News and Events

  • Be part of an international effort to cure Waldenström’s macroglobulinemia (WM)

    With your help, WMozzies  is looking to raise  $150,000 over the next 2 years in support of the  Research Strategy . With thanks to an incredible supporter, the first $40,000 in donations will be dollar matched up until 30 June 2020. By donating today, your gift will have a twice the impact. Be part of the next WM breakthrough and ensure people living with WM all around the world are given the best...
    June 4, 2020
  • WM Patients anywhere in the world can participate, whether or not they have been tested, or had the infection. All WM Patients can complete the Registry questionnaire, which now includes COVID-19 specific questions. To take part:
    • Existing WhiMSICAL members can login  click here
    • New participants should:
      • Register  click here and set  password and security questions
      • Start the questionnaire and Go to questions 1-2  click here  and enter personal and contact details
      • Go to...
    April 14, 2020
  •        

    The Australian Government has identified people with chronic medical conditions and compromised immune systems such as WM as being most at risk to contracting COVID-19. https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert/advice-for-people-at-risk-of-coronavirus-covid-19 

         

    The IWMF has published recommendations for WM patients regarding COVID-19 at

    April 12, 2020
  • WhiMSICAL Registry Presentations June 2019

    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...
    July 14, 2019
  • World first WM PRO Quality of Life questionnaire added to WhiMSICAL

    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...
    October 27, 2018
  • 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%...
  • Prize for Venetoclax

    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...
    October 25, 2018
    1. Virtual Lecture on WM

    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...
    April 25, 2018
  • 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...
    March 4, 2018
    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...
    September 16, 2017

Be part of an international effort to cure Waldenström’s macroglobulinemia (WM)

With your help, WMozzies  is looking to raise  $150,000 over the next 2 years in support of the  Research Strategy .

With thanks to an incredible supporter, the first $40,000 in donations will be dollar matched up until 30 June 2020. By donating today, your gift will have a twice the impact.

Be part of the next WM breakthrough and ensure people living with WM all around the world are given the best possible chance at curing our WM disease.

Help ensure people living with WM are not left behind

WM receives lower levels of research funding than many other forms of blood cancer and there are fewer opportunities for patients to access clinical trials. Therefore, investment in research is desperately needed to understand the drivers of WM, and to develop more targeted and effective therapies for people living with WM. The international WM community has come together to co-fund exciting research through the IWMF-LLS Strategic Research Roadmap Initiative.

 

 

IWMF-LLS Strategic Research Roadmap Initiative

The International Waldenström’s Macroglobulinemia Foundation (IWMF) and The Leukaemia and Lymphoma Society (LLS)  have developed the  IWMF-LLS Strategic Research Roadmap Initiative to help further knowledge in four key domains of WM research:

  • Genomics and epigenomics
  • Signalling
  • Immunology/immunotherapy
  • Bone marrow/tumour microenvironment

This research is to better understand the biology of WM, with the goals of improving quality of life for WM patients, discovering new treatments, and ultimately, finding a cure.  Read more at Strategic Research Roadmap.

Under the Roadmap Initiative, the IWMF awards Roadmap grants for 2-4 new research proposals each year, depending on funding availability.

All proposals from around the world including Australia are reviewed by an independent committee composed of selected members of the IWMF Scientific Advisory Committee and other experts in the field.

 

On behalf of the Waldenström’s community I ask for your help to support this vital initiative by making a tax-deductible donation to the Leukaemia Foundation before 30 June. You can make your gift online at DONATE here.

We are a small, but passionate group of people who I believe can make this happen through our collective efforts. No gift is too big or too small. I encourage you to share this donation request with your relatives, friends, and work colleagues.

Each gift will ensure that the pursuit for more effective, less toxic, and curative therapies for WM continues. More than ever these researchers need our support to keep going, as charities and research institutions face financial uncertainty and challenges.

Through this crisis, I have found hope and comfort from seeing the many ways people are uniting and looking out for each other. Thank you for being part of our community.

