Professor Judith Trotman – promotion by University of Sydney

Congratulations to Professor Judith Trotman on her well-deserved promotion to Clinical Professor at University of Sydney in recognition for her pioneering work on PET in follicular lymphoma.  Her comment on her appointment was “All made possible in collaboration with the French, Italians and best of British. Lots more to do.”   Results of her team published in Lancet Haematology, showed that patients with a positive PET-CT scan after rituximab treatment had significantly greater risk for progression and death compared with patients with a negative scan. For more detail see http://www.cancernetwork.com/hematologic-malignancies/pet-ct-outperforms-ct-follicular-lymphoma

 

Professor Trotman is better known to WMozzies for her role as the Director of the Haematology Clinical Research Unit and a Senior Staff Specialist at Concord Repatriation Hospital, Sydney. Professionally she has built a broad clinical trial portfolio in the treatment of blood cancers with particular expertise across the spectrum of lymphoma importantly including Waldenström’s Macroglobulinemia. Committed to clinical research, Judith and her team have built one of the largest clinical research units in Australia. She is also the Principal Investigator for the WhiMSICAL database for WM patients. WhiMSICAL is the only database thus far that collects patient data from around the world in one centralized location. http://www.wmozzies.com.au/index.php/whimsical/

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:

  • Who needs treatment at presentation
  • Treatment options for newly diagnosed and relapsed patients

To see Dr. Ansell’s lecture, available at The Leukemia & Lymphoma Society (LLS) website, click here.

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 feedback@LLS.org (link sends e-mail).

                 WhiMSICAL Database Newsletter #2 now available

WhiMSICAL Newsletter #2 DOWNLOAD <——-  Select “DOWNLOAD” for copy of WhiMSICAL Newsletter #2

Pay it forward

IWMF President Carl Harrison has driven the international rollout of WhiMSICAL with the key message of “Pay it forward”.  He has called on WM patients to join the WhiMSICAL database to help inform themselves and WM researchers across the globe as we advance towards a cure for current and future WM patients around the world. Joining benefits all WMers and is a personal scientific contribution to conquering WM. WhiMSICAL is the only database that collects patient data from around the world in one centralized location. Every single patient matters as their joining moves us forward towards “big data” collection for Waldenström’s Macroglobulinemia on behalf of patients, caregivers, scientists, researchers, and clinicians around the world! Big data will help to identify new disease patterns and real-world outcomes that will drive WM research forward. Consider it your opportunity to personally advance research into eradicating WM.

What can you do?

 

  1. Take part! Every single person counts. Ensure your online consent form is completed (“My Consent Details” tab top right of log in page) as your data cannot be used otherwise
  2. Spread the word, to your WM doctor and community.
  3. Regularly (six monthly) return to CART-Wheel.org and update your data to maximize its value for WM research. Currently approximately 60% of questions have incomplete answers
  4. When responding to the questions on symptoms and pathology results, focus on entries at diagnosis, before and after each treatment first
  5. If you are having any difficulties with the questionnaire, contact us at   whimsical@iwmf.com

 

Patient’s voice and experience

 

The European Consortium for Waldenström’s Macroglobulinemia has proposed WhiMSICAL for WM patients to use as a platform for recording the patient’s experience.  “We urge WM patients globally to contribute the patient voice, your experience, to WhiMSICAL”.  Professor Buske, ECWM Coordinator, said WhiMSICAL “data provides the patient voice so instrumental in informing and driving medical research to focus on the priorities of patients”.

Tool for every WM patient

WM patients can consider WhiMSICAL to be their living document, to increase their health literacy and engage them in their healthcare. WhiMSICAL automatically provides a handy test results graph

Active participation in their own data collection and ongoing input empowers WM patients and encourages prioritisation of their health. WhiMSICAL assists networking for patients who often feel isolated and influences community culture to better engage in health developments. The WhiMSICAL summary of their medical story at the end of the questionnaire facilitates discussions with healthcare professionals in reviewing disease history, monitoring progress and considering treatment options.

 

WhiMSICAL database presentation at ASH

The WhiMSICAL database was presented in December at the American Society of Hematology (ASH) annual meeting in Atlanta, with over 20,000 haematologists and researchers attending.

The ASH poster demonstrated the feasibility of the WhiMSICAL database as a patient-derived data registry.  Highlights from the WhiMSICAL database include:

  • The 279 participants were predominantly from the USA (45%) and Australia (23%)
  • Median age at participation was 67 years (up to 85 years!) and at diagnosis 60 years
  • Fatigue was the most common symptom at diagnosis (44%)
  • From diagnosis to first treatment, median time was 82 days. Median for USA patients was 48 days and Rest of World was 122 days.
  • Forty different first-line treatment combinations were entered by 173 patients
  • Most patients had only one line of therapy (47%) or were untreated (24%)

 

None of the research would have been possible without the 279 WM patients who have contributed their de-identified data, tumour/bone marrow details and gene testing, reports from clinicians, treatments, side-effects and other psychosocial and family history information via the CART-Wheel.org  database. The research community owes them a debt of gratitude for the time and effort that went into taking part.

