Advances in Research | Emerging MPN Therapies on the Horizon

[hunter5582]

This is a brief summary from October of 2023 of the promising progress being made in MPN treatment options. For anyone who has not seen it, it is worth watching.

powerfulpatients.org/2023/1...

[Spanelmad]

Promising drugs on the horizon only can be good news!

[AndyKay]

Hunter this is amazing news. Thank you for sharing.

[Ben2022]

Thank you for sharing this good news Hunter! Hope one day we will cure MPN.

[Pat032018]

Thanks for sharing this, Hunter.

[JAB6]

Thank you Hunter!

[EPguy]

Exciting progress. One combo I didn't hear: IFN+Rux, this one is quite compelling. It's been shown despite apparent opposing effects, they are complementary. Rux may also soften some of IFN's harsher effects. (I can't try of course)

[Island-Lady in reply to EPguy]

do you have more information on the combo of rux and interferon? I am on interferon and it is taking more than a year and a half to bring my platelets down and they are still a little high. I asked my oncologist about adding rux and he knew nothing about it so if I could get some information that would be great. Since I am feeling good on the interfere on, and was incredibly sick on hydroxy, I am reluctant to just stop the interferon.

[EPguy in reply to Island-Lady]

Here is a post that discussed it in some detail. Note the red line in that plot is my addition, not part of the actual report.

healthunlocked.com/mpnvoice...

Here is another post from a member who has been actually using this combo:

healthunlocked.com/mpnvoice...

It's likely hard to get insurance coverage for this. What is your current PLT?

[Island-Lady in reply to EPguy]

thank you so much!

[Island-Lady in reply to EPguy]

oops you asked my current platelets. They are in the 700s. When I was on hydroxy, I got them down down into the 500s and they stayed somewhat near there and then gradually went up. I did have a tooth infection for a while, so I was blaming it on the infection but my last bloods were about the same as the time before which was about 700. I get another draw in a week or two and will also retest my allele burden then. I am feeling very normal even though my platelet level is high, so I am reluctant to change medication. I am looking very interested in options that can be added to the interferon.

[EPguy in reply to Island-Lady]

From my experience and a report discussed in a recent post, Rux may be less effective getting the lowest PLT values. At least it can take time. Mine seems to be leveling ~400 while on IFN and HU it was in mid 200's. But we all can have very different outcomes. The combo might be also effective here.

You were on a low IFN dose last year, is that still?

[Island-Lady in reply to EPguy]

Yes, I’ve moved up 0.45 to 0.50. I am really sensitive so I have to do this very slowly. I am hopeful that my next blood report will be better.😊 thank you so much for your suggestions and the links on rux and Pegasys.

[ETinNYC]

Thanks so much for sharing , Hunter! What a lovely optimistic post to start of 2024. Here's hoping for many meaningful advanced in treatment and hopefully cures very soon. Wishing you a healthy 2024 from NYC.

[Booagain]

Many thanks and a fine new year to you!

[Gaithersburg]

Brilliant news - very positive and thanks for sharing.

[Grapefruitlohoff]

Amazing! Thank you.

[Bullace]

Thanks for sharing this Hunter. Very exciting possibilities if we can only keep going for another 5 years!

[hunter5582 in reply to Bullace]

Plan to make it so to make it so. My Projected Age of Demise per the statistics is age 74, six years from now. To Bloody Hell with the PAD! I do not plan to die on a timer! There is no clock ticking away in my body. I am going to carry on with living a good life for as long as possible. With my current treatment plan, I plan to live well beyond the statistical projection. I plan for that time to be high quality time. However long it takes to reach my actual PAD, it is going to be a fun ride that is full of joy enjoyment and success. We should all plan to make it so.

[brightlys]

Thank you so much for sharing! This is really interesting