Minnesota Myeloma

February 2012 Meetings in Minnesota

2012-01-22T21:51:00.002-06:00

Wednesday, February 8, 2012:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Agenda:

Review of ASH Conference by Don Wright
New MM Support Group Web Site by Gerry Landy
Caregiver Education by Jenny West
Patients update each other.

Saturday, February 18, 2012
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

This will be a regular group meeting.

Saturday, February, 2012
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester Support Group Web Page

January 2012 Meetings in Minnesota

2012-01-08T07:32:00.003-06:00

Wednesday, January 11, 2012:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Agenda:

A representative from Onyx will tell us about the a new myeloma treatment Carfilzomib
Dr. Brian Van Ness from the University of Minnesota will update us on his research into the genetics of myeloma.

Saturday, January 21, 2012
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

This will be a regular group meeting. Pat Harwood and Don Wright will talk about the ASH conference.

Saturday, January 21, 2012
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester Support Group Web Page

December 2011 Meetings in Minnesota

2011-11-26T15:04:00.003-06:00

Saturday, December 10, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

This will be a regular group meeting.

Wednesday, December 14, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

This is the Christmas Buffet meeting.

Saturday, December 17, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

November Meetings in Minnesota

2011-11-13T16:33:00.004-06:00

Wednesday, November 16, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Agenda:

Sharing
Don Wright update on lobbying
Marilyn Theesfeld on benefits
Clem Duffy on supplements

Saturday, November 19, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

This will be a regular group meeting.

Saturday, November 19, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Dr. Kumar has been invited to speak.

Snacks, sharing, and always a representative from Mayo Clinic.

October 2011 Meetings in Minnesota

2011-09-23T16:21:00.005-05:00

Wednesday, October 12, 2011:

Myeloma survivors and family/friends are invited to a support group meeting on a paddle boat cruise on the St Croix River. $19.25 each person.

Stillwater, MN
October 12, 2011
11:30 am to 2:00 pm. Don't be late!
MAP

For more detail, see the previous post.

Saturday, October 15, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

This will be a regular group meeting.

Saturday, October 15, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Minnesota Myeloma October Boat Cruise

2011-09-12T21:33:00.006-05:00

Myeloma survivors and family/friends are invited to a support group meeting on a paddle boat cruise on the St Croix River.

Stillwater, MN
October 12, 2011
11:30 am to 2:00 pm
MAP

Please plan to arrive at the boat by 11:15. The boat waits for no one. It will probably be the ANDIAMO, but check back the morning of Oct 12.

Cost: $19.25 per person, which includes a lunch of sliced meats and cheeses served with fresh bakery rolls, sandwich fixings, fresh fruit, seasonal salad, a warm entree selection, and a gourmet cookie selection. Make out the check to St. Croix Boat.

There will be no speaker and no formal sharing session, just one-to-one conversation. Cash bar.

Fall color should be as good as it gets.

September 2011 Myeloma Meetings in Minnesota

2011-08-23T09:16:00.005-05:00

Wednesday, September 14, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our guest will be one of our own. Pat Killingsworth, formerly from this area, will speak as a Millennium Ambassador.

SPECIAL EDUCATIONAL SEMINAR

Saturday, September 17, 2011
8:30 am through lunch
Methodist Hospital Auditorium
6500 Excelsior Blvd.
St Louis Park, MN
MAP

You and yours are invited. Speakers are:

Dr. Morie Gertz, M.D., Professor of Medicine and Chair, Mayo Clinic Dept. Internal Medicine

TOPIC: Myeloma Updates / Questions & Answers

Robert Hall, R.N., C.N.P.

TOPIC: Management of Side Effects

There is no cost to attend this seminar, but you are asked to register your intention to come. Here is the seminar brochure which includes a registration form. (pdf)

Special directions: This meeting is in Methodist Hospital in St Louis Park, as usual, but in a different (larger) auditorium. Park in the Blue Ramp at the front of the hospital, take the ramp elevator down one floor. The Auditorium is on the ground floor next to the Cardiovascular Center.

Saturday, September 17, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Stacy Needs Your Stem Cells

2011-07-25T12:06:00.012-05:00

Stacy is a young Minnesota mother with myeloma. She has tried just about every treatment, including an autologous transplant, but her aggressive myeloma will not relent. She has a Caring Bridge site.

Stacy's doctors want to do an allogeneic transplant, hoping that stem cells from another person, a donor, will give her a brand new immune system which will view her myeloma cells as invaders and will destroy them. This is called the "graft versus myeloma effect" and can sometimes provide a long-term remission.

So far, though, the doctors have found no matching donor.

The web site www.marrow.org gives guidance for registering, and information about the actual process of donating stem cells.

From the web site, some of the donor requirements:

Age 18 to 60.
Good health, including NO CANCER.

We who have myeloma are not eligible, but many of our caregivers, relatives, and friends may be.

According to the web site, the registration procedure involves a swab of cheek cells, to be done at home. Once registered, a person could be "matched" to anyone with a need. If an opportunity to donate is presented, a person can accept or decline it.

Please feel free to link to this post, or copy it directly to your own blog, or make up a better one! Thank you.

August 2011 Meetings in Minnesota

2011-07-25T08:33:00.005-05:00

Wednesday, August 17, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our guest will be Michele O'Brien, RN, CNS, MSN, AOCNS, who is the Survivorship Navigator at Minnesota Oncology in Edina and will speak to us about Survivorship.

Saturday, August 20, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

This will be a regular group meeting.

Saturday, August 20, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

July 2011 Meetings in Minnesota

2011-06-22T17:23:00.004-05:00

Wednesday, July 13, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our guest will be a transplant doctor from the University of Minnesota.

Saturday, July 23, 2011
8:30 am to 3:00 pm
Sheraton Minneapolis
12201 Ridgedale Drive
Minnetonka, MN 55305

International Myeloma Foundation (IMF)
Regional Community Workshop

The Twin Cities Myeloma Support Group invites survivors, families, caregivers, and friends to attend. There is no charge, but please register with the IMF:

o Call 800/452-CURE (2873), or
o email theIMF @ myeloma.org, or
o Register on line HERE.

<=== Click for the full brochure

The regular July support group meeting will not be held.

Saturday, July 16, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

June 2011 Meetings in Minnesota

2011-05-22T11:29:00.003-05:00

Wednesday, June 8, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our guests will be from The Binding Site, makers of the Freelite blood protein laboratory tests which have revolutionized the diagnosis and monitoring of myeloma for some patients.

