Herceptin canceled- muga went down

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Trinity789
Trinity789 Member Posts: 55
edited June 2014 in HER2+ (Positive) Breast Cancer

I am 4 months out of chemo, 1 month out from rads....now the doc cancelled Herceptin. I was supposed to have it until Feb.

Muga test started at 63,then went to 61 and this week 50%. I wonder if the Rads pushed my body. Doc said normal is beween 50-70 and that it should recover. Any feedback?

I am tired and ache, feel very stiff. For some reason the cold is causing me some nerve problems that I did not have before or during chemo and thought that I had escaped the effects. Maybe its the Herceptin. Besides the tingles it felt like I had electrical shock currents coming out of my hands when I flexed them. Warmth makes it go away.

Hope everyone is doing well.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2011

    I'm sorry about that.  Hopefully, you will recover soon and be able to start herceptin again.

    Funny, I just had a cold and experienced some nerve problems too.  Maybe it's something going around. I was freaked because I'm scheduled for surgery on Monday and thought it would prevent it - I'm fine now though.

    Best to you! 

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited October 2011

    I guess this is all relative.  My ejection fraction went down to 45 and I still got Herceptin.  But  my beginning ejection fraction was 55. Perhaps this is why I continued to get it, because it didn't go down by that much.   I had a later test and it went back up to 55 without having had me stop Herceptin. I did have this low ejection fraction right after rads....

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited October 2011

    Trinity, I was stage I too. When I started chemo and Herceptin, they told me that I shouldn't worry if my ejection fraction went down and they had to stop before having a year of it. In Europe, it is pretty common to just get Herceptin for just 18 weeks and there are small studies that show that is effective. There isn't any large enough compartive study of 18 months vs 1 year of Herceptin so in the US the standard is still one year.

    It turned out that my MUGA stayed fine and I was able to get the full year, but from what my onc said, if they had had to stop it early, they wouldn't have tried starting back up. I think being stage I enters into that decision because the risk of recurrence isn't that high after having had chemo and 6 months of Herceptin. The MUGA isn't that accurate a test so some variation might just be test variability. 

    CoolBreeze/Ann, I'm so sorry to hear about your mets. I hope that the surgery is going okay for you. I know that you had such a strong postive attitude too. My thoughts are with you. 

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  • noellech
    noellech Member Posts: 86
    edited October 2011

    Hi,

    I had the exact same thing happen, and I just stopped the herceptin. I had received about nine months worth of herceptin treatment and nobody thought it was worth the risk to continue, especially since I was stage 1. I have been followed by cardiologist since then and everything seems like its back to normal. I think if you have completed six months or more, you should be good - you've already done almost all of it. Good luck. Noelle

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  • blondie45
    blondie45 Member Posts: 580
    edited October 2011

    I also had to stop the Herceptin after 6 months, my ejection fraction was down to 25%, that was almost 2 years ago. After 1 year it was back up to 47%, so almost back to normal, but the cardiologist and oncologist and myself all decided that 6 months was enough and since mine went so low, not to risk any more and that is what I did. Bluedasher, yes I put very much hope in the studies in Europe for shorter periods. So far, fingers still crossed!  It has been 2-1/2 years.

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    My wife will start Taxotere plus Cytoxan plus Herceptin 11/30.  She will have a baseline MUGA next week.  The oncologist said she will have a MUGA scan every three months.  How often did you all have a MUGA scan while on Herceptin?

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  • abatellik
    abatellik Member Posts: 80
    edited November 2011
    I had to stop my Herceptin at the end of August because my EF was 45 (down from 55). I was off the Herceptin for one month, and my EF was at 57, so I could start up again. Now they are monitoring me every month (either by muga or echo).My Onc said most people who experience problems will once experiences it once.  I will be scheduling my echo soon to see how the last 2 rounds of Herceptin treated my heart, so I appreciate prayers! Hope all goes well for all of you.
    BlairK, I was every 3 months, now it is once a month since I did have some problems. I didn't think I would since I am only 31 but evidently that doesn't have anything to do with it.
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  • sharont68
    sharont68 Member Posts: 124
    edited November 2011

    My EF iniatially dropped because of the Adriamycin (55% to 31%) It came back up to about 45% and I was given the loading dose of Herceptin which sent me into heart failure. I was told by my onc that I would never be able to do Herceptin because my heart just can't take it....which caught me by suprise because I was so young at the time! I had my only dose of Herceptin in NOV 08 and I've been NED since...so...hopefully I'll stay that wayLaughing.

    Best of luck to you!

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