Twin Cities Regional Community Workshop Held

The International Myeloma Foundation (IMF) and the Minneapolis Myloma Support Group hosted a workshop at Methodist Hospital, September 27, 2008. Doctor Angela Dispenzieri of Mayo Clinic gave a presentation titled "Myeloma 101," which took the group from the basic nature of myeloma through conventional therapy to the newest therapies and a few experimental ones. After lunch, Teresa Miceli, RN, BSN, from the IMF, spoke on the management of side effects of treatment. Questions were entertained during and after both talks, and the group asked a lot of questions.

Here are few of the subjects touched, in no particular order:

• Deletion of chromosome 13 is not always bad. Depending on the method by which it is detected, deletion-13 may be neutral.
• There is no clear information to suggest that maintenance therapy is preferable to no therapy, after remission is achieved or after a stem cell transplant (SCT), nor is there information suggesting the opposite. It's a personal decision, usually with no wrong answer.
• The death rate from autologous SCT is in the range of one percent, whereas the death rate from allogenic SCT is more like thirty percent.
• SCT does not normally cause neuropathy.
• Revlimid is much less likely to cause neuropathy than is thalidomide.

Helen Berg, who has been instrumental in organizing and promoting the Minneapolis Support Group since the beginning, was presented with a very well-deserved award for outstanding achievement. Congratulations Helen, and THANK YOU! You may be very proud of the work you have done.

The meeting included lunch, provided by the IMF. People came from as far away as Cedar Rapids, Iowa. Teresa Miceli expressed gratitude and appreciation especially for the caregivers in attendance, echoed by all of the survivors. Attendees came away with cool IMF t-shirts, myeloma literature, and other goodies.

Angela Dispenzieri, MD		Teresa Miceli, RN, BSN

MMRF Twin Cities Race for Research

The Multiple Myeloma Research Foundation (MMRF) announces the fourth annual
5k Walk/Run Race for Research
Sunday, September 28, at 9:00 am
Lake Phalen in St. Paul, Minnesota.
It's a fairly large race, with entertainment and people of ALL speeds. You may wear a number and be timed, or simply enjoy a nice 3.1-mile Sunday morning walk around lovely Lake Phalen as you support research for myeloma. Or you can just watch and support your runner/walker or your myeloma survivor. Everything is handicap accessible. Please put it on your calendar now.

Registration forms may be found on the website, or downloaded here

The MMRF is one of three large organizations which directly support myeloma research and myeloma survivors. The other two are:

• The International Myeloma Foundation, and
• The Leukemia & Lymphoma Society.

Twin Cities Workshop Sept 27

Are you or someone you love battling
Multiple Myeloma?
Twin Cities Regional Community Workshop
Saturday, September 27, 2008.
Registration at 8:00 am, workshop from 9:00 am to 2:00 pm.

Heart and Vascular Center, Conference Rooms A & B
Park Nicollet Methodist Hospital, St Louis Park, MN
Directions: Take Highway 100 to Excelsior Blvd., go left (west) on Excelsior for approximately 1 mile to the hospital. Turn right (north) and park in the "Blue Ramp" at the front of the hospital (Excelsior Blvd side). The Heart & Vascular Center Conference Rooms are located on the ground floor.

Why attend an IMF Workshop? Education Myeloma, Transplant, Novel Therapies, Side Effects Management, and Supportive Care issues are ALL on the agenda. Experts Myeloma experts and other health care professionals will be there, including MLB member Teresa S. Miceli, RN BSN, BMT Nurse Coordinator at Mayo Clinic. Experience Share your experiences and gain strength from others as you join the IMF family.

Registration is free, lunch is provided

Please RSVP to Kelly Cox at the IMF 800/452-CURE (2873) or kcox@myeloma.org
More information is available, please ask - or visit myeloma.org

The workshop is supported by the International Myeloma Foundation and by an unrestricted educational grant from Millennium Pharmaceuticals, Inc.

Minneapolis Meeting Postponed to September 27

Breaking News:

The Minneapolis meeting which was scheduled for September 6 is now scheduled for September 27, 2008. Kelly Cox from the International Myeloma Foundation will sponsor the Sept 27 meeting with lunch, and additional speakers may be there as well.

Exact time and place will be settled soon - please stay tuned, and hold that date on your calendar.

Minneapolis Group Met July 19

Ten myeloma survivors and their spouses, friends, and caregivers met Saturday, July 19, 2008, at Methodist Hospital in St Louis Park. Survivors shared their stories, treatments, and advice with each other. At least one new member was present.

The Marathon of Hope will be Saturday, September 6, 2008, 8 to 11 am, Thomas Beach, Lake Calhoun, Minneapolis MN. This is a certified 5k & 10k race and walk to benefit the Park Nicollet Cancer Center.

The next meeting of the Minneapolis group will be at the STILTS Building on the Methodist Hospital campus. The Stilts Building is right at the corner of Louisiana Ave and Excelsior Blvd. See the MAP.

September 13, 2008, 10:00 am
Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN 55426
MAP

Jody Koccer Spoke to St Paul Group

Jody Koccer of Millenium Pharmaceuticals spoke to the St Paul Group in Stillwater on Wednesday, July 16, 2008. She announced the recent FDA approval of Velcade as a front-line treatment for myeloma, and answered questions from group members about Velcade.

Fourteen myeloma survivors were present, along with spouses, friends, and other caregivers. Survivors shared their stories, treatments, and advice with each other. At least two new members were present.

The St Paul group has scheduled speakers for the following upcoming meetings:

• Aug 20: Jennifer Feinberg of Celgene Corp, makers of Thalidomide, Revlimid, and CC-4047.


• Sep 10: A naturopathic doctor will be invited.

The St Paul group meets at 1:00 pm at:
Family Means Center
1875 Northwestern Ave South
Stillwater, MN 55082
MAP

Kelly Cox Speaks in Twin Cities

Kelly Cox, Director of Support Groups Outreach for the International Myeloma Foundation (IMF), spoke to both Twin Cities support groups last week. With web data and computer-generated slides he gave us a lot of information about our disease and good advice about dealing with it. A few points:

• The IMF is doubling the number of people available to answer the hot line, from two to four.
• Kelly would like to have a Patient and Family Seminar in the Twin Cities in spring or summer 2009 and will try to arrange it.
• Kelly showed slides of a study about the Mediterranean Diet which stratified people's level of compliance on a scale of 1 to 10 and demonstrated that every two-point increase in compliance results in 33% fewer deaths from heart disease and 24% fewer from cancer.
• Approximately 2200 people are newly diagnosed with myeloma in the USA each month (26,400 per year).
• Three different organizations are organized to specifically serve the community of myeloma patients:
  • The International Myeloma Foundation (IMF),
  • The Multiple Myeloma Research Foundation, and
  • The Leukemia and Lymphoma Society.
  The organizations operate in somewhat different ways, and each serves a purpose. One specific focus of the IMF is support of local patient-support groups, as evidenced by Kelly's presence last week at two of Minnesota's three group meetings. Another focus is direct support of individual patients, through the hot line and in other ways. A third is reaearch - the IMF has been heavily involved in the Bank on a Cure project and many, many others.

Upcoming meeting dates:

• St. Paul: Wednesday, July 16, 1:00 pm. See the sidebar for more information.
• Minneapolis: Saturday, July 19, 10:00 am. See the sidebar for more.
• Rochester: Saturday, June 21, 10:00 am. See the sidebar for more.

Both Twin Cities meetings included new first-time attendees last week. We would love to see you there.