Heart issues???

fourboysmom · 07-19-2006, 11:49 AM

Help...I am somewhat concerned about my heart function. Had 4 TCH (actually weekly Herceptins), then 4 A/C without Herceptin. I am now every 3 week Herceptins for a year with 2 or 3 remaining. My initial MUGA was high 60's, actually one report said 71 (but I hear that was probably too high). Anyway, one year later I am at 57. That was 2 treatments ago. I don't know if its the heat or what but I gotta rest every couple of minutes, and just don't feel right. I did call my Onc...waiting to hear back.
Should I opt out of the last Herceptin treatments? I feel like I can't win either way...I am 39 and too young to feel weak and short of breath, and can barely keep up with my kids. Thank you for your input, Janet

Sandy H · 07-19-2006, 01:10 PM

Have you had your blood checked recently? When my hemogobin is down to low 11 or high 10 then I get very tired and short of breath. I will eat more greens (beets)and it brings it back up in couple of days and I am fine. At first I thought it was my heart until I started looking at my blood work. Its always good to check with your doctor. Hope this helps, Sandy

lexigirl · 07-19-2006, 01:25 PM

Janet,

I too had the shortness of breath. I had my usual muga scan and my heart was becoming enlarged. I was off of the herceptin for about 5 weeks and my heart improved. It has slowly been coming back to normal and my ef has remained in the low 60's. They are thinking it may have been the a/c tx and not the herceptin after all.

I agree with you that either the heart problems will get me or the aggresive cancer. Can't win.

Love and Prayers,
Lexi

Berta · 07-19-2006, 02:51 PM

My Muga went from 69 down to 52 with chemo. I started walking and worked up to 3 miles a day and it went back up to 61 in the three months between chemo and herceptin. I just fininshed herceptin. My last muga was 51 so I just squeaked by to finish it. I recommend walking. I'm thinking that my heart functioning can return if I continue to exercise and start eating right. If your having shortness of breath, you should have it checked out but I wouldn't be afraid to continue the herceptin as long as my muga was over 50 and the doctor didn't find anything else wrong. That's just how I felt about it and how it worked for me. BERTA

Cathya · 07-19-2006, 03:05 PM

Hi;

I have been off herceptin for almost 4 months because of, originally, a low muga score. It dropped to 48 for 4 months (2 gated heart scans) and then at 42 I was taken off herceptin. After 2 months my muga was 52 but my heart was enlarged so I continued off herceptin. My last scan (two weeks ago) shows that my heart is back to normal size but my muga score was 48.....scream!!! In any case there is a % error in these scans so my onc is sending my for an echocardiogram and if things are normal he will put me back on herceptin. I am hopeful. It's just one of those things. I was on herceptin for 8 months before I had to stop......as I am NED right now and feel good (no longer so tired...I believe the enlarged heart was the thing that made me tired more than the low muga score) I figure my original 8 months did me good.....lol. This new test apparently gives better, more accurate results so perhaps your doctors could consider it?

Best regards,

Cathy

mamacze · 07-19-2006, 09:12 PM

Dear Janet,
We can all guess until the cows come home; but in fact, as much as we like to share our relevant experiences; we really don't know why you are short of breath.
You are absolutely right in saying that being so weak and out of breath at the age of 39 is not normal. You have 4 boys who are depending on you....get on the phone and tell your oncologist that you are not feeling right...tell him your symptoms. You have too much riding on maintaining acceptable health to put off reporting these abnormal symptoms.
At the same time, take comfort in knowing that many of us ladies have had our MUGA's drop, go off herceptin for awhile, then later, when our MUGA's improve, go back on.
Hang in there with us girlfriend and let us know what your oncologist says!
Love Kim from CT

CPA · 07-20-2006, 06:03 AM

I tend to agree with the other posts.

My wife has been worried about her heart from the onset of chemo (TCH). I think sometimes more than the cancer itself. She was also a healthy 39 at diagnosis and is still tired and weak at times (4 months of Herceptin to go). She is especially tired 2-5 days after herceptin.

You are still within the normal LVEF range (above 55%). Since you only have a few treatments remaining I would probably go for it. From the studies I have read, some have long term decrease in LVEF, but most are usually able to get close to their baseline after treatments end.

With your "double whammy" chemo regimen and chasing after four boys, you are allowed to be tired. Don't force yourself to think that you should be doing everything you did prior. You will get yourself back to normal in due time.

Marlys · 07-20-2006, 07:27 AM

Janet,
My MUGA never got very low-maybe 63 but based on what people here said I began taking Co-enzyme Q10(150 mgm)daily. That dosage was based on nothing more than that is what the bottle at Costco had to offer. I also started doing the treadmill and water aerobics everyday. My next MUGA was up to 72. Not bad, huh?
I might mention that I was diagnosed with left ventricular hypertrophy due to untreated high blood pressure in 1990. My cardiologist says my heart is as "strong as a horse" based on a stress echocardiogram done 1998.
Again you should let your oncologist determine what to do based on his assessment of you and don't let any of us diagnose you long distance.
Best wishes and love,
Marlys