WMozzies along with its affiliate the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a patient-founded and patient-led, non-profit organisation that is dedicated to a simple but compelling vision:

Support everyone affected by Waldenström’s Macroglobulinemia (WM) while advancing the search for a cure.

To accomplish this vision, WMozzies supported by IWMF offers WM patients, caregivers, family members and friends invaluable services:

Information written in a patient-friendly way to promote understanding of our rare disease
Peer support from others who’ve been where you are

WMozzies in Australia also works with the Leukaemia Foundation (LF) in supporting the WMozzies community.

LF’s highly trained support service team, consists of some fifty nurses, social workers, psychologists and administration staff.
Support services are available in 28 offices, both in metropolitan, regional and rural areas throughout Australia. Services provided by LF for WMozzies include information, emotional support, education programs, and advocacy.

Anyone with an interest in WM can become a member of the WMozzies – to learn how, Join Us.

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WhiMSICAL Study’s first public presentation was at Friday’s Cancer Institute NSW Conference by Co-Principal Investigator Dr Ibrahim Tohidi Esfahani. The Sydney conference on Innovations in Cancer Treatment and Care was attended by 430 in Sydney. A report on the Presentation is given on the WMozzies website With over 50 participants now in the WhiMSICAL Study “Project 100”, is aiming to recruit 100 Australian participants. This is to enhance the Study’s feasibility demonstration and to garner international support to achieve “Project 1000”. The “Big Data” obtained from this level of participation will give significant power to the study to provide the medical community with a better real-world understanding of this disease and its therapies, internationally. As participation in the study increases, the power of this research will grow, identifying real-world experiences of WM patients, including treatments received and the disparities between regions and countries. Coupled with information regarding treatment efficacy, this may facilitate and strengthen applications for access to subsidised novel therapies. L Study presentation at Cancer Institute NSW Conference by Co-Principal Investigator Dr Ibrahim Tohidi-Esfahani

September 18, 2016September 18, 2016

WhiMSICAL Study Presentation at Cancer Institute NSW Sydney Conference on Innovations in Cancer Treatment & Care

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WhiMSICAL Study’s first public presentation was at Cancer Institute NSW Conference by Co-Principal Investigator Dr Ibrahim Tohidi Esfahani. The 16 September Sydney conference on Innovations in Cancer Treatment and Care was attended by 430. The Presentation on YouTube will be available soon on the Cancer Institute NSW website. In the meantime a selection of the presentation slides are included below.

WhiMSICAL "Project 100"

With over 50 participants now in the WhiMSICAL Study “Project 100”, is aiming to recruit 100 Australian participants. This is to enhance the Study’s feasibility demonstration and to garner international support to achieve “Project 1000”. The “Big Data” obtained from this level of participation will give significant power to the study to provide the medical community with a better real-world understanding of this disease and its therapies, internationally.

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As participation in the study increases, the power of this research will grow, identifying real-world experiences of WM patients, including treatments received and the disparities between regions and countries. Coupled with information regarding treatment efficacy, this may facilitate and strengthen applications for access to subsidised novel therapies. WMozzies not already in WhiMSICAL are encouraged to: ① Take part! http://www.wmozzies.com.au/index.php/about-us/our-history/australian-research-projects/ Every single person counts. Ensure your consent form is emailed to contact@cart-wheel.org, as your then de-identified data cannot otherwise be used. ② If you have any questions or need assistance in joining WhiMSICAL, contact Andrew Warden Mobile 0408 303 718 Email andrew.warden@bigpond.com

WMozzies already in WhiMSICAL are encouraged to:

① Return to CART-WHEEL and update your data. Currently, ~ 50% of questions have incomplete answers. You are strongly encouraged to print out your CART-WHEEL summary and review it with your doctor, particularly to answer the more difficult questions, such as IgM levels, % bone marrow involvement at diagnosis and how each treatment was accessed. ② When responding to the questions on symptoms and pathology results, entries can be restricted to those at diagnosis, and before and after each treatment. ③ If you are having any difficulties with the questionnaire, contact Andrew Warden Mobile 0408 303 718 Email andrew.warden@bigpond.com

WhiMSICAL Study Presentation Slides

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Letter sent to Parliamentarians on Access to Cancer Treatment

June 6, 2016June 6, 2016

WMozzies was amongst ten cancer organisations representing 500,000 Australians living with cancer in a letter to leaders of the major political parties. Each leader was asked to respond and endorse the Senate Community Affairs Committee’s recommendations regarding access to new, innovative and specialist cancer medicines: The following aspects were of particular interest:

Increased consumer involvement in all aspects of PBAC decision making and in any review of the registration and subsidisation processes
Improved flexibility in regulations around the access and analysis of data, particularly combined MBS and PBS data

Establishment of a National Register of Cancer Medicines to ensure we can make assessment of the value of all medicines

The upgraded CART-WHEEL application with WhiMSICAL project is now live.

June 1, 2016June 1, 2016

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WM patients in all countries are invited to participate in this important initiative.

