Guidelines for best practice for diagnosis and treatment of MPNs

[Rachelthepotter]

Hi

I may not have made it clear that this link

nccn.org/patients/guideline...

is to the state of the art guidelines for what a patient should expect to be considered by a competent haematology team for diagnosis and treatment of MPNs . Nice pics, too. I never was quite sure where my spleen was....

Best regards

Rachel

PS. The NCCN is a consortium of the major MPN centres in the USA.

[stillkicking]

Thanks for the link and also the personalized risk calculator on your recent post, both very interesting. Encouraging to see the evident progress in identifying the driver genes, both primary and secondary, and rather fascinating playing with various combinations! I must confess to also being just a bit sad about things too in that all the "goodies" on offer of tests and knowledge seem so lacking where I am. My hematologist has the attitude that is not worth testing further than the JAK2 and CALR tests that I had (and was negative to) in that (in her words) "the treatment is the same and the tests expensive". I must say that the more I read about the interesting work that has been done with understanding the genes involved, the more I wish that I could have further tests and my MPN be better understood. Maybe one day!

Best Wishes,

Px

[Rachelthepotter in reply to stillkicking]

Hi Peter

And I’m envious of your monthly routine blood tests with results given to you with no hassle and what sounds like some decent primary care. Here in the UK NHS we seem to do the difficult expensive things, but so many of the basic, easy, obvious things aren’t happening, as posts on this forum show.

I’ve found the whole experience frightening and infuriating. And it needn’t have been so bad.

Still, I hang on in there, and I’m going to West Dean College for a 5 day pottery workshop before Christmas. I’m still aiming to do as much of what I would have done in my retirement, without getting silly about it.

All the best

Rachel

[Ovingite]

Rachel,

Thank you so much for this. It is an extremely helpful guide to MPNs and answers so many questions. Where would we be without the internet?

John

[katiewalsh]

Hi. Thank you for bringing these to our attention & making it simple to access them. I admire your technical knowledge. The predictor site just confused me but the NCCN is great! Be well & enjoy yr pottery. I used to sculpt with clay. I loved it & miss it but my serious asthma precludes that treat anymore. Enjoy for me too! Katie

[Rachelthepotter in reply to katiewalsh]

Hi Katie

Thank you for your kind words. No real tech knowledge, just a strong desire to get to the bottom of things. Which doesn't always endear me to the medical profession here in the UK.

As for the calculator, I’m asking my haematologist if he’ll plug in the numbers for me next time I see him.

I feel sad that now I won’t be able to have a third age career, after retiring from the day job , as an enthusiastic amateur potter: I do enjoy it, and my fellow potters are a great bunch of people.

All the best

Rachel

[katiewalsh]

Yes, I too mourn what I’d hoped to be able to do at this stage of life (I’m 67) but also recognize how incredibly lucky I am not to have a stage 4 cancer (breast, lung, etc.) that will kill me in 6 months.

Can you do pottery at all anymore? Katie

[Rachelthepotter]

Yes, I can, but I find that I get bone pain after