Bone marrow biopsy frequency ?

[Lainy1]

I had my first nine marrow biopsy 6 years ago now. The emergency consultant I saw then did BMB to get baseline levels as well as confirmation of E.T

However I was then transferred to my local haematology consultant who said she wouldn't have bothered with a BMB.

The reason I'm asking is I get awful leg bone pains and would like to know if there is any degree of scarring/ fibrosis

Kind regards 🙂

[EPguy]

Current best practice is to do a BMB at Dx, as you did.

Bone pain is associated with PV and MF according to:

mpnresearchfoundation.org/e...

It doesn't mean that ET can never also share this condition, but esp if your pain is changed from before it's worth knowing what is going on. But I see in your prior post you've had bone pain before.

Are your blood counts the same and in range? Any change in Hb/HCT or WBC? Your Dr may be relying on these numbers.

One reason BMB is of increasing interest is the potential benefit if we are or may be on interferon IFN (Pegasys or Besremi). IFN can for some reverse marrow damage, but we needed BMBs to know. This was less a factor until the recent increase in acceptance and use of IFNs. Has your Dr discussed IFNs? My Dr plans another BMB eventually along with regular allele tests.

But your immediate concern is the possibility of progression. If your Dr will not even consider another BMB or give a good reason not to you should seek an MPN specialist if you want better info.

--

I've had minor fleeting bone pain but it has been well controlled with my blood counts on HU and Besremi. In your case it's not minor nor controlled so you should find a Dr who is willing to investigate.

[Cja1956]

I’ve had 3 BMB’s in the last 15 years. The first one was how they diagnosed with ET with Jak 2 in 2008. My second one was in 2019 which confirmed I had progressed to MF, and my 3rd one was in 2021 to see if I was a candidate for a SCT. I had the first one in the doctor’s office and the other 2 in the hospital. As EPguy says, if you suspect that you have gotten worse, you should find a doctor who will arrange one. My first hematologist didn’t think I needed one, so I found a specialist who confirmed my suspicions. I’ve been with her ever since.

[RazB]

Hi, I have ET and have BMB every 2 years. I also had/have bone pain in legs although my BMB results are at 0-1 so fibrosis not developing at the moment. The bone pain definitely got less pronounced after I started Hydroxy and platelets lowered. Is your platelet count very high? Rx