Saturday, June 18, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, June 18, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Myeloma Support Group Meeting, Rochester Minnesota

2011-05-22T11:13:00.002-05:00

A member of Minnesota's Twin Cities support groups recently attended a meeting of the Rochester support group, and blogged about it HERE.

May 2011 Meetings in Minnesota

2011-04-25T06:24:00.002-05:00

Wednesday, May 11, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

A Celgene patient support advocate will be present. Celgene is the manufacturer of Thalomid, Revlimid, and pomalidomide.

Saturday, May 21, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Lindy Yokanovich from the Cancer Legal Line will discuss Health Care Directives and answer any legal questions.

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, May 21, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

April 2011 Myeloma Meetings in Minnesota

2011-03-24T21:50:00.007-05:00

Wednesday, April 13, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Ardy's chiropractor will discuss laser treatments for neuropathy.

Saturday, April 16, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Heather Spencer, an Oncology Specialist from Millennium, will be able to answer any questions regarding Velcade, funding for co-pays, and new new programs at Millennium.

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, April 16, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic. This month the group will be joined by Dr Shaji Kumar.

Rochester group's Brochure
Rochester group's MMCF Web Site

March 2011 Meetings in Minnesota

2011-03-04T18:02:00.002-06:00

Wednesday, March 9, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Saturday, March 19, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, March 19, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

February 2011 Meetings in Minnesota

2011-02-02T16:44:00.004-06:00

Wednesday, February 9, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Patient advocate Karl Vollstedt will tell his myeloma story.

Saturday, February 19, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, February 19, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

January 2011 Myeloma Meetings in Minnesota

2011-01-04T21:15:00.003-06:00

Wednesday, January 12, 2011:
1:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our speaker will be Kathi Martin, Transplant Coordinator, Abbott Northwestern Hospital. And, as always, we will share our experiences and wisdom with each other.

Saturday, January 15, 2011
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, January 15, 2011
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

December 2010 Meetings in Minnesota

2010-12-04T19:04:00.004-06:00

Wednesday, December 8, 2010:
12:00 to 3:00 pm
NOTE THE SPECIAL 12 NOON START
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

This is the annual Christmas Party, and myeloma patients can party! We laugh a lot. Bring nothing, or bring something, but be sure to bring yourself.

Saturday, December 11, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, December 18, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Our hearts go out to the Rochester group with the loss of Eve Friedli, who died November 22 at her home. With Frank Vondrashek, Eve co-founded the Multiple Myeloma Support Sessions (MMSS) in Rochester, and she founded the Multiple Myeloma Charitable Foundation which raises money and awareness for this disease.

November 2010 Meetings in Minnesota

2010-10-26T14:34:00.003-05:00

Wednesday, November 10, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The speaker will be an Exercise Physiologist from United's Nasseff Heart Center, who will speak on nutrition and heart-related issues. She will speak first, and take questions, after which we will have the usual meeting.

Saturday, November 20, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, November 20, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

October 2010 Meetings in Minnesota

2010-10-01T10:20:00.002-05:00

Saturday, Oct 16, 2010, St Louis Park
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, Oct 16, 2010, Rochester
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Wednesday, Oct 20, 2010, Stillwater:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

September 2010 Meetings in Minnesota

2010-08-21T16:58:00.002-05:00

Wednesday, September 8, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Saturday, September 18, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, September 18, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Raise Myeloma Awareness

2010-08-20T16:29:00.001-05:00

Myeloma patient Keith May and the IMF have entered a racecar design called "The Survivor" in a contest called Sponsafier. The winning entry will be built as a full sized car, showcased at a NASCAR race, and your votes can help push us across the finish line.

This will raise awareness of myeloma, the International Myeloma Foundation, the great work being done to change the course of myeloma, and the work that still needs to be done. Here's what you can do:

Just take 30 seconds every day until August 28, click nascar.myeloma.org, wait for the screen to develop, and simply click the “vote” button. You don't have to log on or enter ANY information. For extra credit, you can do this with every computer that you have available, every day.

“The Survivor” is one of several hundred entries in the Sponsafier contest. Some are just artistic designs and some like Keith’s support a cause. Now we all have the opportunity to support Keith, myeloma awareness, and the IMF by voting every day for the next 11 days, and by asking your friends, families, and colleagues to vote too.

The messages on the car are simple: “Beat myeloma to the finish line,” and simply “Beat Cancer.” What better way to get there than by racing? Click nascar.myeloma.org.

August 2010 Meetings in Minnesota

2010-08-06T07:27:00.004-05:00

Wednesday, August 11, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our speaker will be Colleen A Gegan, licensed acupuncturist and medical herbalist. Who knows what we might learn?

Saturday, August 21, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, the conference room is on the right before the big curved stairway.

Saturday, August 21, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

July 2010 Meetings in Minnesota

2010-07-02T20:50:00.003-05:00

Wednesday, July 14, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our speaker will be Kristen Detweiler Short, C.N.P., of the Mayo Clinic. Dr. Detweiler Short works with Dr. Lacy and other doctors there and is very knowledgable. This is a precious opportunity to get answers to questions about myeloma, treatments, and drug trials.

Saturday, July 17, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, July 17, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Libby Gordon Addresses St Paul Group

2010-06-09T19:39:00.007-05:00

Meeting of the St Paul Myeloma Support Group
June 9, 2010

The speaker was Libby Gordon from the Leukemia and Lymphoma Society (LLS). The LLS covers all blood cancers, including myeloma, and is a very robust organization with a variety of programs. Locally, the LLS office is staffed by 29 fundraisers and Libby, who is the Patient Services Manager.

Financial Grants:
- Every patient can receive $150 each year by submitting a one-page form, no income requirements. This is no longer a reimbursement program.
- The LLS budget year ends June 30, so apply before July 1 and then again in July or later.
Co-pay assistance:
- This reimbursement program does take income into consideration.
- Patient must have insurance and meet income requirements.
- It can pay up to $10,000 per year.
- Usually they pay the co-pay directly.
- The application may be made on-line or by the phone.
Other programs for patients:
- There are many educational booklets, either on-line or by mail. Cancer, nutrition, finances, ...
- LLS does lots of teleconferences on various subjects.
- "First Connection:" This program matches a patient with another myeloma survivor - a mentor, more or less. A First Connection can be requested on line or by phone.
- Information resource center, a toll-free hot line for answers to any questions. They can look for appropriate nearby clinical trials, support groups, and more, including medical questions. They can also answer financial questions. They have voice mail - you can leave a question 24/7.
- There is a quarterly newsletter.
Fundraising: LLS does not actively solicit funds from patients, but anyone might especially enjoy "Light the Night," September 26 at the new Target Field. It includes illuminated balloons, various colors, with survivors white, support red, etc. Festivities begin at 5:00 pm, the walk at 7:00, maybe a mile, inside the stadium.

