Post ET Myelofibrosis

I was wondering how many people have had this diagnosis and if you have I would be interested in hearing about you. My platelets have been rising and I am going for a bmb and a bma on wednesday. I am thinking this could be a possibility after everything I have read. Thanks

Audrey, it is my understanding that if your blood counts are rising, that you are still having ET signs.  Myelofibrosis is marked by decreasing counts.  Why do you think you are morphing into Myelofibrosis?

I think at the time I thought it was because my platelets were rising so rapidly after four years of being stable in one range. I think I also thought that when my doctor had me go for the bmb to see if there were underlying reasons for the rise. As it turns out there was no progression and I do have ET. I am jak2 positive which I already knew and I have started hydrea this week.

Hi Audrey I was diagnosed with ET back in 1994 I was put on Hydrea and tolerated it for 6 years, my platelets hovered around 700, had been 1 million, I went off all medication and tried some alternative not that doctors like you to do this.

I used a thing called Chelation EDTA Therapy my platelets lowered and I did not take any more medication I continued to go to my specialist and had 3 bmbs over the next 8 years.and remained stable. my last bmb (2007)showed and blood tests showed my white cell and hb lowering that is when I had gone into Myelofibrosis. I have continued on no meds and specialist still just monitors my blood work regularly. It remains low but I only have minor symptoms, anemia and have still managed to maintain a full time job. I also have another illness Lupus and Sjogrens and they give me more problems than my myelofibrosis.

Hi Robyn, Thanks for sharing your story with me. I have never heard of Chelation EDTA. I hope you are able to feel well and not take any medication.