Ending treatment early due to cardio issues

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jchandler
jchandler Member Posts: 1

Has anyone ended herceptin treatment early due to cardiac toxicity? (i.e. in 6 mos. or 9 mos. vs. the recommended 12 mos. of treatment) What is the effect on the recurrence of the Her2 cancer if the treatment is ended early?  Thanks for the insight.

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  • blondie45
    blondie45 Member Posts: 580
    edited May 2010

    I had the end my herceptin early. I received 6 months of herceptin (first along with my 12 weekly Taxols and then once every 3 weeks for 3 months). My ejection fraction went down to 25% whereas normal is like 50 to 60 I believe. I have had 2 heart meds and Coumadin added to my already enourmous meds list and am feeling overwhelmed but my cardio doc said that in 3 months time the last echo went up to 35% from the low of 25% which is great news. I am a little disappointed that I most likely won't get the herceptin back but find comfort in knowing that if I lived in Canada or Europe I most likely already had what their recommendations for herceptin are. I started a low salt diet and am up to walking on my treadmill 40 minutes a day which can only help in everything as far as I am concerned. Did you have to stop early?

  • Glad2BHere
    Glad2BHere Member Posts: 70
    edited May 2010

    I had to take a break for a couple of months from Herceptin due to a low ejection fraction.  I had an angiogram done and my arteries were fine.  the Cardiologist put me on heart meds and now I am back on the Herceptin. I won't get to make up my missed doses, but my Oncologist is involved and knowledgeable about many of the current Herceptin studies.  There is a Finland study where the patients only received 9 doses and the results are just as positive- I'm sure you can google it. The 1 year of Herceptin is just the protocol that was originally tested. There are several other studies being done that are favorable for less doses as well.  That made me feel better. 

  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited May 2010

    I had to end at 6 months because my score went down in the low 40's (but I started at 52, just barely in the "normal" range, so my overall drop wasn't that large).  I had the same question you have and was told (both by my oncologist and by others on the forums) that there's research that shows 6 months may be as effective (or "is as effective," I don't remember which) as the full year.  The full year is usually done because that's what the original research did.  I'm on coreg for the heart damage; one cardiologist told me that about 1/3 of women get better, 1/3 stay the same, and 1/3 get worse -- I plan to be in the "get better" group and am also watching my diet (but I enjoy life, too!) and am exercising much more regularly.  I would love to get off the coreg and blood pressure meds.

    Anyway, although I was unnerved at having to stop herceptin, I don't want more heart damage, either, and now (5 months out from stopping) I'm at peace with it.  Best of luck to you.

  • hansvall_c
    hansvall_c Member Posts: 3
    edited June 2010

    Hey ladies. I have not had to stop my Herceptin, but am involved in a HER2+ trial that includes Avastin. When a mini-stroke caused by the Avasin forced me to finish with that drug. My onc. reminded me that I had 9 doses of a potentially favorable drug. 9 doses I would not have otherwise received. My stroke caused no permanent damage, so if the Avastin was to help, maybe 9 doses were enough to do something!

    I have heard the same things, a year of Herceptin is just what they started with so that is the protocol, I won't be surprised if in the next five years they complete more studies showing that less treatments work just as well. 17 treatments is the protocol in Canada right now. I have 6 more to go : )

  • blondie45
    blondie45 Member Posts: 580
    edited June 2010

    hansvall_c - Thanks much for reminding me that the standard treatment protocol in Canada is 17 treatments, the number of treatments I had before they had to be stopped from a low ejection fraction. These posts are what keeps me going and hoping I had enough. I am on 3 heart meds currently and still working with cardio doc to find one that does not cause extreme fatigue but after 3 months my ejection fraction went up from 25% to 35% which he said was very good.

  • DebbieB
    DebbieB Member Posts: 161
    edited June 2010

    Hi Blondie45, I'm on 5 different heart meds for heart damaged caused from Adriamycin 9 years ago.  My ejection fraction was 18% and it took a year to get it up to 40% and another 6 months to get it to 60%.  My cardio put me on a low dose of Coreg at first and then started upping the strength.  The fatigue was unreal and I felt awful.  He pretty much told me to deal with it that he needed to get my heart function up.  Within the first 6 months he had me on 80 mg which I am still on.  I started taking all my heart meds at night and it made a world of difference in the way I felt during the day.  Now I feel normal about 90% of the time.  I also switched to a female cardiolgist and the last time I talked to her about coming off the drugs she said I will be on them for the rest of my life.  She said it was too risky to take me off of them.  You might want to try taking your meds at night and see if that will help with your fatigue.

     Debbie

  • blondie45
    blondie45 Member Posts: 580
    edited June 2010

    Debbie - Thanks for the suggestion of taking the meds at night. I already changed to doing that. I am hoping that if I have to stay on lisinopril that I can cut the dose somewhat or something. With having fibro on top of everything and taking the heart meds and tamoxifen I do not have too many normal days where I can function very well. I was hoping Coreg was not as tiring but sounds like it is, not sure if he will change me to anything else or not. I felt better today and yesterday and it is warm up here today so not sure of what is causing my extreme fatigue some days. It is so hard to tell with the fibro, but it is different exhaustion than the fibro tiredness I had before my diagnosis.

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