i’m not sure where would be the best place to post this .I had fac six cycles and radiotherapy for 28 days.I noticed my pulse was a little high but was told that was just the “new normal” for me
I thought I had a bad cold a couple of weeks ago.Coughing and wheezing,went to my Gp who noticed my pulse was higher than normal,blood pressure very variable.I had finished treatment for my ca over a year ago,and thought all was going well .Gp thought I should get a ecg,now I am told I have heart failure thought to be due to adriamycin.the only info I can find on the web is medical articles more suitable for doctors
Has anyone else experienced this problem?is it manageable or more likely to simply progress?
I’d really appreciate any info
thanks
I’m really sorry to hear that (for both of us) I’m due to start AC chemo next week - assuming the preliminary echo cardiogram is ok. i’m becoming increasingly more terrified, not just because its chemo but because of the increased risk of heart damage that comes with AC
I hope ladies out there can advise and i hope the outcome is good for you. Bumping this up.
Kindest Regards
Lynn
I’m so sorry to hear this - not sure whether the helpline on here might be your best bet as i must admit i don’t think i have seen any posts about this before… (or some of the people who have been on here along time might know more…) i also had 4xac coming up to 2 years ago…
Theresa x
i hope I didn’t worry you ,it is after all quite rare,I had also never heard of this before,
In practical terms,just make sure you get at least annual ecgs after completing treatment. Even if your heart function has always been normal.I was fitter than average for my age Echocardiogram is better as it can show the size,and ability to function,It is like ultrasound of the heart.
I was given ecg before chemo but not after.the damage to the heart takes place slowly and the heart automatically compensates by working harder,so the patient does not realize anything is wrong.Eventually after months or years the heart reaches the point where it cannot compensate any more and that is when you get sick and realize you have heart problems
this problem can develop up to 20 years after the chemo.when I had chemo the nurses monitored the patients for breathlessness during the IV,but didn’t mention this could develop later
Hi lookinglovely
You are welcome to call our helpline about this as Theresa has suggested, our specialist nurses may be able to point you to further information and can offer you support and a ‘listening ear’. The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2.
Take care
Lucy
thanks for your help and support ,Lucy,I hope I will be able to get in touch with them
I’m sorry to hear you are having heart problems - but pleased to see that I am not the only one!! After surgery, I had 6 cycles of EC (finishing Jan 2009) and 20 days radiotherapy (Feb 2009). When everything finished I seemed to get more breathless and wheezy and I also had a cough. My GP gave me 2 lots of antibiotics for the cough, but it didn’t really fully go away. Finally in Nov 2009 I went back to my GP and he sent me for more blood tests. At tea-time the same day they phoned and said I had to go to A&E as I may have heart problems. I stayed in hospital for 6 days and they did various tests. They put me on antibiotics as they discovered I had pneumonia, but although they did ecg and heart echo which showed heart failure they didn’t tell me this and discharged me with no tablets for this. For the next 2 (approx.) weeks I got no better and seemed more breathless, so I asked my husband to take me to A&E as I couldn’t stand it any more. Everything made me breathless and I was really shattered. This time I stayed in hospital for 5 days and they told me I had heart failure (probably from the chemo) and they gave me heart tablets. After a few weeks on the tablets, they increased the dose of one of them, which really helped. I have had further tests (exercise and resting) and last week received a letter re these tests letting me know that I had actually had a heart attack some time in the past (presumably when I was on chemo). I am now waiting to see the cardiologist again next week as, like you, I would like to know how things will progress. Hopefully, we can keep in touch and compare treatments.
Piglet X
Hiya - another one here!!
I hope my story helps. I had echo before starting chemo, one during (after 4 AC) then one when finished (after 4 Tax). All were ok, except the last one, by which time I was fairly breathless and my ankles were puffy and I had put on about 10lb in a few days.
My cardiologist put me on Ramipril, normally used for high blood pressure, plus one other, can’t remember what it was and I stayed on those for one year and the idea was to come off after that period. When the year was up, she said that the latest info was to stay on heart tablets for 5 years. So that’s where I am, take my tablet daily, exercise as normal. This all started in 2007 and since then have gone on to have 9hr op for reconstruction.
