Links to latest research

[Paul123456]

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...

[Jasbak22]

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

[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]

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

[mhos61]

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

Mary x

[Indigo42916]

Thanks so much Paul!

[pj1963]

Much appreciated, Paul.

Paula

[JaynieQ]

Thanks again Paul for a very positive and cheering post!

[MPort]

Thank you Paul. This is very helpful.

Mairead

[hall2]

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

[Paul123456]

Thanks hall

Hope this works

patientpower.info/video/are...

[Meatloaf9]

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

Thanks again

[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]

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]

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

[Hidden]

Thank you Paul. Your summary is helping us all.

[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]

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

Katie

[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]

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