very informative talk on bone marrow biopsy - MPN Voice

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very informative talk on bone marrow biopsy

Aldebaran25 profile image
12 Replies

I found this talk to be very informative; I wish it had been filmed to a better standard and that the slides were visible for longer, but Dr. Wendy Erber is excellent at explaining the terms and the details of bone marrow .

youtu.be/Gz1q34Wfm_k

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Aldebaran25 profile image
Aldebaran25
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EPguy profile image
EPguy

This is a really good link. You're right the production is frustrating.

She strongly recommends BMB at Dx for all suspected MPN.

One new item to me is, in addition to fibrosis, there can be excess hard bone overgrowth (osteo sclerosis) in later stages. Both of these take up room and interfere with blood production.

I have an interest in the subject of cellularity. She makes clear the "cells" are the blood forming entities, not the actual formed blood cells. In PV there is excess of all three types of these (Red, White and PLT forming) She uses the formal word megakaryocytes for PLT forming cells, but only "Red and White forming cells" for the other two. All 3 are increased in PV.

In ET megakaryocytes are always increased but the other two types can be "increased a little" with Jak2 ET. In ET "any increase in the cellularity (I assume with the above exception) is because of an increase is the number of megakaryocytes.

She can confirm ET if she sees just 3 oversized mega's with a complex nucleus.

mhos61 profile image
mhos61

Thanks for this very easy to understand presentation on the various features of the bone marrow in MPNs.

What a lovely lady too. We all need a ‘Wendy’ on our team!

I also found this.

leukaemia.org.au/stories/a-...

DottyDaisy profile image
DottyDaisy in reply tomhos61

Yes, I agree about the slides. If I thought I would actually take the time to study them, I would try and contact her for a copy of the original file, but I am old enough to know my limitations.

That article you found about Professor Erber is amazing. Me being me, I didn't get to the end of it, but a big takeaway for me personally was her comment:

.... if you don’t do a bone marrow test, then you are not entered into the cancer database as having an MPN .....

Up till now, I have been perfectly content not to have a BMB, nor to have confirmation of which MPN I actually have, as I would still be on Peg, either way.

However, I was wondering whether we have a similar cancer database in the UK, or do you in the US, with that criterion? Or elsewhere?

And what would be the benefit of being on such a list?

EPguy profile image
EPguy in reply toDottyDaisy

It's possible to press pause to study the charts. Unfortunately this does not allow the audio discussion of them to play. And some charts she discussed never showed at all.

As she says, BMB is good in general to have a reference, if we're on IFN there is possibility of improvement to marrow. But that is knowable only if there is a BMB near Dx.

It's strange that one would been a BMB to be called cancer. I would think any formal Dx of MPN, esp with a mutation found, should be enough.

Andrew8 profile image
Andrew8

This is the most informative and interesting video I have ever seen on ET and MF, and will give me the ability to discuss my MF, with my Haemo and hopefully give me an idea of how my MF will progress. Many thanks for posting this.

Grendall profile image
Grendall

a question then!

With this being in Australia, she insists that we should all have a BMB and it’s our right, whst are the chances of us in the UK under NHS trying to tell out Heam we want/need one? I feel the only way that would happen is if we paid privately but even then we would probably have to have a referral from the NHS…. Interesting 🤔

Aldebaran25 profile image
Aldebaran25

I am in the UK and had one as part of the diagnosis

Grendall profile image
Grendall in reply toAldebaran25

I did mention at my last appointment, would they be doing a BMB at any point but he looked at me rather puzzled and just said no…. 🤷‍♀️

Aldebaran25 profile image
Aldebaran25 in reply toGrendall

Are you being treated by a consultant haematologist specialised in MPN?

Grendall profile image
Grendall in reply toAldebaran25

I emailed my ‘specialist nurses’ back in the beginning to check this and this sentence is part of the reply….

. All of our Consultants in our MPD clinic are specialists in myeloproliferative disorders, including Essential thrombocythemia.

Therefore I cant really challenge that can I?

EPguy profile image
EPguy in reply toGrendall

They do make it hard to argue against since the clinic is defined as MP(N-D). But it does seem they are not so special if there is such an apparent total blank space in their policy of BMB. There is a change going on with IFN getting more acceptance, and its ability to sometimes reverse marrow, a BMB is required to know of this progress.

Cityreach profile image
Cityreach

thankyou just watched as just had a BMB last week and gave consultant next week hoping results will be back

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