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

arpie

I do NOT want to scare anyone - but this is a very real condition that may affect some who've been thru chemo - and is something to be aware of, particularly if you start getting a dry hacking cough or chest pain.  It usually affects 'older' people .... but everyone just needs to be aware.

My friend couldn't recall what chemo regime she'd been on .... so it may NOT relate to all chemo regimes - and it took some years before she was aware she had a problem.

I had my hair cut yesterday - no big deal - my hair dresser (who was diagnosed with BC over 5 years ago and was running the Look good, feel better program) was really surprised when I told her earlier in the year that I had 'Joined the Club' .....she said 'Golf Club?'  So she was gobsmacked when I said, 'No, the Breast Cancer Club'.  Since then, we'd chat every time I went in for a cut ......

Yesterday, she stunned me when she said that she had had a heart attack & been in ICU for a number of days & in hospital for another week or more - and that it was the BC chemo that had caused it!  She has about 20% of the 'pumping side' of her heart  that has basically died (pushing her blood out of her heart - so a very reduced flow) - and there is no cure - just a heart transplant if it gets 'bad enough'.   She had a massive amount of fluid in her lungs that needed to be drained - which caused pain with every breath.  She has to weigh herself regularly now - as increased weight can indicate the fluid buildup in her lungs again.

She also developed a really dry hacking cough. She was incredibly uncomfortable sleeping at night - even sleeping sitting up supported by pillows didn't help ... and was having strong chest pains.  She presented to Emergency at Taree Hospital & after a couple of days there was sent to John Hunter Hospital at Newcastle, where further tests confirmed 'Non Systemic Cardiomyopathy'.

She is coping 'ok' at the  moment ... and I just hope that things don't deteriorate  

Take care - and just be aware!  xx

Afraser

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.

Polly Rose

@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.

Sister

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. 

arpie

@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

primek

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.

arpie

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

Polly Rose

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.

primek

@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. 

arpie

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.  

Polly Rose

@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. 😀

[Deleted User]

It’s really important to get a baseline scan before chemo and then follow up with a cardiologist if you have any concerns. Adriamycin is a particularly toxic drug. I’ll have ingoing check ups for heart issues.

Polly Rose

You are 100% right @Rose18. I was lucky that I had been having echos during treatment so they had a baseline to compare to. The problem though can be knowing what to look out for in the years after treatment. Pre treatment I had never had any heart issues so had never seen a cardiologist. I was not being specifically watched for heart issues even though we have a family history which I now know can makes us more susceptible to damage from chemo. I was lucky that my main symptom was fainting which mean that it was looked at more quickly. More subtle symptoms like the shortness of breath is a bit more of a grey area and it is easy to put it down to recovery from treatment. Hopefully more people will become aware of the early warning signs and get checked out before they have a more serious issue.

[Deleted User]

I hope you are well @Polly Rose. They tested me for cardiomyopathy at one point which was very scary. I have ongoing periods of almost blacking out. I’m in my mid 40s and heart issues are a real concern for some women who have been through chemo. I think doctors need to focus more on these side effects. Exercise is a good step to maintaining a level of fitness and heart health. 

arpie

Stay well, ladies and do what you have to do to stay fit, without overdoing it!  

A fine line, I would think!

take care xxx

Polly Rose

Hi @Rose18 I understand how worrying it is when Drs first suggest cardiomyopathy but it’s so important to keep on top of heart issues. At the start I was diagnosed by having an echocardiogram but when I had a follow up one soon after it seemed to have resolved. It was only because I was still fainting and having symptoms eg fatigue and breathlessness that one of my cardiologists decided to do a stress echo instead and see how my heart reacted to exercise. This is when they realised that it hadn’t resolved and since then it has progressed to now be heart failure. It’s disappointing as we still have 3 of our children living at home and 2 still at uni but I don’t have the energy to run the house the way that I would like to. 
If you are still having issues please make sure you keep asking to be checked and if need be ask for a stress echo. The earlier that they can identify the damage the better the outcome and you are 100% right about exercise being important too. Maintaining your fitness will improve your overall health in so many ways but it’s especially important for heart health post chemo.