Anyone else had heart problems ??

Anyone else had heart problems ??

Anyone else had heart problems ?? I had breast cancer in 2000 and was treated with Epirubicin and CMF. I was not told of the potential problem of a heart condition in years to come. I have been suffering for several years and just through luck my heart problem was discovered. I had a pacemaker fitted in Oct 2005 and this was upgraded two weeks ago.

At first I felt grateful as I am still here, when my sister is not, but now I feel very angry that I was not told and that it had not been followed up as I now believe this can take years to show itself.

Also there are several girls at the local pain clinic with Fibromyalgia - which I also have - who have also had Epirubicin.

I would like to hear from anyone who has been diagnosed with a heart condition or Fibromyalgia. Also anyone who feels they are swimming in treacle and struggling with day to day living.

It is interesting that with 5 year smore Internet history how much more information is available. Sites like this are invaluable in getting the word around.

heart problems Hi Wendie - so sorry to hear of your problems. I had FEC, in 2003 and one of the constituent drugs was epirubicin. I have never felt right since. I am so exhausted I sleep some 12-14 hours a night and also have naps in the afternoon. Nobody told me I would feel so tired this long after chemo. I also have Crohn’s, so it is difficult to know what is causing the tiredness as I have diarrhea every morning and struggle to maintain some 110 lbs in weight. I have pain in all my joints, but after a bone scan recently was diagnosed with arthritis. Saw my gastro this week and was horrified that he put on blood test request “Leukaemia?” - I have read this can be caused by chemo, but looking on the bright side. Hopefully my gastro can sort this out as I was discharged by the Oncologist after radiotherapy and I have had no contact with him since thenmexcept for a private HER2 test, which thankfully was negative.
Love and hugs,
Liz.

Sorry to hear your feeling bad. Your symptoms sound like Fibromyalgia !!

It is funny one small clinic has three women all with fibromyalgia all who had Epirubicin. All tummy problems, joints pains, diarrhea, fatigue exhaustion could easily be that - cures can take a long time but at least I felt better once I had been diagnosed as I thought I was going mad - permanent runny nose, feeling my feet were swollen when they weren’t. Check out www.ukfibromyalgia.com and find their assessment sheet - Let me know how you score.

Thanks for getting back to me and I hope you feel better soon

Love

Wendie

Sorry to hear about your problems Hi Wendie,

I am really surprised that they didn’t say anything about potential heart problems, since informed consent is supposed to be just that and my oncologist was very upfront about this as a problem in 2003.

On the question of monitoring, you are right that the followup leaves alot to be desired. I think the problem is that oncologists have been so focussed on getting the death rate down that what are called survivorship issues (such as the long-term effects of treatment) get neglected.

As for fibromyalgia, I don’t know, but I do know that there is good evidence linking chemo drugs with some of the symptoms of fibromyalgia such as chronic fatigue (this has recently been linked to genetic traits that cause some patients to develop an unusual immune response) and cognitive problems.

It does seem like scientists are doing more work on long-term side effects now and about time, too.

Thanks I know but I think as it was only approved in 1999 and my treatment was 2000 so not sure they were on the ball about this. Certainly was skiped over if they did know. After diagnosis with heart problems had meeting with ONC and she said she would check other women given it around the same time as me, that she was shocked etc etc but sure she would have just said she HAD told me if that had been the case.

I think more should be done to investigate long term effects of chemo and I for one would volunteer if it was to help others. My Radiologist once said that problem is if you die having had cancer/ chemo/ radio it tends to get put down to the cancer and not the treatment. Even he felt more should be done to investigate chemo morbidity. Any ideas on who may be doing research ?

Don’t get me wrong, even now I am grateful, as still here but just wish the Docs had been more on the ball instead of telling me the reason I could not walk upstairs was - my age, I was not fit, I was not trying etc etc !!

