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.

Good News from ASCO

The International Myeloma Foundation (IMF) has posted a news article announcing findings presented at the American Society of Clinical Oncology (ASCO) last week indicating that "novel" treatment options such as Revlimid and Velcade have significantly improved patients' survival. In particular:

• Two-year survival has increased to 93% for newly-diagnosed patients. The survival rate for people without myeloma is only three percent higher,


• Velcade has produced a high complete-response (CR) rate, and


• Further improvements are made by using Revlimid and Velcade in sequence or in combination.

The IMF believes that we are coming closer to making myeloma a chronic disease instead of a fatal one.

Stick around, it's getting better and better!

St Paul Group Sets Speakers

The St Paul, Minnesota Myeloma Support Group has scheduled speakers for the next three meetings:

• Jun 11: Kelly Cox, Director of Support Groups Outreach for the International Myeloma Foundation (IMF),
• Jul 16: Jody Koccer, Millenium Corp, makers of Velcade, and
• Aug 20: Jennifer Feinberg, Celgene Corp, makers of Thalomid (thalidomide), Revlimid, and CC-4047.

The St Paul meetings are held in Stillwater at:
Family Means Center
1875 Northwestern Ave South
Stillwater, MN 55082
Map

Three Groups to Meet in June

All three of Minnesota's myeloma support groups will meet in June:

The Minneapolis meeting will be Saturday, June 7, 2008, 10:00 am to 12:00 noon
Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN
Map
Kelly Cox will attend. Kelly is the Director of Support Groups Outreach for the International Myeloma Foundation (IMF).

The St. Paul meeting will be Wednesday, June 11, 2008, 1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave South
Stillwater, MN 55082
Map

The Rochester meeting will be Saturday, June 21, 2008, 10:00 am to 12:00 Noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

All three support groups hold free meetings for multiple myeloma patients and their families, with informal discussions and questions. Frequently there are invited speakers to provide information about various topics relating to myeloma. You and your family and other caregivers are invited; come to any location or all of them.

At the most-recent St. Paul meeting, member Dan reported on the recent Mayo Clinic myeloma patient-information symposium which he attended in Chicago. Members also discussed treatment protocols, doctors, stem-cell transplants, treatment of side effects, complementary and integrative treatments, and much more. These discussions are quite positive and empowering, especially for people who otherwise get their information only from their doctor.

Dr. Richard Ottomeyer Speaks to St Paul Group

Dr. Richard Ottomeyer spoke to the St. Paul Myeloma Support Group in Stillwater at its regular meeting, April 16. He is a doctor of chiropractic and is certified in accupuncture. He suggested that the benefits of accupuncture for a myeloma patient may include:

• For some patients, accupuncture may modestly improve white and red blood counts,


• It can stimulate the production of endorphins, which may benefit the immune system, and


• In particular, it may aid in relief of bone and muscle pain.

Dr. Ottomeyer suggested diode infrared therapy for neuropathy. He also stressed that natural medicine such as chiropractic and accupuncture are not a replacement for conventional medicine. Following Dr. Ottomeyer's presentation, members discussed conventional treatments, doctors, transplants, side effects, complementary and integrative treatments, and more. Several new members attended, and everyone learned.

The St. Paul (east side) group meets monthly in Stillwater. The next meeting of this group will be Wednesday, May 14, 1:00 pm, at the Family Means Center in Stillwater. Please see the side panel for the complete address and a map. Do leave a comment if you have a question.