International Waldenstrom’s Macroglobulinemia Foundation
Sharing your story with us is a fantastic way for you to help others who are traveling down the same path that you are — whether you are a patient, caregiver, or family member— we would love to hear from you.
Patients and others who visit our website often tell us that one of their favorite features of our communications are the stories of the lives of people who are affected by WM. We would very much enjoy learning about you, your story, and how your experiences can motivate, help and inspire others we serve.
We invite you to read, enjoy, and learn from the following first-person stories by patients and caregivers, worldwide, affected by WM.
If you are interested in sharing your story with us so that we may share it with others on our website, please submit your contact details.
At the time of my husband Mark’s diagnosis almost 14 years ago, I can easily transport back to the minute we were given the diagnosis. It felt like lead weights had been tied to my ankles and I was dropped in the middle of a dark ocean. It was all...
Chris Moakley: The Story Continues On First of all, let me say it’s a thrill to still be here and able to write and share this update. I last wrote an update five years ago, finishing with “I hope to write again soon.” My Waldenstrom’s lives up to...
Part 1: My journey The word cancer is scary enough, and adding incurable in front of it only intensified the fear. In August 2020, at the age of 34 I was diagnosed with WM. The diagnosis came out of the blue as I was a young, fit and healthy mother...
Julianne & John Flora-Tostado: Our 49th Anniversary Making the best while facing the unknown together. Seven years ago, after John completed his initial and only treatment for WM (five rounds with Cytoxin, Rituxan and Prednisone in 2016), he...
From Canada: Lucie Martineau's Six-Year Sequel When I last wrote my Story of Hope, I had so many items on my bucket list that I vowed to keep healthy in order to live a long life and accomplish as many of them as I could. In 2021, my IgM...
Laurence Elliott: “Nautical Distancing” and Other Great Stuff, the New Normal My life was always fast-paced—working and playing hard with family and friends. But life has a way of letting you know who is boss and, boy, did it ever! My energy had...
Martin Vanderlaan: Celebrating 5-Years Post Stem Cell Transplant with a Wedding! With a small group of friends on March 20, 2022, we celebrated the 5-year anniversary of my autologous stem cell transplant (ASCT). I say “we” since the last 5...
“The secret to health, both mind and body is not to mourn the past, not to worry about the future, but to live the present moment wisely and earnestly.” ~Gautama Buddha We’ve all learned to live with the following words: “Not curable but...
Bob Lynch: Still Rowing On with WM! The rowing goes on, and the singing is still strong here on the ROW BOB ROW TEAM in Sebastian, Florida. In August of this year, I will be celebrating my 75th birthday with a row to a local pub. Upon diagnosis of...
Julie Davidson: My Journey With WM and Bing-Neel Syndrome Published in the Torch 23.2 (April 2022), page 5 On February 14, 2011, I was diagnosed with both WM and Stage IIIA breast cancer followed by ten months of chemotherapy, a double...
Margit Novack: Who gets to Live Like This? I saw my internist’s number appear on my cell phone. “There is an unusual result in your routine bloodwork. I think you should see a hematologist.” “Why? What do the results suggest?” I asked. “You might...
From Canada - Ron Ternoway: The Trials Continue! It's been more than 14 years since my Waldenstrom diagnosis, and I've spent half of that time on clinical trials. Over the last year, I have been enrolled in a U.S.-based clinical trial of...
Where Hope Is Found by Julie Richardson, diagnosed with WM at age 44 www.someonestolemycoffee.com March 13, 2020. A Friday the 13th I will never forget. On the one hand, it would turn out to be my then twelve year-old daughter’s last day of...
Marcia Klepac: Risk Taking in the World of WM What a disappointment! In early January 2001, I nervously opened the envelope with my lab results and found that my six years of MGUS (or possibly smoldering Waldenstrom’s) had most likely progressed...
Davell Hays: Not an Ending but a Great New Beginning In the 6 years since the story of my journey was published, a lot has happened. I have been on Ibrutinib since then, with a nearly normal IGM. I am fairly healthy for a 73 year old. The winery...
Dr. Barbara Sunderland Manousso: Confessions of a Caregiver/Spouse/Ombuds Years ago, I heard that those afraid of dying are those who have not lived. I have kept this in the front of my mind as signage, since husband John Manousso, now almost 83...
From Canada - Stu Boland: What More Could I Hope For? Editor’s Note: In earlier posts on this website, Stu Boland shared his experiences as a new WM patient, beginning in 2002 and updating in 2015, featuring his various treatments and describing...
Why is it that some little things, hardly noticed at the time, become life-changing events? My wife and I were enjoying some vacation time at my wife’s “happy place” – a small condo on one of the barrier islands near Charleston, SC. It was Labor...
[*The author, Kathy Horton, was featured in a recent article in Cure Today (Read Story HERE(link is external)), focused on how WM and other cancer survivors deal with the additional uncertainty of COVID-19. This story is a coda to the Cure...
After undergoing eighteen months of chemotherapy ending in 2014, which resulted in much success and years of being well managed and free of infusions, my WM flared up again, significantly, in 2019. This required me to go back into treatment. After...