Andrew Warden

 

WM Patients anywhere in the world can participate, whether or not they have been tested, or had the infection. All WM Patients can complete the Registry questionnaire, which now includes COVID-19 specific questions. To take part:

  • Existing WhiMSICAL members can login  click here
  • New participants should:
    • Register  click here and set  password and security questions
    • Start the questionnaire and Go to questions 1-2  click here  and enter personal and contact details
    • Go to question 3 and Enter “Waldenstrom’s macroglobulinemia” as your diagnosis
    • Complete consent  click here
  • New and existing members should then all:
    • Go to Question 19  click here and complete the COVID-19 questions. Where applicable, Enter the results of any COVID-19 test as soon as it is available and afterwards, return to update how COVID-19 has impacted you. If you become unwell, you can have your close ones update your answers for you (with your login details). That way you will be helping researchers get the full picture of how severely COVID-19 impacts WM patients.
    • Go to Question 9 and enter or update details of treatment
    • Go to Questions 20 and 21) and enter current quality of life details

When convenient all participants are encouraged to enter or update details in other questions. This is important to provide the big-data so WhiMSICAL Registry can fully describe the WM patient experience. This is a valuable project that you can complete in stages during your social distancing!

For further information on WhiMSICAL, click here (link),     or contact whimsical@iwmf.com       or phone Andrew Warden Mob.0408 303 718

 

 

 

 

The Australian Government has identified people with chronic medical conditions and compromised immune systems such as WM as being most at risk to contracting COVID-19. https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert/advice-for-people-at-risk-of-coronavirus-covid-19 

 

 

 

The IWMF has published recommendations for WM patients regarding COVID-19 at https://www.iwmf.com/news-and-events/news/wm-coronavirus-and-iwmf-%E2%80%93-%EF%BB%BFapril-6-update

 

Advice regarding COVID -19 for Australian WM patients is provided below by three WM specialists at three major WM Cancer Centres in conjunction with world-wide WM resources. Issues addressed in the advice are:

  • What is COVID-19?
  • I have been diagnosed with WM; am I in the high risk or vulnerable group?
  • I have WM but have never been treated: am I still in the vulnerable group?
  • I have WM and have been treated previously: what is my risk?
  • I have WM and am receiving treatment now: what should I do?
  • I have been informed that I need to start treatment for the first time: will that change?
  • Is my treatment likely to be changed?
  • I have already started treatment: will anything change?
  • I have early signs of relapse: how is that likely to be managed?
  • I am enrolled in a clinical trial: what should I do?
  • Will there be an impact on supportive treatments for WM?
  • Immunoglobulin infusions (IVIG)
  • Is testing to establish if I have COVID-19 (serological testing) likely to be affected by clonal IgM in patients with WM?
  • How can I minimise my visits to the hospital?
  • What else do I need to know?
  • I am worried that I have COVID-19: what should I do?

The WhiMSICAL Registry has been enhanced to include specific questions regarding the impact of COVID-19 on WM patients as detailed at                                             http://www.wmozzies.com.au/index.php/news-and-events/news/

 

 

 

 

What is COVID-19?

Coronaviruses are a group of viruses that can affect humans and animals. Some members of the coronavirus family cause mild illnesses, such as the common cold and gastrointestinal infections, whereas other members of the same family can cause severe illness, such as SARS (Severe Acute Respiratory Syndrome) and MERS (Middle East Respiratory Syndrome).

There is currently an outbreak of a disease caused by a new strain of coronavirus that is called the SARS-CoV-2-associated coronavirus disease 2019 (COVID-19). COVID-19 causes a spectrum of illness, from mild to very severe, similar to SARS and MERS. The outbreak started in a province of China and has spread to many other countries outside of China. The virus can be spread from person to person, so good hygiene is very important in slowing the spread of infection.

Resources provided by the ACT Government are provided here:

https://www.covid19.act.gov.au/resources. These are regularly updated.

Answers to frequently asked questions can be found here: https://www.covid19.act.gov.au/faqs

There are currently no treatments or vaccines for COVID-19.

 

I have been diagnosed with WM; am I in the high risk or vulnerable group?

