Questions

[Blaablaablaa]

At last, I have just a week to go until my appointment with my haematologist, when I will get the results of the bone marrow biopsy which I had four weeks ago. (I can walk without limping now!) It will be eight weeks since my last consultation with the haemo, when I received my initial diagnosis of ET - a long time, and in one way I can't wait but at the same time I approach it with some trepidation.

The general advice on here is to have a list of questions. Naturally, I have a few questions ready, but I would like to ask you good people: If you were me, what would you ask?

[john0084]

symptoms that effect your quality of life should be addressed.

[Blaablaablaa in reply to john0084]

Thanks John, that's a good start - fatigue being the big one.

[friendofpiglet in reply to Blaablaablaa]

Indeed fatigue is the big one. I don't think I'm alone in experiencing dismissal by haematologists of fatigue as an issue. ("your counts are fine, you must be feeling OK"). Don't let them do it! you are the one with the fatigue, not them.

Andy

[Blaablaablaa in reply to friendofpiglet]

Absolutely! Why do they do it? Thanks for your reply, Andy.

[friendofpiglet in reply to Blaablaablaa]

I think it's down to 'don't know how to treat it, so best ignore it'.

I remember when ME/CFS was called Yuppie flu!

[Cja1956 in reply to friendofpiglet]

That’s exactly the reason I left my hematologist of 11 years. I developed anemia this year and he said to me “I don’t know why you’re so fatigued all the time”. I now have a new hematologist.

[Blaablaablaa in reply to Cja1956]

That's awful. Glad you've moved on, Cja.

[MCW22]

Ask for a print out of the report.

Carol.

[Blaablaablaa in reply to MCW22]

Thanks, yes, that's a good one. On my list now!

[hunter5582]

Questions.

1. Are you JAK2+? What other gene mutations tested/noted?

2. If JAK2+, what is your mutant allele burden?

3. Ask for a description of the morphology of the bone marrow, not just the diagnosis. Have the doc explain what this means. Include the degree of fibrosis present (it should be low).

4. Bone morrow testing is not required for the diagnosis of ET per the British Committee of Standards in Haematology, though the WHO does recommend it. here is one bit of information about this ncbi.nlm.nih.gov/pmc/articl... . Suggest you head into this appointment with at least a basic understanding of what the results actually mean. Any time spent looking up the terms used to describe how your bone marrow works and affects your MPN will be time well spent.

I am sorry to hear you are having to wait so long to get your results. I find that sort of thing to be really appalling, but all too common. If the doc is not a true MPN Specialist, suggest you consult with one who is. Here is a list of patient-recommended MPN-expert docs mpnforum.com/list-hem./ . If you have not already asked, I would ask the doc how many MPN cases he/she has treated. Many docs really do not have the KSAs to provide you with optimized individualized treatment. If the doc cops an attitude at any of your questions - fire the doc. He/she works for you - not the other way around.

Hope you get good news soon.

[Blaablaablaa in reply to hunter5582]

Wow, thanks for all that, hunter.

Yes I am ET JAK2 - that was diagnosed through blood tests before the BMB. Further than that I'm waiting to hear. I shall ask the questions you suggested (at the risk of appearing more knowledgeable than I really am!). And thanks for the links - I'll look them up when I have a bit more time. All much appreciated. x