Multiple Myeloma Support Group
Minutes - May 10, 2008
Saturday, May 10, 2008
MULTIPLE MYELOMA SUPPORT MEETING
Lori announced an upcoming Conference presented by the Toronto and area MM Support Group. The Patient, Family & Healthcare Professionals Conference will be held on September, 12 & 13, 2008; at the Toronto Marriott Airport Hotel. Myeloma experts will include Joseph R. Mikhael, Nikhil C. Munshi, Donna E. Reece, David H. Vesole, and guest speakers will be Robert A. Buckman, Richard Beliveau, and Michael Katz. The dates of this conference clash with our scheduled support meeting. We have chosen to promote the meeting in Toronto as there will be very interesting and important information shared. Lori will pass on any information as she receives it and will try to arrange car pooling where necessary. Overnight stays are a possibility. If you are interested in attending, please leave your name and number at the back. Please note that in supporting the Toronto meeting, our meeting will be canceled.
Lori and Marnie attended the MM Support Group Leader Retreat in Arizona. Lori shared some information gained from this retreat.
Revlamid should be approved between the end of this summer and Christmas of this year.
If you already receive Revlamid free of charge, then you will continue to get it at no cost to you. Groups will be advocating to get Revlamid covered. There will be a fight to win coverage just as there was with Velcade. Both oral and IV uses should be covered when approval is obtained.
There will be an open meeting on May31, 2008 in Mississauga. Anyone interested in attending can see Steve.
Patients are living with Myeloma now, not necessarily dying from it.
There has been a tremendous amount of “high class” research in the last 5 to 6 months for Multiple Myeloma.
October is Multiple Myeloma Awareness Month
The group is looking into setting up a table at the Juravinski Cancer Center. There are still people in the area who don’t know about our Support Group and are facing MM alone.
Lori introduced our guest speaker, Dr. Ann Benger, a Clinician who sees patients with MM .
Topic: Multiple Myeloma - Where have we been?
Where are we going?
1844 -first patient
-Sarah Newbury - 39 year old woman
-patient of Dr. Solly
-fractures - bone pain and fatigue
-problems with urine and bone marrow
-treatment - rhubarb pill with an infusion of orange peel
-2nd patient Thomas Alexander McBean
-45 year old tradesman
-severe chest pain and breast bone pain
- unusual protein in urine
- treatment - removal of one pound of blood
- -maintained with leeches
-later treatment - steel and quinine
1873 -Dr. Ruzitsy coined Multiple Myeloma
1895 -Dr. Waldenstrom - plasma cell
1928 -recognition of protein in the blood
1929 -Dr. Arinkin developed bone marrow test
What is Multiple Myeloma?
Modern Day Definition - cancer of plasma cells
Consequences of Multiple Myeloma
- uncontrolled growth of one clone of plasma cells
- bones - OAF - dissolves surrounding bone
- causes lytic lesions and fractures
- calcium dissolves out of bone into blood stream
Bone Marrow - crowds out normal blood forming cells
- low white count
- low platelets
Blood - protein builds up
- effects of high protein are many
- more water comes in with blood, worsening anemia
- blood cannot equalize
- too thick and very hard to pump causing many side effects
- easier to bleed
- includes susceptibility to infections
- protein levels are fairly good makers of how well treatment is working
Kidneys - MM proteins can directly damage kidney cells and lead to Kidney failure
- protein wasting conditions (Nephrotic Syndrome)
-subsequent trial in 1966 comparing oral Urethane to cherry or cola-flavored
syrup showed no improvement in symptoms or survival with Urethane
-showed a definite response in 50 - 60% of patients
-adding Prednisone improved response rates and increased survival compared to
1998 -review of many trials comparing newer combinations of drugs to
Melphalan and Prednisone showed some increase in response rates
-no improvement in overall survival
Autologous Stem Cell Transplant in Myeloma
-1996 French Myeloma
-Intergroup; 200 new patients with MM assigned treatment with conventional
Chemotherapy or Chemotherapy with a Transplant
-response rates were significantly better in the transplant group
- overall, literature shows about a 12 month increase in survival or remission
-could repeating a transplant improve the outcome
-patients who achieve complete or very good partials had longest survival
-five trials - three report benefit
- two report no benefit
-definitely no benefit to a second transplant
-transplant from a sibling - could this lead to a cure
-results very disappointing
-very few people were cured
?? Smarter treatments instead of stronger drugs
1957 -introduction by a German pharmaceutical company as a sedative
1960 -sold in more than 40 countries (not USA)
-popular both as a sedative and as a treatment for morning sickness
1961 -first reports of fetal malformations
1997 -Dr. Barlogie noted that Thalidomide has anti-antigenic properties and wondered
that it might be helpful in patients with MM
-trials in patients who have progressed after other treatments have shown 30%
response rate (56% if Dexamethasone added)
-first new drug active as a single agent
2004 -”proteosome inhibitor”
-leads to cell death
-cancer cells and proliferating cells are more sensitive than normal
-40% previous response rate
-52% with Dexamethasone
-lasts 12 months on average
-funded and available (1 round only)
-lots of side effects
-a newer, hopefully better from of Thalidomide
-2 large trials in relapsed patients have shown better responses to Revlamid than
to high dose of Dexamethasone alone
-will likely be released within the next 6 - 12 months
-cost??? - big challenge - $72,000.00 per year
Combinations - Chemotherapy with Newer Agents
-Dr. Palumbo - elderly patients, first line
-randomized - M + P
M + P + T
VAD + Transplant
-M+P+T had best response and survival
-Thalidomide + Dexamethasone
-Revlamid + Dexamethasone
-Velcade + Liposomal Doxorubicin
-Velcade + Dexamethasone
-Melphalan + Prednisone + Revlamid
-Melphalan + Prednisone + Velcade
Role of Maintenance Therapy
-after Melphalan + Prednisone : Interferon
-tried, but too many side effects with little improvements
-after transplant : Thalidomide + Prednisone
-possibly better than tandem transplant, but no studies as of yet
-Pamidronate - reduces bone pain and fractures
-how long to continue?
-generally two years
-any longer could lead to Osteo-chronosis of the jaw
-inject a cement like substance
-can have extreme side effects
Question and answer period.
Thanks and applause for Dr. Benger’s wonderful presentation.
Next Meeting - Saturday, July 12, 2008
Topic - Community Support agencys