International Waldenstrom’s Macroglobulinemia Foundation



The worldwide coronavirus outbreak, declared a pandemic by the World Health Organization (WHO) on Wednesday, March 11, continues to be of great concern to WM patients and caregivers around the world.
Dr. Castillo with the Dana Farber Cancer Institute and a member of the IWMF’s Scientific Advisory Committee, has made the following recommendations for WM patients regarding COVID-19. These are general measures only, and specific recommendations should be discussed with your treating physician:
  • Stay at home as much as possible.
  • Avoid travel, unless is necessary.
  • Use a mask and gloves in public places.
  • Delay starting treatment if WM symptoms are manageable.
  • If on treatment with chemotherapy, continue for the minimum number of cycles needed (e.g. just 4 cycles of Benda-R, BDR, CDR, etc.)
  • If on treatment with maintenance rituximab, consider stopping.
  • If on treatment with Bruton tyrosine kinase inhibitors, continue therapy without changes.
  • If develop mild to moderate symptoms that could be COVID19, please stay at home and self-quarantine. Treatment with chemo and/or rituximab should be stopped. Continue BTK inhibitors.
  • If symptoms that could be related to COVID19 are severe or unmanageable, please go to the nearest emergency room. Treatment with chemo and/or rituximab should be stopped. Continue BTK inhibitors, if possible.
  • High serum IgM levels are not protective against COVID19.
  • Current IVIG supply is not protective against COVID19.
  • Testing for COVID19 is unlikely to be affected by high serum IgM levels.
  • Testing for COVID19 can be negative, even if infected, in WM patients who cannot mount a proper immune response (e.g. heavily pretreated patients).

You can obtain the latest information from the following links:

  • WHO (World Health Organization)(link is external) – advice for the public, protective measures, etc.
  • U.S. CDC (Centers for Disease Control)(link is external) – information about, and ways to protect yourself against, the coronavirus.
  • Please join LLS (Leukemia & Lymphoma Society) on April 16 for a special webinar “Calming Anxiety and Fear: Coronavirus (COVID-19)” Julie Larson, a Psychotherapist & Speaker-Educator, will talk about how patients can care for themselves today: fine-tuning self-awareness, seeking control during times of stress and other strategies to navigate the road ahead. Register by clicking here(link is external).
  • Using a cloth face covering can help slow the spread of COVID-19. Learn how to create your own by clicking here(link is external).
  • For CDC recommendations on how to properly put on or remove PPE (personal protective equipment) click here(link is external).
  • If you have questions specific to your personal health situation, please do not hesitate to contact your primary care physician and/or your blood cancer specialist.
  • As we all strive to self-impose quarantine measures and social distancing practices, we should remember that the IWMF does provide “virtual” support services, such as the online discussion list (IWMF Connect); Facebook (IWMF Official page and a private closed support group); and the phone/email-based Lifeline, where a fellow WMer is just a phone call or email away. Should you need social or emotional support, feel free to continue to reach out to the IWMF worldwide community and take advantage of these resources. NOTE: IWMF Affiliates in several countries also have country/region-specific Facebook pages and discussion groups – please visit the IWMF International Affiliates web page for further information (see list here).
In this time of global crisis, the IWMF wishes to extend its concern and support to everyone around the world who is affected by the coronavirus outbreak. Our hope continues to be for a speedy and effective resolution.
Carl Harrington         
IWMF Chair of the Board
Newton Guerin
IWMF, President & CEO


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