We often hear from the Bing Center for Waldenström's Macroglobulinemia at the Dana-Farber Cancer Institute (DFCI). Now let's hear from the Mayo Clinic. Dr. Morie Gertz has published "WM: 2023 Update on Diagnosis, Risk Stratification, and Management", available here. It provides an extensive overview of the literature covering : how WM is diagnosed the risk stratification for the disease the various treatment options (regimens) for WM No new research results are presented; the article is a summary of existing knowledge, and thus can be useful to those looking to refresh their knowledge about the various treatment options. Most useful to the [...]
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Every year, the American Society of Hematology (ASH) conference is an opportunity for the latest hematology research from around the world to be presented. Although conference presentations do not go through peer review (unlike journal articles), they do provide an opportunity to see what is coming down the research pipeline. You can access 68 (!!) items that mention the word "macroglobulinemia" here. Of course, you may not want to look at all of them. So here are a very few, that we think may be of interest. First of all, we would be remiss if we did not point out the [...]
Thanks to an Educational Grant from BeiGene, we are very pleased to bring you two new, professionally-produced items: A Symptom Tracker: Available from our web page here, you can either print this out and write on it, or download it to your device and use it as a fillable form. This is designed for you to track symptoms that you may be aware of, physically; we're afraid you'll have to find your own way if you want to graph and track your blood test results. A new WMFC brochure: Available from a different web page, here. We will be distributing [...]
Breakthrough research by Dr. Zachary Hunter of the Dana-Farber Cancer Institute in Boston, funded by donations to the IWMF and the WMFC A much more detailed and nuanced understanding of the biology of Waldenstrom’s Macroglobulinemia has emerged from research funded by WMFC donors. The study by Dr. Zachary Hunter of the Dana-Farber Cancer Institute in Boston is a very sophisticated search for new research directions -- “Multiomic Analysis of DNA, RNA and Epigenomic Networks in WM”. To conduct a multiomic analysis Dr. Hunter’s research group combined a very broad range of data from various sources; clinical data, mutation studies, [...]
From the American Society of Hematology (ASH) conference, in December (2022): The full abstract title is "Clinical Effectiveness and Long-Term Serologic Responses of COVID-19 Vaccination in Patients with Multiple Myeloma and Waldenström Macroglobulinemia". But let's cut to a very quick summary: As we've long been saying, Covid vaccines work -- even in us WMers!! Now with this added emphasis: get all your Covid vaccinations. In a little more depth: In this abstract, our friends at Dana-Faber plus others undertook a study of 148 patients, 50 with WM and 98 with MM (Multiple Myeloma). They looked at the clinical effectiveness of Covid [...]
Do you have a rare disease? Are you a caregiver for a person with a rare disease? If you're reading this on the WMFC website, then the odds are that you answered "yes" to one of those questions! And so CORD, the Canadian Organization for Rare Disorders, needs your input on: The impact of your rare disease on you and your family, and Your perspectives on how Canadian health systems can improve access to rare disease medicines. They are running a survey for both patients and caregivers to gather your feedback. The second part of the survey, on policies around rare [...]
A History of the Québec Support Group By Danielle Gagnon, Montreal Support Group co-leader and caregiver We first heard of Waldenstrom’s when my husband, Robert Perrault, was diagnosed in August 2019. It is always a shock when you hear the word cancer. We started looking on the web for information about the disease and found that WMFC had support groups in every province, except in Québec. We did not waste any time and in September 2019, went to the closest support group meeting in Ottawa. We were a bit nervous about what we would find out, but it was [...]
Dr. David MacDonald of The Ottawa Hospital provided us with an extremely informative presentation at our National Zoom meeting on Oct. 26, 2022. One of the best presentations, done in layman's terms, covering a set of topics: How does WM originate in the body, and how does it relate to other lymphomas How have drugs been approved for WM in Canada How is WM treated in Canada ... including brief updates on clinical trials that Dr. MacDonald is involved in (and which we have covered in blog posts in the past): BRAWM nemtabrutinib Highly recommended viewing for anyone wanting a refresher [...]
As a Canadian Cancer Charity, for over 20 years we have relied entirely upon dedicated and passionate volunteers to help us offer support and education to WM patients and their families, as well as to raise money for research to ultimately find a cure for WM. To continue expanding this amazing story, WE NEED YOUR HELP! If you have ever considered volunteering for a charity and you have a few hours each week to spend helping our WM efforts, we would love to talk with you. Whatever your experience or time constraints, we can find you a rewarding opportunity. Specifically, we [...]
The Gastrointestinal Society has created a COVID-19 Resource Hub. Information about it says: “Everything you need to know about COVID-19, including information on symptoms, prevention, testing, treatments, and variants is available in one place at www.badgut.org/covid-19. The site includes active links to each province and territory so you can quickly learn your eligibility for vaccines, testing, and medications, as well as the availability of services in your area, no matter whether you have a gastrointestinal condition or not.” Of particular interest are: The page on Covid-19 prevention (https://badgut.org/covid-19/prevention/), which includes links to the web page of each province and territory for [...]