 

At present, the following patients are classified as vulnerable:

  • at least 70 years of age or
  • already under treatment for chronic health conditions or are immune compromised are classified as vulnerable, or
  • have been diagnosed with COVID-19 virus or
  • have been required to isolate themselves in quarantine; or
  • the person meets the current national triage protocol criteria for suspected COVID-19 infection

People at any age with significant immunosuppression are defined as those with:

  • Haematologic neoplasms: leukemias, lymphomas, myelodysplastic syndromes
  • Post-transplant: solid organ (on immunosuppressive therapy), haematopoietic stem cell transplant (within 24 months or on treatment for GVHD)
  • Immunocompromised due to primary or acquired immunodeficiency (including HIV infection)
  • Current chemotherapy or radiotherapy
  • High-dose corticosteroids (≥20 mg of prednisone per day, or equivalent) for ≥14 days
  • All biologics and most disease-modifying anti-rheumatic drugs (DMARDs) as defined as follows:
    • Azathioprine >3.0 mg/kg/day
    • 6-Mercaptopurine >1.5 mg/kg/day
    • Methotrexate >0.4 mg/kg/week
    • Prednisone >20 mg/day. If <14 days treatment, can resume work when treatment ceased
    • Tacrolimus (any dose)
    • Cyclosporine (any dose)
    • Cyclophosphamide (any dose)
    • Mycophenolate (any dose)
    • Combination (multiple) DMARDs irrespective of dose

All patients with WM are therefore classified as vulnerable.

 

I have WM but have never been treated: am I still in the vulnerable group?

WM is an indolent (slow or chronic) lymphoma with distinct features and treatment options.

Just having the disease may increase the risk of lowering immunity, because people with WM often produce fewer antibodies than normal. This may not be significant under normal circumstances but in this time of COVID-19, we are assuming that everyone in the so-called ‘Watch and Wait’ category is potentially at risk.

This is why people at any stage of their disease are included in the vulnerable category.

I have WM and have been treated previously: what is my risk?

Many treatments used in WM do lower the immune system but it is not known how long this effect persists or how they may affect the body’s response to COVID-19.

  • This is because testing of the immune system in routine practice is not feasible and not required in most cases
  • During chemotherapy treatment, the white blood count (the neutrophils) are closely monitored; this usually recovers well once chemotherapy is finished and is no longer a significant factor
  • Newer agents / targeted therapies like ibrutinib may affect the immune system in a different way to chemotherapy (for example bendamustine or DRC) and monoclonal antibodies such as rituximab. How ibrutinib and similar treatments affect the body’s response to COVID-19 is not yet fully known.

Doctors make certain assumptions based on how patients in this group are affected by other more familiar viral infections.

  • Illnesses such as influenza (for which vulnerable persons are offered the annual flu vaccine)
  • Herpes viruses that cause illnesses such as chicken pox and shingles (varicella zoster) or cold sores (herpes simplex) for which tablets like acyclovir and valaciclovir can be used for prevention and treatment
  • Under normal circumstances, a pragmatic approach is made regarding the use of preventative measures such as anti-viral meds (valacyclovir). Patients are thought to be at highest risk in the first three months after completion of therapy. This risk diminishes in the following six to twelve months
  • Note that acyclovir and valaciclovir does not have activity against COVID-19
  • None of this is an exact science and varies from person to person, so in the current crisis, until we know more, people at any stage of their disease are included in the vulnerable category.

I have WM and am receiving treatment now: what should I do?

Please do not stop any treatment for your WM without discussing this with your doctor, or a member of their team.

People at any stage of their disease are included in the vulnerable category.

Different combinations (such as bendamustine, DRC and fludarabine) and different strengths of treatments (such as chemotherapy given for a stem cell transplant) suppress the immune system to varying extents and for different durations.

Those on active treatment may see a change in their treatment plan so as to minimise their immune suppression, preferably without adversely affecting the outcome that is intended from using the WM treatment in the first place.

I have been informed that I need to start treatment for the first time: will that change?

The point at which treatment is commenced will be delayed if possible; watchful waiting is the preferred strategy whenever possible.

