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Old 06-06-2005, 04:43 AM   #1
nikkiuk
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Hi every1

Hope everything is sunny and happy in your part of the world.

Just need a little help and advice......i went for a Muga scan last week as i am receiving Herceptin in the Hera trial, my oncologist said there has been a slight drop in my ejection rate and that i need to be monitored every 3 months with Muga and Echo instead of the standard 6 months.
I am so worried that my heart is giving out after all the nasty Epirubicin i did prior to he Herceptin and that i may be thrown off the trial......i mean i am really ****** off as i am 33 yrs old for goodness sake, i cannot have heart disease as well as cancer????
My oncologist said that ejection rates can be a bit like monitoring somebody's weight in that it can go up and down in a space of months, so he is hoping that it will have either improved or remain the same next time.
When i had my Muga done, i was actually laid up in hospital for 3 weeks after having complications with my breast reconstruction, i could not get out of bed as i was hooked up to a vac machine and varios IV's, do you think this may have made my heart a little lazy??? usually i am up and about walking the dog and doing lots of gardening etc, i am scared as i really do not want to stop Herceptin as i have been on it for a year and have had no problems, i have one more year to go.
Anyone else have this problem?

Really had enough of all the stuff that goes with this disease!!!

Love and light to you all
Nikki x x x x x
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Old 06-06-2005, 07:46 AM   #2
imported_Joe
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Many women on this site take COQ10, it seems to strenghten the heart muscles. It seems to work and the NIH has done limited studies.

National Institute of Health COQ10

Warmest Regards
Joe
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Old 06-06-2005, 11:41 PM   #3
Fontaine
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That is REALLY helpful info, Joe, since my muga was borderline (after my first round of A/C for another Stage 1 three years ago) but we're going ahead with Herceptin, Toxotere, and Cytoxin. I was looking for things that would "beef up" my heart.

If I find out more, I'll be sure to post them!
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Old 06-07-2005, 03:56 AM   #4
*_Christine MH_*
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Hi Nikki,

Sorry to hear you are having problems, but glad to see that you are doing well.

I just wanted to say hang in there. Also that heart problems after epirubicin are quite rare (compared to adriamycin, for example). M.D. Anderson even did a trial giving herceptin and FEC at the same time, without any noticeable heart problems. Your MUGA may just be a temporary setback, as your oncologist suggested, since herceptin by itself can cause temporary problems.

By the way, I will be getting herceptin now off-trial, but it is costing me £20,000 and I'm short and size 8. I just hope that one year turns out to be as effective as two. I am encouraging everyone to write their MPs.

Take care,
Christine
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Old 06-07-2005, 12:45 PM   #5
Rozebud
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Nikki - what was your score and how much did it drop? Mine has gone up and down by as much as 10 points. I am told they can get a different number just by changing the position of your feet! Try not to worry if there is not a pattern just yet....
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