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!
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.
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 been diagnosed. We know how it feels when the world, as you know it, splits in half.
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.
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 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 and hope from his WM journey.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 and hope from his WM journey.
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, discusses how WM has affected his life and his family, and how he approaches living with the disease.
“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
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.