Herceptin / Chemotherapy and Heart Damage?

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RebzAmy
RebzAmy Member Posts: 322

Did anybody find out that their treatment had affected their heart some years down the line, and if so how? I'm currently being investigated for high blood pressure and a very fast heart rate (which started suddenly and resolved by the next day). I've had various tests and scans and am currently wearing a 24-hour heart trace monitor and a 24-hour blood pressure monitor. I had my treatment from 2007-2008. Thanks

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited December 2018

    Herceptin effected my heart- it lowered my ejection fraction of my left ventricle such that I was almost in co festive heart failure. I had to stop treatmentbwith herceptin. Fortunately, my heart function returned to normal over time.

    I am on a beta blocker and ace inhibitor to help.


    I tried herceptin again and same thing hapoened.

    Good news is I recovered again.

    Theee is a thicjeningbif mt heart muscle from all the meds.

    I am still watched by a cardiooogist and have echo cardiograms about every 6 months.

    Good luc

  • illimae
    illimae Member Posts: 5,710
    edited December 2018

    I think about 12% have heart issues due to Herceptin but it tends to happen during active treatment. I do know of someone (triple negative), who developed heart damage due to the chemo drugs a couple years after completing their treatment.

  • Dolly2019
    Dolly2019 Member Posts: 25
    edited October 2021

    hi guys,

    Just caught this thread when looking at info about Herceptin and heart damage.

    My mum has just been told there is a slight change in the heart function due to Herceptin. They are going to give her a break this month from it.

    Obviously my mum is devastated as she was happy in Herceptin and it was working so well.

    My question is does this mean no more Herceptin ever or can the heart fix itself during a short break? If the break is taken does that not mean a bigger risk of cancer spreading further. So far mum has no sign of the cancer. It had been in her stomach but for last year has been gone from there thanks to Herceptin.

    Also are there other treatments to use after this?

    Dolly

  • illimae
    illimae Member Posts: 5,710
    edited October 2021

    Dolly, I had to take a break for about a month last year (not due to Herceptin itself but a Biosimilar called Kanjinti) and my EF got back to normal. I had echo’s before every treatment for months to monitor it but it stayed normal. I was also prescribed Carvidilol as protective med and have fully returned to normal a treatment and screening schedule. Good luck.

  • AlwaysMeC
    AlwaysMeC Member Posts: 167
    edited October 2021

    I hope this isn't a duplicate comment. Somehow I don't see the one I just wrote.

    Ilimae, do you know what the values should be? I was told normal EF is 50 to 70. Mine has been steady at 55 to 60, but my GLS dropped from 19.6 pre chemo to 18.2 three months later, then 17.1 last week. Did your team monitor GLS? So far, I haven't heard back from my oncologist, but I know they wait until counts are dangerously low before they even consider any type of pause. I am currently on Herceptin/Perjeta.

  • coco5873
    coco5873 Member Posts: 1
    edited November 2021

    Question: My friend would like to know about Herceptin treatment. She cannot currently handle researching all the info, she had triple positive breast cancer and was positive for the HER2 gene before her chemo but the samples from her double mastectomy were inconclusive. They are telling her she has to do 18 rounds of the Herceptin, she has seen studies showing fewer are just as effective. Unfortunately her doctor isn't really up for discussing reducing the number. She has done 13 already but can barely walk up the stairs anymore and she is worried about her heart (she is having an echo next week). She is having what she calls worm like feelings crawling in her head and skin, exhaustion, heart palpitations and gets winded easily. She is doing the treatments every 3 weeks right now.

    Question she has:

    1. How many treatments have people done and are you still showing OK and if so for how long

    2. Is the "worm" like side effect normal? Is this negatively impacting her body or is it just something that your brain feels during treatment and it eventually goes away

    3. Was anyone able to extend the time between treatments to allow a little more time to bounce back from the horrible feelings.

    4. Anything else she should be pushing her doctor to answer or things she should/could be doing to help with the side effects.

    Thank you so much in advance for any help you can offer her. God bless.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2021

    Hi coco5873,

    We are sorry for what your friend is going through! It does sound like it would be wise to get her overall health and heart health looked at before another infusion. We're glad to read she's getting an echo next week. She may even want to consider a second opinion, even at this stage.

    Here is a large content section on Herceptin that may have helpful information.

    Looking forward to hearing from others.

    Warmly, The Mods


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2021

    I had to take a break but ONLY because I didn't have a complete response from Taxotere/Carboplatin/Herceptin & Perjeta. After that chemo, I had surgery and then had to do Adriamycin & Cytoxan chemo before my radiation while Herceptin was on hold. You can't take Adriamycin & Herceptin together. It was my understanding that possible heart damage from Heceptin is usually reversible. Possible damage from Adriamycin may not be.

  • illimae
    illimae Member Posts: 5,710
    edited November 2021

    Coco, about 12% of those on Herceptin have significant heart issues but when we do, the echo should show it with a drop in EF (ejection fraction), which shows how blood is pumping. Typically, if the drop is 10 points or below 50%, doctors will pause Herceptin and recheck with an echo in 3-4 weeks. If it bounces back, Herceptin is likely to resume, possibly with low dose heart meds. If it doesn’t, I believe Herceptin would be stopped and heart meds prescribed.

    I’ve been on Herceptin for nearly 5 years, stopping once for a month due to a low EF from a similar medication. I bounced back, am on heart meds (for protection), resumed treatment and am doing well.

    I’m not familiar with “worm like feelings” but I’ve had some bizarre skin sensations on Herceptin, particularly the feeling on an electric shock (like static electricity) when I am startled and tingling when I get hot.

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