Two years after finishing successful chemotherapy and a mx, I have recently been diagnosed with cardiomyopathy which is almost certainly caused by chemo. I knew there was this risk when I signed up for the chemo, but it has taken some getting used to all the same, and it did come on rather suddenly. I am wondering about other’s experiences; I am told that in my age group (over 60) there are potentially 1 in 10 so affected. My symptoms are not serious or life-threatening but I am already getting confusing mixed messages about what I can and cannot do. And how I wish there was a breast care nurse or Macmillan nurse equivalent for heart disease in my area!
Hi Penny
i just had to reply to your post as I too suffered from cardiomyopathy after having. FEC chemo some years ago. Unfortunately I have secondary BC so this affected me even more as it had an impact on my future treatments. Things became so bad with the lack of communication between my cardio team at my local hospital and my oncology team that I was desperate and my fantastic oncologist really helped me. He contacted some of his medical friends and found out about the cardio-oncology unit at The. Brompton Hospital in London. They are a research unit and treat people who suffer with cardiology problems as a result of chemotherapy and other treatments such as Herceptin. You can get a referral to them I’m sure, if not I know of another lady with secondaries who has had similar problems and her local GP had a heart care nurse who has been fantastic helping her with getting the best medications etc. There are various medications that help the heart and also other more extreme procedures, which is what I needed as I had to have Herceptin as part of my ongoing treatment. Do get in touch if you want more info, either by PM or on here. I am happy to share my knowledge as it helps others who may have the same problem.
Nicky x
Hi Penny - I am having Herceptin as part of my BC treatment and after 4 sessions and a echo it was found the the Herceptin had made changes to my heart. The treatment was suspended and I was referred to a cardiologist who prescribed ACE Inhibitors and Beta Blockers. The heart has recovered and treatment resumed.
What I wanted to say was that I was assigned a cardio nurse who oversaw my medication,checked blood pressure, checked bloods and generally gave me information and explained everything in cleat terms. She was great , having more time that the cardiologist and answered even the most silly questions for me and put my mind at rest.
It is worth asking your GP if this service is available to you as I found her so reassuring and helpful.
Good luck Marli x
Hi Penny
I was diagnosed with severe heart failure (e.f was down to 10) 2 years ago at age 60 and 5 years after treatment. I was told the condition was permanent, that I would be unable to work again and would be on medication for the rest of my life. I was devastated and felt utterly ‘lost’. Fortunately I have had the benefit of an excellent cardiologist and in the months following diagnosis, the heart failure community nurses who were really suppportive ( maybe there is a team in your area). I kept taking the medication - a cocktail of different drugs with some pretty awful side effects - and just kept going. The main problem was extreme fatigue which meant my quality of life plummeted - any exercise cost me days in bed when I was just too tired to do anything at all. But I knew exercise was vital and despite it being a real struggle, did as much as I could possibly tolerate - walking, swimming and gardening mostly. My heart has now ‘remodelled’ itself - my consultant says they don’t really understand how or why this happens but know that it can, particularly in younger people (and believe it or not, 60 is apparently young to have this degree of cardiomyopathy) . Things are now back to normal and the drug regime is down to losartin and aspirin. My cardio says its a ‘major success’ and I feel like I have my life back.
So I can understand your confusion - it semed to me that the medics weren’t able to give a prognosis with any confidence and there were so many ‘unknowns’. I think its been the combination of medication and exercise which has worked my miracle. Keep on going - your body will tell you when to stop and when it does, rest and rest again. Feels like one step forwards and two steps backwards but I got there. I really wish you well.
I’ve just been to see the oncologist-saw the Senior Reg. She had had a look at my records and said I was never on high enough levels of Epirubicin to cause toxicity. So they think it is a mystery that I have heart failure. I suppose I might be one of these people whose cancer directly causes the heart problem. I did have a chest infection at Christmas but never had a temp and didn’t need antibiotics, so I doubt that caused this. So I have to go on with the treatment and put the cancer treatment out of my mind- not an easy thing to do, especially when my OH may be having chemo before long.
Yes we do all need some Christmas cheer- it’s been too dark outside!
Hi just thought I’d introduce myself. I’m Sue and am 55. I had BC 4 yrs ago and last Sept I was diagnosed with chemo induced Heart Failure and Cardiomyopathy. I was admitted to hospital for a week and my EF was 10-16%. I was really ill. My latest echo showed EF of 20-25% . I’m on various meds and have started cardiac rehab. I am symptomatic most of the time with low energy levels and unable to do what I used to. Fortunately I have been retired on ill health grounds. I am determined to feel better. It’s not an easy road but you just have to take each day as it comes. I am so pleased Nicky put me in touch with this site. At last I have found people who are going through the same thing.