International Waldenstrom’s Macroglobulinemia Foundation



Ryan’s story was first published in the in the IWMF Torch, January 2015, page 21. This is an update to that story.

I was diagnosed with WM in 2010 when I was 35. At the time, my son was barely a year old. I had moved to Chicago with my wife twelve months earlier. We had no support network and we were caught completely off guard. I’m thankful that a random physical exam for work set me down the path of figuring out why I was anemic. But the news was quite a shock.

I reached out to IWMF and my local chapter to get immersed in the details. I started chemotherapy immediately due to my very low hemoglobin level. No watch-and-wait for me. My therapy began with bendamustine and rituximab. The bendamustine worked well (with some ugly side effects), but the rituximab did not treat me well. I had severe allergic reactions to it that led to my infusions being carried out in a hospital Intensive Care Unit over 48 hours.

Six months after completing this treatment, I started with maintenance rituximab. Unfortunately, the allergy never subsided, and I decided not to continue, as the reward didn’t outweigh the risk. Overall, I had a great response, and went for a family vacation at Rocky Mountain National Park to celebrate the return of my strength.

Once back on my feet, in 2014, I organized a couple of fundraisers that centered on team running. In the first race, I was strong. But for the second one, I was down 35 pounds and feeling the sluggishness caused by low hemoglobin again and ran only half of the marathon. We raised over $10,000 for IWMF research, which made me feel like I was part of the solution. It was frustrating to run only half of the marathon, but my team finished strong, which was a reminder to me that we’re all in this together — not just those of us with a diagnosis.

I had about four years between the end of chemotherapy and the beginning of my second treatment. During this period, my wife and I had to decide if we wanted to expand our family as we originally had intended.  We had one child, but wanted one more. We decided not to let the disease be the deciding factor, and soon thereafter we were blessed with a daughter.

For my second course of treatment, I opted to try the newly approved Imbruvica (ibrutinib), which worked amazingly well. My support group leader, Don Brown, stopped by my house a few months before I started this treatment. I had been suffering from severe weight loss, back pain, and depression. The grind of carrying this monkey on my back was really getting the best of me. It was good to have a friend who could understand what it felt like. Once I got on Imbruvica, my weight and strength came back almost immediately. And while no one can explain why it happened, my back pain also went away. That was three years ago. I’m still taking Imbruvica and feeling great. No side effects. I haven’t felt this normal since long before my diagnosis.

I’ve stayed in touch with my support group (although being a dad frequently gets in the way of attending meetings). Over the years I’ve been able to share my story not just through the IWMF Torch, but also one-on-one when I get emails or phone calls from others who are newly diagnosed. It has been very rewarding for me to be able to help others going through the same shock and discovery process that I experienced. Early in my attendance at support group meetings, fellow WM’er Dave Perrin gave me some good advice that has stuck with me ever since: “Make every day count.” That has really helped me keep everything in perspective as I move toward the future.

Ryan Scofield
Western Springs, Illinois


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