You were all so kind with support when I had posted that I was anxious about my first visit to the specialist, and I wanted to update you on how the appointment went.
The Dr was terrific, but not nearly as informative as I had hoped. She confirmed that I have ET & early MF, but the issue is I am what they call a triple negative for the commonly found gene mutations of Jak2, CALR, MPL. Because of this she wanted to reserve her opinions until further test results are in. She ordered a full genetic screening.
This is where things get interesting. She held back opinion, but the office emailed me a copy of her letter to my referring hematologist. I didn’t expect much and was taken aback to see that if I don’t have some incredibly random gene mutation the next conclusion is that I may have MF Leukemia which in turn caused the ET. I’m staying calm , well as calm as one can be when waiting a month for results. This was definitely a sucker punch. Fortunately, I’m seeing my hematologist tomorrow so my hope is that she will tell me that I either misinterpreted or that leukemia is a long shot. Granted I’m exhausted much of the time, but I just don’t feel that sick. I’ll let you know what I’m told tomorrow after the appointment.
If you could send positive vibes I’d really appreciate it. I was just getting adjusted to my current diagnosis. Don’t think I could handle the alternative quite as well.
This is one time ignorance would be bliss until all results are in. Just wish they hadn’t me copied on that letter.
As always thanks for listening