Essential Thrombocythemia: Looking for information and support

Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2 positive. I am taking a 1000 mg of HU a day. My platelets were 700 but this higher dosage I hope will improve that. I've never had a bone marrow test.

Hi @jewelfaux A bone marrow test is a valuable tool for your hematologist. Since you have a blood disorder, a bone marrow biopsy (and exam) (BMBX) goes right to the blood manufacturing center of your body. A small sample of your marrow and the surrounding peripheral blood will be analyzed and examined to give your doctor a clear view of the health of your bone marrow, its ability to form healthy blood products and also check the condition of your specific blood cells.
You can often choose to have this done under a general anesthesia similar to what’s used in a colonoscopy. I’ve had 13 bmbx done…3 without anesthesia and 10 with…for the record, I’ll always have anesthesia from now on. 😉 It’s a fairly quick procedure with very little discomfort after.

Has your doctor recommended a biopsy for you?

I am sorry your husband has had heart trouble. I have a bad heart mitral valve, and asked my cardiologist to tell me whether anagrelide or hydroxy would work better for me due to heart issues.

He reviewed side effects and said hydroxy because anagrelide does cause some heart problems in some ET patients.

Many patients are fine on anagrelide, but oncologists probably should be more alert to those cardiac side effects. It seems to be pretty common.

Whether the anagrelide caused or aggravated your husband's problems is something his cardio and oncologist could discuss. If you can get them to. Specialists can have a lot of tunnel vision and are sometimes not inclined to go outside their bailiwick.

No, it was not mentioned. I did have three different blood tests done which showed I was JAK2 positive and not CALR positive. I do have regular (every 2-4 weeks) blood work done to check my platelet etc. numbers to see how my HU is helping.

I’ve been taking Anagralide for a year or so after 30 years of HU. For high platelets. My bone marrow has stopped making red blood cells. Both Anagralide and HU tend to lower red cell counts but I need them to lower platelets. No change in heart problems as I’ve had Afib for years and take Furosemide for that. I’m 87 years old.

Then don’t worry about needing a bone marrow biopsy...they aren’t always necessary to aid with a diagnosis. Your doctor is getting all the information they need from the blood work. Are you tolerating the higher dosage of hydroxy ok?

I don't know yet. I just started 1000mg a day two days ago. I had been taking 500mg then 1000mg alternately. My doctor doesn't think the issues I've been having are anything to be concerned about. I had intestinal pain with bloody diarrhea ( might be IBS?) 3 weeks ago that a gastroenterologist is? looking into and 10 days later swollen legs. I'm fine now.

Welcome jewelfaux,

When were you first diagnosed with ET JAK2 and what was your initial platelet level?

I hope your gastroenterologist is going to follow up with testing. Should your legs continue to swell maybe you might consider seeing a cardiologist.

I was diagnosed in 2022 with ET JAK2. I had labs and a bone marrow biopsy. My platelets had been slowing rising for a few years so my GP referred me to a hematologist when they reached 621…then took a jump to 735. I took 500 mg daily HU and then lowered to 500 mg every other day. I was just allowed to stop taking for about a month as I was under a lot of stress moving and many headaches, Just had labs…platelets are 564 so I will be going back on HU. I see my hematologist in a week.

Best wishes, Eileen

I was 1st diagnosed in November of 2022. My platelet count was 759. While taking full aspirin it dropped to 630. 500 daily HU was added in January, then platelets increased in February to 832, HU now 1000 daily (still on 325mg aspirin). I do see a cardiologist twice s year. My platelets are never lower than yours. Does the HU help you? I hope so. How old are you? I'm 74.

As I understand it, a bmbx will tell your oncologist either there is fibrosis in the bone marrow and to what extent. It can provide a baseline for future bmbx's. Given that the emphasis for MPN patients is management vs cure, a good question for your doc is: "How will the results help you treat me?" The copay on bmbx can also be pricey, so something else to factor in.

My bmbx was fine with just Ativan for sedation and topical anesthesia. It's over quick and felt about like a bee sting.