Anyone living with Essential Thrombocythemia with JAK2?

Good News from an email received 9.11.2026 from the MPN Research Foundation:

Dear MPN Community,

We are pleased to share that the U.S. Food and Drug Administration (FDA) has approved BESREMi® (ropeginterferon alfa-2b) for adults with essential thrombocythemia (ET).

BESREMi's approval represents an important milestone for the ET community and marks the first new FDA-approved treatment option for ET in nearly 30 years.
For many people living with ET, treatment decisions are based on individual risk factors, symptoms, and blood count management goals. The clinical development program for BESREMi evaluated its potential role in helping manage ET and expanding available treatment options for patients and healthcare providers.

This approval reflects years of research, clinical development, and participation by patients and investigators. We congratulate the patients, study investigators, research teams, and PharmaEssentia for their contributions to the clinical research that helped make this milestone possible.

While every patient's treatment journey is unique, this approval expands the available options for ET management. Patients, caregivers, and healthcare providers interested in learning more about BESREMi can review the FDA announcement below for additional information about the treatment, including its FDA-approved indication and available clinical data. Patients interested in learning whether BESREMi may be appropriate for their care should discuss their individual circumstances with their healthcare provider.

To learn more, please visit: https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-essential-thrombocythemia

MPN Research Foundation remains committed to supporting research that leads to more effective treatments and, ultimately, cures for all MPN patients.

Sincerely,
MPN Research Foundation

MPN Research Foundation does not endorse any specific treatments or trials. We raise awareness of relevant clinical studies and pending treatments, regardless of sponsor or investigator. Our staff, advisors, and Board of Directors remain neutral while advancing mission-aligned efforts.

MPN Research Foundation
PO Box 2690 | Carol Stream, IL 60132-2690
mailto:communications@mpnrf.org
http://www.mpnresearchfoundation.org/

@janemc
Thanks so much for your reply. Went to oncologist appt yesterday to confirm diagnosis and it gets worse. He confirmed ET as well as MPN/MDS overlap.
I am 77 yo and who was so active prior and the wind has been taken out of my sails. My legs bother me a lot with tingling and my heart races daily. Platelets at 600. He prescribed HU (500mg) however haven't started yet. My sister had rectal cancer and lasted one week on chemo pills and her organs shut down and she passed.
Live in Green Bay area and oncologist has referred me to a Froedert in MKE for second opinion. Feeling pretty frazzled right about now... thanks again!

@janemc
Oncology appt yesterday. ET confirmed with a 2nd mutation overlap of possible MPN/MDS. He contacted a colleague in Milwaukee (2hrs away) for a second opinion.
Feeling a bit frazzled...

Newly diagnosed and trying to get the nerve to take my first dose of HU. I'm more concerned about the safety to others than side effects. You can't touch it...it can make bodily fluids harmful,,, Can you go to the gym and sweat? Care for grandbabies? kiss your spouse? It sounds so scary and it's not short term, it's forever.

@janemc
After reading the warnings on HU -Hydroxyurea 500mg - I am not sure I can take this! Warnings say it can cause cancer?
My sister had rectal cancer and her chemo pills ended her life after one week. Her organs started to shut down.
Life sure can be a roller coaster rise. One minute I'm super active and now the daily exhaustion is just short of crippling me. Sorry... to vent like this!

@ctmci Don't touch pills (I dump from bottle to little paper pill cups I order on Amazon). You can kiss, hug, touch, and sweat freely. Ask yr doc if you need to use a condom during sex. Some say yes, some say the exposure to a partner is negligible.

@pps26 I get this completely! Our past experiences with the sickness of others really colors our own health care choices.

I balked about heart surgery for years based on my experience taking care of my mom after her open heart surgery. Saw three docs plus my GP, my oncologist, and a side trip to the gastroenterology team before I was satisfied. That and the fact that I am now really short of breath and this is my best chance of regaining better quality of life.

Anyhoo, you are not your sister, and HU is not the heavy artillery type of chemo that docs infuse into acute cancer patients.

Take the time you need to make lists of questions and ask yr doc to give you odds: What's the percentage by which I lower my stroke risk if I take this stuff, for ex.

Also ask your doc if you can ease slowly into HU, like one capsule every other day to start. This gives you the best chance of avoiding any side effects.

Kindest thanks for your response! It's much appreciated!

@pps26

Anyone would be overwhelmed! It's exhausting and it's scary. And losing your sister as you did adds to the fear. I am so very sorry for your loss.

Please give yourself a break for at least a few hours. Find something that brings you relief from the worry: a walk in a garden, listening to favorite music, hugging a beloved pet.

Just the word "chemo" freaks us all out. But as nohrt4me has said, HU is nothing like the truly nasty chemo medications used to treat acute cancers.

Yes, some people have issues with HU. But, having visited this site daily for 3 years, I've never heard of an HU capsule causing the devastating suffering that acute cancer treatments can inflict.

I hope it reassures you to hear that HU is taken every day by hundreds of thousands of people across the world with MPNs, sickle cell anemia and mouth and throat cancers.

Please keep in mind nohrt4me's excellent point: starting HU at a very low dose is wise. This gives your body time to adjust. And it lets you evaluate how you're reacting to HU.

With ET our bone marrow really doesn't care about our misgivings. It just keeps on pumping out zillions of misshapen platelets, day after day.

With your oncologist's help, you will find the best path forward.

@williamsjen
I had ET long before COVID. They tell me the ESSENTIAL THROMBOCYTHEMIA is just a genetic mutation. I have asked questions about its origin or reasons and I don't think they know all the answers yet, as with many other diseases. But, I do think it is odd that about a year before I was diagnosed, I went to Caracas and had a respected vein specialist do a chemical treatment on my varicose veins. Did that have anything to do with altering the blood makeup in my body? The doctors I have asked have all said no. But in the back of my mind, I still wonder. I ultimately believe God is in control and I am grateful for all the good medicine and doctors I have encountered along the way. I do believe that I am expected to do all that I can to do my part in taking care of my body and being here as long as the Lord wants me to do His work. We had to leave the foreign mission field but I still serve the Lord here in my home church and beyond. May God bless each of you in your endeavors to take care of these things and give us all better, more productive years ahead. I would like to see my great grandchildren grow up (7 and 8th on the way). God is good.
BTW, I never took or have taken a COVID vaccine. I had read about the blood clotting problems and I already have plenty of that. They are still trying to offer and convince me to take one at my pharmacy but NO. 🙂 I DID have COVID in January of 2020 but my symptoms were pretty mild and so similar to all my other condition symptoms (like IBS, lung problems and asthma, that it was only after my husband got sick and tested positive with Covid that I thought maybe I had it too and went to be tested. We just both quarantined and waited it out. Him being a diabetic and Vietnam Veteran, will not take the vaccine either. So sorry that so many were forced or coerced to take it. So far my natural immunity has served me well.