Forum Discussion
Cardiomyopathy and chemo ...... a serious condition to be aware of
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
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
32 Replies
- @Arpie, SVT is supra ventricular tachicardia. Basically my heart rate went from 60 to 80 straight up to 170 and stayed there. The ER used half of a Metoprolol pill to bring it down and I stayed on those for a year.
When I changed to Letrozole my heart rate went into Atrial flutter which is when the heart rate goes 60 to 80 up to 140-160 and within a minute or two back to original rate, then another minute its back to 140. The ER doctor that time told me I was having two heart beats with two electrical impulses at the same time. Metoprolol a few doses did eventually bring it under control and now I am on Sotolol to control the heart rate. I have gone off the Letrozole three weeks ago.
I had an out of the blue Atrial Flutter yesterday afternoon too although it was more mis-beating heart than racing. The Sotolol did keep it in check and I didn't have to go to ER. I slept like the dead afterwards as it feels like you ran a marathon.
The oncology nurse said she would ring me back when she talked to the Doctor. To date she hasn't rang back. I can't make them do their jobs and anyway I feel fan-flaming-tastic while off the Letrozole. Now THIS is living! - What a horrible piece of work @Brenda5 . She definitely deserves some 'feedback' If you want to the your oncologist before October, you can see your oncologist. Or change practitioners.
- Definitely a suggestion of better training, at least.
- Bloody hell @Brenda5 .... I think that treatment deserves a letter! Definitively a nasty little ‘b’ .... She is in the wrong job methinks!
(What is SVT). I know you’ve been having heart problems for months! How horrible and SO bloody scary! - @Brenda5 Cow! Boy is she in the wrong job... How thoughtlessly inappropriate and insensitive. Not to mention rude and heartless. Disgraceful behaviour!
- SVT while on Tamoxifen then Atrial Fib on Letrozole for me. I think I am done with hormone therapy. No ticker no me.
I rang oncology to get an appointment to discuss my hormone therapy and got a nasty little nurse. She said I am not scheduled for a followup appointment until October this year and then when she found out I am off the Letrozole due to heart troubles and I asked did I still need to have the bone scan done just before next October she more or less intimated I would most definitely need it to see the cancer will be back and spread thru my bones. Nasty little piece of work. - @"Polly Rose" it Sounds like you have a wonderful team around you now, that are looking after your best interests. Hard to believe what your previous Onc said! MORON!
all the best ... I hope you can get back to the work you love so much ... xx - Thanks @kmakm will do.
- @"Polly Rose" What a relief to have everyone on your team paddling in the same direction. Justly cause for a bit of hope. Let us know what happens. Fingers crossed! K xox
- Haha we will blame chemo brain @lrb_03.
Right heart cath was a hoot and I don’t look forward to ever doing it again. I have somewhat of a needle phobia so when I found out about them putting it through my neck while I was awake, well let’s just say I wasn’t thrilled. I was able to have my earpods in and listen to music so that I didn’t have to listen to medical talk for most of it lol. While they got some answers, they are still having difficulty with finding a way to stop the progression of the damage. They have now found that the chemo seems to have damaged basically every cell in my body on a mitochondrial level. This means that my cells don’t know how to use oxygen properly when under duress hence many of my symptoms. My bone marrow is also not producing enough red blood cells to carry oxygen which just compounds it all.
As silly as it sounds, I was relieved to get a copy of the letter that was sent to my GP that clearly says that this is all a result of chemo. I have just changed oncologists because my previous one said that he didn’t agree and that I just needed to keep pushing myself. My cardiologists were alarmed at this and kept reassuring me that they were the experts in the field and knew what they were doing. I had started to think that maybe I was being a bit soft. My new onc is fabulous and says he has no doubt that it is all caused by chemo and he is now working with a professor in Melbourne in an attempt to give me a clearer picture of what my future is going to look like. I haven’t been able to work since last year, but I’m very hopeful that over the coming weeks we will have some positive ideas about moving forward and getting back to work.I miss my job and my clients ( I work in welfare).
it was lovely to hear from you and as always Ilkve reading your little snippets on the chat.
Take care
Polly
