@hipsu5

A diagnosis of ET lands like a ton of bricks.

Scary things are NOT inevitable!

By taking Plavix and HU, you're off to a great start.

So sorry you have ET, but so glad you've found this forum!

Ask a million questions. Someone here will have experience to share.

You are not alone!

@hipsu5

Hi I had a similar situation, the platelets rising and jak2 in 2021 and they started me on HU similarly. I did have a biopsy early on I guess to rule out other things. But it seemed to damage my back or periformis causing me chronic sciatic pain on the side of the biopsy when I walk. I have had back problems in the past but never sciatic pain before. Can't hike anymore. The Cleveland clinic Dr. I had a recent consult with said they used a decades old procedure in doing the biopsy and not good results. So not sure if it is needed for you at this point, but if you have one make sure it is at a place that is highly rated and the most recent technology. I may need another at some point but not sure.

With ET, until recently and other than the biopsy causing issues, I haven't had much of any side effects. After almost 4 years now my other cells are increasing and we have been increasing HU and I am starting to have more side effects like fatigue and nail pits and breakage. I also recently had superficial vein clot (went off aspirin a week for a back epidural, maybe that was the cause).

I am told that the hematocrit reading being too high is most likely to cause clots and they like to keep it under 45. Cleveland Clinic also likes to have NGS myeloid panel to investigate other possible gene defects that can help determine the diagnoses. United Healthcare denied but just allowed on appeal (without insurance at labcorp cost is about $4,400). No results yet.

I didn't have an ultrasound of the spleen initially but a year later with a new hematologist we did. It's cheap and easy, I think it's a good idea to get a baseline to see if it increases in future. My gastro Dr. says it can't be palpated, but hematologist says can if it gets to be significantly large I guess. It seems like most people live long and don't have a lot of issues with ET but it can also morph into other things. I think that is what these tests are for , to make sure not other things that might require more aggressive treatment. Diagnoses don't seem to be cut and dried.

I guess for BMB ask what they hope it will accomplish and how important at this point. I think it is mainly to look for scarring again pointing to diagnosis and prognosis? I don't think most people have issues with BMB like I seem to have had.

Tammy, 63 ET diagnosis since late 2021

@hipsu5, have you had further testing in the meantime? How are you doing? Any update?

@hipsu5, I am also a member of the myeloproliferative neoplasm (MPN) club. My condition is called Polycythemia vera (PV). PV is an ugly sister of your ET and in the MPN family. In May of 2018 I was diagnosed with PV after a routine blood test with platelets in the 685,000 range. Fast forward to 2026. I take one 500 Hydroxyurea (HU) every morning. I call this "Chemo in a pill." I have little or no symptoms. I am determined not to let this condition rule my life. I thought my diagnose was the end, it turned out to be a new beginning for me. I go to my gym 3 times a week, I stay active with my veteran's organizations and am on my American Legion Honor Guard detail. I am a volunteer for Hosparus where I visit veterans on hospice. I have fatigue every evening. Is that from PV or just being an old timer? Who knows? Today is my 67th birthday. Everyday is a new adventure. Long live the fighters!

@hipsu5 Before you decide on they biopsy please ask lots of questions. My local hospital only does the old type of biopsy one that has the the needle inserted in the back and done by manually turning it by hand to get the sample. My doctor sent me out of town to another doctor that uses a drill. They put me on my stomach and put me to sleep. Did the procedure and I never felt a thing and the best thing was no pain at all. So this way is no big deal I was in and out of the hospital in 4 to 5 hours.