MPN Cancer Connection

04/15/2026

New findings published in Leukemia reinforce something I’ve been talking about in my recent video:

🫱 Early use of interferon in PV may drive deep remission
🫱 In some cases, patients may approach what’s being called an “operational cure”

For a long time, the standard approach was watch and wait.

That thinking may be shifting. I’m currently in remission and I’ve believed for some time it could go further than that.

Now we’re starting to see research point in the same direction.

https://www.nature.com/articles/s41375-026-02882-w

04/08/2026

Our community is growing faster than ever, and while 99% of you are here for the right reasons - information, support, connection, and real talk, the recent surge in views means I need to set some firm "Rules of the Road."

This page has been my passion and advocacy work for 13 years. To protect the supportive environment we’ve built, I am implementing a Zero Tolerance Policy. I don’t have time for warnings; if you can’t play by these rules, you will be permanently removed.

🛡️ MPN Cancer Connection: Community Rules

1. Zero Tolerance for Nasty or Snide Remarks
If you make derogatory, snide, or intentionally inflammatory comments, you will be permanently banned immediately. We are here to lift each other up and primarily share information. If you are here to tear people down, find another page.

2. Respect the 17-Year Journey
I welcome respectful questions and challenges, but do not dismiss my experience or results without doing your research. This channel documents over a decade of "bad times," clinical realities, and hard-won progress. Please respect that history before offering "corrections" on my personal health journey.

3. Medical Decisions Stay with Professionals
I am a knowledgeable patient advocate, not a doctor. While I share my personal journey and the research I find, all medical decisions must be made with your own medical professional. This page is for advocacy and information, not a replacement for your hematologist or oncologist.

4. Sharing the Message
This is a community for connection. You are welcome to share my posts and videos to help others unless I specifically request "no sharing" on a particular post. If the information can help the community, pass it on.

I’m here because this is my passion, and I want to keep this space helpful for those who truly need it. Thanks for being part of the 99%!

------------------------------------------------------------

As for my recent "remission" video (which also appeared on our PV Reporter page without incident), please understand that I am unable to answer all questions, as I have numerous projects in the works. I do plan to address the most important ones in an upcoming video or article. Stay tuned, and thank you for understanding!

04/06/2026

5 things I wish someone told me when I was diagnosed with Polycythemia Vera (PV):

- Remission IS possible, but not with every treatment approach.

- Phlebotomy manages your hematocrit. It does NOT modify the underlying disease.

- Interferons (like Pegasys and Besremi) are the treatments most likely to lead to deep molecular responses. ---> It was the power combination of Pegasys and Jakafi that "was the knockout punch" for my PV.

- Not every hematologist is the right hematologist for you. I went through FIVE before finding a doctor who would partner with me.

- YOUR research matters. I brought a clinical trial printout to my doctor's office and it changed the entire course of my disease.

You have more control over your PV journey than you've been told.

Learn. Ask. Advocate.

Full story:

After 16 years as a Polycythemia Vera patient and 13 years as a patient advocate, I'm sharing something deeply personal: a snippet from the journey that led ...

04/02/2026

2026 MPN-FIT: a randomized controlled pilot trial of supervised exercise in myeloproliferative neoplasms

https://ashpublications.org/bloodadvances/article/10/7/2142/565891/MPN-FIT-a-randomized-controlled-pilot-trial-of

03/24/2026

Karyopharm's Phase 3 SENTRY Trial in Myelofibrosis Met First Co-Primary Endpoint, Demonstrating Statistically Significant Improvement in Spleen Volume Reduction

– While Similar Symptom Improvement Was Observed Across the Two Arms Relative to Baseline, SENTRY Did Not Meet its Second Co-Primary Endpoint of Abs-TSS – – SENTRY Demonstrated a Rapid and...

03/20/2026

Abstract: Modulators of the hepcidin pathway in polycythemia vera and myelofibrosis

Ruxolitinib and subsequent JAK2 inhibitors have improved care for some patients with the myeloproliferative neoplasms myelofibrosis, essential thrombocythe

03/19/2026

MPN Financial Assistance Programs are Available

New research shows a big gap in MPN care: even with recent Medicare changes, 40% of patients still struggle to afford their medications.

Whether you’re living with PV, ET, or Myelofibrosis, knowing where to find financial help is more important than ever. Read our latest article to find resources that can help you or your loved ones handle these costs. 🩺

https://mpncancerconnection.org/2026/03/mpn-financial-assistance-research-reveals-growing-need/

03/15/2026

POIESIS: a phase III study of add-on navtemadlin in JAK inhibitor-naïve myelofibrosis patients with a suboptimal response to ruxolitinib

Most myelofibrosis (MF) patients treated with ruxolitinib fail to achieve optimal response (i.e., spleen volume reduction ≥35% [SVR35] and improvement in total symptom score ≥50% [TSS50], and inste...

03/11/2026

Partner Corner: PV In Focus:

Join us for a day of community and education on polycythemia vera!

📍 New York, NY - April 18
Birmingham, AL - April 25

Topics include:
- PV overview and treatment options
- A patient's perspective
- Self-advocacy
- Mental health
Breakfast and lunch provided.
More details/Register—https://PVinFocus.com

03/06/2026

Patient Engagement Predicts Self-Care Behaviors in Patients With Myeloproliferative Neoplasms

In reflecting on the findings, the investigators highlighted that “self-efficacy fully mediated the relationship between engagement and self-care.”

02/27/2026

New Research: A Clue to Anemia in SRSF2-Mutant MPN Patients

A study just published in Leukemia may explain why patients with both JAK2 and SRSF2 mutations often have lower red blood cell counts. The SRSF2 mutation causes a cellular pathway to get "stuck in overdrive," blocking the bone marrow from making red blood cells properly.

The promising finding: rapamycin, an already-approved drug, restored normal red blood cell production in lab and patient samples by shutting down that overactive pathway.
Still early-stage research, but a real step toward treating anemia in this patient subset.

Somatic mutations in RNA splicing regulators, including the serine/arginine-rich protein SRSF2, are frequently observed in myeloid malignancies. Using mouse models and primary human samples, we investigated the impact of SRSF2 mutations on erythropoiesis. We found reduced erythropoiesis in Srsf2P95H...

02/04/2026

Today is World Cancer Day 2026. 👇

Since 2013, we've been dedicated to helping MPN cancer patients live better lives. MPN Cancer Connection and PV Reporter provide the tools you need to become your own advocate, connect with MPN specialists, and access educational programs on emerging treatment options.

Led by founder David Wallace and our dedicated team, we bring a unique patient perspective to the MPN community, translating complex research into actionable information you can use.