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CML, IHD, chronic diarrhoea and enlarged spleen

Hi, everone, and may I firstly wish you good health!

I am 58, and I played rugby until I was 34 (on the wing) and I have been suffering from ischaemic heart disease for over 21 years (heart attack at 37), and have many operations for this (including bypass surgery and angioplasty with stents), and I am fairly stable on medication.

The heart disease was probably caused by familial hypolipodaemia, since my HDL count was, and still is, 0.7, instead of the normal 1.5. My total cholesterol count is 2.6, so the balance of HDL to LDL is fairly normal now. My gall bladder was removed when I was 23. My brother died at 55, my uncle at 59, granfather at 59, all of heart attacks. My father and his sister both had heart attacks, but did not die from them.

I developed CML in February 2004, diagnosed in June 2004, and I have been taking Glivec since. My blood counts are normal, but I have noticed a lot of blood blisters on my hands, which I believe, is normally associated with low platelet count.

Due to chronic diarrhoea, which is now unaffected by loperamide, except in extreme doses or when combined with codeine, I was given an appointment at the Gastro-Enterological department at my local hospital. The consultant remarked that the diarrhoea may be caused by the Glivec (denied by my haematologist). After examination, the consultant informed me that my spleen was swollen, which explained the pain in my left side, and the likely cause was CML.

Does anyone know if this is significant, and what can be done?

hello Richard,

with an enlargement of your spleen it may be a sign of some further problems with CML.

as you do not give details of your recent blood counts it is very difficult to advise but i would urge you to see your haematologist and ask him/her for an opinion on how you are responding to Glivec.
your doctor should assess your response to Glivec by the amount of PH+ cells in your blood........or.. if you have had a CCR (complete cytogenetic response) to Glivec then your PCR results should show whether you are stable in that response or if you are developing resistance.

you should look at at least 3 results, whether from FISH or PCR, and try to see some sort of trend. if the trend shows a rise in either PH+ cells (FISH) or bcr/abl (PCR) then your doctor should do further tests and consider raising the dose of Glivec or changing to another drug....

Dasatinib (Sprycel) should be available to you as an alternative if your results show you are losing your response to Glivec. Nilotinib is still in trial so you can access it that way.

it is not normal for your spleen to be swollen so you should definitely get yourself checked out asap.

it may be that Glivec is causing the diarrhoea as it is a side effect that some people complain of. if this has happened over a long period of time then it could be significant as it could mean that you have not been absorbing the right amount of the drug.
you may also be right about the blood blisters. you should get your platelet count checked regarding this symptom.

the new drugs that are available -ie. Dasatinib and Nilotinib- are very potent and good at dealing with Glivec resistance.

of course your swollen spleen may be from another cause but it is unlikely given that you have CML.

i hope you are able to see your haematologist soon so that you can set your mind at rest/or begin to deal with the problem.

best wishes,
Sandy ;o)

Hi Richard,
I was dx this May and suffer from time to time with a swollen spleen (I have had an ultrasound on it twice so know it is larger than normal). Of course when I was diagnosed my spleen was huge but I found it worrying for it to swell since and always I wonder if it is a bad sign. I have however begun to realise that it seems to swell and be uncomfortable (some times even sharp pains) if I am trying to fight an infection as I have noticed it has been bad prior to a cold etc.
Hope this is helpful or a bit rambly!!!!!
Donna