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In Australia data provided by WhiMSICAL is needed to support applications to regulatory authorities to gain treatment funding approval under the Pharmaceutical Benefits Scheme (PBS). Currently PBS funding for WM is not available or has restrictions for available world-wide novel WM treatments such as Bendamustine and ibrutinib (IMBRUVICA) With other countries data from WM patients can be be analysed by WhiMSICAL on a country basis for inclusion as supporting evidence to the applicable funding regulatory authorities. What is WhiMSICAL? WhiMSICAL is an Australia-initiated, global clinical trial inviting Waldenström’s Macroglobulinemia (WM) patients to provide their clinical data, which will help advance current knowledge and understanding of this disease. CART-WHEEL (Center for Analysis of Rare Tumors) is a database designed to address some of the barriers facing effective research into rare cancers How does it work? CART-WHEEL uses a privacy-protected, internet-based questionnaire. WM patients complete this questionnaire on the CART-WHEEL.org website and have control over personal details by providing consent to different uses of entered data. The questions cover areas including:

Patient demographics
Disease specifics: staging, chronology of symptoms, IgM levels, full blood count information, Somatic MYD88 and CXCR4 mutation status, etc.
Treatments, how they were accessed, and treatment side-effects
Personal and family medical history

Gathered information is stored securely and treated confidentially. It is analysed by WhiMSICAL and CART-WHEEL researchers only, to gain a better understanding of WM. Participants can print out a summary of the questions and responses (their profile) for their records and/or review with their specialist. Profiles can be updated at any time and patients are encouraged to do this regularly, e.g. every 6 months. How Can I take Part? If you would like to take part, please visit the CART-WHEEL website website www.cart-wheel.org ,fill in and post the consent form and enter your information. Your data cannot be utilised for research until the consent form has been received. THANK YOU FOR YOUR INVALUABLE HELP!! If you have any queries about the WhiMSICAL Study, please contact: A/Prof Judith Trotman, Dr Ibrahim Tohidi-Esfahani (Principal Investigators) Concord Repatriation General Hospital, Concord, NSW, 2139 Phone: +61 2 9767 7243

Significant impact of ibrutinib on the WM community

November 30, 2015November 30, 2015

Sep 28, 2015

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OncLive, the official website for the Oncology Specialty Group, published a video on September 18, 2015, in which two researchers discuss the significant impact of ibrutinib on the WM community. (Courtesy IWMF website) In the video, Jennifer Brown, MD, PhD, of Dana-Farber Cancer Institute and Richard Furman, MD, noted WM researcher/clinician from Weill Cornell Medical College, discuss the recent approval of ibrutinib therapy for WM patients, along with their perspective on the impact of ibrutinib on WM patients and what the future holds for ibrutinib-based therapy. The video can be found here(link is external). OncLive(link is external) provides publications, videos, and other information and resources to oncology professionals to enable them to provide enhanced patient care.

Dr. Steven Treon presentations at the Lymphoma Research Foundation Educational Forum

November 30, 2015

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Nov 22, 2015

Dr. Steven Treon from Dana-Farber Cancer Institute recently gave two presentations at the Lymphoma Research Foundation (LRF) Educational Forum that are now available online. The two presentations are:

“Waldenstrom’s Macroglobulinemia-Part A” (Biology of Waldenstrom’s Macroglobulinemia), which discusses MYD88 and CXCR4 and identifies two new clinical trials.
“Waldenstrom’s Macroglobulinemia-Part B” (Treatment of Waldenstrom’s Macroglobulinemia), which covers current and future therapies and includes information about a third new clinical trial.

You can listen to Dr. Treon’s presentations and view his slides here(link is external) by selecting each one under the session topic Disease-Specific Programs. At the end of the second lecture, you will be able to practice your diagnosis and treatment options assessment skills by listening to Dr. Treon and those in attendance review two WM patient cases and by comparing your decisions to those provided by Dr. Treon. WMozzies joins the IWMF in extending its thanks to the LRF for making these presentations available and to Dr. Treon for continuing to push the boundaries of knowledge about WM and its treatments. The Lymphoma Research Foundation provides educational webcast and podcast programs for people with lymphoma and their caregivers on specific types of lymphoma, treatment options, and patient support topics.

US National Comprehensive Cancer Network (NCCN) publishes updated treatment guidelines for Waldenstrom’s macroglobulinemia (WM)

November 15, 2015November 15, 2015

Each year, the US National Comprehensive Cancer Network (NCCN) publishes updated treatment guidelines for various forms of cancer, including Waldenstrom’s macroglobulinemia (WM). On September 16, 2015, the NCCN updated its guidelines for WM. The significant changes that are in this year’s guidelines are as follows:

MYD88 L265P AS-PCR testing of bone marrow at diagnosis has been moved from “useful in certain circumstances” to “essential.” This means that, in addition to immunophenotyping, CBC, CMP, immunofixation/electrophoresis, serum viscosity, chest/abdominal/pelvic CT scan, bone marrow biopsy, and beta-2 microglobulin, MYD88 testing is now considered a necessary part of the diagnostic battery of tests.
The IgM threshold for considering plasmapheresis before treatment with monoclonal antibodies (due to potential for “flaring”) has been lowered from 5,000 mg/dl to 4,000 mg/dl.

A link to the complete guidelines can be found on the IWMF website. Note: you must establish an account on the NCCN website to login and view the guidelines. The NCCN is a not-for-profit alliance of 26 of the leading cancer centers in the US (including Dana-Farber Cancer Institute, Mayo Clinic, and MD Anderson Cancer Center). Its vision is to be the world’s leader in defining and advancing high-quality, high-value cancer care. See: http://www.nccn.org(link is external).