Cardiomyopathy and chemo ...... a serious condition to be aware of

Chemo is very tough medicine. If you read through the literature an oncologist should give you, the potential side effects are alarming. Many don't happen. But chemo can have an effect on the heart, as can herceptin. It's also true that many people may not be aware of latent weaknesses or potential trouble spots before a cancer diagnosis. My bone density for example was very good, but did I know before staring femara? Not a clue. My  arrythmia is probably partly attributable to chemo, but not exclusively. Because a bout of tachycardia was pretty obvious before a chemo treatment, it was quickly picked up and my heart health (mostly good) is known and monitored. A thorough check after active treatment may be a good idea for all of us, even though more tests may be the last thing we want.

@arpie I am in the same boat. I finished chemo 3 years ago and within a year of finishing was diagnosed with non ischemic cardiomyopathy. I’ve had every test known to man and they all prove that the damage is caused by the chemo and not any underlying heart disease or structural abnormality. What they do know however is that there are cardioprotective drugs that could have been given and would have helped prevent the damage. I had AC and taxol and my cardiologist from Peter Mac tells me that both of those drugs can effect the heart muscle and that unlike the damage from herceptin which is reversible, the damage from AC in particular is permanent and may be progressive. I’m going into the Alfred hospital in a week to have a right heart catheterisation procedure done and hopefully then they can try to find a better course of treatment as at the moment nothing seems to be working for them. While I remember being told that there could be heart issues, I was never told that they could present so far down the track or that there was an option of medication to prevent damage. I too developed an on going cough but was never given any signs to look out for and only sought medical assistance as I kept fainting ( even when lying down). I now have been diagnosed as having heart failure and it is having quite an impact on my daily life and especially my work life. I understand that the drugs used in chemo are our best line of defence against the dreaded cancer so I don’t regret having them but I do regret not knowing more about the long term side effects and that I didn’t ask more questions of my oncologist. I hope all works out well for your friend and thank you for highlighting this important topic. Knowledge is power.

I had to have an ECG before chemo, during and will have a final one in October to monitor any possible damage to the heart.  I don't know if this precludes developing damage down the track - another question for my oncologist.  One of the things that the Baker Institute in Melbourne are studying is the effect on cardio health of exercise during chemo.  It appears that a combination of cardio and resistance exercise through chemo helps protect the heart. 

@"Polly Rose"  - putting a 'like' on your post isn't really appropriate - we really DO need a 'sympathetic button' ...
Oh my gosh - you've been thru the mill and back - I am so sorry that you've had that diagnosis!  As you say, they read you the list of possible side effects & you just hope that it won't happen to you .... but sadly this one appears to be 'not that uncommon'!   I'd never heard of it before - so can only guess a lot of others haven't either.

Your description sounds like Gail's - (her treatment was probably nearer to 10 years ago - probably the same as yours - she said it was something like 'ABC' - so AC would probably be right.  She called it 'non systemic' - but I am sure it is the same as yours - 'non ischemic.)  She was getting very short of breath doing just simple things.  She would have to sit down to pre-empt passing out, then had the heart attack ....   So yours is in the Right side of the heart? I hope the catheterisation works for you.  Is that the 'cooking one' or the 'freezing one'?  I know quite a few triathletes who've had that done, as well as non-athletes!  Have they mentioned the possibility of a pacemaker?  Some ended up with them after the catheterisation wasn't 100% successful. I am pretty sure hers is the left & more difficult/impossible to treat.

Gail was actually diagnosed with ASTHMA just the week before she had her heart attack, when attending her local GP, as she presented with breathlessness and wheezing - and they KNEW about her BC/Chemo history!!  Not good!!

Have you also lost weight?  She is much thinner than when I saw her last - about 2-3 months ago.  Tho I guess stress etc may also impact that. 

You are SO RIGHT - Knowledge is Power!  We need to let all our BC Chemo people know for the symptoms to look out for!  Breathlessness, feeling faint, actually passing out ..... and of course the persistent cough & any chest pains - go straight to hospital!  Call the ambulance!

