Bone marrow biopsy done

[Kimhock]

I had my biopsy yesterday, this after 3 months of different blood tests - all which are negative.

The biopsy was definitely unpleasant, the worst being when they took the actual marrow - its a weird sensation. The staff at Torbay Hospital were amazing and this helped what could have been a very unpleasant experience.

My hematologist has assured me results should be back in a week, so fingers crossed.

[piggie50]

Hi Kim,

I hope the BMB gives you some answers, at least then you will know what you're dealing with.

Judy ( also a Devonite) x

[Mazcd Partner MPNVoice]

Hi Kim, hope you are feeling ok today and not too bruised, glad to hear that the staff at Torbay were lovely. Maz

[Loubprv Volunteer]

For anyone about to have a BMB my experience was not at all unpleasant.

I have to admit to being very very concerned beforehand, having read all sorts of frightening reports, and I'm not a " scardy cat" I can assure you!

I was however, extremely lucky to have mine at the wonderful Guys hospital in London.

I had a SUPERB young haematologist ( can't ulogise enough about him) who "said, I'm going to fill your hip with lidocaine - and I do use quite a lot" explained each step, showed me all the needles and assured me that I wouldn't feel any pain, just quite a firm pushing motion when the marrow was being extracted.

I can only think that it very much depends on the hospital you attend.

If you're scheduled for a BMB:

Ask questions of your nurse/ haematologist beforehand, do you use lidocaine? How much do you use? If they say we don't use anything, ( and it happens) then get up and leave, and find somewhere else.

Yes, it's a strange sensation but absolutely nothing to be worried about, and certainly not the painful experience that many people make it out to be. (Not referring to you here Kim)

Louise

x

[Hidden]

Im wondering why at this present time i have never had a bmb , could it be that blood test showed up poss for jak2 gene i wonder , i have had ET over 3 year now glad to hear you ladies both attend a great hospital , it does help in these times of cutbacks on the NHS best wishes Holly x

[piggie50 in reply to Hidden]

Hi Holly,

I have PV, jac2 and I didn't have a BMB for 9 years, I only had one then just before starting hydroxy as my heam said he wanted a baseline for the future.

Best regards

Judy

[Superwoman]

Hi Holly,

I have had ET JAK 2 positive for well over three years now and never had a Bone marrow biopsy, so like you think it could be to do with the JAK 2 but not sure.

Jean

[mhos61]

I haven't had a bmb and am also ET jak2+.

Mary

[Hannah52]

I have E T & JAK2+ and have never had a BMB so I asked my doctor at Barnet hospital why and she said because of the JAK2+ blood test I did not need one.

[James1731]

Hi,

I had a bmb and blood test done but my last visit to the hospital I was advised that they couldn't get enough of the bone(i wimped out) so they are not able to confirm if I have secondary polycythemia or polycythemia vera.

I've had two venusections within two weeks and have a follow up in Jan to discuss another bmb which they said will be done under a general this time round.

[Kimhock in reply to James1731]

Good luck James - stay strong

[Paul42]

If your blood counts are indicitive of PV or ET and you are positive for one of the affected genes i.e Jak2/CALR then its no longer necessary to have BMB.

I had one but that was because of suspected MF, it did show some scarring but not enough to be MF.

[rubyrubyruby]

I have PV, JAK2+, diagnosed almost 4 years ago, and have had 2 BMB. Mine have been done to monitor scarring on bone marrow. I have been told I will need more in the future!!

[Helpatlast]

Sorry Kim you have had a BMB and hoping you are now recouping not too bruised and sore as it can be a bit painful on the site for some days after but don't worry that eases up soon. It will however give your consultant a good picture of what's going on so will be worth it and hopefully the door then to some treatment to help you feel easier. All the best.

[Kimhock]

Thanks Helpatlast

The discomfort has gone, all that remains is the indignation of the invasion lol!

I certainly hope they do find an answer for me, I really need to get this sorted and move on with my life - I feel like I am currently stuck in limbo and its driving me crazy.

[mark382]

I was diagnosed with PV 8 years ago and am JAK2 negative. I've never had a bmb and it has never been suggested and listening to others who have had bad experiences I'm certainly not going to to suggest it.

Had 3 monthly clinic yesterday and having a venesection (or drain down as I call it) on Monday. Managing on venesection and aspirin.

Happy Christmas to all and let's hope for a good 2017

[forwardocho]

Good Luck Kim

I hope you get good results.

Angela x

[Bittebitt]

I have cmml. Had my sixth bone marrow biopsy in 1 1/2 years time taken today. It is a little bit unpleasant, but not really painful.

The reason for why I have taken all these biopsies, is that it has been very difficult to find the correct diagnosis. And now, I have serious thrombocythopenia and I may have to go through a RIC allo stem cell transplant.

But my message is: Not all of us find the bmb to be so bad! Just tell if you are not anesthetized well enough! Of course, you will feel the stinging when the anesthesia is being done, but not when the aspiration needle is inserted. That is, if the anesthesia is done properly. But you will feel some pressure, and some slight paim when the bone marrow aspiration is being done. And you might be a little bit sore the first day after.

[Kimhock]

Finally the results are in!

I saw the doc yesterday and she has explained it to me as follows:

All blood tests and BMB were negative, however as my platelet count averages at the 700 mark so they will be diagnosing me as having ET (Jak2/CalR negative) and treat me accordingly.

Treatment is 75mg low dose aspirin daily and quarterly blood tests.

She has further warned me that a possibility exists that my condition may change and that is why they will be keeping an eye on my blood counts.

She has told me to ensure a healthy diet, to keep hydrated and to exercise (already on a mission with all of these things anyways). I also need to minimize my nicotine intake - I quit smoking cigarettes 3 years ago but do make use of an electronic cigarette.

All in all this diagnosis was my best case scenario and I am very relieved at the outcome.

Thanks to everyone for their continued posting on this forum, it is a great help to us all.

Wishing you all a Blessed Christmas and fantastic new year

[Whatsisname]

Hi Kim,

I am also down in the far West of England and have had two bone biopsies now confirming my JAK2 + and marrow status, at the beginning and end of a trial. Neither were pleasant experiences and did make my eyes water at bit. I was sore for a few days afterwards, but after that only residual bruising. I got the results on my next clinic visit and that confirmed the original diagnosis of PV. I hope your results confirm your negative status but I am sure the Haematology staff will be very reassuring and helpful with management afterwards, as they are in my neck of the woods.

Terry