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Current treatments for Waldenstrom macroglobulinemia (WM) are not likely to result in a cure. Sign up now to save articles, get E-News, become a part of the Patient Power family, and take control of your health. In a recent webinar hosted by the International Waldenström's Macroglobulinemia Foundation (IWMF) and held on July 22nd, 2020, Dr. Jeffery Matous from the Colorado Blood Cancer Institute gave an in-depth…, According to a story from crweworld.com, the biopharmaceutical company BeiGene, Ltd. recently released the results of a phase 3 clinical trial. The…, According to a lovely post on the International Waldenstrom's Macroglobulinemia Foundation website, Julianne married the love of her life at the age of 19; her husband John was 30. All Rights Reserved. For anyone who is newly diagnosed, I would tell them that there is light at the end of the tunnel. Researchers have so much…, Partner With UsSubmit a StoryBecome a Contributor, Subscribe to Our NewsletterCheck Out Rare EventsGet Inspired By Our Memes, About UsRare Diseases and ConditionsTerms of UsePrivacy Policy. https://pixabay.com/en/connect-connection-cooperation-20333/, IWMF Webinar Provides In-Depth Info on WM. We are committed to finding a cure for WM. Her mother. New Waldenstrom Macroglobulinemia Patient Story of Hope Peter DeNardis was diagnosed with Waldenstrom macroglobulinemia in 2003 and is a board member for the International Waldenstrom’s Macroglobulinemia Foundation (IWMF). When Should a Patient Seek Treatment for Waldenstrom Macroglobulinemia? Rare Disease News; contribute@patientworthy.com; Facebook-f Instagram Linkedin-in Pinterest Twitter. Diagnosed with Waldenstrom Macroglobulinemia on 10/24/13. The goal of this trial was the comparison of…, WHIM Syndrome WHIM syndrome is a form of primary immunodeficiency. He was able to find a specialist through the IWMF Connect, the online group discussion forum and his local support group. Patients with Waldenstrom macroglobulinema find resources, support and connections to help them cope with their diagnosis and live longer and better lives. How many have this cancer? Diagnosed with WM in 2002. It’s not going to cure you, but it just makes your quality of life better. Consider joining the IWMF for information, resources and support. It’s a supplemental source of information for our people.”. He had never heard of this rare type of non-Hodgkin lymphoma. At the time, enjoying juggling family life as a busy wife and mum to two young daughters, aged 6 and 3, as well as having recently returned to work in a sales support role. Copyright © 2011-2020 WMFC.ca. Make sure you get the second edition if you so desire. Sign up for Patient Power e-news to get the latest Waldenstrom macroglobulinemia information delivered right to your inbox. If you would like to share your real life story, please do get in touch with us. I live in Charleston, SC, and was diagnosed with Waldenstrom late May, 2013. A married father of three in his early 40s, DeNardis worried about how his illness would impact his family. Research Updates for Multiple Myeloma and WM! The reason she started her column? My Urologist told me that I don’t need to see him again for a year. He has less frustration when things don’t go his way. Reside in Beaufort area,SC. She had been in remission for 7 years when she got it back again last year. International Waldenstrom's Macroglobulinemia Foundation 6144 Clark Center Ave. Sarasota, FL 34238 Phone 941-927-4963 Fax 941-927-4467 EIN: 54-1784426 Count on us for updates on the coronavirus and guidance for cancer patients and family members. Most people with WM are treated for some time, followed by a break, and then treated again when the disease comes back. To stay logged in, please refresh the page or, if you are working I had a series of four infusions with Rituxan, and will continue the infusions every two months…maybe indefinitely. Patient Stories. I agree to the Terms of Use & Privacy Policy. Paulette, Patient Power interviews with Dr. Ansell and Dr. Treon; Consensus treatment recommendations from the tenth International Workshop for Waldenström Macroglobulinaemia Wallace, thanks for the recommendation for the book. on a form, click on the submit button to save your work. Quantitative IgM was 2733 mg/dL. Patient stories. It is good information. A 43‐year‐old male was found to have a hemoglobin of 12.3 g/dL in June 2008. What cancer patients, ... Our team of expert journalists brings you all angles of the cancer story – from breaking news and survivor stories to in-depth insights into cutting-edge research. “After a few numb, tear-filled days of fretting and worrying, my wife and I made the resolution to face the disease head-on — to hang on to the notion that science, faith, and positive energy would find a way to ensure that I would live to see my children through all the important moments in their lives and that we should focus on getting the most out of every day we had left to be together,” he wrote in a 2018 blog post. How Age and COVID-19 Impact a Cancer Patient’s Outlook. My online tagline will be dd, I am in treatment for follicullar nhl T cell stage 3. Disclaimer | Contact Us | Privacy Policy | What Happens Now? My friend and neighbor in Southeastern Illinois was dx with WM several years ago. DeNardis, who is very active with the organization, said awareness of WM is growing. Please enable this He received plasma exchange and 4 doses of rituximab. “So they have huge numbers of possible therapies today. I was also diagnosed with Bursitis and Arthritis a few weeks ago. 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