Encouraging video re slowing MF: Concludes by... - MPN Voice

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Encouraging video re slowing MF

Paul123456 profile image
7 Replies

Concludes by saying no obvious cure at the moment but the tools are in sight so that 95% of MF patients can lead normal life with normal life span. Expecting to delay/alleviate progression with each set of new drugs buying another 7 years.

patientpower.info/video/exp...

Will be watching out for the Bcl-xl trial results. And the Ruxo combo trials encouraging.

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Paul123456 profile image
Paul123456
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7 Replies
mammared profile image
mammared

Thank you Paul.

Meatloaf9 profile image
Meatloaf9

Thank you Paul for keeping us all informed. I assume that a very high percentage of everyone on this forum will face MF at some point in our journey with a mpn. Thank you again.

ihavegotet profile image
ihavegotet

Very timely post Paul. I just got diagmosed with stage 1 MF and have been super depressed about it. This gives me much hope!

Paul123456 profile image
Paul123456 in reply toihavegotet

So sorry to hear that you have been so depressed. Have you been tested for genetic mutations and what drug are you taking? Has your Hem given you a prognosis?

Hopefully you should have plenty of time to wait for the results from some of these current trials.

Would you consider a SCT worst case?

Best wishes Paul

ihavegotet profile image
ihavegotet in reply toPaul123456

I am jak 2 positive and ASXL positive. I am on Peg 90 mcgs a week and that has brought my counts to normal within 3.5 months from 1.4 million. An amazing drug. I am hoping to stay at this stage now that my bone marrow is not as crazy. Some people are calling it post et fibrosis. luckily it is reticulin not collagen. I am so excited about all the research going on.

Paul123456 profile image
Paul123456 in reply toihavegotet

I thought the article was another possible feather in the cap for Interferon. If you can cope with the side effects (if any), then appears to offer best chance of molecular remission fwiw! Clearly does not stop progression but hopefully does slow it down, buying time for new drugs/combos.

Interesting that article indicated Inf of benefit not just for early stage MF but could help intermediate as well. And better results for MF cahoot than PV.

Bluetop profile image
Bluetop

Thanks Paul -an encouraging piece

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