ASXL1 mutation 39% Worried about MF turning into leukemia

[merlisa]

Hello Everyone,

I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets.

and I also have the ASXL1 mutation, now it has 39%, it's already quite high for transferring to leukemia. But no any good medicine for ASXL1.

I am facing a situation where there is no medicine available, but there is medicine that cannot be used.

But my doctor does not give up on me. The main function of ASXL1 is to participate in histone modification, So, my doctor try a medicine called Chidamide, it is a HDAC inhibitor, saying may help me, but no any experiences in the world and in China. I agree to try. Because I have no choose. I have no stem cell transplant donor. If one day I transfer to leukemia, I will have to rely on chemotherapy, and my quality of life will be poor, ultimately leading to death.

It is a hard process, the HDAC still continues to consume my platelets, to the point where I can only rely on Eltrombopag to boost them, and I have stopped using interferon.

and even I doubt the increased platelets are from Splenic hematopoiesis.

I live in fear and hope every day now. Do you have similar experience as me or any other good solutions?

[KLCTJC]

Don’t have a similar experience. But will be thinking about you and praying for you. I hope things get better and you find a good pathway forward.❤️

[clematis26]

Sorry to hear this - hang in there - tomorrow is another day and your Doctor sounds good - I'm hurting this afternoon having been dismissed earlier by a cold and clinical receptionist ....thinking of you and wishing you well X