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cardiac toxicity

Hi all
On 29th had very positive visit at HH but today had phonecall to say that the ecg that was done on wed (cos of fatigue and rapid loss of colour) phone to say that I have to have 7 day ecg monitor, an echo cardiogram, app with the cardiologist locally. Cardiac toxicity was mentioned.
Has this happened to any one else?
If I have to stop glivec what can I have instead?
Will my heart recover on its own?
This feels like a bomb shell but perhaps its nothing I know I shouldn't worry but its coming up to 5 years on glivec and I just wonder how many other people are still on it after this time.
Sorry about long post but I've got so many thoughts racing round my head.
Yvonne

Hi Yvonne
Good luck with your tests and the results.
Apparently there are a small number of CML Glivec patients with possible cardiotoxicity but not necessarily because of the Glivec. To be cautious most (all?) Glivec patients in the UK are being tested as and when. I had my ecg, echo cardiogram, MUGA test at the Royal Liverpool last week - still await the results. The lady doing the tests said no bad results so far for all of the Glivec patients tested. They suggested that perhaps it is because the average age of patients who have shown heart problems is over sixty and so perhaps they had the problem anyway. Please try not to worry about it too much -wait for the test results.
There have been previous postings about Glivec and cardiotoxicity on this forum.
God bless
Peter Miles
Southport UK

Hi Yvonne
Fingers crossed for you - even the slightest blip can trigger further investigations in these days of high tech gadgets. This can be quite alarming at the time, because doctors don't like to take chances nowadays. Please try not to worry too much - easier said than done I know. When will you get this monitor? Hopefully soon, as it's often the worrying that's the worst.
Take Care

Bee

Hi Yvonne

Sorry you are having to have all the tests, fingers crossed that things turn out fine. There are other options out there for CMLers now, so if Glivec becomes a 'no no' you do have alternatives available. HH is a great hospital, and I am sure they will look after you very well.

My heart tests at Kings showed no abnomalities, except high colestorol! So now I have that to add to my list of things to watch for in the diet.

Take care, and good luck
Pennie

hi yvonne,
sorry to hear of your worries about your ecg tests etc.... as far is i know the connection between glivec/sprycel and presumably tasigna and caridotoxicity is tenuous, but those involved (mainly novartis but presumably BMS too) involved are monitoring any possible connections very closely.
it seems that the patients originally identified did have previous heart health problems and as peter says in his post above it may be because of the older age group that, on average, cml patients belong to.

i do hope that further tests show no abnormalities in your heart function.... it its enough to have cml isn't it!! i am sure you can resolve any problem you may have and keep on with glivec as you have responded so well. in a way it is good that HH has tested your heart function as if there is a problem you will know about it.

as far as others who are still doing well 5 years on......... i believe the 60 month data from the IRIS trial shows amazing results, with well over 90% of trial pts. still responding to glivec... no new or worrying side effects have emerged over the last 5 years....relapse/resistance rate falling year on year.
all this and more will be presented at this years ASH meeting in early december. cheryl-anne of the cmlsociety of canada will be attending that meeting and has promised to keep other groups -including ours- updated with all that is relevant.
best wishes,
sandy C ;o)