I have regular echos and am doing ok
Cheers
Anne
Hi Piglet and Anne,
thanks for letting me know that I am not the only one.I am still trying to get my head around this one.I was feeling really strong and healthy about three months ago,and never knew that this could happen.I can walk about ten feet before having to rest again.I am also trying to get my teenage sons to realize that I need their help now ,when they are so used to me doing things for them.I started frusemide and some other meds two days ago,and they are starting to work now.my cardiologist also told me to restrict fluids to one litre per day.Basically he said the damage already done to the heart cannot be undone,but the symptoms can be managed.My next appointment is in two weeks time,I have to rest until then .Thanks for telling me about your experiences
Hi looking lovely,
I remember very well the terrible feeling of only walking a few yards before having to stop and rest, and having to stop several times whilst slowly going up the stairs. It takes over your life - whatever you try to do you feel tired and breathless - even eating. However, when they increased my tablets (I now take Ramipril, Bisoprolol, Furosemide, Thiamine, Vitamin B as well as Femara [Letrozole] - and to think that before I got BC I didn’t take any tablets), I improved in a few days, and now I can walk quite a long way, although not as fast as before (yet!!) and I can get up stairs easily. I am hoping that this will continue, and improve more, and I hope that they can get your medications adjusted so that you feel much better.
I am seeing my cardiologist on Wednesday and if I find out any info which I think may be helpful to you, I will let you know.
Kind regards
Piglet X
HI there Piglet,i have now been on medication for a week,the chest congestion has eased a lot,I can walk around but it seems that after the first few days the medication doesn’t seem to be making much difference.I am supposed to be losing half a kilo per day but it is just not happening any more ,I guess I have to have increaaed meds.after looking up this type of heart failure i don’t feel too hopeful.some articles said 60% mortality rate at two years!!!hopefully treatment has progressed since then
another article said usually can improve symptoms for around four years then the heart deteriorates quickly despite treatment
I 'd better not look up any more
let me know if you find out more
thanks
PS Anne thank you for your positive experience .as my cardiologist said we cannot predict how patients respond to treatment as they are all different we just have to wait and see
Hi looking lovely,
I saw my cardiologist yesterday, and I have sent you a PM letting you know what he said.
Kind regards
Piglet
Hi Piglet,how are things getting on ?I am just waiting for my first appointment at the general hospital here,I was diagnosed privately as it was the only way I could see a cardiologist quickly.
I have been on meds for a few weeks now,and my chest is much clearer,but i am still getting out of breath quite quickly.
I had a few good days last week then got worse again.when I feel good I tend to do as much as possible then have to rest the next day.
my onc just told me that they didn’t exceed the max safe dose ,it is just bad luck that I got heart damage.I also chose not to have zometa iv cause you are not supposed to take it with diuretics,and supposed to drink three to four litres of water to prevent kidney damage.I have had so many bad reactions to drugs that if it is not essential i don’t want it .
hope everything is going well for you .
feeling really rotten the last two nights,so off to see the cardiologist today,think its a UTI,but also when I wake up middle of the night to cough or vomit,my skin colour is really bad,kind of yellowish white as if circulation is just not working.so don’t know what to do
I hope no one minds me carrying on talking to myself LOL
the cardiologist says I was having heart failure symptoms caused by lying down,I just have to make sure I’m a bit dehydrated before sleeping then my heart has some leeway to cope with the change of position
sorry to hear that hope you feeling alot better now x x x
Hi “looking lovely”,
Sorry to hear you have had some bad nights. Before my meds were increased I had to sleep sitting completely upright and any slight sliding down would mean I had to sit up again to feel that I could breathe - it’s amazing what you can cope with when you have to, isn’t it! But now, I can sleep again lying down. I always have 2 or 3 pillows, but I can sleep on my back or my left side now.
Did your cardiologist tell you what damage the chemo has caused, and what meds did he give you?
Kind regards,
Piglet
Hi Piglet,and Billiegirl, I am just learning to deal with this .when I went to see the cardiologist again he said I should get used to working out how many frusemide i need.He prescribed me one a day ,but now I am taking three as that seems to be what I need.
i had a blood test done for Brain Natriuretic Peptide which is produced when the heart is being damaged.
below 100 is normal ,900 is severe heart failure.my result was over 3000.so I have dilated cardiomyopathy and the problem seems to be the whole heart is affected there is no one area which is worse than the other,severe global hypokinesis.
the thing is even when my heart is at its worst,i don’t often feel breathless,i just feel nausea and that feeling of being very sick.
I am on a fluid restriction of one litre a day,but if I take more than about 500ml I keep getting sicker.(not sure how long my kidneys can survive on so little)
I do feel frustrated because before chemo the assumption was that if your heart was ok before it would still be okay afterwards.I was so relieved to finish all my treatment for cancer,now this
anyway it’s good to hear that you got through this alright,keep in touch
looking lovely - so sorry to hear how bad you are feeling and that the test results were so worrying… 
i hope your cardiologist is able to come up with some solution to you feeling so sick all the time…
Theresa x
thanks Theresa,I am just taking this one day at a time,I have a lot to learn .I am getting my symptoms under control a bit more now ,so I can sleep at night again.it just feels like learning to balance on a tightrope,too much fluid is a problem and so is too little.Hopefully I can get used to it and be able to think about other things sometimes again!