I was diagnosed with PMF at 45 which is my the median age for this disease.
I too had been diagnosed with PMF at 45, I am now 65. First 10 years had been uneventful, just dealing with some of the symptoms, which are managable. Some ups and downs after that, and do feel the PMF is slowly progressing. Am on Jakafi and predisone with initial success. Feel like I will need to change treatment soon as my spleen has grown over the past year or so. Otherwise I am as active as my body allows.
(Have my hematologist appt tomorrow, always stressful to see what my CBC reveals.)
I was diagnosed at age 77 and now 78. Doing ok. I have some ups and downs. But living my life with PMF. You can do it!
Sorry about the abnormal karyotype, but glad about the stabilizing with clinical trial.
The biopsies and aspiration revealed a new issue (abnormal karyotype) BUT it also showed that my blast counts are still at 1% which is great news. No reversal of fibrosis but it seems to be “stable” for now except for the abnormal karyotype. Bothoncologists/hematologists that I see agree that it confirms that treatment (clinical trial) is causing the disease to stabilize; but both are concerned about the abnormality since it is new. The previous 2 bone marrow biopsies/aspirations showed a normal karyotype which have been within 10 months. It’s a watch and wait game to see what that means down the road. My next biopsy is in April. They are NO fun but give the most information! Prayingthrough✝️🙏🏼
I hope this was helpful.😊
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