Thanks to Libby for her presentation, and thanks to the LLS.

June 2010 Meetings in Minnesota

2010-06-08T12:04:00.004-05:00

Wednesday, June 9, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Libby Gordon of the Leukemia and Lymphoma Society (LLS) will be our speaker. The LLS supports the battle against myeloma and other blood cancers.

Saturday, June 19, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, June 19, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

May 2010 Meetings in Minnesota

2010-05-02T21:37:00.007-05:00

Wednesday, May 12, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Lauren Clark/Jennifer Feinber, Celgene Corp will be speaking.

Saturday, May 15, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Dr. Brian McClune, Assistant Professor of Hematology Oncology/Transplant,
University of Minnesota is coming to speak and answer you general question on Myeloma, transplants and research studies at the U of M.

In addition, Lauren Clark, Patient Support Coordinator from Celgene, will come to answer any questions regarding co-pay reimbursements.

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, May 15, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

April 2010 Meetings in Minnesota

2010-04-05T07:24:00.006-05:00

Wednesday, April 14, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Special guest: Gayle Parizino, RN, MA, CPNP - Certified Massage Therapist.

Saturday, April 17, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Saturday, April 24, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Libby Gordon, from the Leukemia & Lymphoma Society, will discuss drug co-pay programs, upcoming events, seminars, etc.

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

March 2010 Meetings in Minnesota

2010-02-28T07:38:00.001-06:00

Wednesday, March 10, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Helen Healy, ND (Naturopathic Doctor), has been invited to speak on any of these issues:

Fatigue from myeloma and its treatments;
Nutrition;
Inflammation and how it relates to cancer; and
Neuropathy.

Dr. Healy is an informative, energetic, and inspirational speaker.

Saturday, March 20, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, March 20, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Second Level of Advocacy

2010-02-11T21:06:00.001-06:00

The International Myeloma Foundation has undertaken a major advocacy initiative, to convince the U.S. Congress to address several issues crucial to cancer patients, including:

Affordable access for as many people as possible;
Elimination of the barrier of "pre-existing conditions; and
Continued investment in research.

Here is the full Statement of Principles.

This is the right time, while health care is up in the air. The initiative now has two levels:

1. Writing:

We write letters to our congresspersons and senators. It is made easy on this IMF web page: Enter your zip in Write to Congress, then on the next page, click "Write to ALL of your representatives with one click." Please do this. It is SO easy to do.

2. Meeting with our elected representatives:

This is the IMF's newest and potentially most-effective initiative. Senators and congresspersons all have offices in their home districts, and we can make appointments to visit them or their staff person. The IMF has scheduled two one-hour web-based seminars to teach us how to do this in a manner most likely to achieve a result:

Tuesday, February 23, 1:00 pm EST (12:00 CST); and
Thursday, February 25, 1:00 pm EST (12:00 CST)

Then we will visit our representatives during myeloma awareness month, "March Against Myeloma."

To take part in the web seminars, email Meghan Pullarn at IMF or call 410-252-3457. She'll be glad to hear from you.

Millennium Representatives Speak to St Paul Group

2010-02-10T20:49:00.008-06:00

Wednesday, February 10, 2010:

Jody Kocer and Amy Modean, of Millennium, spoke to the group about Velcade. This is some of the information presented at the American Society of Hematology (ASH) conference last December:

Velcade is now for newly-diagnosed patients as well as patients with recurring or refractory disease.
Trials are determining what combinations of Velcade and other drugs will give the best outcomes.
A French study has shown that once-weekly works as well as twice-weekly infusions, takes a little longer, but with far less neuropathy.
The initial dosage is pretty much the same for anyone, except a few people whose liver may be at risk.
Trials have shown that 1.3 mg/metersq and 1.0 both show efficacy, but 1.3 is the standard of care.
The Phase II study that established 1.3 mg & twice-weekly infusions was done on patients with several prior therapies, so neuropathy was not as big an issue for two reasons:
- One, many patients had neuropathy already, and
- Two, they had used up most options other than Velcade, and therefore accepted the neuropathy because Velcade kept them alive.
According to one poster talk at ASH, giving Tanespimycin with Velcade may reduce neuropathy. Studies are needed first.

Also:

There is a second-generation proteazome inhibitor in the works at Millennium.
People on Velcade should take an antiviral, because some patients do get shingles. Acyclovir is hard to get right now, but a patient on Velcade should take something.

The St Paul group's next meeting will be Wednesday, March 10, 2010, 1:00 pm at the Family Means Center in Stillwater.

A new group is forming in Eau Claire, Wisconsin. It meets the second Monday of every month, 3:00 to 5:00 pm, at Luther Middleford Hospital, 1221 Whipple Street, Eau Claire, WI, 54703. Phone (715) 838-3311. You are invited! Call first to confirm the time and date.

February Meetings in Minnesota

2010-02-02T20:16:00.001-06:00

Wednesday, February 10, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The Millennium team will be at this meeting, Jody Kocer and Amy Modean.

Saturday, February 20, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, February 20, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Critical Elements of Health Reform

2010-01-27T13:25:00.001-06:00

The International Myeloma Foundation (IMF) is conducting a campaign called the Cancer Patient Statement of Principles, designed to assure that the essential elements of health reform will become law despite the current partisan tension.

These elements are:

Affordable access to basic and catastrophic health care coverage for as many Americans as possible.
The elimination of "pre-existing conditions" as a barrier to health care coverage.
The elimination of annual and lifetime caps on insurance coverage.
Closing of the Medicare "donut hole."
Continued investment in research and innovation to address the needs of those with all deadly diseases.

To show your support for these priorities, please visit the IMF advocacy page and contact your Senators and Congressperson. And feel free to write to your friends about it.

Thank you!

