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.

Stem cell transplant relapse

Mclg
Posted by

Hi Caroline. I had sct in nov 2017 from unrelated doner. I did well until relapse in march 2019. My blasts were 15 % & i received 3 cycles of azacitadine & blasts reduced to 4 %. I then had dli & the plan is 3 more cycles of azacitadine. Chimerism is 100%. Intially i was told my prognosis was poor but was then told there is a chance of cure. Feel confused. Generally i keep well but finding it hard to make any plans. Do you have any advice ?

mclg
Caroline- Macmillan

Hi Mclg,

The fact that your Chimerism is 100% is fantastic! Sometimes the bone marrow just needs a top up. The fact that you have responded to the DLI and Azacitidine is great and moves the goal posts in your favour. But only time will tell long term. I think the you may need to be 'realistically optimistic!' but things are definitely positive at the moment.

 It is hard to make plans when everything shifts with each treatment. It may be worth speaking to a counsellor at this point as you have been through so much. They will be a 'safe space' away from relatives and friends to 'vent'. Your CNS will be able to refer you or you can access counselling through your GP, Maggies centre of a Macmillan centre locally.  The counsellor will be able to give you coping strategies to help with the uncertainty.

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.  

Mclg
Posted by

Thanks Caroline. I am planning to see a counsellor.

I was wrong about my chimerism. Results are 96 % for total blood & 97 % for T cells. Plan now is for another DLI.Does this change your response ?

mclg
Caroline- Macmillan

No not in the slightest. Another DLI should bring you up nicely!

Good luck

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.