Blood cancer and life after stem cell transfusion

[peridito]

Could someone talk to me about having acute leukemia and a trnsfusion ?

My friend's son ( late 20's ) had an acute form ,treated but came back within a year .Stem cell transplant .

I see my friend regularly and although we talk a little about her son she is clearly not wanting to dwell on it and I feel she needs some down time doing other stuff with me to escape it all .

But I would like to know a little about what her son is going through .I know he's at the hospital weekly and I know he's very up and down .And I think his immune system is badly compromised .

Can anyone share their experience ,direct or indirect ?

Hi I had a stem cell transplant for MDS and not AML, so I can't tell you about AML. However there is a Facebook group called Bone Marrow & Stem Cell Transplant Patient Support with lots of people on there who can tell you about AML and transplants.

Also there are discussion forums on the Macmillan website with one about AML:-

community.macmillan.org.uk/cancer_types/acute_myeloid__leukaemia_myelodysplasia/discussions

Hope this helps

@GirlsBlouse17 thank you for posting that link - looks helpful.

Hope you're doing well .

@peridito Hi OP hope it's been helpful to you. I doing really well. It's been nearly 3 years since my transplant and am in remission. Consultant said he considered me cured of blood cancer now. However the transplant does affect your immune system because the high intensity chemo before the transplant gets rid of your old bone marrow and the transplanted stem cells grow new bone marrow. This means you start again with a baby's immune system and so it is weakened and compromised. I had to have all my childhood immunisation again. Many who have stem cell transplants get gvhd (graft versus host disease) where the new white blood cells produced from the bone marrow generated from donor stem cells doesn't recognise their own body cells so the cells try to reject the body (the opposite of a normal organ donation where the body rejects the new organ). So there are all sorts of issues you can have after a transplant and there is a higher risk of relapse too soon after a transplant. I will pray for your friends son

Oh thank you Girls ,lovely to hear you re doing well . It must be hard for my friend's son ,he's not established in life with work or relationships and this ,apart from the physical effects ,must take so much to deal with emotionally .

And his parents suffer so much ,everyone's life is on hold and revolving round hospital appointments .

Thank you again for taking the time to post .

Thank you Peridito . Yes it will be really hard for him. I was told that AML is difficult to defeat. I had MDS which, if keft untreated would have transformed into AML, so I am very lucky. I was also lucky because I am in semi retirement and had DP to look after me and our mortgage is paid off so we didn't have the financial pressures whereas your friends son is trying to establish his life and now that has been disrupted. Physically and emotionally it is tough going. It is tough for his family too who will be trying to care and support him. My life was put on hold for 2 1/2 years as was DPs. I remember after my transplant having to travel an hour and a half to hospital 3 days a week for the first 6 months. I would be there most the day and then an hour and a half back home again. It was exhausting. It gradually reduced to less and less appointments and now I am on a yearly appointment. Then there was all the ambulance trips to a&e on top of them. And numerous transfusions. It will be tough for your friends son and also for his parents . They will need all the support they can get. I hope the Facebook group and the Macmillan prove useful