Failed MUGA without ever taking Herceptin

[Merridith]

Hi Everyone:

I am looking for input.

I have been on the HERA trial as a control for about 2 years.

I was offered Herceptin as were all the controls in the trial. I accepted the offer. Unfortunately, my MUGA is too low. It is 54% which means my refraction rate is 1% below the trial's set cut-off line (55% MUGA) for safety as well as below the population norm. I failed my previous MUGA as well with a 52% rating.

My onc says that probably either I was born with an inefficient heart (just the way some people are born tall or with brown eyes) OR that the AC damaged my heart. Not enough for me to notice in everyday activities, but apparently some people experience significant damage and I might be possibly one of them.

My onc said that she would try to get me the Herceptin outside of the trial (but she said that it wasn't likely she would be successful).

The question is:

Should I accept the Herceptin if I am offered it? Or refuse because of my heart? Are the risks worth the possible reward? I have estimated that at my stage, two years out, taking Herceptin would increase my survivorship potential by approx 5%.

Here are some of my medical facts:
1.7 cm tumour, extensive DCIS, no nodes, two years out. ER-PR- No recurrance so far. Treatment was 4 rounds A/C with Taxol with mastecomy. 45 years old.

Although I am reasonably active, I have always been an extremely poor athlete. For instance in both high school & elementary school I was always the VERY WORST at any sporting event even when trying my best. I am always the slowest hiker/biker etc in a group of peers. (I am now wondering if perhaps my inefficient heart was the cause of my consistant poor physical performance and didn't know it). Although I am slow, I often hike significant distances with a heavy back pack (15-20 k @ day) and swim lengths several times a month for 1.5 - 2 hours at a time. I also have had significant rounds of chronic bronchitus brought on by asthma which have damaged my lungs. I am only aware of this because a medical exam in Australia refused to pass my lungs as fit for scuba diving lessons.

My Onc has also said that increasing my physical fittness program would not likely improve my MUGA by much as I am already pretty active and I am constrained by the body type I was given. Does anyone have any comments on this statement?

Another comment that she made (I don't know if it was meant jokingly) is that I should have drank a cup of coffee before taking the MUGA as it might have improved it enough. (I never drink coffee/tea/caffine products so didn't even think about it on the day of my MUGA) Has anyone tried this?

Regards,
Merridith

[michele u]

Meridith,

That might be your normal ejection fraction. That test can be up to 5 points off one way or the other depending on how your lying on the table. My first muga before Herceptin was 62 and dropped to 47. they did not stop Herceptin because i was not having any symptoms. I thought 50 was the cutoff?

[tammymarie1971]

HI Merridith, I would probably get an opinion from a cardiologist, and then decide from there...You don't sound like you're at a high risk at all, but then again it is better to do all you can to prevent a reccurrence!! Maybe the coffee thing is the answer, although I would still see a specialist!
Tammy

[Shannon]

Hello!!!

FUnny you should mention this, as I am about to post to ask for advice myself... speaking from a spiral of MUGA results.. I began prior to treatment.. at a 58.. at my lowest Ive been at a 42. Currently at a 45 after 14 weeks of herceptin. I show no symptoms, and my cut off (while in the study) was at 50.. so I guess Im surprised with a 52/53

You should take all the advice these ladies give you and run with it.. it is your health, your life.. do you show symptoms? What is your diagnosis? Age? Heart history..? These are all questions you should research, speak with your doctor and look into chatting with a cardiologist...

Any thoughts on having an ECHO??

Please keep us posted!!!

Shannon