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