Dr. Brian Van Ness Speaks to St Paul Support Group

2010-01-14T11:53:00.009-06:00

January 13, 2010, meeting of the St Paul Support Group in Stillwater, MN:

Brian Van Ness, Ph.D., Director of the Division of Medical Genomics, co-Director Institute of Human Genetics, University of Minnesota, met with the Stillwater group today at the Family Means Center. The meeting was a discussion, rather than a presentation, and covered several topics:

What causes myeloma?:

There is only a weak statistical connection to farm work and diesel fuel, not much else. A group member noted that workers in the New York City Twin Towers disaster now seem to be developing myeloma at a greater rate and at younger ages than the population, and Dr. Van Ness pointed out that the same group of people were developing other cancers at an unusual rate as well. He explained that wherever new cells are constantly being developed, such as in the bone marrow, there is a greater risk of cancer developing. The "mother" cell needs to impart an exact copy of the DNA to the "daughter" cell, and any interference from environmental factors has the potential to cause cancer.

A member asked whether religion is ever factored into researchers' thinking. Dr. Van Ness responded that spirituality may be beneficial because it can relieve stress which can depress the immune system. Another member pointed out, though, that religion can sometimes also work in the opposite direction by laying on guilt and other stresses.

Personalized medicine:

We get personalized medicine now, because we are all different and our hematologists will try this and that, looking for a treatment that works without debilitating side effects. But with improved personalized medicine, the doctor would know in advance what will work. Genetics may help to predict both the efficacy and the risks of a specific drug for any particular individual, possibly even the best starting dose.

How long will this take? Years, maybe four or five years, maybe more. There is now an explosion in the use of DNA information regarding many cancers and, indeed, many other diseases besides cancer. One of the answers that may be available first: What are the genetic variations that predict drug response?

Some genetic tests are already available. The FDA has recommended genetic testing for:

Warfarin, which is a blood thinner which can work far too well on some people and not well enough on others;
Prozac, which has the potential to be very harmful to some children who do not metabolize it well; and
Thiopurine, used for leukemia, which is a very good drug but can kill 1 of 300 children by wiping out the bone marrow.

Maybe there will be an equation, eventually, or a computer program, which will bring in all available information, giving each factor its own weight, and will come up with a best treatment.

Ethical issues:

What is the best balance in protecting the personal information of an individual who has submitted a DNA sample for a study, such as Bank on a Cure. Example: What if I discover that one particular individual has a very high risk for breast cancer? Or diabetes? This is called an "incidental finding," because it is not information that the study was looking for. Do you tell the patient? What if the patient really would rather not know? Is there an ethical obligation to tell the patient something? Dr. Van Ness is on a national committee which is wrestling with this issue right now.

Whether or not there is an incidental finding, is there an obligation to return the results of a scanned genome back to a study subject who wants it? Right now that information would be of little use, but it might become quite valuable in a few years as the human genome becomes better understood and methods of analysis improve.

We expect that the myeloma patients of the future will benefit from the results of research such as Bank on a Cure, but will those of us who contributed samples to it be able to benefit from its findings?

Dr. Van Ness is considering a web-based genetic analysis tool, to be available to each person who contributes DNA. It could be updated whenever a new genetic factor is identified. There are issues, because of the Freedom of Information Act and other federal and state laws.

Personalized Health Care:

Maybe "personalized health care" is a better concept than "personalized medicine," because it includes all of the modes of care that we need.

Dr. Van Ness quoted biotech guru Leroy Hood, who has said that medicine should be: "Personalized, predictive, preventive, and participatory," P4 medicine. Research should move out of the lab and into "connected thinking," with physicians connected to researchers, pharmacists, nurses, patients, and other providers. This will help produce the equation that will yield the best treatment for an individual.

The International Myeloma Foundation (IMF) brings health care professionals together three times per year to discuss the best modes of therapy. As an example of this discussion, there is currently a huge debate about very different approaches for treating newly-diagnosed patients: (1) Aggressive therapy with multiple treatments, in pursuit of a complete remission, or (2) Less-aggressive therapy, using one or two treatments at a time, perhaps in sequence, aiming to make the disease a chronic one. There is currently no clear evidence that one approach is better than the other. Doctors who embody these polar approaches might be Dr. Barlogie at Arkanses versus Dr. Rajkumar at Mayo.

Major Initiative in Personalized Health Care at the University of Minnesota:

Dr. Van Ness is launching a major initiative at the University in Personalized Health Care, supported by a strong research program in genomics. This initiative is sponsored by the Minnesota Medical Foundation and the Cancer Center, with a call for philanthropic support. They are looking to raise $ 5 million in the campaign. If you are interested in contributing, contact Dr. VanNess at vanne001@umn.edu or Cathy Spicola at the Minnesota Medical Foundation, c.spicola@mmf.umn.edu.

Upcoming January Meetings

2009-12-28T11:39:00.002-06:00

Wednesday, January 13, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Dr. Brian VanNess of the University of Minnesota will speak on genetics and ethics.

Saturday, January 16, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, January 16, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

St Paul Meeting Changed to Dec 16

2009-12-14T13:54:00.002-06:00

Because of the blizzard on December 9, the St Paul meeting was changed to Wednesday, December 16, 12:00 pm to 3:00 pm. So you didn't miss it after all!

As planned before, this is a special Christmas Party meeting, starting an hour earlier than usual. Bring your appetite.

Don Wright will share a little about his experience at the American Society of Hematology (ASH) Conference in New Orleans last week, and of course we will share out own stories, successes, and knowledge.

Wednesday, December 16, 12:00 pm to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Upcoming Minnesota Meetings

2009-11-24T06:47:00.003-06:00

Wednesday, December 9, 2009
12:00 noon to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Special Christmas Party meeting starts an hour earlier than usual. Bring your appetite.

Amy Modean and Jody Kocer From Millennium Company will present an update on Velcade and other research.

Saturday, December 12, 2009
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

Saturday, December 19, 2009
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Seminar Nov 7, 2009

2009-10-26T07:56:00.010-05:00

8:30	Registration
9:00	Teresa Micelli, RN - Transplant Coordinator, Mayo Clinic
	Welcome
9:10	Dr. Martha Lacy, M.D. - Hematology & Transplant Center Mayo Clinic
	Myeloma Updates
10:30	Break
10:45	Annemiek Sistermanns - Rehab Center Park Nicollet
	Strength, Endurance, & Flexibility for the Cancer Survivor
11:15	Debi Lillegard - Oncology Family Counselor
	The Emotional Side of Cancer
12:00	- 1:00 Lunch

This seminar is supported by educational grants from:

Gold Sponsor	Celgene Pharmaceutical Company
Platinum Sponsor	Millennium Pharmaceuticals, Inc.
Silver Sponsor	Vidacare

Please register as soon as you can, so that we can plan for the number of attendees. Call Pat 952/473-1782 or Fred 952/938-0232, or email us at tcmyeloma@gmail.com. Please include the names of those who will attend.