Take care

Love

Wendie

research Is being done in the US; might be worth contacting Cancer Research UK and asking them if they have any programmes in the pipeline. I would also be glad to be involved in this kind of research.

Wendie I am very interested in what you have to say I had FEC in May 2003 and then went on to haver Herceptin which was stopped when I developed a low heart rate. Throughout my cheo treatment I complained about muscular pains down the left side of my upper body , across my shoulder, base of the neck was like a tight ball, as time went on I developed pains in my joints, and felt as though I could feel all the bones in my body. I also suffered from extreme tiredness. Each time I mentioned these pains I was told that it was chemo and would eventually pass, I have had 3 bone scans and thyroid checked. I feel it is something that I just had to get on with as all I get is blank looks form my breast care nurse
and doctors. I now say everything is fine . But, in the last month I have really bad pains and am completely worn out. I thought that I may have picked up a bug, but the tiredness is always with me.
I cant sit at my computer for very long and already I am beginning to have a burning sensation at the base of my neck.

I read lots of postings here and come to the conclusion that most of us who have bc end up with joint pains and it is so hard to find out if these are normal or abnormal due to the many changes our bodies are having to cope with.

Basically I don’t know it what I feel has a medical term or not. But, would love to know how I go about finding more out as everything I say just gets swept aside.

Hope you are having a good day to day
.

Don’t be swept aside !! If your GP has any doubts, knowing as they do now about the damage Epirubicin can do, I suggest you ask him for second opinion on your heart and a test for firbomyalgia. It may not be but, forearmed is forewarned !! I kept thinking it was a bug and it was only discovered by accident.

Please don’t let it go get an answer you are happy with. I know the doctors are fiutghting blind but they do seem to think we are just grateful to be alive - which we are - but at what cost ? I don’t mind that either if I know and willing to adapt my life accordingly just fed up with being fobbed off !

Let me know

Love

Wendie

Thanks Thanks I will follow it up

Love

Wendie

Don’t stop! Thanks your reply. Please don’t be fobbed off and get someone to help you. If your chemo was stopped they obviously thought there was something. Don’t suffer not knowing. I think I’m a bit like you can deal with what I know etc.

IYou should get your G.P. to get a second opinion on your heart and a test for fribromyalgia your chest neck and shoulder pains sound very familiar. Try www.ukfibromyalgia.com - ask doc - support - symptom diary - you may find a lot in common !!

I spent yesterday in bed unable to move for exhaustion and pain but am better today. If I know what it is I can deal with it and plan my life accordingly, I am the same on the computer too so going now but do let me know how you get on

Love

Wendie

Wendie I am very interested in what you have to say Wendie,
I feel I owe you a big thank you for sharing your experiences and for pointing out the fibromyalgia site to me. I checked it out and saw the illustration and it could have been my body with all those red spots in exactly the place where I feel the pains. I now know that it is muscular, previously I thought cancer may have spread to the bones .
I went through all the literature that I was given at the start of each chemo reigime. There is no mention of heart problems with Epirubicin. The first time I heard that there might be a heart problem with any treatment was with the Herceptin and Radio due to the cancer being on the left side.
When I re read the literature on Docetaxel the 2nd chemo I was on I note that "Very occasionally patients experience muscle pain (myalgia) If this is severe it can be very unpleasant,but "and wait for it …“should only last a few days and will not have any lasting effects” !!
My muscular pains were masked by a frozen shoulder which developed from a fear of Lymphoedema and because Docetaxel made me so ill I had to be admitted to hospital.

