Very ill newbie asks about long term use of perjeta

demostena

Hi, first I'm very sorry that these things might have been adressed already, but I am very ill with ME and after had perjeta/herceptin treatment for more than 9 years now, my body and brain feels like it is breaking down and I have a hard time thinking, searching for info etc. I'm bed bound from ME, and have been so prior to the cancer being discovered. I hope I'm not breaking any rules or irritating people by just starting this thread like this, I'm really sorry if I do. Also, English is not my language and I'm dyslexic, so I might adress things in wrong ways or offending people without wanting to.

In my country they started treating with perjeta just some months before my cancer was discovered, so no-one here has experience with long time use. I've been trying to find anything about this but have not been able to. The first years I had little problems, mostly not able to sleep more than a couple of hours at a time.

Then they changed the perjeta/herceptin into one, and I did not understand that it made me really, really ill before my body reacted allergic after one treatment. For some months back on the original treatment I felt much better but now I am a bit scared. My muscles feels like they can not support my head, nevropathy is getting stronger with every treatment and I have sudden feelings of being really, really ill that comes and goes.

So I searched for a community with people from countries with longer experience with this kind of treatment to as about your experiences with long time use and the development of new side effects, how you cope with them and what to expect.

For me this is quite difficult as I am now so ill I'm not able to go to the hospital for treatment on most days. Thankfully they let me come late in the day, have a bed and a single room ready and are a wonderful support. Everything is also free after a sertan amount is payed in the beginning of the year, both treatments and CT/PET/MR etc. But I have a lot of people I know with ME who have been to ill to even start treating their cancer and I'm afraid time has also come for me to give it up if I'm not able to figure out what is making me so much worse now. Advice, experience and being pointed in the tight direction is very much appreciated!

❤️🩵💙Yours in this sisterhood,

-d

moderators

Hi @demostena and welcome to our community. We're so very sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our amazing community a wonderful source of advice, information, encouragement, and support — we're all here for you!

We're so sorry to hear how ill you feel. Have you had a conversation with your doctor about how you're feeling and talked about other treatments that might work for you that might make you feel less ill? There also might be some complementary therapies that might help manage the side effects you're having. Palliative care might be able to help with these as well, so consider asking your doctor for a referral.

We do also have a Herceptin/Perjeta thread for MBC where you can talk with others about their experiences on this drug combo:

HERCEPTIN and/or PERJETA Threads - Page 94 — Community Discussion Forums

We hope this helps and that others join in here soon to support you. Let us know what else we can do to help!

—The Mods

demostena

Thank you for your kind answer!

Other therapies seems to have even more severe side effects, and as long as this combination is keeping the cancer at bay as good as it has it is not something my oncologist or those he confere with think will help me to a better life.

I have good people around me, both my family doctor, complementary therapies and palliative care, but they do not have any solutions.

Right now I am mostly wondering how others are doing after so many years.

I am wondering if I should try only herceptin, against my oncologists suggestion, He seems to think that as long Im able to hold a cup myself the nevropathy is manageable.