Printable Color Brochure, click to enlarge:

Upcoming Minnesota Meetings

2009-10-08T14:04:00.004-05:00

Wednesday, October 14, 2009
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Dr. Jim O'Connor, orthopedist, will discuss bone issues. Pat Killingsworth will discuss different treatment philosophies and his visit to Millennium. As always, attendees will share experiences and knowledge.

Saturday, October 17, 2009
10:00 am to 12:00 noon
Methodist Hospital
Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (north) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room before the big curved stairway.

Saturday, October 17, 2009
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Saturday, November 7, 2009
8:30 am -
Embassy Suites in Bloomington
Fall Education Seminar & Lunch

MMRF Race for Research

2009-09-27T12:33:00.002-05:00

Today's fourth annual Minnesota MMRF Race for Research was delightful, with perfect weather, a nice band, good food, lots of coffee, several hundred runners, and even more walkers.

Dr. Stephen J. Russell, of Mayo Clinic, spoke briefly at the race kick-off. According to Dr. Karen Bishop Morris, midwest development manager for the MMRF, the 1000+ attendees raised $150,000 for myeloma research.

Myeloma Education Seminar and Lunch

2009-09-24T16:30:00.037-05:00

All Multiple Myeloma Patients

You are invited to a Fall
Educational Seminar and Lunch

Saturday, November 7, 2009

Embassy Suites Hotel
2800 American Blvd West, Bloomington, MN 55431
(494 and Penn Ave Exit)

This Seminar is hosted by:
The Twin Cities Myeloma Foundation

REGISTRATION IS FREE AND LUNCH WILL BE PROVIDED.
8:30 Registration will begin.

9:00 Welcome

For actual speaker times, email us closer to the seminar date at tcmyeloma@gmail.com or recheck this web site.

Keynote Speakers:

Debra Lillegard - Oncology Family Counselor - Park Nicollet: "The Emotional Side of Cancer"

Annemiek Sistermans – Rehab Center - Park Nicollet: "Strength, Endurance & Flexibility for The Cancer Survivor"

Dr. Martha Lacy, M.D. - Hematology and Transplant Center Mayo Clinic: "Myeloma Updates"

This seminar is supported by educational grants from:

Gold Sponsor	Celgene Pharmaceutical Company
Platinum Sponsor	Millennium Pharmaceuticals, Inc.
Silver Sponsor	Vidacare

Please register no later than November 1, 2009. Call Pat 952/473-1782 or Fred 952/938-0232, or email us at tcmyeloma@gmail.com. Please include the names of those who will attend.

Printable Color Brochure, click to enlarge:

MMRF Race for Research 5k Run/Walk

2009-09-14T07:13:00.005-05:00

Sunday, September 27, 2009, start time 9:00 am, come early.

The Multiple Myeloma Research Foundation (MMRF) holds an annual 5k run/walk at Lake Phalen Park in St Paul. It is a fun event which helps raise money for myeloma research, $120 million and counting.

Click HERE and then click "Register as an Individual" or "Register as a Family" on the left-hand panel.

Enjoy!

Memorial Service for Helen Berg

2009-08-05T21:52:00.003-05:00

Helen Berg's memorial service will be held at Plymouth Covenant Church, 4300 Vicksburg Lane N, Plymouth, at 2:00 p.m. on Saturday, August 15th.

For more information, please visit her CaringBridge site.

Helen Berg Died

2009-08-01T08:53:00.004-05:00

Helen Berg, a co-founder and a primary organizer of the Twin Cities Myeloma Support Group, died at 5:12 PM Friday, July 31, 2009. Information about her final celebration will be on her CaringBridge site.

Go with God, Helen. We will miss you very much.

Important Seminars in Minnesota

2009-07-18T21:12:00.006-05:00

August 28 & 29, 2009:

The International Myeloma Foundation (IMF) will host one of its wonderful Patient and Family Seminars at the Westin Edina Galleria Friday afternoon and all day Saturday. This seminar will include sessions by at least six different doctors and chances to speak one-on-one with any of them. It's a big event. Doctors and attendees will come from all over the USA and from several other countries. Cost is $60.00 per person for both days, or $30.00 for Saturday only, and includes meals. Go here for agenda and registration. Or call 800-452-2873.

November 7, 2009:

The Twin Cities Myeloma Foundation and Twin Cities Support Group invite you to attend an educational seminar and lunch at the Embassy Suites in Bloomington. Speakers will be Dr. Philip Greipp and Dr. Martha Lacy, Mayo Clinic, and Debra Lillegard, LMFT, Park Nicollet. No cost to attendees. Please save the date and plan to come, more information to follow. It's a chance to learn, and your attendance supports the Twin Cities Myeloma Foundation. Click HERE for a preliminary brochure.

Calendar through November 7:

* Wed Aug 12, 2009 1:00 pm to 3:00 pm	Regular St Paul meeting. Dr Charles W Bransford of Stillwater Medical Group will speak on treatments for cancer patients. See the side panel for directions to the Family Means Center.
* Sat Aug 15, 2009 10:00 am to noon	Regular Rochester meeting.
* Sat Aug 15, 2009	The regular Minneapolis meeting will not be held, because of the IMF Patient & Family Seminar Aug 28 - 29.
* Fri Aug 28, Sat Aug 29	IMF Patient & Family Seminar. See side panel.
* Wed Sep 9, 2009	Regular St. Paul meeting.
* Sat Sep 19, 2009	Regular Minneapolis meeting.
* Sat Sep 19, 2009	Regular Rochester meeting.
* Wed Oct 14, 2009	Regular St. Paul meeting.
* Sat Oct 17, 2009	Regular Minneapolis meeting.
* Sat Oct 17, 2009	Regular Rochester meeting.
* Sat Nov 7, 2009	Educational Seminar and lunch at Embassy Suites in Bloomington, hosted by the Twin Cities Myeloma Foundation. Speakers: Dr Philip Greipp and Dr Martha Lacy, Mayo Clinic, and Debra Lillegard, Park Nicollet. No charge. More to follow - save the date.

Upcoming Meetings

2009-07-09T20:37:00.004-05:00

Things are happening!

