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Ed Forum 2018

Stories of Hope


Share Your Story

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.

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.

We invite you to read, enjoy, and learn from the following first-person stories by patients and caregivers, worldwide, affected by WM.

Lisa Weldy: I’m Myself Again…After WM Took Over my Life

Apr 8, 2019 All WMers share a similar diagnosis, yet each has a unique journey and fight for survival. Through my journey, I am now a stronger me than I would have been otherwise.

From Iceland - Gunnar Ármannsson: “Diagnosed at age 38, running became my lifeline”

Feb 27, 2019 Always active and in his prime of life, it never occurred to Gunnar, until he almost passed out 14 years ago at the age of 38, that he needed to see a physician.

Ryan Scofield’s Story: We’re All in this Together

Feb 4, 2019 Ryan was a marathon runner when diagnosed in 2010 at the age of 35. He joined the IWMF Chicago Support Group and found the help he needed from others who understood.

From UK - Roger Brown: Why It Pays Never to Give Up

Feb 3, 2019 I was diagnosed at 53 (16 years ago) getting breathless learning to tap dance. My wife Alison noticed night sweats, tiredness and more dimwittedness than usual and thought it might be MS. I then came down with shingles and pleurisy.

Stephen French: My Twenty-Year Journey with WM

Jan 22, 2019 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 August, 1998 and started chemotherapy in September, 1998.

Chris Moakley: I’d Rather Have Won the Powerball

Dec 2, 2018 Several years ago, I was diagnosed with Waldenstrom’s macroglobulinemia (a mouthful), a rare blood cancer in the lymphoma family, closely related to leukemia. Chances of getting it were estimated to be about 0.03/1,000,000. There is no known cure. With those odds, I’d rather have won the Powerball!

From Australia - David Young: “Almost in Full Remission” Thanks to Zanubrutinib Trial

Oct 8, 2018 David Young read about a new clinical trial, checked its availability and spoke to a principal investigator – all while having coffee one morning last year. As a result, the lymphoma he was diagnosed with six years ago is now “pretty close” to being in remission.

Megan Davey: Our Family is Alive and Kickin’

Sep 27, 2018 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, then chances are either you or a loved one has also...

Deborah Barksdale: A Tremendous Support System has been Critical to my Recovery

Sep 23, 2018 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 six high-intensity classes per week.

Tom White: From Rituxan Project Team to WM Patient

Sep 23, 2018 During the many years that I worked on Rituxan I can honestly say that the thought never crossed my mind that I would actually become a blood cancer patient on a Rituxan regimen.

Emil Parente: Living with WM for 38 Years

Sep 14, 2018 Emil Parente is a WMer with a real past, and he is happy to share it with others, particularly those who are newly diagnosed. After all, Emil is special—he was diagnosed in 1980 at the relatively young age of 50 and is still doing well after all these years. He wants others with WM to take heart...

Michael Bourgo: Staying Active, Engaged, and Resilient with WM

Aug 1, 2018 Diagnosed with WM in 2015 at the age of 70, in 2016 he published two books of poetry, he is writing his third book and has two more in mind.

Bob Rupert: Living with Waldenstrom’s

Jul 23, 2018 Bob Rupert, discusses how WM has affected his life and his family, and how he approaches living with the disease.

Peter DeNardis- There is Life with Waldenstrom’s

May 16, 2018 “Get your affairs in order; we have to treat immediately; average survival rate is 6 years” – those were jarring words for someone in his early 40s to hear

From Canada – Carol Joy Patterson: Spirit of Hope Essay

May 12, 2018 My life so far has been an exciting journey, punctuated by a cascade of medical events. Never a dull moment. You don’t know how you’ll respond to bad news until you are faced with it. I’ve had plenty, but there has always been hope.

From Italy - Daniela Calamai: WM, a Family History

Oct 20, 2017 I decided to publicize my experience as a person suffering from Waldenström's macroglobulinemia (WM) because, regardless of the importance of sharing clinical and therapeutic aspects with other patients, my own has turned out to be one of the (not very rare) cases in which the disease affected two...

From Canada - Murray Shaw: Cancer is My Hobby

Aug 14, 2017 As someone living with an “indolent” cancer (slow to develop, treatable, but so-far incurable) for the last dozen years, I have decided that the best way for me to think of it is as a hobby.

Julianne Flora-Tostado: Together We Will Figure Out What to Do

Aug 8, 2017 Julianne Flora-Tostado became a caregiver after 41 years of marriage and on the same week her husband retired in seemingly good health.

Martin Vanderlaan: My Stem Cell Transplant for WM Amyloidosis

Jul 25, 2017 I had indolent WM for twenty years, but amyloid deposits in my lung hospitalized me eighteen months ago. I discuss my experiences with Rituxan, ibrutinib, and an autologous stem cell transplant (ASCT).

From Italy - Luigi Villa’s Story: Hope to Fear and Back to Hope

Apr 28, 2017 I waited for months before I made the decision to write this simple page about my story. I don’t know what the exact reason for my hesitation was, but I believe I was not ready or not completely convinced that I wanted to do it.

Wanda Huskins: Facing the Uncertainty of WM in Uncertain Times

Feb 28, 2017 "I think I feel something," murmured the nurse practitioner during a GI appointment. I was initially there to schedule a colonoscopy. Lying on the exam table I strained my head upward wondering if I could possibly see what she was feeling.

From Canada: Lucie Martineau’s Journey to Stem Cell Transplant

Feb 17, 2017 My story begins in 2011, when I was 55 years old. I had been a professional ballerina, blessed with good health and good eating habits.

