2022 NCCN Guidelines for MPNs: Another good... - MPN Voice

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2022 NCCN Guidelines for MPNs

hunter5582 profile image
21 Replies

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...

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21 Replies
MarybellM profile image
MarybellM

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

LittleLuna profile image
LittleLuna

Thanks for sharing. This is great reading.

DottyDaisy profile image
DottyDaisy

Thank you Hunter. Saved for future study

April-May profile image
April-May

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

Mostew profile image
Mostew

Clearest info I’ve read. Thanks for posting Hunter

Booagain profile image
Booagain

Thank you Hunter. Very useful and informative.

Deece profile image
Deece

An excellent resource, thanks for sharing

Smudger0122 profile image
Smudger0122

Excellent source of information.Thanks hunter

Rachelthepotter profile image
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 profile image
hunter5582 in reply toRachelthepotter

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 profile image
ciye

Thank you for sharing. It was very informative.

champ30 profile image
champ30

Thank you Hunter.... very informative.

azaelea profile image
azaelea

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

Bluesloth1 profile image
Bluesloth1

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

CLONDARA profile image
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 profile image
AndyKay

Thank you for sharing. Looks like some good resources.

Scaredy_cat profile image
Scaredy_cat

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

Buddhability profile image
Buddhability

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

Plavers profile image
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 profile image
hunter5582 in reply toPlavers

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 profile image
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!

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hunter5582 profile image

Wow, just happened across this comprehensive and impressive resource for anyone new on the road re ET, PV or MF. Thanks Chicago!

Sure beats those pathetic booklets, pamphlets or directions to sites made for juveniles, or beyond...
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