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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.

Sharon Piotrowski: My Journey with WM

Sep 2, 2020 How focusing on fitness helped me through it

Edward Kemp: Second Act

Jul 28, 2020 "Since 2015, my lifestyle and health have continued to both change and improve."

Kathy Horton: My Story Continues...And I Am Still Coping

Jul 13, 2020 It started with a minor fall in my backyard in the spring of 2006.

Lu Kleppinger: Therapy Round Two- Ibrutinib, the Freedom of a Pill!

Jul 3, 2020 "Once you choose HOPE, anything is possible!"

From Canada - Murray Shaw: Exercise-Elixir of Life

Jun 12, 2020 For me, regular moderate exercise is the elixir that keeps my WM and MDS in the background and greatly improves my quality of life.

Timothy Salz: A Song of Hope

Jun 3, 2020 Timothy Salz: A Song of Hope 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 first sought medical...

A Story of Hope: Michael Knowlton

May 14, 2020 Kindness Matters

Lisa J. Wise: "Love Letter to My Husband in Day 18 of Quarantine"

Apr 22, 2020 COVID-19 in the House: A Story of Hope

Peter Haarmann: Treatment, Healing and Faith

Mar 13, 2020 Moving from preparing my will to growing hazelnut trees.

Jennifer Hoegerman: My WM Story

Feb 4, 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 the outdoor life whether sailing, canoeing, or riding her beloved Arabian horses, and a love of nature. Jennifer is also a nineteen-...

Dr. Michael J. Smith: Resilience and Faith – a Family’s Perspective

Jan 14, 2020 I will never forget the phone call that changed our lives. It was in the Fall 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 showed a very low hematocrit value of 17. The doctor...

From Chile - Jeanette Quiroz: A Waldenstrom’s Pregnancy

Nov 1, 2019 Jeannette Quiroz underwent pregnancy testing while being tested for WM at the age of 35. To her surprise, both were confirmed.

From Australia: Life’s Good for Michael van Ewijk Thanks to Ibrutinib

Sep 18, 2019 Michael was the first Australian to have Ibrutinib treatment and it’s been lifesaving. “My life is normal now,” said Michael, 69, of Milton in regional New South Wales.

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...

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...

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...

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