I was so ill with FEC that I didn’t want to take the 2nd round of chemo they had lined up for me but my consultant told me and gave me a guarantee that I would’nt be ill with Docetaxel and nearly fell off his perch when he had to come to the ward and see me. The strength had to be reduced by 10% but all the time I had these pains in the neck and shoulder.My consultant then was very angry when I had to be taken off Herceptin due to a heart rate reduction to 39%. This I was told was the very best, there are no side effects, but I was saying different I had pains everywhere and not only till I had 4 lots of Herceptin did I get my Muga scan I haven’t see my consultant since and that was in May 2004 though I have been going to the hospital every 3 months except for the next visit is a 6month appointment. How could I be so mean as to complain about pain and exhaustion and seek further attention, they saved my life.
No, really I am very happy with all the treatment I received. Drs and nurses were very kind to me. But I feel I never did get my life back.
Hope you are having a better day today.
Kieran

heart problems hi wendy, i to have had chemo but it was after cmf that i felt
really ill, breathlessness, severe chest pains, this went on for
several weeks with two visits to a&e as it was thought i had
embolisms, all tests came back negative, so i was sent away
with the feeling i was making a fuss, two days after my last visit
i had a heart attack, but for the tremendous treatment i received
the outlook could have been pretty bleak. I was in the cardiac
unit for 15 days as i developed nutrepina(i know thats the incorrect
spelling but its the best i can do) when i was discharged i had a
heart problem, diabetis and gout!!! lucky me!!!. I asked the cardiac
consultant if he thougth chemo could be a factor but was told
it was not “his field”, i know that before may treatment started i
was told i would have an ecocardiogram, this did not transpire
but you always feel that the experts know best. I an progressing well
now and am on my last two weeks at the cardiac gym.
I have my first year appointment on the 21st and am very anxious,
cant wait for it to be over. Look after yourself.
regards gillya

Informed consent Just picked up on this thread.

The risks of side-effects are known from trials before any drug can be used to treat patients. As Christine MH has said, "informed consent " means that, where this applies, the risk of adverse heart side effects should be discussed explicitly before treatment and written onto the consent form which patients have to sign. If you have not retained your own copy you are entitled to ask to see the original on your hospital file. If the form does not show this point, then that is very serious and you may wish to take advice from a solicitor.

With regard to cardiotoxicity from Herceptin, my heart muscle function plunged 15% from a level already lower than the measure taken before treatment started (undoubtedly due to permanent damage from the Epirubicin element of FEC chemotherapy). I took Co-enzyme Q10 which can be purchased at health food shops (200mg daily) and regained the initial level. It’s not cheap but I recommend it as a self-help remedy.

Blimmen eck Reading your posts frighten me!

I have just finished EPI. They were up front about heart effects and did a heart check after every treatment. If there were changes they would have stopped the treatment. There were non, but I didn’t consider long term effects.

Oddly i was checking side effects of CMF the other night on the internet. And was shocked to read “secondary cancer” I will be quizzing my onc at the next visit on 4th July now!

Sonya

Don’t be frightened Hi

Did not mean to frighten you but forearmed is forwarned. I had a heart check begining and end of treatment but not during. Also had Rheumatic fever as a child so that MAY have left me with a greater risk. They were not so up front though. Even if I had known I think I would have had the same treatment but may have realised what was going on earlier.

I was surprised too about secondary cancers but have just seen my surgeon and she said it is true on any chemo !! but quite rare.

Stay positive

Best wishes

Wendie

heart problems Hi Wendie just seen your post I was diagnosed nearly 4 years ago had lumpectomy followed by chemo and radiotherapy I was warned of possible side effects , but at the time heart faliure was the least of my worries. 1 year later I was diagnosed with severe heart faliure , after several visits to my G.P.I was eventually admitted to A&E and spent a week in hospital .The cardiologist informed me that it was probably caused by the chemotherapy , I had been feeling unwell for some time (severe shortness of breath, tiredness sweating) I thought that the cancer had returned in my lungs , it was only after a chest x-ray reveled my heart was enlarged that my G.P. finally had to admit that I had a problem. I now take a huge amount of tablets and it has taken 2 years for my condition to stabilise, I now feel alot better but not 100% I don;t think I ever will .I thought I was the only one with this problem it appears I am not .Good luck to you all
cheers
lizziegomme