Dr. Christine Chen from the Princess Margaret Hospital in Toronto presented at the recent Lymphoma Canada National Patient Conference on Lymphoma and CLL which was held on Oct.14th and 15th. This was one of several "breakout" sessions in which different Lymphoma varieties were discussed; it was important that WM was chosen as one of them. Her 45 minute presentation covered the following WM topics: Clinical features of WM How to diagnose WM When to start treatment First-line treatment options Second-line treatments and beyond Special situations And the discussion of treatments is, of course, from a Canadian point of view. Click [...]
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Megan Morrison, Registered Dietitian at the Princess Margaret Cancer Centre Malignant Hematology Program in Toronto spent time with us to talk about the role of nutrition and hydration during our journey with WM. Not everyone was able to attend the presentation live, so we recorded it. You can view the recording here: https://iwmf-wm.zoom.us/rec/share/YSZrtFh49bhnaGCOTpp58MXO19X-dHwbcjoVVpFe8D8w_krB1GClvS0uUXzt0ku2.0M9sTAXUPNvVsyos. You'll need a password to view the video. It is "L$?i+WY7" -- just the characters inside the double quotes. If you are copying and pasting this string, make sure you do not include the double quotes.
Lymphoma Canada has kindly put together a collection of all provincial and territorial recommendations regarding Covid vaccines, for Lymphoma patients. For your convenience, we reproduce their table of provincial links here. But the Lymphoma Canada article goes further, with very valuable Q&As in the Canadian context. It makes for recommended reading if you are concerned. Read their full article here Province Provincial Recommendations for the Third COVID-19 Vaccine Dose British Columbia http://www.bccdc.ca/health-info/diseases-conditions/covid-19/covid-19-vaccine/vaccine-registration-eligibility Alberta https://www.alberta.ca/covid19-vaccine.aspx Saskatchewan https://www.saskatchewan.ca/government/health-care-administration-and-provider-resources/treatment-procedures-and-guidelines/emerging-public-health-issues/2019-novel-coronavirus/covid-19-vaccine/vaccine-booking#check-your-eligibility Manitoba https://www.gov.mb.ca/covid19/vaccine/eligibility-criteria.html Ontario https://www.health.gov.on.ca/en/pro/programs/publichealth/coronavirus/docs/vaccine/COVID-19_vaccination_rec_special_populations.pdf Quebec https://www.quebec.ca/en/health/health-issues/a-z/2019-coronavirus/progress-of-the-covid-19-vaccination/additional-dose-covid-19-vaccine Newfoundland & Labrador https://www.gov.nl.ca/covid-19/vaccine/gettheshot/ Nova Scotia https://novascotia.ca/coronavirus/immunocompromised/ https://www.halifaxtoday.ca/coronavirus-covid-19-local-news/immunocompromised-should-receive-3rd-covid-19-mrna-vaccine-immunization-panel-4321929 Prince Edward Island https://www.cbc.ca/news/canada/prince-edward-island/pei-third-dose-covid-vaccine-immune-compromised-islanders-1.6175366 New Brunswick https://www2.gnb.ca/content/gnb/en/corporate/promo/covid-19/nb-vaccine.html https://en.horizonnb.ca/media/1285743/2021-09-23_declaration_eligibility_third_dose_en.pdf [...]
Ed. Note: Ron Ternoway provides us valuable insights on what it is like to participate in a US-based clinical trial, from Canada, during a Pandemic. It's been over 14 years since my Waldenstrom's diagnosis, and I've spent half of them on clinical trials. I've shared my experiences from the patient point of view, first at the 2017 Phoenix Ed Forum (see link to video and slides below) and then in the October 2020 IWMF Torch newsletter (page 4): https://iwmf.wpengine.com/ron-ternoway-presentations/ https://iwmf.wpengine.com/wp-content/uploads/2020/10/torch-oct-2020.pdf For the past year, in these uncertain COVID times, I have been enrolled in a US-based clinical trial of [...]
Our own Paul Kitchen, our past chair, provided an in-depth look into what it feels like to live with WM. The interview touches on his familial connection with WM, his road to diagnosis, and his travel through various treatments. Read it here!
September 2021: From the WMFC Editorial Board: What's up with CAR T in Canada? New items of interest on our Web site In-person support group meetings not recommended yet The US FDA catches up to Canada by approving Zanubrutinib Launch of Two New Support Groups Request for your WM Doctor's name Rob Murenbeeld Memorial Golf Tournament Volunteers Needed From the WMFC Editorial Board: What's up with CAR T in Canada? CAR T treatment is in the news everywhere. How does it relate to WM? And are there any CAR T trials going on in Canada? Click here to check out [...]
A recent review publication from the experts at the Dana-Farber Cancer Institute in Boston summarizes the most common adverse effects that occur during treatment. The article was published in the journal, "Expert Opinion on Drug Safety". A summary box in the publication states: There are several effective and safe options for the treatment of Waldenström macroglobulinemia although patients should be closely monitored during therapy for the emergence of treatment-specific side effects. Reduction in the number of rituximab-bendamustine treatment cycles may prevent toxicity without compromising disease outcomes. The frequency of bortezomib dosing and the manner of administration can be altered to decrease [...]
The US Leukemia and Lymphoma Society (LLS) has been running a study specifically focused on US patients with Leukemia or Lymphomas, looking at how well the vaccines in use in the US are at creating antibodies in that population. We've previously reported on their overall summary: "Get Vaccinated, Act Un-vaccinated". (And in particular, see the last part of this summary for some excellent FAQs from vaccinated blood cancer patients.) The LLS has recently posted a video given by Dr. Larry Saltzman, the Executive Research Director of the LLS, providing more details behind their results. There are many statistics of interest [...]
In the two decades since I was diagnosed with WM, I have seen many changes in the treatment of our disease. Back then, my conventional treatment options were pretty well limited to cyclophosphamide or fludarabine. Rituximab treatment was reserved for those who had relapsed. How the times have changed! And the future holds even more promise with new and upcoming therapies. One of the most exciting developments is CAR T-cell therapy, which is being used, successfully, on WM patients in clinical trials and is considered to be potentially curative. Unfortunately, Canadian lymphoma CAR T-cell trial sites in Ottawa and Vancouver (NCT03765177) [...]
The IWMF brought Support Group Leaders from the US and Canada together to hear Dr. Morie Gertz of the Mayo Clinic, Rochester, MN. Dr. Gertz’s unique perspective and succinct, perceptive, precise messaging was absolutely priceless. Perhaps most useful to our newer members would be the first 20 minutes, during which he discussed the importance of understanding when to treat WM, and why "watch and wait" was such an important aspect of a treatment plan for WM. This was followed by an engaging Q&A covered everything from understanding COVID antibodies to the importance of consultations at Centers of Excellence to encouraging [...]