heart failure testing?

You can ask for muga scans or echocardiograms.  My understanding is that only a small percentage will develop heart failure and it can occur 5-7 years after the chemo.  I developed heart failure last year at age 51 from the Adriamycin I received in 2001.  Unfortunately my onc never did mugas.  I'm not sure the mugas would have prevented my heart failure but I obviously could have caught it much sooner before my ejection fraction got as low as it did.  I started out on 8 medications and am now down to 5 to control the heart failure.

Some of the symptoms that you can look out for are shortness of breath when you exert yourself.  I would wake up at 2 a.m. like clockwork unable to breath.  The day I was hospitalized, my ankles finally started swelling which is a major sign of heart failure.  My symptoms only started 6 weeks prior to my being hospitalized and just kept getting worse. 

Thanks Tender!

The big thing is that as up to date as I was on BC, I was absolutely clueless on some of the long term effects of chemo.  I was 6 years out!!!  I knew chemo could cause heart damage but I don't think I ever understood just what kind of heart damage, what the symptoms would be, etc.  I do know that even back in 2001, the standard protocol for Adriamycin included muga scans.  I can remember asking my onc about the various scans that I never got and he said he only did them if I had symptoms!   I had fantastic insurance, had met my deductible and out of pocket so I'll never understand why he didn't do the muga scans.  But had I known what I know today, I would have demanded them or found another onc!

Congratulations, Henny! I know what a relief it is to have a 'normal' MUGA test after a low one.  My third one dropped to 40% and the fourth was back up to 51% six weeks later.

Next week Wednesday I get my last herceptin treatment. For some strange reason I have had a burst of energy and positive attitude in these past couple of weeks. I imagine it has something to do with knowing that I made it through 17 months of surgeries, chemo, radiation, tests, and herceptin. I'm mowing my own yard again and even played eighteen holes of golf.

Our Memorial Day weekend here in Iowa is to be half sunny and half rainy. Most farmers have the crops in so then we can say let the rain come (in moderate measures of course). I too say lets enjoy these days.

Barb

Congradulations Barb. I am soo looking forward to getting my last 4 herceptin infusions done and yanking out the port. I know it's not the end of the book and we go back to being out old selves. Something inside is different and I think it is a new maturity that I didn't have even at my old age of 56.

I have been struggling with finding ways to turn this cancer experience into a positive thing.For me I think it will be at my work. I'm a Nuc Med technologist.I found that if I tell a patient who I'm doing a PET, MUGA, or bone scan on that I have experienced what they are going through, then it makes their time a little easier. Sometimes I'll show them my port and we'll exchange stories. At first it was so hard to say anything about myself-in the past before cancer, I had lots of empathy but no real experience about what cancer really was like. When I was on chemo, I wore wigs to work so I wouldn't freak patients out but really I think it was so I wouldn't have to talk about my own pain and fear. Now each day is easier and i really hope kind words and real understanding will help those whose paths cross mine. Some days though I tell my coworkers that I only want to do bone scans on runners and they are so understanding and allow me to take a break from the tough emotional part of my job.

Magenta,  The treatment can really be a trial but just keep looking to the future. I kept a little journal and it really helped to be able to look back into it-showed me how far I had come. And think- no shaving you legs for a while and I can't tell you how many get togethers with the in-laws i had a great excuse for missing.

Henny

Hi TPPJ,

I'm sorry you are going thru this but am glad that you caught it.   It kinda throws you for a loop!!!!   I knew chemo (adriamycin and herceptin) could cause heart damage but I didn't expect it 6 years later and never really knew what to look for.  I have sinced learned that it can take years for the damage to show up.   

So far the all the heart meds are keeping my cardiomyopathy under control.  My EF is now right at 50%.  I'll be on Coreg forever.  Hopefully the heart meds will work for you as well. 

Hi 26yrsmfl,

Hopefully medication will be able to control your heart problems and you will be around for another 25 years or more!  I found out about my heart problems 6 years after the fact.   He cardiologist said your heart will do everything it can to accomodate the damage.  I keep thinking that had I been having regular mugas or echos along the way, that I would have caught my problems before it got as bad as it did.  I am very fortunate in that the meds appear to be controlling my heart damage.  My EF is is about 50% which is near normal from the original 18-22%!  I will be on Coreg for the rest of my life.

We just need to bring awareness to others that have had chemos which are toxic to the heart and make them aware of the possibility of heart damage.  It doesn't sound like you were really having symptoms.  My symptoms came on very quickly.  The ER doctor told me my heart was under so much stress that had I not came in when I did I would have come in on a stretcher within the next day or two.

Good luck!  I hope you have minor heart damage and I hope Coreg can control it!

Debbie

I meant to tell you something else.... my mother developed neurapathy during chemo and she was told that neurapathy was something that should stop after she stopped chemo but it never did... turns out that she was a diabetic and the neurapathy was caused by that