@Sister - Well done, for being aware of it - just one more thing to keep a track of, eh .... it might even be an idea to have that ECG yearly - as it appears to take 'time' to get to the 'noticeable' stage of breathlessness & passing out.  I would imagine the exercise thru chemo would be a very 'fine line' - do enough but not too much, as the chemicals are already impacting your heart?  Sometimes 'more' is not necessarily 'better'?   I know that Keith exercised all thru his chemo & luckily 8 years later, he is fine & has competed at top level for his age group ever since 3 months after finishing chemo! (3 times World Champion Triathlete as well!)  He has an incredibly strong heart tho (probably a bit like Phar Lap) .... but who knows .... Gail had her treatment before Keith was diagnosed in 2010, and it has only impacted her severely this year.

Take care, ladies xx

I had difficulties on herceptin and it was stopped and I thought possibly the AC may have contibuted to it. It did recover but took some time. I know they have done some studies now changing the regime to see if survival rates are different dropping one  chemo out of the AC part of the regime. I've had to work really hard to get my fitness back but I don't believe I will be like I was. My oncologist considered retesting my heart again due to  my ongoing fatigue but we haven't as once ny sleep was sorted it seemed to pretty much resolve.

I think this is a timely reminder to have regular GP reviews. If breathless, tired constantly, have a cough or swollen feet duribg ir well after chemo...get checked out but prompt the GP about your history of chemotherapy. Medications can certainly  improve cardiac function/ output and potentially decrease the progress of heart disease.

DUH Sorry @"Polly Rose"   ....   'Same time as yours' should have read 'Same time as my husband's in 2010!'   FOG BRAIN!

Yep, @primek  -  Herceptin is one of the drugs that can also cause Cardiomyopathy  :(    Well done on your recovery.   Glad you aren't feeling so stuffed now your sleep has been sorted. xx

Hi @arpie. The right side catheterisation is to check out my internal heart and lung pressures and to get internal blood gases and samples. Unfortunately my heart failure is global so the whole heart is impacted but thankfully my arteries are clear and I don’t have any plaque build up. They have talked about implantable devices but we are just waiting to see what more information they can get from the procedure. They have also said that often chemo related cardiac issues are progressive and that’s where heart transplantation  comes in, but hopefully we never get to that point as I may not be deemed a suitable candidate based on what’s happening with the cancer at the time. The most important thing I have learned is that remaining as active as possible during treatment can help to maintain a better level of heart function even if damage does occur. This is also important post treatment. Once that level of fitness is lost it is nearly impossible to get back without risking further damage. The research being done at the Baker Institute is very enlightening and I know that it will help to form better information packages for cancer patients before they undergo chemo. I’m lucky in that I have 3 fabulous cardiologists 1 of whom works at the Baker and specialises in exercise and heart function and 1 who works at Peter Mac and specialises in chemo induced heart issues so between them all I think they have all bases covered. I hope your friend Gail recovers well from her heart attack and has a great medical team to work with moving forward.

@arpie Yes herceptin is known to cause heart issues .. and it is well explained before starting and monitored closely and hense mine had to be stopped . What new research is showing is women (and men) needing Herceptin do just as well without adriamycin which seems to increase Herceptin problems. But so far only small studies. I had such an aggressive cancer I doubt I'd have chosen differently even knowing what happened. 

Gail had just been given the general side effects list, and not explained what symptoms to look for, should she have a problem.  :(    

End result  - a more catastrophic diagnosis 8 years down the track, some years after she was experiencing the actual heart symptoms and didn’t realise it.  :( 

This post is really to help  make people aware of the symptoms, should it happen to them. :( 

@arpie I’m really glad that you have highlighted these post chemo symptoms. It’s another reason why we need to have a good relationship with our GPs as they will be our primary medical person well after cancer treatment is finished and these problems can occur years down the track. I was very lucky that my GP is on the ball and sent me for another echo which confirmed the cardiomyopathy earlier than it may have been found otherwise. Hopefully your conversation starter will make sure that others are more aware of what to look out for post treatment. 😀