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myeloidysplasia

hiya everyone,

i was wondering if anyone else had gone on to develope myeloidysplasia, i have a bone marrow biopsy done every 3 months since being diagnosed with CML last august, due to some pretty nasty side effects and slow response with glivec the consultant changed me to dasatinib 4 weeks ago, some other abnormalities had been found in my last biopsy and i was told the glivec could have caused this to occur and that i will need to wait till my next biopsy in jan till i find out more, i wasnt sure if this is quite a common thing for us with cml or not, if anyone can give me any info on this i would be very grateful.

thanks amanda

Hello Amanda

So sorry to hear that you are now facing myelodysplasia as well as CML. I am sure this has come as a total shock just as you were getting to grips with the CML diagnosis.

It is surprising to hear that you have been told this might have been due to taking glivec, it is my understanding that glivec is used to treat some forms of MDS. I have not heard of another case like yours, and am surprised that with such a complication you have to wait till Jan to have another biopsy, this seems rather a long delay in getting answers.

Can I ask where you are being treated? Is it a CML specialist centre?

Fingers crossed for you.
Healing thoughts
Pennie

Hi again Amanda

I have been thinking a lot about you over the weekend. I wonder if you have looked at Elizabeth Rees diary - look on this sites home page, scan down till you find the link. She is the only other person I have heard of with CML that developed MDS. Her diary gives an excellent account of her journey and treatment at Hammersmith Hospital London. I do hope this helps you as you work with the doctors to find the right treatment.

Healing thoughts
Pennie

Hi Amanda
are you sure that you really have signs of myelodysplasia in your CML cells?
Some of us get chromosomal abnormalities in philadelphia negative cells & can show signs of dysplasic bone marrow such as extra large red cells for example. These signs often disappear with time - I know someone in Australia who was told that his marrow was showing signs of dysplasia - he also has monosomy 7 in some of his ph negative cells - he's completely fine now.
I can't help thinking that if you really had MDS on top of your CML then they wouldn't leave you until January before doing something about it.
Elizabeth had MDS & developed acute leukaemia because of it, you just might have some transitional signs in your marrow while you're adjusting to the treatment.
I had similar problems with an extra copy of chromosome 8 in 62% of my cells & obese red blood cells - things are fine now,
Barbara

Pennie, thanks for sharing that link i will go have a look at it now, im being treated in ninewells hospital, dundee

Barbara, i have a bone marrow biopsy done every 3 months, i get blood tests done every 2 weeks i between, last bone marrow biopsy was done in oct, i was told last monday when i saw the consultant that it would be of no benefit to have it done before then and that there had been definite signs of myelodysplasia found, i can only go on what i have been told, which is why im asking on here for information

Amanda
I have no experience of Ninewells but the leading centre for CML in Scotland is Glasgow (Tessa Hollyoake) which is highly regarded. I attend the Western General in Edinburgh which I'm quite happy with as the consultants seem to be in regular contact with the Glasgow team - given that the myelodysplasia is not widely seen I would ask your consultant if it is possible to go and see the Glasgow team - I met with them some 5 years ago to discuss a transplant (which thankfully was not needed) but Glasgow were very helpful in explaining the options available.
Hope this helps
Annie