Connect
← Return to Triple-Negative Polycythemia Vera with MF-1 – Looking for Similar Case
Discussion
Triple-Negative Polycythemia Vera with MF-1 – Looking for Similar Case
Blood Cancers & Disorders | Last Active: Jun 3 8:54am | Replies (7)Comment receiving replies
@eloise999 Hi Eloise, I have many of these symptoms as well and use lip balm daily because of the dryness. I also started wearing glasses to help with some of my vision-related symptoms.
At the moment, I am waiting for my health insurance to approve a myeloid NGS panel, since these tests are very expensive where I live.
How many genes were included in your panel? Here, the largest panel available covers up to 92 genes.
Regarding the ASXL1 mutation, have your doctors commented on its significance in your case or provided any specific recommendations based on that finding?
Wishing you all the best, and I hope you continue to get answers.
Replies to "@eloise999 Hi Eloise, I have many of these symptoms as well and use lip balm daily..."
Connect
@iurefranca it looks like 53 genes were screened for? At least 53 were listed on my lab report. My doctor thinks I have the ASXL1 mutation because I had CHIP and it developed into ET. CHIP is not extremely rare, especially in older people, but it does not usually transform. I also saw a Dr. at Mayo about my diagnosis. He thinks the ASXL1 is part of my ET, but it is not recognized as a driver at this time.