The Library is a compendium of publications, presentations, webpages, and videos that provide information about the pathophysiology and treatment of WM and how to live with the disease.
Educational Forum Presentations and Videos
Additional Publications, Presentations, and Webpages
Other Video Presentations
Great interest has been shown in the WhiMSICAL Registry June 2019 presentations regarding WM treatment diversity. The marked treatment diversity with 41 unique first-line combinations WM patients was a highlight.
The finding amazed WM patients, at the IWMF Educational Forum in Philadelphia and WM Clinicians and Researchers at ICML Conference in Lugarno.. The WhiMSICAL Registry Principal Investigators and International Authors are shown below with the WhiMSICAL Poster displayed at the International Conference on Malignant Lymphoma at Lugarno Switzerland in June 2019.
Great interest also was expressed regarding the WhiMSICAL presentation’s Sunburst Chart as below showing the 9 most common therapies. Bendamustine with Rituximab was the most common therapy.
The value of such findings will increase as the number of WhiMSICAL participants grows from the current 400 members to the WhiMSICAL Big Data goal of 1,000 members.
All WM patients are encouraged by IWMF to join the WhiMSICAL RESEARCH study and regularly update their progressive results. Please be part of this important WM research and “pay it forward” to help current and future WM patients around the world.
CLICK on the following link to Join WhiMSICAL database
https://apps.biogrid.org.au/cart-wheel/gui/Patient/Register.aspx
Useful LINKS are available on the following:
General information – WhiMSICAL Registry http://www.wmozzies.com.au/index.php/whimsical/
Support from WM patients using WhiMSICAL whimsical@iwmf.com
Technical support and user problems: WhiMSICAL CART-WHEEL contact@cart-wheel.org
Frequently Asked Questions http://www.wmozzies.com.au/index.php/whimsical/whimsical-frequently-asked-questions/
The WhiMSICAL Study Question 20 now includes a globally validated Quality of Life questionnaire (EORTC QLQ-C30). This world first will allow researchers to map quality of life data to treatments, assisting applications to funding bodies for approval of new treatments for WM. This Patient Reported Outcome (PRO) addition to WhiMSICAL was launched at the WM International Patient-Physician Summit IWWM-10 in New York on 11 October 2018. The Questionnaire is used to assess the quality of life of cancer patients in more than 5,000 studies annually in over 100 countries.
The Quality of Life questionnaire of 30 items covers aspects of the cancer patients’ symptoms and side effects of treatment. It includes:
Further details regarding the presentation are at https://lymphomanewstoday.com/2018/10/26/zanubrutinib-shows-potential-to-treat-waldenstroms-macroglobulinemia-in-phase-1-trial/
Prof Seymour is Director of the Department of Haematology at Peter Mac and the Royal Melbourne Hospital. Professor Roberts is Head of Clinical Translation at the Walter and Eliza Hall Institute, Metcalf Chair of Leukemia Research at the University of Melbourne, and a clinical haematologist at Peter Mac and Royal Melbourne Hospital.
Profs Seymour and Roberts discuss their research on YouTube at https://www.youtube.com/watch?v=zZjMsvEE0ds
The IWMF Frequently Asked Questions Booklet has been updated to reflect the most current knowledge about shingles and WM, and the new Shingrix vaccine.
The booklet is available at https://www.iwmf.com/system/files/FrequentlyAskedQuestions.pdf
It also gives much useful information on the questions listed below.
INITIAL KEY QUESTIONS
What is WM?
What’s the difference between WM and LPL (lymphoplasmacytic lymphoma)? Are they the same disease?
My doctor said WM was a rare disease.
How rare is it? What does that mean for me?
Is there a cure for WM? How long do I have left to live?
Should I get a second opinion? If so when?
How do I find a good doctor for a second opinion?
When should I get treatment?
What treatments are approved for WM?
GENERAL QUESTIONS
Should I get the shingles vaccine?
Should I get a flu shot? What about the nasal mist vaccination?
Should I get the pneumonia vaccine?
What should I do to protect my immune system?
Will I still be able to travel?
How often should I see my hematologist/oncologist?
OTHER QUESTIONS ABOUT WM
Who was Waldenström? What does “macroglobulinemia” mean?
What is IgM and how does it relate to WM?
What causes WM? Is there an environmental cause?
What is IgM MGUS?
Is there a familial predisposition to WM? Do I have to worry about my kids getting it?
If I have WM, do I have a greater risk for other cancers?
What is MYD88 and what is the MYD88 mutation I’ve heard about in WM patients?
What is the significance of the MYD88 L265P mutation in WM?
Are there other gene mutations important in WM?
QUESTIONS ABOUT SIGNS AND SYMPTOMS
What are the common signs and symptoms of WM? What is the connection between WM and fatigue?
What kind of skin problems are related to WM?
What is the cause of night sweats in WM?
How can WM affect my eyes?
What is peripheral neuropathy? What does it feel like?
How can I treat my peripheral neuropathy? Will it improve with treatment?
What is hyperviscosity? What is plasmapheresis? Why is done? What should I do before, during, and after plasmapheresis?
QUESTIONS ABOUT DIAGNOSIS AND TESTS
How is WM diagnosed?
What is a bone marrow biopsy? What should I expect?
How often do I need to have a bone marrow biopsy?
Which measurement is more reliable/valuable – IgM or SV (serum viscosity)?
Are IgG and IgA levels an important measurement to follow too?
What are the key numbers in my blood testing?
QUESTIONS ABOUT TREATMENT
Why am I on watch and wait and not being treated if I have a cancer?
What can I expect from treatment for WM?
What can I do for myself?
Are there any foods that are beneficial or harmful to eat while in treatment? Are there any alternative medicine treatments for WM?
Are there any treatments that target the MYD88 mutation in WM patients?
What if my treatment doesn't work?
What are some of the other “late and rare” complications of WM?
Judith Trotman, MD, clinical associate professor, medicine, Concord Clinical School, The University of Sydney and is the co-principal investigator on the WhiMSICAL WM Patient Database http://www.wmozzies.com.au/index.php/whimsical/
discusses results of a trial investigating BGB-3111 in patients with Waldenström’s macroglobulinemia (WM).
BGB-3111 is a very specific BTK inhibitor that has a very high, very good partial response (VGPR) rate in patients with WM, Trotman explains. Results showed that patients with WM did have very good responses with reduction in IgM from 33 g/L to 6 g/L and a rise in hemoglobin from 100 g/L to 140 g/L.
Patients also tolerated the drug well without any of the toxicities often seen with BTK inhibitors. Adverse events included very minimal bruising as well as minimal serious bleeding. This was an extremely well tolerated BTK inhibitor, with an overall response rate of 90% with 43% of patients achieving VGPR. "What's most important is that the patients feel fantastic on this agent! How can you quantitate energy? , she adds.
