Query about potential cures or progession cures for MPNs

[EmeraldA]

Hi everyone, as a newbie to MPNs and in my own case ET Jak2 positive. I have been researching what potential cures could be on the horizon. Does anyone here have any information on this? I read they can turn the Jak2 gene off and others studies. Just wondered what other peoples option is here who have knowledge on this subject. Thank you

[Manouche]

Did you read what Moshe Talpaz wrote about interferon recently ? : « I studied it in 1998; it was a long time ago. A patient who I started with essential thrombocythemia but JAK2 positivity. I started to treat her in the late 1980s. And she developed a complete molecular response after 25 years. She is in remission now, after 30 years on therapy. She still gets it on and off. »

onclive.com/peer-exchange/m...

[EmeraldA in reply to Manouche]

Thanks for posting up. Very interesting especially considering it is an older drug. Thank you for making me aware of this.

[EleanorPV]

Welcome, newbie,

No cure as yet for the jak2 mutation. Lots of good positive research on interferon. Most people are desperate to find a cure, when they are first diagnosed.

Something which helped me. Acceptance of the diagnosis and then learning to live with the new you.

Remember with medical care most of us will survive with an MPN and die from old age.

Hope you find this helpful.

[EmeraldA in reply to EleanorPV]

Dying of old age sounds good to me! I just want to be here for my daughter. Thank you for commenting. I get that when you are first diagnosed you just want that cure to be here soon as. I did read about interferon. So glad I'm maybe on some sort of right track in my mpn information gathering. Thanks again and I hope you are safe and well!

[MaggieSylvie]

There is an old Chinese saying: There is a cure for everything but some cures have yet to be found.

[EmeraldA]

Yes! It's the problem solver in me.....

[hunter5582]

The closest thing to a cure at this point I am aware of is PEGylated Interferon. It sounds like the Ropeg version may be easier to tolerate than Pegasys, which is hopeful. While molecular remission is not technically a cure, it sure sounds like a good thing to me.

FYI - I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I am JAK2 positive with a mutant allele burden of 25%. I am fortunate to have a relatively indolent form of PV. Most of the time I have been on an aspirin only regiment with no incidents of thrombosis. I am not on a phlebotomy-only tx protocol. So do know that until we find a cure, many of us can manage the MPN successfully.

[EmeraldA]

Thank you. I dont know what my allele burden is yet. As have not seen the Hemo since diagnosis. I will what my measurement is. Can this be told from blood test or so you needs bmb to tell this. Personally I really know nothing about my condition yet. Thanks again.

[Hidden]

Agree with Hunter agree with Eleanor and prob they and others were like me when being diagnosed with this was like been given a death warrant at first First mistake I made was googling the condition I have ET 8 to 14 years prognosis OMG my already anxiety issues rocketed I cried lots doom and gloom lots put my family through hell preparing to die. I have now had ET for 10 years being over 60 now I am on 3 hydroxy a day Platelets have always been around 600 to 700s gone either way few times. I am developing other health issues now which contribute to anxiety but anxiety can cause platelets to rise. I wish I could turn the clock back Emerald so hope I am helping you now, I wish I had not stressed so much over the last 10 years not have let the diagnosis affected me so much and gone with it day to day with more positivity. You do get frightened about dying and worry about leaving your loved ones but lets face it something could take anyone before this does. Advice Stay in touch with others in same situation for support. Be healthy with lifestyle Mindfulness Reiki Do research to avoid things that can raise platelets. Stay as positive as you can THIS WILL NOT beat you. People have had ET for 20 years and still research goin on for cures. Here me lol shud of took my own advice But learning now You will learn to live with this honestly but only you can improve living with it. Try and have good rapport with your Consultant too Mcmillan can give support too xxxxx Best Wishes here for support like all our MPN buddies on this site x Hope you have a fab day