* Sat Jul 18, 2009 10:00 am - noon	Regular Minneapolis Meeting at the Methodist Hospital Cancer Center. See the side panel for address and a map. Park in the Orange Ramp, take elevator to 1st floor, take hallway toward entrance, look for conference room on the right before the big stairway.
* Sat Jul 18, 2009 10:00 am - noon	Regular Rochester meeting at the Gift of Life Transplant House. See the side panel for address and map.
* Wed Aug 12, 2009 1:00 pm to 3:00 pm	Regular St Paul meeting. Dr Charles W Bransford of Stillwater Medical Group will speak on treatments for cancer patients. See the side panel for directions to the Family Means Center.
* Sat Aug 15, 2009 10:00 am to noon	Regular Rochester meeting.
* Sat Aug 15, 2009	The regular Minneapolis meeting will not be held, because of the IMF Patient & Family Seminar Aug 28 - 29.
* Fri Aug 28, Sat Aug 29	IMF Patient & Family Seminar. See side panel.
* Sep, Oct	More regular meetings, listed on the side panel.
* Sat Nov 7, 2009	Educational Seminar and lunch at Embassy Suites in Bloomington, hosted by the Twin Cities Myeloma Foundation. Speakers: Dr Martha Lacy, Mayo Clinic, and Debra Lillegard, Park Nicollet. No charge. More to follow - save the date. See the brochure below.

Kathleen Picard Speaks to St Paul Group

2009-07-09T18:33:00.003-05:00

Kathleen Picard, PT, of OSI Physical Therapy in Stillwater, spoke to the St Paul Myeloma Support Group Wednesday, July 8, on the topic "Bone Health and Myeloma." She discussed osteoporosis and its risk factors, and described remedies including medications, diet, exercise, strength training, posture training, and balance training. She showed members how to strengthen their bones, and how to evaluate their own risk of falling and ways to reduce that risk.

The next meeting of the St Paul group will be 1:00 to 3:00 pm Wednesday, August 12, 2009, at the Family Means Center. Please see the side panel for specific directions.

Twin Cities MM Support Groups Meet

2009-05-16T21:21:00.008-05:00

Saturday, May 16, 2009, Minneapolis Group

About fourteen survivors and many family members met in the new Cancer Center Conference Room, sharing experiences and the various treatments each has received. Pat distributed a handout titled "Dana-Farber Neuropathy Regimen," describing a vitamin and supplement regimen to combat neuropathy and another regimen for cramping. The information in the handout is available HERE on the MMSupport.net website.

Wednesday, May 13, 2009, St. Paul Group

Ten survivors and many family members met at the Family Means Center in Stillwater. Pat Killingsworth, a member and survivor, introduced his new book "Living With Multiple Myeloma." The book is available for sale HERE on Pat's web site HelpWithCancer.org. Proceeds from the sale of the book go to fight cancer.

May 2009 Meetings in Minnesota

2009-04-28T18:05:00.003-05:00

Wednesday, May 13, 2009, 1:00 pm: St Paul
Saturday, May 16, 2009, 10:00 am: Minneapolis
Saturday, May 16, 2009, 10:00 am: Rochester

The St Paul group will meet in Stillwater on Wednesday, May 13. Karl Vollstedt will conduct an audio review. All are welcome, coffee and snacks are provided.

1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The Minneapolis support group will meet in St Louis Park on Saturday, May 16, in the Park Nicollet Cancer Center Conference Room at Methodist Hospital. All are welcome, coffee and snacks are provided. See the map below and follow the green line, not the blue. Park in the orange ramp at the back of the hospital, take the ramp elevator to First Floor, follow the hallway to the conference room on the right.

10:00 am to noon
Methodist Hospital
Park Nicollet Cancer Center Conference Room
6500 Excelsior Blvd
St Louis Park, MN
MAP

The Rochester support group will meet Saturday, May 16. A Mayo Clinic representative is always present, and breakfast is provided. All are welcome.

10:00 am to noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

April 2009 Meetings in Minnesota

2009-04-17T15:29:00.002-05:00

Saturday, Apr 18, 2009, 10:00 am: Minneapolis
Saturday, Apr 18, 2009, 10:00 am: Rochester
Wednesday, May 13, 2009, 1:00 pm: St Paul

The Minneapolis support group will meet Saturday, April 18, in the Park Nicollet Cancer Center Conference Room at Methodist Hospital. All are welcome, coffee and snacks are provided. See the map below and follow the green line, not the blue. Park in the orange ramp at the back of the hospital, take the ramp elevator to First Floor, follow the hallway to the conference room on the right.

10:00 am to noon
Methodist Hospital
Park Nicollet Cancer Center Conference Room
6500 Excelsior Blvd
St Louis Park, MN
MAP

The Rochester support group will meet Saturday, April 18. A Mayo Clinic representative is always present, and breakfast is provided.

10:00 am to noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

The St Paul group will meet Wednesday, May 13. Karl Vollstedt will conduct an audio review. All are welcome, coffee and snacks are provided.

1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

St Paul Group Sets Speakers for Five Meetings

2009-03-11T20:13:00.002-05:00

The St. Paul Minnesota Myeloma Support Group met today, March 11. Two of the attendees were new members, and two were familiar faces just returned from stem cell transplants. After sharing about our own experiences with various treatments, we heard reviews of last December's very encouraging meeting of the American Society of Hematology.

The group has set a schedule of speakers for the next five meetings:

Apr 8, Jennifer Feinberg & Lauren Clark, Celgene Corporation
May 13, Dr. Ewa Pachelka, Psychiatrist, Stillwater Medical Group
Jun 10, Dr. Manny Steil
Jul 8, A physical therapist from Orthopaedic Sports Inc (OSI)
Aug 12, Dr. Charles Bransford, Stillwater Medical Group

March 2009 Meetings in Minnesota

2009-02-21T06:42:00.015-06:00

Wednesday, Mar 11, 2009, 1:00 pm: St Paul
Saturday, Mar 21, 2009, 10:00 am: Minneapolis
Saturday, Mar 21, 2009, 10:00 am: Rochester

December's meeting of the American Society of Hematologists will be reviewed in the St Paul meeting Wednesday, March 11, with tapes and videos from several doctors. All are welcome, coffee and snacks are provided.

1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The Minneapolis support group will hold its next regular meeting Saturday, March 21, in the Park Nicollet Cancer Center Conference Room at Methodist Hospital. All are welcome, coffee and snacks are provided. See the map below and follow the green line, not the blue. Park in the orange ramp, take the ramp elevator to First Floor, follow the hallway to the conference room on the right.

10:00 am to noon
Methodist Hospital
Park Nicollet Cancer Center Conference Room
6500 Excelsior Blvd
St Louis Park, MN
MAP

The Rochester support group will hold its next regular meeting Saturday, March 21. A Mayo Clinic representative is always present, and breakfast is provided.

