Diagnosed with apml in 98 pregnant and just found out chemo damaged heart

Luckyfour

I was diagnosed with apml in 98! Went through induction with idarubacin, which was horrible! I was 22 at the time! Three more rounds of chemo two with more idarubicin chemo! I've been in remission ever since but really took care of myself out of great fear of ever having this awful disease again, I juiced organic veggies and fruits daily! Became a complete health nut! I was told I probably wouldn't be able to have kids again but after my last treatment 9 months later I had my period! I am now pregnant with my 4 child! Three since I've been in remission! Only to discover almost 12 years later I have heart problems from all the idaruabacin chemo! The tests I need to get I can't cause I'm pregnant to accurately diagnose what is going on! Found a paper published by Fred Hutchinson on after care for people who've had this chemo and I've suppose to be getting muga scans every two years and I've not had one! When I left hospital no long term side effects were ever disgussed! Apparently in women heart problems come about after chemo during pregnancy due to so much strain on the heart! They can surface up to 25 years later! I'm only 28 weeks pregnant and constantly am short of breathe! It's horrible! Also during labor you need extra monitoring on your heart which I had no idea and my third daughter was born with me not being able to breathe and her heart rate dropped to 40 beats per minute due to the fact that my heart couldn't sufficiently produce enough oxygen so she was pulled out with forcepts--very scary! My legs swelled up to twice the normal size (another sign of a heart in great distress! Get your yearly scans and know all the latest studies of what different chemo's affect! This has been a very scary eye opener! You think after 12 years everything is fine and then one day it changes! I can't wait to have this baby and get the scan I need and follow all recommended aftercare! I've read many other blogs that people who had apml came down with heart problems! Take care everyone and never give up life is so beautiful! Thanksl

ReubenC

Scans
I don't understand why any doctor would not explain this to their patients. I think sometimes they might do this in order to not add to the anxiety - which doesn't make it right or best for the patient. I, and my advocates, made sure the doctors were clear in everything, especially long term side effects. I might have driven them nuts, because I would ask about long term side effects at every encounter, just to be sure I didn't mis -understand or miss anything.

That said, I never heard of this muga scan. I would certainly be sure to discuss at my next appointment, but that won't be for some time. Would you care to elaborate on your knowledge of the scans?

I was made aware of the long term effects the chemo could have on my heart by my doctors. They made it very clear, however the short term effect of not taking the chemo were also very clear, death.

Unfortunately there is not cure for APML/APL/AML:M3 without the chemo's being used today, however they these treatments have taken a disease with a 100% mortality rate, again 100% mortality rate and have turned it into the most survivable form of AML over the last 30 years. For me the trade off was acceptable, I would rather increase the chances of getting hit by a bus, then not to have any at all.

I'm happy to see you are having children, given the chance, I can only hope I will be as lucky in the future.