Pete’s Extra Innings – Collaborative Care and Breakthrough Therapies Win the Game

The IWMF Home Office recently checked in with Pete Skinner, a solar engineer, to see how he was doing since we had not heard from him in a while on our IWMF CONNECT discussion forum. It turns out that Pete is doing great, and we are grateful that he wanted to share his story with the WM Community! Please see the end of Pete’s story to learn how to join our discussion forums!

Cruising to Bermuda for a break in the action – 2024

Pete & Betsy: My, how time flies! It’s been years since we posted to IWMF CONNECT. It’s been hard to find the time to write now that we have so many things on our to-do lists. Also, we are sensitive to the struggles of others with WM, but we hope our story and Pete’s good health at 78 will encourage others to believe in better times ahead.

For us, effective treatment paths, a dedicated caregiver, an enlightened physician team, and IWMF as an essential partner combined to make Pete’s life much better than we could have imagined when he was first diagnosed. We’ve found IWMF CONNECT to be especially useful because the posts are candid, unfiltered patient experiences. And, of course, it fosters friendships and communication with other members of the IWMF community across the world.

The Beginning (2009-2015)

Pete: I was diagnosed with a lymphoma in 2009 and later, Dr. Jorge Castillo at Dana Farber identified Waldenstrom’s macroglobulinemia as the culprit. On watch and wait for six years, my blood chems steadily deteriorated along with my ability to climb stairs and carry solar panels for my projects. One day when I could not walk up hills with Betsy, she insisted that I talk to Dr. Castillo about starting treatment.

Pete & his son, Willie at Berkeley’s Sconehenge – 2024

My son Willie, a bioscientist, and I conferred at length and agreed that the standard (at the time) chemotherapy treatment of Bendamustine/Rituxan should be avoided, and our research pointed to targeted therapies instead as an effective and less impactful alternative. We chose a Dana-Farber (DF) trial with Ixazomib/Rituximab. I started the rather arduous monthly five-hour infusions with optimism. And, yes, I did get better quickly and resumed my outdoor sports and full-time work as a solar project design engineer, installer and educator.

Betsy: When I met Pete, it was like meeting Indiana Jones had come to life. He had whitewater kayaked all over the world, saved rivers from dam development, and brought major polluters to justice during his work with the New York Attorney General’s office. Although he was 18 years older than me, he had more energy than I had ever had, up each morning to seize the day and make a difference. When he was diagnosed in 2009, we were stunned. How could this happen to the most dynamic person I had ever known? We were both shocked, frightened, and uncertain about what to do next. At that point we did what we had always done to solve a problem—we delved into researching the topic and thankfully found IWMF, which became an invaluable source of information and support. As Pete’s blood numbers started to improve after Ixazomib/Rituximab, we were hopeful that this recovery would last.

First Setback (2017)

Pete: Unfortunately, 18 months after starting this treatment, my improvement stalled, and pleural effusions and thoracentesis (lung cavity drain, a palliative treatment) entered my lexicon. Although seeing a 1500 ml bag of yucky fluid carted away was great and I felt much better, weekly lung pump-outs were not a long-term solution.

Betsy: It was at an IWMF Ed Forum where I first learned about ABT-199 (Venetoclax). I remember looking at a graph that showed the “bad” blood cells in the patient’s blood chemistry went to near zero within 24 hours of the patient first taking the drug. It looked like a miracle drug, and for Pete it was… for a while.

Serendipitously, Dana-Farber hosted a Venetoclax trial at that very time and Pete qualified. The first dose sent him to the hospital with tumor lysis syndrome and earned him the dubious honor of a footnote in the final report several years later. But, after a few weeks of lower doses, Pete was soon skiing and paddling again and even started mountain biking a few months later. His improving blood data suggested he might on day reach a stable remission.

