All I understood from Dr. Blood at our last chit chat was that she considered me "stable" (that is my blood counts were staying in the mid 600s to mid 700s), and that age 60 wasn't a magic number that indicated a need for chemo, even though everyone over 60, regardless of health status, is walking around with a statistically higher risk of blood clots.
I was also concerned about whether Doc was taking my heart valve problem and slightly elevated blood pressure into consideration.
Turns out she was.
A site called Blood Reference offers a lot of info from the World Health Organization (WHO) about about how to sort patients into various categories. Doctors use these tools. Your doctor probably does.
There are guidelines about how to diagnose ET and other MPNs, as well as something called the IPSET: International Prognostic Score for Thrombosis in ET. You can score yourself right here!
I'm over 60, but don't have the JAK2 mutation (I'm CALR) and have never had a clot. That puts me, at worst, in the intermediate risk group with a score of 2. I'm not going to quit working on doing what I can to maintain good cardio vascular health. But it does explain why the doc didn't feel impelled to get me on chemo to lower platelet counts right away.
If I were to develop a clot, I would jump to the high thrombosis risk group, and chemo would begin.
For those of us with CALR, hematologists seem to be waiting for us to hit around a million before starting chemo. At that point complications like von Willebrand syndrome can develop, and chemo is needed to reduce those risks.
Remember that platelet count alone is not a good indicator of clot risk. The type of mutation you have is more significant. JAK2 patients have the higher thrombotic risk.
CALR patients, on the other hand, may run a higher risk of developing myelofibrosis if they have the CALR Type 1 mutation (which I do have).
If you don't know which mutation you have, talk to your doc. It makes a difference in how your ET might progress.
Be well!
Related: Diagnosing ET and scoring your ET risks
Related: Thinking about stroke risks
I was diagnosed with et 12 years ago . Back then they only knew about JAK 2 platelets were at 1000 at that time. Best source is the MPM Foundation.
ReplyDeletehttps://www.mpnresearchfoundation.org/