What does everyone think about BMBs - are they necessary for all?

[Loubielou]

I was diagnosed with ET in 2009. Platelets are persistently around 600 and I am JAK2 positive. WBC also top limit side of norm range. Treatment is aspirin, which is reviewed 6 monthly via FBC and haematologist consultation. I've never had a BMB and my doctor doesn't think it particularly necessary. Would welcome other people's advice and experience.

[Jo_L]

I haven't had one either. My consultant took the view that the state of my blood and the fact that I was JAK2 positive, were sufficient to make a clear diagnosis and she didn't think that there would be any benefit to me having a BMB at this stage. I guess that could change if she has any concerns that I might be developing MF.

[rubyrubyruby]

I was diagnosed in Jan 2012 with platelets around 600. I am JAK 2 positive too. I had a BMB at time of diagnosis as my consultant wanted to see what state the bone marrow was in as a benchmark to work from. He said I would have to have more along the way to monitor any deterioration.

I had mine done under local and the pain was horrendous, worse than childbirth!! Next time I will ask for sedation!

[Jo_L in reply to rubyrubyruby]

That's a useful bit of advice! I'm aweful with pain (and needles) so will do the same if (when) I ever need a BMB.

Jo

[Loubielou]

Thanks for sharing your experiences. Food for thought! I like the "benchmarking" approach and will explore this with my haematologist again.

[marianela]

Marianela

Hi Loubielou - I had an BMB about 12 years ago when I was diagnosed - I was given sedation and a local pain killer, I can't say it was bad, no pain and it was over very quickly.

They usually do it to make a firm diagnosis - I was never told I would need another BMB.

I am now only on aspirin after having a Phosphorus 42 treatment last year - last count was 516 platelets, my haematologist told me that its OK - am back in two months for a check.

[Elvis-Fan]

I was diagnosed in 2008 with jak2+ ET, I had BMB under sedation, was awful as they gave me enough so I couldn't talk but the pain was horrific so clearly not enough. Consultant has said I won't need another though.

[KevinJH]

Probably like most, I'm not a fan of having sharp objects inserted about my person and the thought of a possible future BMB quite frankly fills me with dread - especially after a friend of mine with leukaemia told me that for him, he has to remain fully conscious whilst the process is done. (I know that his particular treatment/circumstance may differ somewhat but even so.....).

[lucieboo]

Yes, I thought it was surprisingly painful, given I had a local anaesthetic. It was done two years after diagnosis and I asked the haematologist what difference it would make. He said 'None'! Weird! He knows I won't take any chemo after a bad experience with Busulfan and I've refused Hydroxycarbamide as there seems no clear evidence that it makes a difference. And side-effects! Low-dose aspirin and bleeds seem preferable. I have PV, positive JAK2.

[Dodders]

I asked my Hematologist if I should have a BMB and he said that he would only have this done if there was a significant change in my blood test results. So long as my numbers remain stable then he sees no good reason for me to have to have a BMB. That made good sense to me.

[ourlife]

I had my 1st BMB in 1999 I was not prepared for it and it remains one of the worst experiences of my life, how ever my last BMB was done this year and was not that bad.I think you should ask for a professional who carries out this procedure on a regular basis. some haematologists rarely do this and in my opinion are not very good at it.

A BMB can tell us so much and my new doctor believes we should have a BMB every 3-5 years this can be helpful in detecting early signs of progression into MF or anything else more sinister.Furthermore I would recommend a BMB (a) To confirm diagnosis's, (b) To give you a benchmark for the future.

[rubyrubyruby]

ourlife - I reckon we must have the same consultant as that is exactly what he says!

[geordie]

I had a BMB a month ago to check condition of bone marrow with regards to progression to MF I had a local aesthetic and although uncomfortable no real pain the doctor must have been very experiences he took his time and reassured me and moved the needle if he hit any nerves. Consultant happy that condition of bone marrow as per expected for PV but did not expand However it was a relief to know that no progression yet detected

[Gosh99]

I have had a total of 3 BMB, all with local anaesthetic not comfortable, but certainly less than painful than childbirth (I have 2 children),I have ET and it has been useful to see changes in BM over the 9yrs. If your consultant suggests it I would go with it, they wouldnt suggest just for the sake of it.

[nicki2 in reply to Gosh99]

hi

i had a bmb i didnt feel it to bad but the night was worse getting to sleep as i had a pillow on my back to stop me rolling on to my back also i felt next day was worse i got told that i was lucky as you can get it done on the breast bone which i would not have liked as you would have been able to see what they were doing but i got one years ago if consultant says its time for another one i would say fine no bother

[quonut]

Diagnosed with PV in 2007, was told that the BMB would 100% confirm the condition which it did, i am also JAK2 positive.

[MichaelS]

I had a BMB way back in 1983 to prove that I had PVR. I remember that a registrar did it and I had very little pain. In fact I think he had a harder time than me because he was exhausted after doing it saying that my bones are really tough. I had another one in 2010 when it was confirmed that I had changed to MF. The second time it was more painful, but mainly when the bone specimen was withdrawn. I had local anaesthetics in both cases and I don't think I needed pain killers later in the day or night. I think they must be useful to prove a diagnosis.