A support group for anyone affected by leukaemia to come together, share experiences...
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Thanks Caroline, they have made it sound really bad, to be honest I don't think they know themselves, first they said months then 6 months then 12 months or longer, it's so scary, I think sometimes it's best not knowing. From experience have you seen the azacitidine work when intensive chemo hasn't ?
Oh definitely ! Its a longer, gentler treatment and can be given until a response is lost. We have a number of patients for whom it has been successful in getting the response to enable us to go to transplant.
Caroline - Macmillan Information Nurse Specialist
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Is that even when there are blasts present ?
we don't normally do a transplant if there are blasts present as the disease will usually grow back. However, the Azacitidine can clear those. The team will be assessing his progress and options. It might be worth speaking to his CNS as I can only give you general advice whereas she has access to his notes and information. That being said, I am happy to help!
Hi Caroline, my husband has the AML 19 treatment then the flag-ida, I am hearing about DA is that a different treatment ?
I assumed that DA had been discussed and discounted. Yes, it is a regime that has been the standard go to for years. Are they considering that for your husband now?
No he has had the AML 19 treatment then he had a cycle of Flag-ida, is DA a different treatment ?
I had a few technical issues last week and was using my phone to reply, I am only seeing questions now. DA is a different treatment . It has been around for years and most units use it as standard chemotherapy if patients are not on a clinical trial. If you click on the link, it takes you to a very good booklet on the regime.
I hope this helps
Hi Caroline, Thankyou for all your replys I do really appreciate it, he had bloods taken yesterday, he is 61 days post chemo and his blood counts are still low, is this normal ? Is it the chemo ? or is it a sign.the MDS is getting worse ?
it can happen. He has had a lot of treatment and his bone marrow has been hammered. At some point they will do a bone marrow biopsy to check what is going on and his response to treatment. At that point they will be better informed about whether it is the chemo that is suppressing his blood counts or the MDS.
I am sorry that I cannot be any clearer, but in this case, a biopsy will give all the answers!
Keep your chin up, you know where we are if you have any other questions
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