Welcome to WMozzies, the Australian Support group for everyone affected by Waldenström’s Macroglobulinemia (WM) .
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.
The ASH poster demonstrated the feasibility of the WhiMSICAL database as a patient-derived data registry. Highlights from the WhiMSICAL database include:
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?
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.
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.