10:00 am to noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

February 2009 Meetings in Minnesota

2009-01-24T15:13:00.005-06:00

Wednesday, Feb 11, 2009, 1:00 pm: St Paul
Saturday, Feb 21, 2009, 10:00 am: Minneapolis
Saturday, Feb 21, 2009, 10:00 am: Rochester

Jody Koccer of Millenium Pharmaceuticals will speak to the St Paul group on Wednesday, February 11. All are welcome, coffee and snacks are provided.

1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The Minneapolis support group will hold its next regular meeting Saturday, February 21, in the Park Nicollet Cancer Center Conference Room at Methodist Hospital. All are welcome, coffee and snacks are provided. See the map below and follow the green line, not the blue.

10:00 am to noon
Methodist Hospital
Park Nicollet Cancer Center Conference Room
6500 Excelsior Blvd
St Louis Park, MN
MAP

The Rochester support group will hold its next regular meeting Saturday, February 21. A Mayo Clinic representative is always present, and breakfast is provided.

10:00 am to noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Minneapolis Group Sets Dates, Location

2009-01-24T14:48:00.007-06:00

The Minneapolis Myeloma Support Group, the Twin Cities' original and largest group, has set the third Saturday of each month as the date, and the Park Nicollet (Methodist Hospital) Cancer Center Conference Room as the location for upcoming meetings.

Heretofore the group has met at intervals of about six weeks, but from now on it will be monthly, always on Saturday from 10:00 am to noon. Some upcoming dates are:

Feb 21
Mar 21
Apr 18
May 16

Recently the group has met in the Cardiovascular Center at Park Nicollet during construction at the cancer center, but the Cancer center Conference Room will be the new home starting immediately.

Methodist Hospital
Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP (follow the green line)

January Meetings in Minnesota

2008-12-22T07:24:00.010-06:00

Wednesday, Jan 14, 2009, 1:00 pm: Stillwater
Saturday, Jan 17, 2009, 10:00 am: Rochester
Saturday, Jan 24, 2009, 10:00 am: St. Louis Park

Ms. Sandra L. Tazelaar (Sandi), a Licensed Independent Clinical Social Worker and therapist, will speak to the St. Paul group on January 14. Ms. Tazelaar (Sandi) is especially helpful in counseling patients with cancer.
1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The Rochester, Minnesota support group will hold its next regular meeting Saturday, January 17, 10:00 am to noon. They are on the third Saturday of each month - the full 2009 schedule is listed in the panel to the right. A Mayo Clinic representative is always present. Breakfast is provided.
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

The Minneapolis, Minnesota support group will hold its next regular meeting Saturday, January 24, 10:00 am to noon. This is the original and largest Twin Cities support group, led by long-term myeloma survivors.

We will meet in the Cardiovascular Center. Park in the blue ramp on the east side of the hospital, and bring in your ticket for validation. See MAP.
Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Pot Luck in Stillwater

2008-12-03T06:49:00.003-06:00

The St Paul support group invites you to a pot luck on December 10, 2008. Bring a favorite dish, or just come - there will be plenty of food.

The meeting will be dedicated to Gene and Ardie, both of whom will be undergoing stem cell transplants at that time.

1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Dr Van Ness Will Speak to St Paul Group

2008-11-17T07:51:00.004-06:00

Dr Brian Van Ness, Ph.d, department head of the Department of Genetics, Cell Biology and Development at the University of Minnesota Masonic Cancer Center, will speak to the St Paul support group in Stillwater on Wednesday, Nov. 19. Dr. Van Ness is director of the "Bank on a Cure" program at the university, which seeks to find genetic markers which can assist in a patient's prognosis and, especially, can tell doctors which treatments will be most effective for that patient.

The meeting will be:
Wednesday, Nov 19, 2008, 1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Twin Cities Myeloma Foundation Invites You

2008-11-08T16:22:00.028-06:00

To join us for
an Educational Seminar and Holiday Lunch

Saturday, December 13, 2008
Sofitel Hotel
5601 West 78th St.
Bloomington, MN
(I-494 and Hwy 100) MAP

Registration at 8:30, program at 9:00, lunch from 12:00 to about 1:00 pm.
No charge for registration or lunch, but you do need to RSVP, see below.

Speakers
Morie Gertz, MD	Chair, Department of Internal Medicine, Mayo Clinic Chair, Mayo transplant protocol for Multiple Myeloma. Dr. Gertz will speak about new developments at the very recent conference of the American Society of Hematology.
Helen Healy, ND	Doctor of Naturopathic Medicine Dr. Healy will speak about the role of naturopathy in healing, and especially about nutrition.

Come share your experience and gain strength from others as you join us for this very informative seminar followed by a relaxing holiday lunch.

First speaker Helen Healy at 9:00.

To register for this seminar please R.S.V.P. as soon as possible by emailing us at: tcmyeloma @ gmail.com, or call Pat at 952 473 1782 and leave your first and last name on the voice mail.

This seminar is supported by unrestricted educational grants from:
Celgene Pharmaceutical Company
Millennium Pharmaceuticals, Inc.

ASH Conference Update Seminar

2008-09-28T13:48:00.008-05:00

On Saturday, December 13, 2008, The Minneapolis Myeloma Support Group will hold a seminar on the results of the annual meeting of the American Society of Hematology (ASH), which will be held just a few days earlier, December 4-9. We will get a hot-off-the-press update by a hematologist who attended this key conference. A few of the talks already scheduled for the conference are:

High-risk myeloma;
Stem-cell imaging;
Hematology and aging;
Deep-vein thrombosis; and
Many, many more.

In addition, Helen Healy, ND, will speak on the role of naturopathy in treatment of cancer. Dr. Healy is an experienced, graduate naturopathic doctor with a specialty in oncology, and an energizing lecturer as well.

Further, tentatively, a speaker will be invited to talk about medical insurance prescription coverage.

Details are not all settled yet, but the meeting is currently planned to start at 9:00 am, ending at 12:00 noon, at the Hotel Sofitel, 5601 West 78th St., Bloomington, MN, at the junction of Hwy 100 and I-494. Take Hwy 100 to Industrial Blvd, then immediately south on the service road which is on the west side of 100. MAP

Stay tuned. This is an important event - please do put December 13 on your calendar and plan to come.

