Hi Ladies, just got result of my latest Muga scan and I am down to 51%, so borderline for having Herceptin stopped for a while, is there anything I can do to get my heart function up again ie exercise ?
Also if it is stopped how long before it gets restarted ?
I have had 24 herceptin treatments and am on it for as long as it keeps working. 
Jean
Hi Jean,
Have they told you when they will repeat the scan? What sort of LVEF have you had at previous scans. I know mine yoyo quite a bit from an all time high of 76 down to 42. I haven’t ever been stopped though.When it fell to 42 I persuaded by onc to continue as I had no symptoms. If you are short of breath or have swollen ankles then herceptin will be affecting your heart and at that stage they will often refer you to a cardiologist to do a few checks. If you haven’t any symptoms it could just be a bad reading and in that case I would press for an early rescan. I am around 150 herceptins now!! and my last LVEF was 66 which was pretty good for me. Hope all goes well.
Dawn
xx
Thanks for your reply Dawn, they said no rescan unless Onc decides on one, so in 6 months. I started at 65 which dropped to 55 during chemo , it went up to 57 on last one and now dropped to 51, I feel better now after you saying yours goes up and down, they did n’t think I had anything to worry about. I have no symptoms so I just wait and see.
Jean
Hi Jean,
I have had 3 MUGA scans 80, 79 and 74 but onc nurse said there is a plus or minus of 10 in the score so I am consdered ‘no change’. Someone on here also said to try and move about a bit - wiggle your feet - as that gives a higher score. At my last one I was so relaxed I nearly fell asleep and lowest score.
Hope this helps.
Take care, Liz.
Mine’s been up and down. Best score was after I’d had a cup of coffee with caffeine, worst one, like Liz, was when I kept dozing off. So I suggest you have a coffee before your next one, and rotate your ankles to keep your circulation going.
Shame really, I found it was one of the few times i was able to just lie down and relax and not move, and NOT feel guilty for doing so, but the machine kept beeping when my heart rate dropped below 50. (Which is perfectly within my range of normal.)
Thanks girls for your advice, I have to admit I was very relaxed during the scan, next time I will try your suggestions, it’s worth a try. Really don’t want to come off the drug as I have lung mets.
Jean xx
Same as you Jean, I am supposed to be on herceptin for as long as it works.
Interesting reading. My March heart echo was 67%, the one in June was 57%, so the onc stopped my Herceptin (without informing me in the first place). Still trying to figure out what is going one here.I understand I would have a rescan in a month.
Do you happen to know whether Muga scan and heart echo reading are the same? I never had a muga scan, and don’t even know how it is done.
Dawn, what does LVEF mean?
take care.
hi tillybob,
my herceptin was stopped last nov i had three more to go, i was givem beta blokers by my gp, still taking them now, plus my heart have retuned to normal since i have been on herceptin for lung mets, my onc have also ask for tykerb which is the other target theraphy drug, and i have been excepted if the herceptin affects my heart again.
lorraine x
Hi Jean and ladies,
Sorry I missed you yesterday, I had my penultimate Herceptin yesterday, and I was in late - in after lunch next time too.
My heart function dropped by over 10% on the MUGA scan and I was put on Enalapril to combat side effects of Herceptin last December.
My MUGA’s were 72, 55, 51. My onc said that she had a few patients similar age and fitness to me, displayed similar effects of heart function from the MUGA scan, which she believed to be a false reading.
I was then sent for Echo-cardiogram’s (more detailed I believe and not a machine, like an ultrasound) to compare and these gave higher ejection fractions at 65 both times, so still on the Enalapril and the Echo’s have been done every 3 months, with no signs of dropping ejection fraction. Kept on the Enalapril just in case, but not had repeat MUGA’s since, and not stopped the Herceptin either - was discharged by the Onc back in May, so she’s obviously not worried.
Try asking for an Echo as well as???
Hope you’re well otherwise, and the little 'un is behaving himself
Bev x
Bev x
Vercors,
I think LVEF means Left Ventricular Ejection Fraction which, I think, means the rate at which blood is pumped out of your heart. I also think an echo and a MUGA is the same. I was told I was going for a heart echo and later told a MUGA so I assume they are the same.
Take care all, Liz. x
Vercors I think we are going to thoroughly confuse you. The two scans are as Beverley describes. Sorry butterfly,
Dawn
After further research, I think what butterlfy meant to say is that both were measuring the same thing. For a Muga scan, you are injected with some radioactive product while the echo is non invasive.
Well I have had enough chemical pumped into me, if the echo does the same thing, I would rather have the echo.
6 days on, I still haven’t heard from the oncology dept. Still waiting for some explanation. I feel very let down.
I will see what the next MRI and CT scan have in reserve for me and decide whether to contact the Marsden.
Thanks Vercors for explaining that :). I do agree with you - I would much prefer an echo to a MUGA with the nuclear stuff going into the body plus having to access a vein 2x. My onc said she was prepared to organise echo’s for me but, and a big BUT, they don’t do echo scans at the Marsden and they would have to send me to a different hospital. It just wasn’t worth the hassle. I must remember to do some footwork next time :).I have them done every 6mths. Fingers crossed Vercors for your next scan that you get a good reading.
Dawn
xx