2022 NCCN Guidelines for MPNs

[hunter5582]

Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative Neoplasms. Nice summary on a number of MPN topics written for patients. Great for someone new to MPNs, and a good review for all.

nccn.org/patients/guideline...

[MarybellM]

That’s a brilliant resource. Well explained with easy to follow layout. Thank you for sharing it.

[LittleLuna]

Thanks for sharing. This is great reading.

[DottyDaisy]

Thank you Hunter. Saved for future study

[April-May]

That’s the most realistic, comprehensive report I’ve seen. Thank you, as always, for being such a fountain of knowledge

[Mostew]

Clearest info I’ve read. Thanks for posting Hunter

[Booagain]

Thank you Hunter. Very useful and informative.

[Deece]

An excellent resource, thanks for sharing

[Smudger0122]

Excellent source of information.Thanks hunter

[Rachelthepotter]

Thanks , Hunter. Very useful guide: it looks as tho all the genetic etc. testing can be done on blood samples and bmb only needed for fibrosis assay. Its hard work here ( Surrey, NHS) even getting hold of my own blood results, but I’ll see if I can have a sensible conversation with a haematologist about whether I’d feel better , and be less prone to skin cancers , with one of the newer JAK inhibitors. Three to chose from now. However, there is no doubt that ruxolitinib does seem to have a life extending effect. When I was diagnosed and started on Ruxolitinib in 2017, I think it was, median survival for my level of disease was 3 yrs. I’m five years on, and although I’m needing transfusions to reduce fatigue, doing OK.

I found the explanation of the microvascular effects in the patient guide extremely helpful – I often get tingling and numbness which comes and goes in one arm and leg. Also blurred vision and odd visual effects.

So far I’ve refused to get itching.

Take care, and keep the info flowing.

Rachelthepotter ( who acquired the new handle of Gypsy123 without meaning to)

[hunter5582 in reply to Rachelthepotter]

It is interesting that the microvascular issues tend to get little attention when they are some of the most troublesome issues for some of us. It is important to understand what is going on so we can deal better with it.

It is really good news that the treatment options are expanding. Additional JAK inhibitors, LSD1 inhibitors, BET inhibitors, interferons - all make for a more diverse set ot treatment options.

This was all reviewed at the April 15 MPN Conference. You might be interested in learning about all 4 of the JAK inhibitor options.

Ruxolitinib - standard 1st line tx for MF

Fedratinib - for proliferative MF when RUX no effective

Pacritinib - for cytopenic MF or 2nd line proliferative MF

Momelotinib (stage 3 clinical trial) - for Anemic MF

All the best.

[ciye]

Thank you for sharing. It was very informative.

[champ30]

Thank you Hunter.... very informative.

[azaelea]

Thank you for sharing Hunter. Very informative and easy to understand. I’ll save for future reference. Best wishes Fran

[Bluesloth1]

This is really useful and very clear. Handy for family and friends to understand as well as patients. Thank you.

[CLONDARA]

Thank you Hunter. It came, for me, at the right time. A year after my diagnosis of ET I am ready and understand the information contained within.

[AndyKay]

Thank you for sharing. Looks like some good resources.

[Scaredy_cat]

This is a brilliant publication. It would be useful for all mpners

[Buddhability]

That is very comprehensive! Thanks Hunter, cannot thank you enough for your relentless efforts that constantly enlighten us. 🙏

[Plavers]

Fantastic, really clear explanations and great information. Makes me a bit dissatisfied by the treatment I've received so far, particularly about such things as itching which I have mentioned many times but it has never been accepted that it has anything to do with ET. This document give me something I can show to back up my claims. Thanks so much Hunter - I'm not going crazy after all,

[hunter5582 in reply to Plavers]

Well the itching can make you crazy - not the other way around. Of course it is part of ET and other MPNs. That is common MPN knowledge. Perhaps it is time to consult with a MPN specialist who understands the wide variety of MPN symptoms. Just in case you have not seen it, here is a list. mpnforum.com/list-hem./

[mhos61]

Thanks.

I have bookmarked this link to look at in more depth when I have more time. However, a brief overview this morning of the ‘microvascular’ ‘Splenomegaly’ ‘bone pain’ etc in MPN reveals the simplest detailed explanation I’ve seen of what is actually occurring in the ‘disease’ to cause these symptoms.

Sometimes we just need simple!