Multiple Myeloma Support Group
SATURDAY NOVEMBER 12, 2005 MEETING
Welcome - Everyone was welcomed to the meeting.
i) IMF Bank on a Cure:
Registration forms were circulated. Lori will take them all in. The purpose in collecting saliva DNA samples from 5,000 Myeloma patients and their families is to further aid in research.
ii) Summary on Velcade:
Petitions are still being collected and weekly trips to Queens Park are continuing. We have joined with the Colorectal Cancer group as well as Mesofilta. This is a form of lung cancer caused by work related exposure. A Press Conference and question Period will be held. Watch your News, as we are hoping to get coverage. Those attending the meeting are encouraged to check the update posted on the wall.
The January 14, 2006, Meeting will mark our 1 year anniversary.Anyone with ideas on how this meeting could be run are encouraged to contact Lori or Laura. Small group discussions? Should an entire meeting be dedicated to this? Please feel free to sign up (on the wall) with any suggestions or topics you would like addressed.
ii) Guest Speaker:
Lori introduced the guest speaker.
Time was allotted for a question and answer period. Specific herbs were inquired about in relation to their being positive or negative to Myeloma patients in combination with their prescribed medications. Personal situations were presented and the speaker responded to each individual circumstance. She finished with a reiteration that consumers MUST BEWARE when using Herbal Medicines and that knowledge is imperative before using.
iv) Laura’s Progress with Velcade:
She has completed a clinical trial which consists of 8 cycles of medication. As of September, 2005, she has no cancer in her bone marrow, no protein in her blood or urine. The average statistic of extending overall survival is reported at 18 months. Most patients in the trial were given Velcade as a last resort. The USA are using it as a first step. Neuropathy is much worse on Velcade than Thalidomide but it is not permanent. Gabepentin helps whether taking Velcade or Thalidomide.
v) End of Meeting:
The meeting ended with group members being encouraged to join the rally in Queens Park.
The next meeting will take place on Saturday, January 14 at 1:00 p.m. at the Linden Park community Church.