Living a Better Life with WM
Jane with sons, Jack & Michael
When I was diagnosed with Waldenstrom macroglobulinemia (WM), I was shocked. I remember sitting in the oncologist’s office and being told that it was either multiple myeloma (MM) or WM. This wasn’t my first rodeo with cancer. My first husband died of MM only 13 weeks after his diagnosis in 1999, leaving me widowed with two young sons (ages 3 and 11). Then in 2007, I was diagnosed and treated for breast cancer. I have a strong family history of breast cancer, so I really did expect that diagnosis. Fast forward to 2017, imagine my terror when I was sent to a hematologist, following abnormal blood results ordered by my primary provider, and I found that my appointment was with my first husband’s oncologist. Of course, he remembered me and was bewildered to see me again!
Three weeks later, my bone marrow biopsy confirmed WM. At the time, my immunoglobulin M (IgM) was 7,000, my blood viscosity was 8.0, and I had scattered retinal hemorrhages in both eyes. I was dealing with extreme fatigue, breathlessness, and the inability to walk from one room to the next without feeling like I would pass out. I was hospitalized on that day, and I began Bendamustine and Rituxan treatment after two plasmapheresis sessions to lower the IgM. It was a whirlwind experience that didn’t allow me time to process what I was going through or participate in the decision-making about my treatment plan, due to my lack of knowledge and the urgent nature of my symptoms. I have not received any additional treatment. It has been eight years since my diagnosis.
Jane with her husband, David
During the first year of my diagnosis, I attended a local IWMF support group meeting. It was an informative presentation by Dr. Zachary Hunter of Dana-Farber Cancer Institute. I was still quite ill at that time and didn’t participate in subsequent meetings. However, in October of 2024, my local support group held the first in-person meeting in our area following the pandemic. It was so encouraging to see how positively people responded to being with other “Wallies.” We were all starved for contact with people with WM. I was surprised at the number of participants who had only been diagnosed one to two years prior. Many were not aware of IWMF CONNECT and the IWMF Support Group page on Facebook. These social networks were my lifelines in learning about our disease. It was awesome to share that information with the group.
Jane and Linda, WM Buddies!
Toward the end of the meeting, someone asked when we would meet next. When we were told June, I watched faces drop with disappointment even though another virtual meeting was to be held in between. I decided to volunteer to organize the in-person meetings going forward. I was so excited to be able to support others in this way, and I loved the in-person meeting so much that I knew I wanted it to continue.
I organized the February meeting, and shortly after, Shelly Postek from IWMF asked me to be a support group leader “since I had already taken on the role.” Being a support group leader allows me to provide timely information, tools, resources, and opportunities for conversations with others with WM. It can be a lonely walk dealing with this disease. I love being a part of a group where I build relationships with others with WM, have a sense of community and trust, and get to know others who know about our rare disease. Being a support group leader gave me the opportunity to participate in excellent support group leader training courses, and in May, I was also able to attend the Ed Forum in Jacksonville. It was such an amazing experience! I met many other “Wallies” from all over the United States; formed lasting relationships with participants; listened to, learned from, and asked questions of world-renowned experts in the WM field; and gained a breadth of knowledge about our disease. I can’t wait to go again next year!
My greatest find at the Ed Forum was the friendship of one of my local support group members, Linda Abbott. Although we had met at our group, we didn’t know each other. On the way to the Ed Forum, we met at the airport, shared an Uber, and requested side-by-side rooms. Being at the Forum gave us about 40 hours together. We had the chance to chat, eat, drink, sneak out to the beach, and attend many presentations; we had more fun hanging out than I ever imagined. Since May, we have continued our strong connection, talking by phone, emailing, texting, and meeting frequently. Linda and I are officially “WM Buddies.” We look out for each other’s symptoms in articles and posts on the IWMF Facebook and the CONNECT sites, share our opinions, and support each other’s knowledge of our challenging disease. Linda provides me with much-needed support and acts as another set of eyes on this lonely walk with WM. We get each other because we both have WM. We are buddies for life!
Jane, David, and some of their 9 grandchildren!
IWMF has so much to offer its members. I feel that I have gained so much more than I have given. I encourage you to take the first step in feeling supported by participating in a support group near you, becoming a member of the Facebook support group and IWMF CONNECT, and putting the Ed Forum on your list of must-dos. My walk with WM and my life have been positively changed by participating in the support resources that IWMF has provided. If you don’t have a group in your area and you feel even slightly inclined, I encourage you to call the IWMF office and see what you can do to get a group started at 941-927-4963 or by email at office@iwmf.com.
IWMF Facebook Group: https://www.facebook.com/groups/wmsupportgroup
IWMF CONNECT: https://www.iwmf.com/get-support/iwmf-connect-and-online-discussion-forums
Jane Cox
Sterling, VA
September 2025