Bone Marrow Biopsy

[cheeks1]

Was just wondering how often should we be having bone marrow biopsy's or should we only have them if bloods become more deranged?. Keep getting conflicting advices as my blood levels changes at each consultation. I have ET only on Aspirin at present.

[ETphonehome]

Most haems are of the belief that they should only be done at diagnosis or if your counts change. Personally I think it would be a good idea to have one done at regular intervals ie: every five or ten years.

As with many other aspects of treating MPN's there is great debate among the experts, some believe you can get all the info you need from your blood counts others that "if you don't look, you don't see".

[sjdard]

My doctor said I didn't need one, as diagnosed by blood test. Most people I speak have chatted with have had one done. I think one should be done at the beginning to confirm diagnose and then every so often to see how the condition has progressed.

[jane13]

when i discuss having bone marrow biopsy my question is " could the results change my treatment or disease management?". If not then I can't see the point of having it, apart from, probably, at initial diagnosis.

[PVPVPV]

I was diagnosed with PV 2009, started treatment but there was no mention of bone marrow biopsy at any point. Then I moved to another town in 2010 with top haematology team/consultant and was asked to do a biopsy, which I had in 2011. As I remember it, I was told that it would help to establish a clearer picture of the progression of the disease if I had a biopsy to provide baseline data and then at at intervals of about ? years (I think she said two, but may have been more). It's not been mentioned since.

[mac77]

I have always had these done every two years, I was diagnosed when I was 17 so nearly 20 yrs ago, I was originally diagnosed by bloods but about 5 yrs later I started to have regular bone marrow done. I remember being told that they can see progression in the marrow before the blood and there was also mention of checking for Philadelphia chromosome??? My memory is not what it used to be! So I may have the name wrong!

I am part of the PT1 trial at Guys and St Thomas's so maybe this is why I get them done so regularly.

[Dodders]

I've not had a BMB and, when I asked why not, was told that it was deemed unnecessary unless there was a significant change in my blood test results. As with what has already been said above a BMB can be useful in establishing the progression of the condition.

[Florence1961]

Hi, I have ET and had one to confirm the diagnosis and then one recently, at my request, which is 5 years on. from diagnosis I had read somewhere that 5 yearly intervals were a good time scale and it's good to check if anything is changing at cellular level. Must admit the consultant was surprised I asked for one but he did admit it was best practice to have them done at this 5 year cycle. Haven't had the results yet so will be interesting to see if anything has changed when I have the follow-up.

[RebeccaLubitz]

Must have done to establish a baseline picture at diagnosis. I was getting them every 18 months, knowing they were using them maybe more for their own use.....to study for research than for need, which is fine with me. If we can be a help in this rare dz, I am all for it. It seems they recently changed parameters and it had been 3 yrs and I had another one. You should not wait until your blood changes because then what is the point? The changes occur in your marrow first, they are trying to catch any changes early, that is the whole point of having the BMB done. My doc is one of the experts in the field and 3 yrs was his limit.

[Eadaoin]

I have a bone marrow biopsy every 2 years. Was diagnosed in 1998 with ET and Mylodysplasia so am checked regularly for fibrosis. Last time it was done swiftly and with slightly less pain than ever before. I believe they are now using a new style of needle. Still don't look forward to the experience and am glad when it is over.

[Mazcd Partner MPNVoice]

I have had some advice from Prof Harrison regarding bone marrow biopsies and she has replied - Usually they are needed for diagnosis, then the option is just to have them when there is evidence of a problem or to have them for surveillance. So this will depend on individual patient circumstance and preference.

Maz