Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Almost 16 months post transplant but cancer has returned. Just had 3 cycles of Azcitadine & going for bone marrow testing to see if I am in remission & can gave DLI to buy more time. Anyone with advice or in this position as I am devestated by these events & worried about what is to come.
Hi again Mclg, lets see if anyone can give you any help.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi have you had any discussions about trial drugs or CAR-T cell treatment? here are a couple of links to American info re trial drugs which can be use depending on the profile of your disease and second about CAR-T treatment for AML
We do have some users who either have had CAR-T cell therapy or are about to for Lymphoma and in this thread is mention of someone in the states having this for AML https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/f/d6a101d9-6dcb-4437-ad00-0445bd965da4/183074/car-t?Page=1#1354954
so if you post a question there Alzjunkyard may see it and reply or may be able to find out more from their friend
hope this helps but doe start the discussions re options and why they recommend one over the other.
Thanks. Will try the link & speak to hospital
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