Ask about leukaemia

Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.

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Connerf1234
Posted by

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 ?

Caroline- Macmillan

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

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Connerf1234
Posted by

Is that even when there are blasts present ?

Caroline- Macmillan

Hi there,

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!

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Connerf1234
Posted by

Hi Caroline, my husband has the AML 19 treatment then the flag-ida, I am hearing about DA is that a different treatment ?

Caroline- Macmillan

Apologies, 

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?

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Connerf1234
Posted by

No he has had the AML 19 treatment then he had a cycle of Flag-ida, is DA a different treatment ?

Caroline- Macmillan

Apologies

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

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Connerf1234
Posted by

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 ?

Caroline- Macmillan

Hi there,

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

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.