Bob Lynch: Still Rowing After 21 Years with WM

Jan 16, 2017 It was June of 1995. I was about to have a very special week. What I thought was going to be special was that on this particular Monday, my wife Sue was flying to Tallahassee, Florida, to defend her doctoral dissertation at Florida State University.

From Canada - Ron Ternoway: How a Clinical Trial Changed my Life

Nov 9, 2016 Ron Ternoway was diagnosed with WM in 2006. After multiple treatments, most with short remissions, in 2014 he decided to participate in a Clinical Trial. Ron has agreed to accept emails from anyone who has questions about his experience. rternoway@eastlink.ca

Julie Davidson: Mi Viaje Con Bing-Neel

Nov 6, 2016 En 2016, un oncólogo le informa a un nuevo paciente, su diagnóstico de Macroglobulinemia de Waldenström (WM). Es probable que añada en rápida sucesión, las siguientes observaciones: " cáncer indolente", "incurable, pero tratable", "observar y esperar estados posibles por varios o incluso muchos,...

Julie Davidson: My Journey with Bing- Neel

Nov 6, 2016 Bing-Neel is an extremely rare complication of WM. For those who missed the inspirational article about Julie Davidson’s journey with Bing-Neel in the September Torch, you can read it here.

Davell Hays: My Very Long Journey – With WM and With the IWMF

Sep 15, 2016 In the mid 1980’s, I began having symptoms that are common to most of us with WM. I saw doctors for seven years before a diagnosis of WM finally was confirmed. But a study of prior blood tests showed high protein levels as early as 1986.

Ali Handal: There’s Nothing Like Cancer to Make You Contemplate Life

Jul 19, 2016 A little over two years ago, I was diagnosed with Waldenstrom’s macroglobulinemia (WM for short). Since then, I’ve been doing a LOT of thinking. Thinking about everything I’ve experienced since that strange day – the fear and pain that came with my diagnosis and subsequent treatments; the joy of...

Dr. Michael J. Smith: 22 Years and Counting - My WM Journey

Jun 25, 2016 The following is an account of a life journey with Waldenstrom’s Macroglobulinemia(WM)that later turned into WM/Lymphoma (WM/L). My story is aimed at beginning patients, so I will cover the WM episode more thoroughly than the subsequent WM/L. Full disclosure: I am only a novice in medicine, so I...

Lu Kleppinger: Surviving Waldenstrom's - The Gift of Life

Mar 2, 2016 In August of 2012, I was diagnosed with Waldenstrom's macroglobulinemia (WM), a rare lymphoma with only about 1,500 new cases each year. One week after my diagnosis, on my 30th wedding anniversary, I started chemotherapy which lasted for 18 months and consisted of more than 50 infusions.

From Canada – Stu Boland: a Positive Attitude and an Active Lifestyle

Jan 28, 2016 Some of you will know me -- a 68-year-old WM patient living in Calgary, Alberta, Canada – from my earlier story posted on the IWMF website in January 2015. In that story, I describe how my wife Nancy and I have been leading an active lifestyle, especially since retiring about six years ago.

From Australia – Tommy Barkmeyer: Lucky Me! Tommy B.

Oct 9, 2015 It might seem strange for me to say – four-and-a-half years after being diagnosed with a rare blood cancer – which I feel like a very very lucky man. I can’t say I have enjoyed these last few years of treatment and the slow recovery that followed.

Marcia Klepac: A Different Path…My World of Clinical Trials

Jul 23, 2015 Marcia Klepac: A Different Path…My World of Clinical Trials 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 to active Waldenstrom’s (WM). During...

Edward Kemp: At the Right Place, At the Right Time

Jun 7, 2015 In 2007, I was 78 years old. In the fall of that year I was still driving a dump truck, for a local contractor, but I did not feel well. Winter passed, and the next spring I noticed that my feet hurt. I did not go back to work in the spring.

Nancy Saunders: Staying Motivated to Exercise and Coping with WM

Mar 21, 2015 I am not a natural exerciser. Born and raised in the years before athleticism was encouraged for girls, I have moved my reluctant body because it was good for me, not because it came easily or was particularly enjoyable.

From Belgium – Joanna Van Reyn: Living Long With Waldenstrom’s

Mar 13, 2015 At the end of May 2007, some weeks before my 73rd birthday, I went to my family doctor for my annual checkup. With peace of mind! For several years I was often tired, extremely tired. But that was due to ‘the age,’ the doctor said. I just had to adapt my activities.

Konnie Stinson: WMer Completes 2014 Marine Corps Marathon

Mar 8, 2015 On March 27, 2013, 43-year old Konnie Stinson successfully registered for the 2013 Marine Corps Marathon to be held the following October, setting her on the path to achieve a goal that she had held for several years.

From France - Paulette Tribondeau’s Story: Building Awareness

Feb 23, 2015 ​In June 2013, at the age of 62, I was prescribed a blood test before undergoing surgery. The results came back indicating that I was deficient in the blood clotting Factor VIII. Doctors then thought that I might be suffering from von Willebrand disease, and I was sent to the hematology service at...

Jennifer Hoegerman: My WM Story

Dec 11, 2014 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 the outdoor life whether sailing, canoeing, or riding her beloved Arabian horses, and a love of nature. Jennifer is also a nineteen-...

From Canada - Charles Schafer: a Challenging Career Despite WM

Dec 3, 2014 Born in the Bronx, NY (Throggs Neck on the shores of Long Island Sound) in 1939, Charles Schafer completed his Ph.D. in Marine Geology at New York University in 1967. Soon thereafter, he moved to Nova Scotia, Canada where he worked as a research scientist at the federal government’s Bedford...

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