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September 2010 Meeting News
New Members
Lou was attending for the first time with his wife, Debra. Lou had several vertebrae collapse and
after multiple tests was diagnosed with MM in March 2010. He is currently being treated with
Velcade, Revlimid, and Dex (VRD) along with Zometa. He is preparing to start the transplant
process in October at Northside BMT.
Business & Other Information
The group is looking forward to a visit from members of the Emory team at our October meeting.
Dr. Jonathan Kaufman, Charisse, and Melanie are scheduled to join us for discussion of new
treatments and open question session. Feel free to bring family members and guests to this
important discussion. Please note that the yoga classes held in our meeting room will resume after a
summer recess from 9:30 to 10:30. They have asked that we wait to enter the room at 10:40. We
will need help in setting up the room for the guest speakers. Nancy reminded the group about the
iMAGE Study for the causes of MM. They need about ten more patients and members are urged to
contact Norma Heard at 404-756-8818 to participate.
Nancy brought news articles about clinical trials and side effects. The latest information on MM is
available as a result of several key conferences: American Society of Hematology (ASH) in
December, American Society of Clinical Oncology (ASCO) in June, and European Hematology
Association (EHA) in June. The articles were discussed and copies were passed around at the
meeting. Additional copies of these articles will be available at the October meeting. A brief
synopsis of a few of the articles reviewed:
• Carfilzomib-Revlimid-Dex is well tolerated, showing less damage to peripheral nerves and
fewer cases of low white blood cells. The overall response rate of 75% improved with long-term therapy; up to 18 cycles. • Nerve Damage in MM was discussed at ASCO. Dr. Richardson explained that MM, itself,
causes nerve damage that leads to pain. He urged close monitoring and regular assessment of peripheral neuropathy (PN) at each consult during treatment. Dose reduction may be necessary, but Dr. Richardson noted that PN dose modification did not appear to affect disease progression as the patients were able to continue therapy for a longer period of time. • Panobinostat combinations show benefit when combined with Velcade or Revlimid and Dex.
The study shows 60% response rate, even with patients who are refractory on other treatments. • Combination of Revlimid-Velcade-Dex in a Mayo Clinic study with newly diagnosed MM
patients yielded an unprecedented 100% response to the phase 2 dose level; 57% entered a
complete remission within a few months of treatment. Although 40% of patients required dose
modification due to neuropathy, further refinements of dosing and long term options are under
review.
• Heparin, Warfarin, and Aspirin are equally effective in preventing blood clots in MM patients
• Understanding Chemo Brain – Symptoms identified and strategies to help with the effects.
Member Updates & Collaboration
Hector was attending with his family after a recent stem cell transplant. Hector’s wife, Brenda, said
that she used her nursing experience to put ice chips in Hector’s mouth and cold water to the GI
tract. Hector had no mouth sores and very little nausea since the cold suppresses blood flow that
carries the high dose chemo into the mouth and gut. Hector was glad to be more mobile and was
looking forward to continued improvement. David updated the group on his allogenic transplant
from his brother. David’s MM is gone, but he is dealing with Host vs. Graft (HVG). He is
experiencing a severely suppressed immune system and weight loss. Chaz went through the harvest
process in July, but was not able to harvest enough stem cells, even with a drug for mobilization. He
will not have a transplant and is back on Thalidomide at 50 mg. Ernestine was on a clinical trial that
required her to be at Emory four days per week. She has ended that trial and is waiting on other
options. Jeanette has been on the Hulac clinical trial since January. She is getting good results
against the MM but is having GI issues and loss of appetite. Carolyn has been on the Hulac trial
since March 2009 and has minimal side effects. Predisone has been added for a few cycles. Carolyn
reported from some members that were not present. Everyone was glad to hear that Karyn is going
on a cruise to get a much needed break. Matty is going to meet with the transplant team at
Northside to begin that process. Nancy is still in remission from her transplant and is taking
Tumeric (Circumin), which is a herb that is in clinical trial at MD Anderson to control MM. Nancy
B. updated the group on Mike’s status. He has been off chemo for over one year, but the numbers
are creeping up. He is also dealing with amyloidosis, a rare disease that may develop in 15 – 20% of
MM patients. Amyloidosis is a disease in which abnormal proteins accumulate in organs such as the
heart, kidney, liver, or intestines. He is experiencing daily pain, which may be from MM, chemo side
effects, amyloidosis, or all three. Nancy also reported that Patty had a transplant in February and is
excited to announce that she is in remission and feeling great. She urges fellow MM friends to stay
positive and keep the faith. Monique was re-assessed two months ago and is still in remission. She
continues her Zometa treatments. Ray is still in complete remission, but peripheral neuropathy is
causing sleep problems. He is doing yoga for flexibility and relaxation. Mary said that her MM is
creeping back from her transplant in 2002. She is not able to harvest for another transplant due to
damage from the old style chemo: VAD, DT-Pace, and Thalidomide. She will be exploring her
options. Becky has had a long struggle with leg cramps. She is working with her doctor to adjust
her medication. She has reduced her Revlimid from 25 mg to 15 mg and switched from Dex to
Medrol every other day. This had led to reduced side effects and no reduction in muscle mass. She
feels that her muscles are starting to rebuild. Latain had her 100 day evaluation from her transplant
earlier this year and is in remission. She is on 10 mg Revlimid for maintenance. Jeanne reported
that Bill had what was thought to be shingles, but turned out to be a fungus.

Source: http://www.mmsg.org/meeting%20notes/Sept%202010%20Meeting%20News.pdf