  • Treatment will be given in symptomatic patients, but if the symptoms are mild and / or tolerable, treatment is likely to be deferred, alongside close monitoring
  • For patients presenting with anaemia (low haemoglobin) as a main problem (resulting in symptomatic fatigue), intravenous iron infusions could be considered. This requires one- or two-day case visits to the hospital but if this results in a rise in the haemoglobin, the need for chemotherapy could be deferred for a number of months until the coronavirus precautions are lifted
  • If your plasma viscosity is a main concern, plasma exchange may be commenced to remove excessive IgM from the blood and ‘thin’ the blood as a holding measure until chemotherapy starts. This would entail a visit every two to four weeks to a centre that can carry out the procedure. Plasma exchange does not itself suppress the immune system.

Is my treatment likely to be changed?

  • Less immunosuppressive chemotherapy treatments (for example cyclophosphamide instead of bendamustine) may be chosen or the number of intended cycles may be reduced or deferred to limit visits to the hospital
  • Oral chemotherapy options may be given instead of intravenous options to facilitate self-isolation
  • Rituximab maintenance is not recommended because of lack of evidence of benefit, and to limit the burden of travelling to healthcare centres and the risk of immunosuppression
  • It is not known whether these changes would affect the eventual outcome of treating the disease. However, there is widespread agreement that it is crucial to keep vulnerable people isolated as far as possible at this stage. Once regulations about this change, treatment choices will be revisited by the treating team.

I have already started treatment: will anything change?

In the absence of evidence to guide us, treatment decisions should be based on your general health, any other illnesses, and the response already achieved so far, and balancing this against the risk of developing COVID-19 infection.

  • It is thought that persons on BTK inhibitors (ibrutinib, acalabrutinib and zanubrutinib) should be continued on treatment. Stopping treatment has a high risk of causing IgM flare, increasing risk of symptoms such as fever and respiratory symptoms (which can be confused as COVID-19 related) and high blood viscosity, which may trigger the need for plasma exchange
  • For patients who have already achieved a good response to rituximab-chemotherapy, a reduced number of cycles may be considered. Alternatively, a switch to less immunosuppressive treatment may be considered
  • Maintenance rituximab should not be given because of the lack of evidence, increased risk of immunosuppression, and of the requirement for travel to the hospital
  • Ultimately, in order to err on the side of safety, we need to balance risks versus benefits.

I have early signs of relapse: how is that likely to be managed?

When possible, commencement of treatment will be delayed if mild, tolerable symptoms are present with continuation of close monitoring.

  • For patients presenting with anaemia (low haemoglobin) as a main problem (resulting in fatigue or shortness of breath), alternative ways of boosting haemoglobin such as erythropoietin injections in eligible patients e.g. those with chronic renal failure (can be taken at home) or intravenous or oral iron may be used as a holding measure. Intravenous iron given once or twice would need a visit to a hospital but if this results in a rise in the haemoglobin, further visits for chemotherapy could be put off altogether for a number of months
  • Stem cell transplants are not taking place at present. If you were planned for one, an alternative holding measure may be considered.

I am enrolled in a clinical trial: what should I do?

The clinical trials team will seek advice from the sponsors who are running the trial about adapting the care of patients who are on clinical trials.

These include:

  • supply of medication for longer durations to reduce patients having to come into the hospital
  • postponement of visits to the hospital for trial-related tests such as bone marrow biopsies and scans
  • visits that are necessary on safety grounds, in order to continue receiving the trial medication (for example blood tests or ECGs – heart tracings to ensure it is safe to continue) may need to go ahead as planned but the possibility of more local provision may be possible.

Will there be an impact on supportive treatments for WM?

Several supportive measures are being implemented to minimise risk and reduce the chance of hospital admission.

  • Growth factor (G-CSF) injections are likely to be used in patients who are receiving chemotherapy to reduce the risk of neutropenia (low white cell count). The clinical team will decide how long and how often these injections may be needed. They are given subcutaneously (under the skin) and this can be done at home
  • Some patients may receive preventative antibiotics if they are already experiencing recurrent infections
  • Where indicated, routine vaccination against influenza and pneumococcus should be continued despite reports of impaired responses.

Immunoglobulin infusions (IVIG)

Some people are already receiving antibody replacement because they experience repeated infections. This is usually administered intravenously in hospital or subcutaneously.

