I'm newly diagnosed with ET JAK2+, 600-700 platelet count, taking aspirin. Getting my head around it all.
Is there an urgency to get biopsy or see how I am in the next few months then decide. Doctor says no urgency but if I want to now then can arrange. I'm just not sure.
Hi,
In recent years its become less important to have a BMB. Really following the discovery of gene mutations that can indicate an MPN such as Jak2 and CALR.
If you have one of the mutations and blood counts point to an MPN then a biopsy will reveal little more to assist with diagnosis and a treatment plan.
Paul
Thank you. Great to know
Hi Love2walk2,
Not sure if there is an urgency but I think the bone marrow biopsy helps to see the state of your bone marrow ( the blood component making machine) and also helps to determine what long term treatment you need to control your platelet count.
I had my bone marrow biopsy three weeks after diagnosis. My platelet count was in the same range as yours. I was in the end glad my biopsy was done when it was as I knew what I was facing without the added worry of not knowing.
Give yourself time to come to terms with your diagnosis, then have your biopsy when the edge has come off it a little.
Take care!
Thank you so much. I think I will wait for my next appointment which is coming up soon to discuss again.
Different docs have different takes on this. Some do it routinely at the initial MPN diagnosis. Others do not feel it is necessary when the diagnosis is clear. A BMB will determine the level of fibrosis present and other details about bone marrow morphology. I have been 30 years with a MPN and never had one. Several hematologists, including two MPN Specialists said it was not needed, We will eventually do a BMB when there is a change in the disease state, thus a reason to do one.
My take would be there is no urgency unless there is a question that must be answered now. Ultimately it is up to you to decide.
A BMB provides a baseline view of the state of your bone marrow so that comparisons can be made in the future. Having a baseline view is common and important in a number of medical issues - not just MPNs.
Thank you. Put my mind at rest to not feel the need to get it done immediately
Hi - really depends on you and your doc - as Hunter mentioned there are various take son this. In my particular case my specialist requested a BMB to: 1) help confirm diagnosis (ET vs masked PV) and 2) to establish a baseline for comparison later if things change. By far not my favorite procedure but ultimately glad I did it and have the diagnosis confirmation and the baseline.
Me , I’d go for a bmb , just to check if you have MF or not. I got diagnosed that way. Take care. Helen
Thank you. My next appointment is soon. Will discuss with them again and decide.
I was never offered one. I was told during my first blood test that if they found the Jak2 mutation I wouldn’t need one. I have often worried about it because I think I had PV a long time before it was diagnosed so I wonder what state my bone marrow is in. At the moment I would definitely stay away from hospitals unless absolutely necessary.
Ditto. About 20-30 years before! I have never had a BMB or been offered. I often wonder if I am PV rather than ET and JAK2+ because I seem to have same of the symptoms but as the prf says my bloods are good and the Pegasys is doing it's job well, sees no reason why anything should be done to establish either way.
I had one during initial diagnosis. I had a second one years later, they used the first to compare progression. The specialist I saw at MD Anderson (where I visited for a second opinion) said he recommends a bmb. He also used the first bmb to verify progression. The procedure takes like 5-10 minutes, and worth it, in my opinion. It took me many years to realize, but it helped when I required the second one. Best of luck, whatever decision you make.
Thank you. Something to think about.
Despite being quite symptomless (i.e. with relatively few problems) I was told right at the time of PV diagnosis in 2019 by two separate haematology teams in two different countries (UK and Italy) that having an early BMB is very useful. It offers a starting point to better assess in the future how the disease is progressing.
Thank you. Good to know.
I would have a BMB to get proper diagnose and treatment.
I think it is probably a good idea to establish a baseline to compare in the future for progression. I think it is probably the best chance to dx prefibrotic mf from et as well it may help to dx masked pv. Personally I would have it in case there is any fibrosis found I would want to be treated with interferon as it has been reported to possibly reverse early bone marrow fibrosis. However, I had one within 2 months (3 yrs ago) of dx and it was read by two different pathologists and both said it was ET and I am now told that it was likely PV from the start which is now evident. I had a subnormal epo level initially but my other counts did not support a dx of PV at that time. I would at least make sure they check your epo level. Best of luck going forward.
Thank you for replying
I had a BMB done earlier this year as my blood results were showing that the JAK 2 was negative, but the Consultant told me that in many cases it will come back negative from the blood results but very often shows up positive on the BMB which is what happened in my case. It also reassured me that very thankfully the rest of the bone marrow was ok. It willI am sure be good to think over all the advice and aspects offered here, and disucss it again with your doctor at your next appointment.
Like you I am recently diagnosed with ET JAK2+ (platelets <600). I spoke with two different hematologists who said BMB was optional/non-urgent but both recommended as a 'baseline' to monitor progress. Also some people diagnosed with ET are rediagnosed as 'pre-fibrotic MF' after a BMB (the other signs and symptoms can be very similar so BMB required to show if any scarring on bone marrow). I had mine done a couple of weeks ago, and awaiting results. I have to say BMB wasn't pleasant but it was quick- you just go as a day patient and can make oyur own way home. I decided I'd rather know what I am dealing with to be monitored and potentially included in relevant clinical trials/treatments... Good luck, whatever you decide.
Hope all is well and good for you when you get your result.
Thank you for replying and wishing you well with your results.
Thanks!
Bone marrow biopsy results. 
ET and bone marrow biopsy 
MPNs and bone marrow biopsy
Is bone marrow biopsy necessary?
Bone marrow biopsy done
