Good appt with MPN Specialist

[Solyesh]

Saw my MPN specialist today. Marks first 3-month appointment since diagnosis in Dec 2020 (until this time I had monthly or every 6 week appointments). As this was the longest interval between appointments and bloodwork since finding out I have Et (Jak2+), was a little nervous about the outcome.

Good news is that all bloodwork is in line (platelets remain stubborn at 560). The Specialist said he was quite happy with where things are - he specifically mentioned the sustained decline in my WBCs (which had been consistently above range (from 11.1 - 14.1) for two years - he said that this was very important (he had not really focused on WBCs previously although we had discussed the potential significance of persistent leukocytosis).

The liver panel readings were also all in normal range - which is great news. So the only current outlier are the platelets at 560. My MPN Specialist in general is fine with platelets <600 given no history of thrombosis and me being <65, but he would like to see them in range (<450) if at all possible. I am currently on 90mcg of Peg every 17/18 days..given the good liver numbers we agreed to try 90mcg every 15/16 days and see if that helps move the platelets a little.

He also shared that the extended gene panel was approved as standard of care for MPNs in Israel - We are scheduling my second one for a year from now - hopefully to give the Peg time to move the needle on the allele burden (assuming we are now at our ongoing dosage/timing). Interestingly enough he also stated that the MPN incidence in Israel is extremely rare at about .004% of the total population (about 350 current patients out of 9.3M) but that he and his colleagues believe that is due more to ignorance/mis-diagnosis (he estimates the actual incidence to be about 3x (in line with other countries) that given some of the national database indications are much higher for possible PV and ET.

So for now continue withe the Peg and daily aspirin and next visit/labs in 3 months.

[hunter5582]

That is really good news. Glad to hear about the positive response to PEG.

Glad to hear that your MPN Specialist is not sweating the PLT number at 560. There is no linear relationship between risk of thrombosis and PLT at that level. We always have to balance the risk of treatment against the benefit. Best not to be overly aggressive in treatment and make the treatment worse than the disease.

I hope you see a positive response in the allele burden when you repeat the testing.

All the best.

[Hopetohelp]

great news and so informative, thank you

[Mostew]

Good to hear your update. Sensible Specialist .