  • A decision is likely to be made on a case-by-case basis considering the balance of risk and benefit. Continuing to provide IVIG as a day case is preferred as it seems contrary to remove a protective measure at a time of pandemic
  • If the risks of travelling to a hospital are considered too high, the clinical team may consider alternate measures
  • Dependent on patient circumstances and hospital capacity, short-term antibiotics may be given instead (to replace immunoglobulin therapy)
  • The dose of immunoglobulin may be changed to reduce interval between attendances
  • For suitable patients the use of subcutaneous immunoglobulin may be used. This will depend on the capacity of the centre to deliver a training package to patients to self-administer the treatment and receive deliveries at home.

Is testing to establish if I have COVID-19 (serological testing) likely to be affected by clonal IgM in patients with WM?

Blood tests for COVID-19 are being developed to identify COVID-19 specific IgM antibodies to look for evidence of infection and will not be affected by the total IgM or paraprotein levels.

Such IgM antibodies are the ‘first responders’ to any infection that we encounter – they are produced as part of the early immune response and so can help to confirm whether we have been infected. This IgM is different to the IgM produced by WM cells, and can still be picked up by the test despite the presence of WM-related IgM. While such testing is already in widespread use to detect a range of infections, a specific test for COVID-19 has needed to be developed in the past weeks.

One concern about this test in WM patients is that previous treatments such as rituximab (which targets B cells whose job it is to produce antibodies) might result in not being able to mount an immune response to COVID-19, and there is a possibility of a negative serological test even if they were exposed to the virus (having the virus but with a negative test result).

How can I minimise my visits to the hospital?

All hospitals in Australia are working on and have implemented contingency measures so as to minimise the need for all patients, especially the vulnerable, to leave their home. These include:

  • home delivery of oral medication where possible (exact arrangements vary between regions due to geographical and infrastructure differences)
  • changing intravenous to oral treatments if possible
  • dispensing longer periods of oral medications
  • reducing the number of cycles to be given, especially if there is already evidence of good response
  • considering treatment breaks or pauses while the risk of COVID-19 is particularly high
  • using growth factor injections to reduce the chance of low blood counts and reduce admission rates
  • these measures are unprecedented and have been put in place specifically for this pandemic. It is not known if these changes will alter the eventual treatment outcome, but it makes sense to take these important safety steps now. Once the pandemic is under control, clinical teams will review the treatment strategy once more.

What else do I need to know?

We currently are in an unusual time where there is little evidence on which to base decisions at a time where things are changing fast.

  • Each day, observations around the world being made during this pandemic will be of immense help in the future
  • Clinical trials to treat COVID-19 are well underway
  • There is an unprecedented amount of collaboration going on between doctors and scientists across the globe to share information to make it safer to care for patients in this difficult time. The picture is changing on a daily basis
  • All Australian hospitals and healthcare centres are working hard to put new practices in place in response to guidance that is coming from the Australian government
  • WM patients and advocates play an important role in the dissemination of information
  • WMozzies will regularly update the WM community with fact-checked information
  • We would recommend speaking to your specialist team if you have any questions or worries about coronavirus and WM.
  • Please seek advice from your hospital/healthcare centre and GP or specialist regarding your specific risk as the situation may vary from centre to centre.

I am worried that I have COVID-19: what should I do?

If you think you might have been exposed to the virus, or develop symptoms, you should follow the same instructions as those for the general public. Do this as soon as you get symptoms.

  • Please contact the COVID-19 helpline on 1800 020 080
  • Please contact your GP and/or your specialist.
  • If you are receiving chemotherapy treatment, phone your hospital team so they are aware.
  • In an emergency, call Emergency if you are seriously ill.

WhiMSICAL Registry Presentations June 2019


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/

WhiMSICAL Poster presented at conferences in June 2019.

 

World first WM PRO Quality of Life questionnaire added to WhiMSICAL

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:

  • Five functional scales (physical, role, cognitive, emotional and social)
  • Three symptom scales (fatigue, pain and nausea),
  • A general health status
  • Items assessing additional symptoms commonly reported by cancer patients.

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 whimsical@iwmf.com 

 

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

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

 

  1. Virtual Lecture on WM

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).

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

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.