MUGA still dropping -- am OFF herceptin

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janet11
janet11 Member Posts: 262
edited June 2014 in HER2+ (Positive) Breast Cancer
How long after Herceptin is stopped does the LVEF recover? I had only a partial bag of Herceptin on May 1 before they found that my LVEF was 49% (I had my MUGA 2 hours before my Herceptin appointment). They stopped the IV and tossed the rest of the Herceptin.

FYI: my LVEF was 63% when I started the Herceptin, and I got TCH, NOT AC which is more heart-toxic.

I had a repeat MUGA on July 2 (2 months later). My LVEF is now down to 44% and there's evidence (per the report) that my right ventricle is now affected as well and there's "globally reduced contractility". Drat!

Oh well, the good thing is that it's now time to get my port out since I won't be continuing the Herceptin.

Has anyone else had this happen?

Janet
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  • DebbieB
    DebbieB Member Posts: 161
    edited July 2007
    Janet,

    I had chemo 5.5 years ago and have JUST developed heart damage which they attribute to the chemo. My Ejection Fraction is 24%. I started out on 8 different meds and am now down to 6 that will hopefully raise my EF. According to the cardiologist 50-60% of patients on meds will see an increase in the EF from the meds. My cardiologist wants me on the meds for at least 6 months before he tests to see if my EF has gone up. If mine doesn't go up, I will have to have a defibulator/pacemaker put in and he will refer me to a transplant team for evaluation!

    I would have your onc refer you to a cardiologist ASAP especially since it's the Ventrical side that is affected. You need to be on meds before your EF gets any lower. I now have severe cardiomyopathy from the chemo and it would have been much better had I caught it while it was just mild or moderate.

    I don't mean to scare you but I wouldn't wish what I am going thru on anyone. This is worse than what I went thru with the breast cancer.

    PS....there are also some studies that say taking 100mg of CoQ10 will increase your EF. So I am also taking CoQ10.

    Debbie
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  • LittleFlower
    LittleFlower Member Posts: 405
    edited July 2007
    Janet,
    THough I haven't experienced what you're going through right now, i just wanted to let you how awful i feel. My onc has told me that stopping herceptin effects should reverse themselves and so i'll hope and pray that your EF starts climbing. I agree with Debbie with seeing a cardiologist though... use every resource you have. Good Luck, praying for the best.
    LittleFLower
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  • Marsha56
    Marsha56 Member Posts: 86
    edited July 2007
    Janet,
    This happen to me also I went to card. and the meds worked.
    So get in there. Do you know what chemo they will put you on?? See if you can get Trykerb I am on this drug and it has put me in remission! Stay strong!
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  • Brenda_R
    Brenda_R Member Posts: 509
    edited July 2007
    Janet, if you can't take Herceptin, have you asked your Onc about Tykerb? I don't think it has the heart toxicity that Herceptin has. It's worth checking into.

    Nevermind, I see it has the same problems.

    "As with other therapies for HER2 overexpression, TYKERB has been associated with reports of decreases in left ventricular ejection fraction (LVEF). Caution should be taken if TYKERB is to be administered to patients with preexisting cardiac conditions, including uncontrolled or symptomatic angina, arrhythmias, or congestive heart failure. LVEF should be evaluated in all patients prior to and during treatment with TYKERB"
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  • DebbieB
    DebbieB Member Posts: 161
    edited July 2007
    Marsha,

    I am just curious. Are you still on heart meds or did you have a full recovery?

    Debbie
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  • janet11
    janet11 Member Posts: 262
    edited July 2007
    I'm very lucky in that I'm stage 1. So Tykerb won't be planned unless the bc recurrs. And I'm lucky so far in that the lower LVEF isn't dangerous and I'm not symptomatic. Iam going in for another MUGA in 3 months... and was told to call them if I develop symptoms.

    But it was just so strange to me that the LVEF is continuing to decline even after being off Herceptin for 2 months (and the dose I got 2 months ago was not a full dose).

    Thanks for all the comments here!!

    Janet
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  • esserbre
    esserbre Member Posts: 82
    edited July 2007
    Hi Janet,
    I don't know what a MUGA is, maybe because I'm from Ontario? I just had a heart wall motion test yesterday and my onc said I could not have my herceptin treatment today because it was too low. Is it the same thing as MUGA do you know? I don't really know what the problem is if it's too low. Is my heart being weakened by the treatments? I've had four, after chemo and rads and surgery.
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  • janet11
    janet11 Member Posts: 262
    edited July 2007
    Brenda, yes, probably the same thing. The MUGA measures LVEF (Left Ventricle Ejection Fraction), and unless it's >50% geneally, they'll stop the Herceptin. If it recovers in 4-8 weeks, they may restart the Herceptin. for me, it didn't recover, so I'm off Herceptin for good.

    From what I've read, Herceptin heart damage is generally temporary.

    Janet
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  • BethNY
    BethNY Member Posts: 2,710
    edited March 2008
    studies show that it takes 4-6 weeks for 90% of people with low Ejection fraction to bounce back.
    Hopefully this is the case for you.
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  • esserbre
    esserbre Member Posts: 82
    edited July 2007
    thanks Beth and Janet, it was good to hear from you. I was a little upset at first as I was hoping to go back to work shortly. I've been off on disability with our insurance company. My oncologist has now said I should wait another three months while we see what happens with the heart issue. Everyone's been telling me I sould take the summer off, I guess now I will. I was hoping to get back to "normal" life but I can handle three more months, just makes me a little nervous because my mom had a couple heart attacks this year -- makes me feel susceptible to heart damage.
    Actually I just read an article where they think a much shorter stint on herceptin is just as good as a year -- 9 weeks? so that's good news for those who have to stop.
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  • janet11
    janet11 Member Posts: 262
    edited July 2007
    That's what I was looking for: and it explains why after it hit 49%, they just held off for 3 weeks and tried again. When it then was 48% (insignificant drop, but not a recovery), they held off another 6. So far it's been 8 weeks and it's still dropping. I'm assuming that in 3 months, it'll either be recovered, I'll have CHF symptoms, or simply... it'll stabilize and I'll just have a bit lower-than-normal LVEF.

    It's funny. When I started the Herceptin, I knew this was possible. But I also heard that "with Herceptin, it's reversable'. What I'm reading now is that it's reversed for maybe half the people who have to stop it due to low LVEF. A little different.

    But I'd also do it again.

    Janet
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