Platelettes going down down

[Jschwab]

Hello-

When I was diagnosed with ET, my platelettes rose into the near millions, in 2019, 4 years ago. About 2 years ago, they began declining. 6 months ago the platelettes were 401, now they are 342. Is that a sign that they may be going too low, or might that be typical for me. I am happy they are in the normal range, but should I be worried that they are declining? They went down by 60 in 6 months... I will ask my hemo when I see him Monday too. However this amazing support group, from Hunter to Anag and Steve, know more than my Hemo! Love to you all-

Jamie

[hunter5582]

We are one big MPN family. Love abounds. If I recall correctly you have a triple-negative ET. There is a reason why your PLTs have dropped from the 900s to the 300s but I am afraid we have no way to know why. There are a number of possibilities and I would not want to speculate. This really is a question for a MPN Specialist to assess. I would suggest going to this appointment prepared with a list of information and questions.

1. Has there been any change in your MPN constitutional or secondary symptoms (e.g. fatigue, pruritis, erythromelalgia, insomnia).

2. Look back at al of the numbers on your CBC and CMP. Aside from PLTs, are there other trends are evident? What do any trends mean.

3. What do some of the other labs look like? Whatever has been done. Iron panel. Vit B/folate. Prothrombin times. LDH. etc.

4. Were you ever checked with a Myeloid Panel to look for the non-driver MPN Mutations?

5. What are the possible reasons for such a significant decline in PLT? What would be the diagnostic indicators for each of these possibilities?

6. Clearly something significant has changed. What are the next steps diagnostically to assess your MPN status?

None of us has any way to know what your status is. There is no question that the change needs to be explained. This is not a time to allow your situation to be ignored. Prompt follow up is indicated.

It is a little unnerving that you think Anag, Steve and I know more than your hematologist. That tells me that you need a new hematologist, one who is a MPN Specialist. Here the lists are again for reference.

Worldwide mpnforum.com/list-hem./

USA pvreporter.com/mpn-speciali...

All the best my friend.

[Jschwab in reply to hunter5582]

Thank you Hunter, as always xo