MPN Voice

To BMB or not? And can I request one?

Hi everyone.

I was diagnosed in February this year after extensive blood tests, following a massive post op bleed. I'd had a knee arthroscopy due to a badly torn cartilage.

My consultant is unsure as to whether I have ET or PV, she thinks time will tell but I'm beginning to think I should ask for a bone marrow biopsy? My red cell count is 44 but she won't start venesection until it reaches 45, but again I've read that it's 42 in women and 45 in men. I'm suffering from extreme fatigue and shortness of breath, especially during the excessive heat recently. I've been a health fanatic my entire adult life and was prior to this in optimum health.

Best wishes

Megan

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Will the BMB change anything about your treatment? If not, why bother?

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Hi Megan,

By red cell count I assume you mean hematocrit, hct. I have a venesection when mine reaches .45. I am happy with this although some prefer theirs to be lower. I have PV with high platelets, so a bit of ET as well. Diagnosed 11 years ago and only had a BMB 4 years ago before starting Hydroxy. I agree with Jane's comments. Unless it will change your treatment it's not necessary.

Best wishes

Judy

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Thank you. I did indeed mean hematocrit.

That sets my mind at rest. I suppose it's possible that it is actually ET & PV as platelets are also raised? This seems to be the case with many on here. I'm JAK2 positive.

Thanks Jane and Judy.

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Hi Megan,

Do you know if you are positive for one of gene mutations (JAK2, CALR, MPL) as that could help in determining which MPN you have without doing a BMB?

Best wishes

Zlata

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Hi Zlata.

Yes I'm JAK2 positive with raised platelets and hematocrit of 44.

Megan

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Had abone marrow in March, would rather give birth than have to go through it again!! Didn't changecanything to my JAK2 diagnosis, revealed smouldering myeloma though so created a while new level of worry but nothing that could be done about it.

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Hi. I'm under the team at Guy's and the haematocrit magic number for venesection appears to be 45 regardless of gender. I have PV but with high platelets too (currently around 1200). Maybe be guided by your haematologist as to the BMB. I've had two in the past four years. It did appear to be a critical part of the initial diagnosis. Can't say they were the most enjoyable things I've ever done(!) and the second one was a bit of a tussle but all in all neither was awful or traumatic.

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That's really useful. I'll talk to my haem in a few weeks at my next appointment.

Thank you x

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Good luck. On balance I would have a BMB. As others have said you know for sure what you are dealing with (my second BMB confirmed a change in diagnosis) and it provides an important baseline to charter changes. Certainly the two leading haematologists I have seen (one referred me on to Guy's) both thought it an important diagnostic tool.

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Hi Megan, my Haematologist kept using the word probably,even though I am taking hydroxy, so I said, I can't take this on a probably! And insisted on a BMB and got one. X

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Okay, that's where I'm at. I feel I need a definite diagnosis at this moment in time. At least that way I know what I'm fighting.

Thank you for your response. X

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My understanding is that a bmb gives a baseline reading of your personal condition as it’s so unique to each person. I’m having one in September after being diagnosed last November. Best of luck.

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Yes, that's what I thought. I was reading an article by an American MPN consultant, he deemed it a necessity for all newly diagnosed to have a BMB for that very reason.

Thank you x

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Hi Megan,

If it helps, .. This is the reply from Prof Harrison when Maz asked her 5 months ago.

And this is the answer, from Professor Claire Harrison, Guy’s and St Thomas’ Hospital, London.

Confusing information and some different opinions.

When a diagnosis of a MPN is made the team use specific national/international diagnostic criteria. Some of these mandate a bone marrow biopsy and some do not, some only mandate a biopsy in specific circumstances.

Aside from making an accurate diagnosis sometimes having a bone marrow done is a useful test for future information even if not needed for a diagnosis.

Sometimes BMBs are performed during the course of disease usually if there is a change in disease features, sometimes before a change in treatment, sometimes but not often to monitor a treatment, and lastly sometimes before a clinical trial.

Best wishes

Judy

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It's the future information bit that interested me. I read an article on Patient Power which indicated that BMBs can help depict how the disease will progress in that individual. Also I don't like the indecisiveness of not knowing which MPN I have.

Thanks for the info. X

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