muga

I also get echos but i have not been on any type of schedule. It's only been done if there was reason to be concerned.
el

really. see, now that makes sense to me!

Me too, I'd rather not have them unless there seems to be a problem. hugs.....

The problem with not getting a MUGA every 4 months is that not all heart damage has physical symptoms to alert you that there is damage happening. My heart was fine for about 6 months then the function fell by about 25%. I felt absolutly no different from one MUGA where I was fine to the next when significant heart damage had occured. It was very dissapointing to me because I could no longer remain in the clinical trial I was participating in (AND they took my Herceptin away from me!!!) The good news is that my heart repaired itself in about 2 months and was back to normal. So, it really is important to have your heart monitored just to be on the safe side. Take Care, Linda

I just got back from my muga scan. It has been slowly dropping. I think i started at 57 and then went 52 and today it was 50. Does anyone know what the range is that they will stop herceptin for awhile? I hope they don't have to. Would they kick me out of study then? I know i've been short of breathe lately, maybe its my heart?

I'm e-mailing you separately, but my doctor said I could go to the high 40s before she'd pull me. They also told me there was a LOT of variability in MUGAs - it can change 5 or more points just by moving your position.....

Michelle,
There were some posts a while back about the benefits of taking COQ10 to strengthen your heart muscles. Maybe some of these women will reply.

Warmest Regards
Joe

Hi Michele,

Remember that the heart toxicity from Herceptin could be reversible. So, if your muga score indicated pulling you off the study, they would put you back on, when your heart was acting better.

My clinic says anything above 50 would be acceptable. I've never failed echos so far. I have the last echo coming up later this summer, before the expiration of my Herceptin in Aug.

Good luck! Hugs

Asked my onc today and she said she'd let me go to 45. Anything 50 and higher is totally acceptable she said. Hope yours says the same.

Question on CoQ10...I asked my onc about it today and she won't let me take it (or I should say asked me not to) while I'm on study as there's no way to isolate it's effects vs. the hercepting effecting in preventing recurrance. She said there are lots of people that take it after study. Thoughts on this?? Should I check into it and not tell her? I've seen mixed results on the net....some places say the results can't be independently verified....