Bone Marrow test

[Skater69]

I have been diagnosed with ET and have the JAK 2 mutation. My hematologist said the bone marrow test is up to me and that it would not change the treatment. The only purpose would be to establish a baseline for the disease. I said I would have one but now I am rethinking my decision. I have had problems with hip pain for years. Have any on you had problems after the bone marrow procedure? Not sure what I will do.

[redumbrella]

Hi, I have PV Jak 2 negative and am in my 17th year with same. I have had 3 BMB's in that time. I found them a tad uncomfortable though with a local anaesthetic not particularly painful. Apart from a dull ache for a few hours following the procedure I have had no lasting effects. Personally I would see no reason that you should not have the BMB if can only help the Haemo understanding your own situation.

Best of luck whatever decision you make.

Garry

[Caryopteris]

I have had ET Jak 2 positive for 13 years. I am taking hydroxycarbamide and Asprin daily. I have never been offered a bone marrow test and as far as I can tell my treatment is working well. I would avoid the test myself as any procedure can go wrong. It is annoying having ET as it can have some effects on us but there are a lot worse problems that you could have. All the best.

[Emmyroos]

Hi there - My initial hematologist discouraged me from having a BMB. I was diagnosed ET with high platelets/ JAK2 by that doctor.

A year later, I was able to get in to a MPN specialist, and she insisted on a BMB. The results of the BMB showed I had mild scarring (myeolofibrosis) and that changed my course of treatment entirely. In my personal experience, I wish I had that initial baseline with my original hematologist. Now I do not know if I have primary MF or if ET had progressed to MF. The difference between those two diseases are very significant.

As for the BMB procedure, I had no issues with it. I would do it again next week if I had to. I had a sore spot on my lower back/bum for a couple of days, but that is about it.

Best of luck with your decision!

[EPguy]

A baseline for everything about the disease is useful. That includes BMB and full genetic sequencing if your insurance will cover it. You are likely to use this info as future treatments evolve.

As Emmyroos said, with ET there can be overlap to MF in the form of pre-fibrotic myelofibrosis. A BMB will help clarify that, unless you Dr is certain there is no possibility of this overlap. You will also get a fibrosis grade from 0-3, likely the lower end or zero for ET. This may be useful info if you have future treatments that can reduce it, or to track any increase.

[Orangeboykitty]

Just had my 2nd BMB, this time with sedation. The first time was extremely painful for me but this time it was a breeze. I had a hip replacement in 2014, but there were no issues either time. They take the marrow sample from a completely different area. At the moment I'm very slightly sore in my lower back, as if I just had a small cut, but that's all.

[Avamia94]

I have et jak 2 positive and was diagnosed by having a bone marrow biopsy did start on Asprin but had a allergic reaction so on clopidogrel. Have been since September 2017, my main problems is itching someday's I'm alright others i cannot stop scratching

[Dodders]

I understand any apprehension you may have about having a BMB. Quite a few years ago, when I had PV, I asked why I'd not yet had the procedure done and my then haem said that unless my bloods changed in some way then there was really no need for this to be done. With Hydrea, and occasional venesection, my bloods were stable for 12 years. Then, when I started to become anaemic for no apparent reason, I had a BMB which revealed fibrosis. I can see why it would be worthwhile having a BMB to provide a datum point from which subsequent BMBs might then reveal useful diagnostic results. Out 5 BMBs only one was painful and that was performed by a trainee under the supervision of a very experienced Dr. Otherwise, local anaesthetic along with gas and air made it a no more than slightly odd-feeling/uncomfortable procedure. Wishing you all the best.

[Rockstone]

I was offered one but refused. Getting along happily with hydroxycarbamide