Links to latest research : I thought it would be... - MPN Voice

MPN Voice

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Links to latest research

Paul123456 profile image
19 Replies

I thought it would be easier if I grouped all the links I’ve posted into one thread. Imo it’s all encouraging and uplifting. I’ve run out of time to find the link re Graft Host rejection advances, will do so later. Best Paul

(Hope all the links open!)

Replacing Chemo/Radiation in SCT’s

med.stanford.edu/news/all-n...

Metformin Trial

nature.com/articles/s41419-...

Pros and cons of Interferon

patientpower.info/video/the...

Possible new breakthrough drug, now starting Phase 2 Trials - RG7388

cancernetwork.com/ash-stree...

Fascinating drug comparison table

Published by Dr. Hasselbalch earlier this year summarizes the differences between interferon, hydroxyurea, Jakafi and anagrelide in regard to “impact upon clinical, biochemical, molecular, cytogenetic and bone marrow MPN markers and in regard to discontinuation rates due to toxicity and resistance to therapy:

imagizer.imageshack.us/a/im... <imagizer.imageshack.us/a/im...

Ropeginterferon after two year trial versus HU

Hopefully will be available next year and looks drug of choice

onclive.com/web-exclusives/...

Uplifting Webcast, worth watching

healthunlocked.com/api/redi...

Another good webcast re reducing fibrosis and slowing progression

patientpower.info/video/are...

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Paul123456
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19 Replies
Jasbak22 profile image
Jasbak22

Good to keep informed. I sometimes feel we’re better informed than some of our Haems. Thanks.

Rachelthepotter profile image
Rachelthepotter

Dear Paul

Thank you enormously for making the recent research accessible to us. Very timely for me, as I’ve got an appointment at Guys tomorrow to talk about tissue typing for possible future sct. The metformin especially looks like a worthwhile drug to try.

Regards

Rachel

Aime profile image
Aime

Thank you for all your research and time Paul. One day soon I’m sure they’ll find a cure. Kindest regards Aime

mhos61 profile image
mhos61

Thanks Paul for all the links and your continued efforts to inform and update us.

Mary x

Indigo42916 profile image
Indigo42916

Thanks so much Paul!

pj1963 profile image
pj1963

Much appreciated, Paul.

Paula

JaynieQ profile image
JaynieQ

Thanks again Paul for a very positive and cheering post!

MPort profile image
MPort

Thank you Paul. This is very helpful.

Mairead

hall2 profile image
hall2

Hi Paul The patient power link is coming up with an error message I'm afraid.

Paul123456 profile image
Paul123456

Thanks hall

Hope this works

patientpower.info/video/are...

Meatloaf9 profile image
Meatloaf9

Thank you Paul for all you do to keep us informed. I think a breakthrough is just around the corner.

Thanks again

Stephen399b profile image
Stephen399b

Thanks Paul

I had found some of these on the MPN-NET site, which is like health unlocked but USA based. Can be a bit more academic but useful. We all share the same condition(s) so no barriers!

Rachelthepotter profile image
Rachelthepotter

Hi Paul. I was at Guys yesterday and asked about metformin. Unfortunately the sct consultant I was scheduled to see ( to whom I’d sent the Nature article on metformin) was ill, and Prof Harrison didn’t know anything much about it . Not very helpful. So maybe next time I see the team someone will have got up to speed and can think about prescribing it for me alongside the ruxolitnib.

Al the best

jeanr profile image
jeanr

Thanks Paul --I just saw this v helpful. Jean

Thank you Paul. Your summary is helping us all.

katiewalsh profile image
katiewalsh

Hi Paul,

I’m hoping, given your breadth of knowledge, that you might know whether muscle soreness resulting from pressure has been linked as a side effect of Hydroxyurea or a symptom of MPN’s. The specialists say I may be ET or post ET, PreMF, and I am jak2 +. I currently take 500 mg HU 5 days a week & 1,000 mg 2 times a week. Have you seen anything about this type of problem? It’s just in my hands & feet and isn’t Arthritis. It’s not in my joints. I’d appreciate any information you can provide. Thanks for all you do for us.

Katie Walsh

katiewalsh profile image
katiewalsh

Hi Paul, I forgot to mention that I’m also on Eliquis blood thinner.

Katie

Paul123456 profile image
Paul123456

Katie

I’m afraid I don’t know but your symptoms sound more down to poor circulation? Hence could still be ET. There seem to be a myriad of symptoms for MPNs and to some extent more individual related than ET/PV/MF related. We all react differently and my best guess is that most of us have a hybrid MPN since overlap. Say mainly one, eg ET but with a bit of PV thrown in.

Ultimately we are all treading the same path towards MF but the issue is speed of progression. You might have early MF (when was your last BMB?) but it could be 20 years before this develops into full blown MF. If you are worried, you should qualify this with your dr. Are you actually early MF or simply slowly trending that way?

The big mystery for me is why some of us have symptoms when our bloods are well controlled. I assume you are staying well hydrated and eating good blood thinning diet - oily fish, garlic, red onions, turmeric etc. Better discuss with your dr before taking actual Omega 3, garlic, turmeric supplements.

Best

Paul

katiewalsh profile image
katiewalsh

Thanks Paul. I really appreciate your thoughtful response. My specialist, Dr Raji Komrojki at Moffitt, says it doesn’t matter so much what I have at this time because given my lab results the treatment is the same. Be well & thanks again. Keep up the great work! Katie

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