 

What next?

 

To demonstrate the value of patient-derived data to the research community, a validation exercise is in progress comparing the accuracy of patient entered details against clinical records.

In 2018, an addition to the database is also planned to have WhiMSICAL participants provide ongoing Quality of Life (QOL) data. QOL measures are needed for guiding clinical trials, registries, clinical practice, and more recently, drug approval.

WhiMSICAL recruitment is at 30% of goal

 

The WhiMSICAL Database was launched in Australia in June 2016.  The local recruitment drive demonstrated initial project feasibility with 69 participants. Following international promotion in May 2017, this increased to 296 participants from 14 countries. This is 30% of the “big data” goal of 1,000 members.

 

                                                  “Pay it forward and add your voice to WhiMSICAL

Quick Links

 

Further details about WhiMSICAL database are at:  www.wmozzies.com.au/index.php/whimsical/

www.wmozzies.com.au/index.php/whimsical/whimsical-frequently-asked-questions/

Support from WM patients using WhiMSICAL  whimsical@iwmf.com

Technical support and user problems: WhiMSICAL CART-WHEEL:   contact@cart-wheel.org

 

 

 

 

 

 

IWMF Frequently asked Questions booklet updated

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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?

  • Diffuse Large- Cell B-Cell Lymphoma
  • Amyloidosis
  • Cryoglobulinemia
  • Hypogammaglobinemia
  • Bing Neel Syndrome

 

European Consortium for Waldenström’s Macroglobulinemia (ECWM) has given strong support WhiMSICAL database. Prof Dr med Christian Buske, University Hospital Ulm, Germany Coordinator of ECWM in the following letter states:

 

“We urge WM patients globally to contribute the patient voice, your experience, to WhiMSICAL”.  

 

Key points of the ECWM endorsement as below include:

  • WhiMSICAL database provides the patient voice so instrumental in informing and driving medical research to focus on the priorities of patients.
  • ECWM is strongly committed to a partnership with WhiMSICAL Investigators to give scientific scrutiny to its data and work towards achieving a long and healthy life for all patients with WM
  • ECWM looks forward to the comparative analysis of the experiences of participants internationally.
  • Planned Patient Reported outcomes (PROs) can shape future research and treatments of WM
  • PROs can quantify symptoms as well as access to therapies and the side-effects of these therapies

ECWM membership is from Czechoslovakia, France, Germany, Greece, Italy, Netherlands, Portugal, Spain, Sweden and UK in association with the Australasian Leukaemia & Lymphoma Group (ALLG). ECWM Members include 9 WM physicians who are in the IWMF WM Physicians Directory. ALLG members include Australian WM physicians Professor John Seymour and A/Professors Judith Trotman and Constantine Tam.

10th International Workshop on Waldenström’s Macroglobulinemia Patient Conference, October 14, 2018, New York

The IWWM-10 International Doctor- Patient Forum will be held on October 14, 2018 at the NY Marriott Downtown Hotel in the heart of New York City, USA. 

This educational forum for WM patients and caregivers will follow the 10th International Workshop on Waldenström’s Macroglobulinemia for researchers and clinicians.

The NY Marriott Downtown Hotel is located at 85 West Street in lower Manhattan, near Battery Park, Wall Street and the 9/11 Memorial and Museum.

 

WhiMSICAL “Frequently Asked Questions” enhanced

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:        whimsical@iwmf.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.

VIDEO: Dr. Trotman on BGB-3111 in Patients with WM

 

[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.

 

WMozzies information flyer 


The new WMozzies flyer is now available. It provides information about WMozzies and the support services provided to Waldenström’s Macroglobulinemia patients throughout Australia.

It is produced in  a 3 column double  sided fold-out format as shown below.

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WM incidence in Australia

Australia has around  90 new cases of WM annually.  Graham W one of our whizz WMozzies researches in Sydney has extracted the latest information from the official Australian Government statistics of the Australian Institute of Health and Welfare as below.   This includes the:

·       WM incidence in Australia 2001-13

·       WM incidence by Age

·       Australian WM population incidence compared to United States

It is estimated that about 10% of WM patients are members of WMozzies.

A new WMozzies A5 flyer has been drafted to assist recruitment of new WMozzies members