Multiple Myeloma Support Group
SATURDAY JULY 9, 2005 MEETING
Welcome - Everyone was welcomed to the meeting.
i) Free quilts from Wellwood were offered to the group.
ii) IMF conference for Support Group Coordinators:
Lori and Marnie are away today as they are attending the IMFconference for support group coordinators. We are anxious to see what they have learned.
iii) Brochures were provided regarding the International Myeloma Foundation conference on July 22,23 in Toronto. Registration is available for both days, and just one. Everyone was encouraged to attend.
iv) The International Myeloma Foundation has provided a CD Rom copy of all of their information for each group member.
i) The group was regrettably informed that two of the members, Myra Baillie and Patrick Rosinski had passed away.
ii) Toronto Marathon Walk: Ms Jillian Fleming:
The Toronto Marathon Walk will be held on Sunday, October 16th at 8:30
a.m. at Queen’s Park in Toronto, Ontario.
Jillian got involved in the Toronto Marathon Walk in 2004 when her father was diagnosed with multiple myeloma. She lived in Waterloo, and her father lived in London. She wanted to do something to raise money for multiple myeloma research. That was when she found the Toronto Marathon. They agreed that she could do the 21 km. run and designate the funds to multiple myeloma research. Her goal was to reach $1,000 to $5,000. Letters were sent out to all support groups regarding the marathon to support Jill. She raised approximately $5,400.
Princess Margaret Hospital (PMH) has done a great job! They have added a 5 K walk and/or run in order to access more of the community. Moving Together Toward the Cure Team will be one of seven groups walking for a specific research area. Three major companies sponsor the marathon. There are approximately 10,000 people participating in the marathon, and they have over 80 donations so far. The goal is to raise over $5,400 for multiple myeloma research this year.
A warm, well-deserved nutritious breakfast will be waiting for you at the finish line. Hope to see you there!
Everyone is welcome to participate (yourself, family, friends, neighbors, and co-workers). If unable to participate, you can help out by becoming a sponsor, or making a donation.
Attached you will find step-by-step instructions on how to register or donate on-line, or if you prefer, brochures including a pledge form and registration sheet are available on the back table.
All proceeds will go to the Princess Margaret Hospital for multiple myeloma research.
For more information please check out the following websites:
Please note: transportation can be made available, if you need it. Laura McCallum will be participating in the walk, with her family. Sponsorship can be accessed either online, or by contacting Laura directly.
iii)Guest Speaker – Dr. Ralph Meyer
This talk has been given to patients and families with other malignant diseases and was reformatted to help deal with myeloma issues. The first portion of the talk gave a fictional example and a real example of developmental research initiatives that unfortunately gave results that were misleading. These examples exemplify the need for scientific studies to move sequentially from basic research to preliminary types of clinical trials testing, onto more mature types of clinical trials testing (for instance, randomized control trials).
Dr. Meyer then went more specifically into discussions of areas that are referred to as “basic” research, “translational” research, clinical trials testing, and finally health services research. From there, the talk focused on clinical trials testing and specifically described:
a) Phase I trials that are aimed to determine the safety and best method of delivering a new treatment.
b) Phase II testing in which the safest way of delivering a medication (determined from phase I testing) is then tested to determine whether the new therapy is likely to provide d favorable outcomes in a specific patient population.
c) Finally, phase III testing, or randomized control trials, involve testing a new therapy against a previously existing standard treatment. It is the results of phase III testing that are generally required for government regulatory approval.
Dr. Meyer then reviewed the dilemma that results when phase II testing gives very promising results, that may be received as being very encouraging to patients and families, yet does not result in regulatory approval because of the lack of a comparison against an existing standard treatment. Examples of phase III trials in myeloma were provided.
Finally, there was a discussion about how the above processes specifically relate to the availability of bortezomib (Velcade). In this circumstance, recent phase III (randomized control trial) data show that bortezomib improves the outcome of patients with myeloma in comparison with treatment with dexamethasone alone. Based on these findings, bortezomib has been granted regulatory approval by the Canadian government. However, before this treatment can become widely available, a second level of approval, at a provincial level, is required. In Ontario, this approval has not yet been received.
A variety of questions related to the presentation, and with respect to specifics of myeloma therapy were then discussed.
Question and Answer Session:
a) Do you think thalidomide will be funded eventually?
Thalidomide will probably not be covered because of the birth defects it caused in the 50’s. It used to be covered on compassionate grounds, but not anymore. A means assessment or financial report is now required to be filled out by the patient in order to assess their financial situation. It is generally not funded anymore.
b) What is going on with Revlimid?
Revlamid has been fast-tracked to some patients in the States.
c) Who submits the application?
The company submits the application.
d) Who takes care of you if you develop an allergic reaction when participating in a clinical trial?
Your own hematologist would take care of you through the whole process.
e) What is the policy for treating older patients?
There are limitations associated with treating older patients based on heart conditions, kidney problems, etc.
f) Was thalidomide used for cancer patients in the 1950’s?
No, thalidomide was only used to treat nausea and vomiting in pregnant woman.
g) Is multiple myeloma potentially curable?
Myeloma is not potentially curable, but it is possible for a patient to obtain a complete remission (absence of detectable disease). There are some patients from the 1980’s who are still alive.
h) Why can some patients get specific diagnostic tests, and others cannot?
Diagnostic testing is done to obtain specific information pertaining to an individual patient. For example, an immunofixation test will provide a yes or no answer and will determine your response to treatment. A protein electropheresis tells you if you have a monoclonal peak. A 24-hr. urine will detect the amount of protein you have in your urine, whereas a Bence-Jones protein will tell you that you do have free light chains, or you do not. A Beta 2M is an important prognostic test, but it won’t help to determine your therapy. Your doctor will order tests according to what information he/she is looking for.
The next meeting will take place on Saturday, September 10 at 1:00 p.m. at the Linden Park community Church.