The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a patient-founded, patient-led, international non-profit that is dedicated to a simple but compelling vision: Support everyone affected by Waldenstrom’s macroglobulinemia (WM) while advancing the search for a cure. Since 1996, IWMF has funded over $10 million in WM research and provided an array of informative resources for patients, caregivers, and medical professionals. These resources include events, support groups, booklets, a quarterly newsletter, videos featuring top WM researchers, and more.
On our channel, you can find a variety of videos from Waldenstrom's Macroglobulinemia experts, patients, and caregivers from events like out annual Educational Forum. To learn more about IWMF, we encourage you to visit www.iwmf.com and become a member for the latest in WM news, advocacy, events, and more.
My dad was diagnosed with WM in 2005 and died in 2021 from complications associated with WM--not the cancer itself. He was being treated at MD Anderson and received world class care, and without these complications would likely have lived many more years. Just sharing my story to provide some hope for those affected by WM.
My exams are all perfect...just igm at 900...but I feel bad...but there s no reason for treating..apparently! I'm very discouraged cause daily dizzyness !
I'm tough and this has been a nightmare. Obtaining healthcare is the worst part. Doctors do not and don't document your symptoms or put the wrong thing or recently totally fabricated a diagnostic which was provenly impossible. They get paid anyway.
Very few doctors know even about non-hodgkins lymphoma. I have to advocate for everything. I'm waiting months for iron infusion because I'm not absorbing it. It's too much to have to advocate while battling it ...the fatigue, bone pain. constant respiratory issues. Even when my daughter goes with me, questions about a plan of treatment and failure to document symptoms leaves you abandoned. I can not get through to the cancer place and end up having to go in person to refill doxycycline. Still can't find out about iron infusion status because no one answers the phone. It's no wonder you die of cancer in America.
Dr. Ansell recommends asking questions but he fails to realize that, after receiving the bombshell of the diagnosis, you have no idea what questions to ask or even who to ask. Four years later, I am still asking questions and have come to the conclusion that some hematologists don't have good answers.
I needed to hear this today ❤ I'm 32 and just had a good long cry because I'm in the throws of getting diagnosed. Now I'm gonna gather myself together and get a battle plan in place.
Thank you to both doctors for taking the time to answer all the questions we didn't get to during the Ask The Doctor session. Excellent answers. It was incredibly kind of you to take your own time to these important questions. We are so lucky to have caring doctors like you to help WM patients everywhere!
We are so grateful to have volunteers like Sharon donating their time and expertise to the IWMF, and glad you're enjoying the video! We're hearing from other WM-ers that they're doing the video twice a week and feeling stronger as a result. Keep up the great work!
I have been living with this disease for 3 years going in 4. As well as lung cancer. Had my lower left lobe of my left lung removed three year's ago. And it came back just did a very low amount of radiation. And i find out this month if it's gone. I have lived a wonderful life. So no complaints there.
I had WM treated with chemo in 2016. It came back about seven years later in mutated form featuring elevated (5600) IGG but only slightly elevated IGM levels. FYI
We are so thankful our instructor was available to teach a class on Christmas Day, and apologize that the time required to re-edit the video was not feasible for her. In the future we look forward to upgrading the audio experience in our free videos.
Yes, I'm really so sorry about that, Barry. There was nothing I could do about the lawn crew right outside my window, but rest assured - I am moving and my new home is in the woods and very very quiet. Thank you for your patience with Zoom life. :)
