Dr. Abu-Zeniah, at Weill Cornell in New York, has done groundbreaking research on the use of Interferon with MPN. Interferon is the only med that offers the chance for a “cure.”

Hi DeepakChoudhary
My PV progressed to myelofibrosis about 5 years ago when I was perscribed ruxilitinib and had 2 weekly blood transfusions for the first 4 years. Very sadly the treatment is no longer having any effect and I have been told by my consultant that the cancer is now progressing and leading to leukemia. She is unable to give me a time frame but have been told it could go rapidly. I am going for a blood film on Monday to tell her the results of the blast cells. Currently I am under the palliative care team who are wonderful
I am also having a ultrasound on Friday to see the results of my enlarged spleen and other organs as I am now having little appetite and losing weight.
I really hope that your results do not rise and things remain stable.
Take care
Jean4

Jean4 spleen and liver are normally the organs that take over the blood production once the bone marrow stops.
my spleen is also enlarged
never asked about my kidneys
in the elaborate blood tests i need to do at end of my hospital visit it would show if something is wrong

I have stage two myelofibrosis which is progressing with blast cells. I had a ultrasound done last week to check the spleen. The results were very worrying
as my spleen has now doubled the size it should be, my left kidney was virtually non exsistant with no blood supply and my liver was also enlarged.
I have been taking ruxilitinib for some time but is now having no effect. On my consultation yesterday the consultant has placed me on a very new drug just been approved which she is hoping will make me as comfortable as she can for as long as she can. I am fully aware of why these organs have enlarged due to them trying to make the cells that the bone marrow can no longer do. A very worrying time but the hospice are being very thoughtful and helpful.
P.S. Is anyone else on this new drug
Everyone take care and look after yourselves.
Jean4

@A myMPNteam Member this is new for me , the only way i know to get PPV-MF out of my body is
a bone marrow transplant

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