International Waldenstrom’s Macroglobulinemia Foundation
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International Waldenstrom’s Macroglobulinemia Foundation
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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.
Please listen to Tim's song here . My Waldenstrom’s (WM) story officially began in January of 2018, two days after my 70th birthday. Happy Birthday Tim! Unofficially, I believe it began many years – or possibly, even many decades – before that. I...
From Canada- A Story of Hope: Michael Knowlton From Michael Knowlton: Kindness is a beautiful thing, both as the recipient, and as the giver. Living with cancer (WM) in my life has reminded me of the importance of being a force for good and working...
Diagnosed with WM in 1990, Lisa Wise has been mindfully practicing social distancing long before it was popular worldwide. After almost seven years of watch and wait, Lisa was treated with Bendamustine and Rituxan to address complications...
In the summer of 2014, I became slightly short of breath during a hike up a granite dome mountain called “The Thumb” at Sequoia National Park. This was highly unusual for me. I have been a high-energy person my entire life, working in the...
Published in the IWMF Torch , November 2014, pages 15-18 *Updated January 2020* Jennifer Hoegerman’s life is, by every measure, an active one filled with parental and professional commitments, volunteerism of a challenging sort, an enthusiasm for...
I will never forget the phone call that changed our lives. It was in the autumn of 1998 when my sister and I received a call from my mother. She was extremely upset. Our father had just received a call from his doctor who reported his lab work...
Yes, such a pregnancy is possible, and here I am, pictured with my son who is almost five years old and who is the joy of my life. It all started in January of 2013, when I was 35 years old. I went to see an endocrinologist because I suspected I...
Michael’s story was first published on www.iwmf.com on December 3, 2015. This update to the story is a reprint from the Leukaemia Foundation of Australia’s June 2019 issue of Lymphoma News. Michael van Ewijk “hasn’t looked back” since September...
I’ve come to learn that none of us with WM has a “typical” journey. This very rare blood cancer affects us all so differently, not just with symptoms, treatments, and severity, but also with age of diagnosis. When I was 28 and a new mom to my first...
Being diagnosed with an incurable cancer is an experience that no one wants to have. But, it certainly gets the attention of those so diagnosed. One asks: what does it mean? What next? What can be done? How much time do I have left? Many such...
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...
This is an update to ROGER’S STORY published on www.iwmf.com ON DECEMBER 11, 2014 Multiple cycles of chemo and relapse, followed by an autologous stem cell transplant. The photo shows the last of my hair coming off during transplant! ...
I have had a long journey with Waldenstrom’s macroglobulinemia. I have had good news and bad news during this period, but the good news has been with me for over sixteen years. I hope it lasts a whole lot longer. I was diagnosed with WM in...
Chris’s story was first published on www.iwmf.com on September 15, 2014, with the author’s approval, as a reprint from the Cancer Support Community of Lehigh Valley, www.cancersupportglv.org/get-support/stories-of-hope/chris(link is external)....
During his “compulsory ‘me’ time” at his local café in Byron Bay, Australia in September 2017, David received an email about a new international Phase III clinical trial for Waldenstrom’s macroglobulinemia (WM), comparing two targeted therapies –...
It has been 8 years and 5 months since my husband Mark was diagnosed with a disease that the oncologist we had only met a few days earlier had to spell out. If you are here at the International Waldenstrom’s Macroglobulinemia Foundation’s website,...
Story first published in the IWMF Torch Magazine in October 2012, pages 13, 34-35. Update published on www.iwmf.com in September 2018 My Work on the Rituximab Core Team It all began in 1971 when, armed with a BS in Chemistry and an MBA, I began my...
To put my story into context, you need to know that I had been a personal trainer and a fitness instructor for many years. So I know my body better than most. I ate very healthily for the most part, and I was teaching a minimum of...
Some four years ago, at the age of 70, my wife and I pulled up stakes and left Iowa, where we had resided for 32 years, to move to the State College area in Pennsylvania. This would allow us to be more active participants in the lives of our two...
“Get your affairs in order.” “You have a rare, incurable blood cancer called Waldenstrom’s macroglobulinemia.” “Average survival rate is 6 years.” “Given your symptoms and blood test values, we have to treat immediately.” Those were jarring...