Second Setback (2019)

Pete: As the end of the two-year Venetoclax trial approached, my stamina and blood chems were slipping again. We were crushed when the final trial CT scan revealed pleural effusions again and a big, fat lesion inside my chest, messing up all the plumbing in there.

Betsy: I remember how nervous, bordering on panic, I was when the Brigham and Women’s surgeon took twice his time estimate to get a lung biopsy from Pete’s chest. But it was worth the wait. The big lump was WM and amenable to treatment by other WM drugs.

Pete endured more weekly lung drains and developed bronchitis and heart arrythmias, eliminating his ability to pursue sports and work. By November 2019, we were all very concerned that he might not survive.

The Game Changer (2020-Present)

Pete & his mountain bike atop Mt. Greylock in the early morning light – 2025

Pete: As the result of our research and the IWMF Ed Forums and CONNECT discussions, we knew BTK inhibitors had really shown impressive and lasting effectiveness with tolerable side effects – but required daily doses of pills indefinitely. A new generation of these drugs, including Acalabrutinib and Zanubrutinib, had shown even better performance and fewer side effects. After a long Friday afternoon talking with Dr. Furman in New York City, I was convinced to try Zanubrutinib.

The next hurdle was getting recruited for the trial. The trial was approved, but it was not recruiting anywhere. No amount of telephone calls shook the trial loose, even as my condition worsened and getting prescriptions for lung drains got harder and harder. Finally, Morristown General Hospital notified me that I could come in for trial pre-screening, and I was accepted as the first Zanubrutinib patient in the United States. After a few months when I and a few others did so well on this drug, its maker, BeOne (formerly Beigene), sought FDA preliminary approval and got it.

Betsy: Once again, this recovery seemed miraculous. Pete’s condition went from dire to skiing and kayaking again in six weeks. He also frequently rides his bike up Mount Greylock (3,491 feet). We are so grateful and love every day of the health we share. Those four capsules in the morning have just become a habit. He’s tolerated the medicine extremely well with no side effects. Pete’s blood chems, remarkably, are all normal now—16 years after diagnosis! In fact, Dr. Furman told us recently that Pete was no longer immune compromised.

Living Fully

The pre-concert Eagles tableau at the Sphere in Vegas – 2024

Betsy: This journey has strengthened our love and gratitude for each other. Last year we saw the Eagles in Las Vegas. We sang every song at the top of our lungs as the light show surrounded us from three sides. Don Henley thanked us all for coming and talked about being thankful for the band’s “extra innings.”

Pete: I am celebrating my own extra innings with a third career modernizing America’s multifamily hot water production and distribution systems and the national building codes that define them. When I’m not working at my desk, I’m either pounding on the piano, helping Betsy in her business adventures, being there for my boys in their careers and lives. or protesting to save America’s Democracy and whitewater rivers.

WM has changed my life—actually, for the better. We are now much more conversant with cancer symptoms and treatments and where to get reliable medical information. I now treasure each day and precious time with Betsy and my family and friends, including the worldwide WM community that has always been there to help us understand this disease and how to fight it.

Message of Hope

Betsy: When I meet someone who works in medical research, I want to hug them with all my strength. These folks (and the doctors, nurses, and administrators) are the real heroes. Every WM patient’s journey is different, but I suspect the feelings of fear of uncertainty and facing mortality are universal. For everyone who is reading this please know you are not alone, IWMF is here to give you guidance and support.

Pete: Each day offers more chances to help others achieve their dreams and live their best lives. We hope our journey and IWMF’s advocacy for a lasting cure will give you hope.

Betsy and I applaud the staff and volunteers at IWMF who are ready with the medical information and contacts we needed to make life-saving decisions. We also recognize IWMF’s vital research support, which has propelled treatment advancements, such as BTK degraders. We also want to thank Drs. Castillo and Furman and their staffs who have kept me so healthy.

We wish you the best of health and love and freedom in the decades ahead!

Pete Skinner & Betsy Wyman
August 2025
East Chatham, NY