Cardiomyopathy, Cardiotoxicity, LVEF, CHF
Been away for a while, dealing with 'regular' life stuff (Crohn's disease, one great kid getting ready to go to college, figuring out what to do for other great kid, with autism, after he ages out of school system, my sister had a baby, my father in law died, etc.).
Now it looks like cancer has come back to bite me in an unexpected way. I came to the ER five days ago with chest pain and shortness of breath. Some idiot at first thought it was pneumonia, despite no elevated WBC.
Finally got a cardiologist to look at tests, and while I now know it was congestive heart failure, no one told me that, just kept scheduling more tests day after day. Heart Echo showed significant enlargement of heart. Angiogram showed my arteries are beautiful and clean (unlike my house!), and now diagnosis is SEVERE cardiomyopathy with ejection fraction of approx 20%. I had a muga at end of treatment in 2008, and while I don't remember exact #, I know it was near 50%. So while I wait for my next chat with cardiologist, I've been googling, etc. and I'm a little mystified.
This type of SEVERE cardiomyopathy from chemo cardiotoxicity seems to be extremely rare, and especially occurring so long after treatment. My guess is it may increase as time goes by, as I was one of the earlier beneficiaries of Herceptin for non-stage 4.
The cardiologist has said the cardiomyopathy may be reversible, but the little info I'm finding on web suggests otherwise (50% survival at 5 years). I'm ok with tough odds, and I treated the cancer aggressively so that I could be here to have this kind of problem. And of course I'll be asking the cardio my questions today when he releases me from hospital, and scheduling a 2nd opinion ASAP.
But I am also wondering whether any of the brave, knowing folks on the board have any relevant experience or information.
Thanks
Rebecca
(haven't updated my signature - I am now 5+ years out)
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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