhertu but I would love to go back to Herceptin and Perjeta. Been living with MBC for what will be 12 years in October of this year, I think treatment fatigue is also catching up. I won't stop what is now working but I sure do long for the Hylecta days. It kept those pesky mets at bay for a long time. I do get muscle cramps but we determined that was because I was dehydrated from Enhertu and have low Mg. I drink a ton of water with pedialyte to help with the electrolyte issue, take Mg, and eat a banana every day. I have not had a low ejection fraction yet. fingers crossed it stays that way. Have a relaxing evening and thank you again for the chat.

  • jacque1102
    jacque1102 Member Posts: 14
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    Very glad to hear that you are doing well. May Hylecta continue to do its job.