I feel like this disease has peaks and troughs. I agree that blood work is a good idea. Those symptoms are common to ET. Take care and try not to worry

Renee, I’m afraid I would be very skeptical about a provider who only wants to see you annually—okay perhaps if the MPN specialist was to see you that often as a second opinion, mainly checking to see that your oncologist/hematologist
or GP has you on the right track for treatment. In any case. If the MPN physician is your only provider, that would be unacceptable to me, especially with the onset of your symptoms. I would make a follow-up appointment soon to have her re-evaluate.

What you are experiencing may or may not mean that the ET is progressing. There are a number of factors to consider.

It is important to note that PLTs can vary by as much as 100K in a single day based on what is going on in your body. My PLTs used to vary from 500s to 700s from time to time. If I was experiencing reactive thrombocytosis, the levels could go up to the high 900s. It the the trend over time that matters.

Fatigue is the most common MPN constitutional symptom. It can also be a medication side effect. Fatigue can also be the result of infections and other conditions, including nutritional deficiencies. Since it is a new symptom it is something that does need a proper assessment.

The burning tingling sensation you describe could be a number of things. This is a fairly common MPN microvascular symptom. It could also be a neurological issue such as paresthesia. This could also be a medication side effect. (Note that if you are taking hydroxyurea this is something you are supposed to call the doctor about ASAP). This is another symptom that needs a proper assessment.

You should definitely consult with your MPN care team about these new symptoms. Hopefully, you are consulting with a MPN Specialist about your care plan. If not, this would be the time to do so.

Wishing you all the best.

It doesn’t necessarily mean you are progressing, but you should call your doctor and get some lab work done. Good luck.

I believe every 3 or 4 months, even by telemed, and cbc/cmp labs monthly would be better monitoring.