WhiMSICAL Newsletter #3
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:
Existing WhiMSICAL members are requested to enter their Quality of Life information in WhiMSICAL Question 20 now and every three months. All WM patients are invited to join WhiMSICAL database at http://www.cart-wheel.org/ . Further details about WhiMSICAL database are at
For questions and support about WhiMSICAL send email to
The WhiMSICAL database was presented in New York in October at the WM International Patient-Physician Summit (IWWM-10) attended by 200 WM investigators.
The findings highlights in the IWWM-10 poster cover:
Promising results for Zanubrutinib (BGB-3111) from early trials were reported by Assoc Prof Con Tam at IWWM-10.
Zanubrutinib is seen to Halt Tumor Progression in 89% of Waldenström’s Macroglobulinemia Patients in a Phase 1 Trial.
Data from an ongoing Phase 1 trial show that BeiGene’s investigational therapy zanubrutinib is highly active in patients with Waldenström’s macroglobulinemia, a rare type of non-Hodgkin lymphoma. In the trial, 92% of patients responded to treatment and 89% were alive and progression-free after one year.
The findings were revealed at the 2018 International Workshop on Waldenström’s Macroglobulinemia (IWWM-10) in New York City in October. Assoc Prof Constantine Tam with the Peter MacCallum Cancer Centre in Australia, delivered the presentation, “Improved depth of response with increased follow-up in phase 1 trial of patients with Waldenström’s macroglobulinemia (WM) treated with oral Bruton tyrosine kinase (BTK) inhibitor zanubrutinib (BGB-3111).”
Further details regarding the presentation are at https://lymphomanewstoday.com/2018/10/26/zanubrutinib-shows-potential-to-treat-waldenstroms-macroglobulinemia-in-phase-1-trial/
Prize for Venetoclax collaborators and researchers has been awarded to Australian Professor John Seymour who is on the IWMF Directory of WM Physicians. The 2018 Victorian Prize for Life Sciences has been jointly received by Professor John Seymour and Professor Andrew Roberts. The prize recognises Prof Seymour and Roberts’ collaboration and research which delivered Venetoclax, the new anti-cancer drug for patients.
Venetoclax is the first drug of an entirely new class of medicines to become routinely available for clinical use. It is based on a basic science discovery made 30 years ago in Melbourne.
Profs Seymour and Roberts led the first in-human clinical trial in 2011. The first three patients to receive the drug, demonstrated its remarkable potential to rapidly melt away chemotherapy-resistant leukaemia.
In 2013 Colin Parrish, WMozzies member, was one of the first WM patients to receive Venetoclax (then known as ABT-199) in a trial conducted by Prof Seymour. Colin told readers of IWMF-Talk in 2014 in glowing terms of this Venetoclax experience after nearly twenty years with WM and many other treatments.
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 lecture on Waldenström’s Macroglobulinemia, featuring Dr. Ansell, Professor of Medicine in the Division of Hematology at the Mayo Clinic, Rochester, MN, is now available. WM topics covered include:
LLS Virtual Lecture Programs offer a convenient opportunity to learn about the latest disease-specific information from medical experts. Dr. Ansell’s pre-recorded presentation on WM will be available to view for approximately 12 – 18 months. You can view the synchronized audio and slides, download the transcript, or request a hard copy of the transcript by contacting the Leukemia & Lymphoma Society at .
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?
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?
Following feedback from WhiMSICAL members, the “Frequently Asked Questions” at http://www.wmozzies.com.au/index.php/whimsical/whimsical-frequently-asked-questions/ has been enhanced with additional explanatory detail. Many screenshots have been included to assist in important areas such as getting started, consent, diagnosis, and pathology results.
Register for WhiMSICAL at: https://www.cart-wheel.org
For further information or assistance send email to: email@example.com
Please remember the cut-off for joining WhiMSICAL and updating details is in a week.
Act now so that your WM details are part of the WhiMSICAL submission to the ASH meeting in December.
[AW1]The efficacy of BGB-3111 (a BTK inhibitor) in WM patients, is shown with Dr. Judith Trotman speaking in a 1 minute 43 second interview, on the website OncLive. The video interview is at: http://www.onclive.com/onclive-tv/dr-trotman-on-bgb3111-in-patients-with-waldenstroms-macroglobulinemia
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.