Advances in Research | Emerging MPN Therapies on... - MPN Voice

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Advances in Research | Emerging MPN Therapies on the Horizon

hunter5582 profile image
19 Replies

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...

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hunter5582 profile image
hunter5582
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19 Replies
Spanelmad profile image
Spanelmad

Promising drugs on the horizon only can be good news!

AndyKay profile image
AndyKay

Hunter this is amazing news. Thank you for sharing.

Ben2022 profile image
Ben2022

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

Pat032018 profile image
Pat032018

Thanks for sharing this, Hunter.

JAB6 profile image
JAB6

Thank you Hunter!

EPguy profile image
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 profile image
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 profile image
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 profile image
Island-Lady in reply to EPguy

thank you so much!

Island-Lady profile image
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 profile image
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 profile image
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 profile image
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 profile image
Booagain

Many thanks and a fine new year to you!

Gaithersburg profile image
Gaithersburg

Brilliant news - very positive and thanks for sharing.

Jeffreylohoff profile image
Jeffreylohoff

Amazing! Thank you.

Bullace profile image
Bullace

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

hunter5582 profile image
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 profile image
brightlys

Thank you so much for sharing! This is really interesting

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