Other Meeting Notices:

The St Paul Support group will have its regular monthly meeting:

Wednesday, Oct 15, 2008, 1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

The Rochester Support Group will also meet:

Saturday, Oct 18, 2008, 10:00 am - Noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Twin Cities Regional Community Workshop Held

2008-09-27T19:07:00.003-05:00

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

2008-09-02T10:56:00.007-05:00

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:

Twin Cities Workshop Sept 27

2008-08-24T11:12:00.007-05:00

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

2008-08-11T07:41:00.004-05:00

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

2008-07-22T20:03:00.004-05:00

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

2008-07-22T19:52:00.006-05:00

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

2008-06-14T12:48:00.002-05:00

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

2008-06-02T20:19:00.004-05:00

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

2008-05-22T09:31:00.002-05:00

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

2008-05-22T06:45:00.008-05:00

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

2008-04-20T18:01:00.010-05:00

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.

Three Groups To Meet in April

2008-03-20T12:35:00.008-05:00

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

The St. Paul meeting will be Wednesday, April 16, 2008, 1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave South
Stillwater, MN 55082
Map

The Minneapolis meeting will be Saturday, April 19, 2008, 10:00 am to 12:00 noon
Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN
Map

BUT STAY TUNED: The Minneapolis meeting location may change from Methodist Hospital to a different hospital, in which case a notice will be posted on this web site immediately.

The Rochester meeting will be Saturday, April 19, 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. Occasionally 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 Minneapolis meeting, members 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.

Next Rochester Meeting: Mar 15

2008-03-12T16:30:00.001-05:00

The next meeting in Rochester, Minnesota, will be:

Saturday, March 15, 2008, 10:00 am to Noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

This sharing group holds free meetings for multiple myeloma patients and their families, with informal discussions and questions. Occasionally there are invited speakers to provide information about various topics relating to myeloma. You and your family and other caregivers are invited, whether you live in the area or are visiting Rochester.

Correction: Next St Louis Park Meeting March 15

2008-02-12T17:53:00.000-06:00

The earlier post indicating that the next St Louis park meeting would be March 1 was incorrect; the meetng date has been changed. That post has now been corrected.

The next meeting will be:

March 15, 2008, 10:00 am to 12:00 noon
Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN
Map

Correction Notice: Rochester Meeting

2008-01-26T07:22:00.000-06:00

The next Rochester meeting was originally listed for February 6 in the previous post, which was incorrect. The meeting will be Saturday, February 16, 10:00 am to noon. The notice in the previous post has been corrected.

Next Rochester Meeting: Feb 16

2008-01-25T10:01:00.000-06:00

The next meeting in Rochester, Minnesota, will be:

Saturday, February 16, 2008, 10:00 am to Noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

This sharing group holds free meetings for multiple myeloma patients and their families, with informal discussions and questions. Occasionally there are invited speakers to provide information about various topics relating to myeloma. You and your family and other caregivers are invited, whether you live in the area or are visiting Rochester.

Meetings have already been scheduled for every month in 2008; see the right-hand panel for the complete list.

Also, the Rochester support group has its OWN web page, which is also listed permanently in the right-hand panel under Myeloma Advocacy, Support, and Treatment.

Next Stillwater Meeting: Feb 13

2008-01-19T19:20:00.000-06:00

The next Stillwater meeting will be:

Wednesday, February 13, 2008, 1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave South
Stillwater, MN 55082
Map

Program: Two members will discuss and compare their experiences with autologous stem cell transplants, one at Mayo and the other at the U of M. In addition, we will have the usual discussion of diagnoses, treatments, information, and advice.

Next St Louis Park Meeting: March 15

2008-01-19T18:57:00.000-06:00

At today's meeting, the St Louis Park attendees shared their diagnoses, treatments, hopes, and other information with each other. Two new members were present.

The next meeting will be:

March 15, 2008, 10:00 am to 12:00 noon
Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN
Map

Helen Healy Spoke at Stillwater, Jan 16

2008-01-16T20:45:00.000-06:00

Notes from Doctor Helen Healy's talk at the Stillwater Myelma Support Group meeting, January 16, 2008

Helen classifies foods broadly into three catagories:

Vibrant foods such as fresh raw vegetables, fruits, nuts, seeds, sprouts, whole grains, and healthy oils;
Dull Foods such as overly cooked foods, packaged foods, "Healthy" bars, and boxed cereals;
Toxic foods such as processed meats, cookies and crackers with hydrogenated oils, soda pop with high-fructose corn syrup or artificial sweeteners, most packaged snacks, dairy products containing hormones or antibotics administered to the cows.

Vitamin A and carotenes:

Found in carrots, apricots, more ...
Shown to inhibit the repair of radiation damage in cancer cells.
Help cellular differentiation: Lungs, bladder, more ...

Vitamin C:

Found in peppers, broccoli, strawberries, oranges, ...
Shown to stimulate white blood cells.
Assists repair of connective tissue.
Activates natural killer (NK) cells, one of the body's primary defenses

Vitamin D:

Found in dark leafy green vegetables, cold water fish, sunshine, ...
Inhibits replication of cancer cells.
Induces apoptosis (programmed cell death) in cancer cells.
Reduces invasiveness and angiogenesis.
As an antiangiogenic agent it fights many kinds of cancer.
Dosage: 2000 IU daily (conservative), naturopathic 6000 IU!
There is a simple blood test to evaluate it: 25-OH vitamin D test.

Vitamin E:

Found in whole grains, seeds, nuts ...
Great anti-oxidant.
The recent study purporting to show a higher death rate from Vitamin C was seriously flawed.
It assists healing, soothes drug side effects, protects LDL.

Vitamin K:

Found in dark leafy greens, ...
Helps to replace the calcium in bones.
Helps against allergic reactions.
There are drops for Vitamin K.

Folic Acid:

Found in beans, asparagus, lentils, walnuts, spinach, ...
Assists in DNA repair.
Beneficial for those who drink alcohol, because alcohol uses up B complex.
Helps prevent cancer from progressing, can reverse it by restoring DNA.

Calcium:

Found in seaweed, almonds, cheese, watercress, ...
Shown to reduce colon cancer.
Important for bones, teeth ...

Magnesium:

Wheat bran, brown rice, cashews, ...
Activates enzymes.

Potassium:

Bananas, oranges, lima beans, ...
Maintains heart rhythm.
Regulates water balance.
Improves conduction of nerve impulses.

Selenium:

Found in brazil nuts, whole wheat bread, orange juice, ...
Prevents free-radical damage to cell membranes.
Stimulates white cells and thymus function.
Increases activity of NK cells.
Associated with 50% decreased risk of mortality from cancer.
Shown to help cancers of: Lung, colon, prostate, stomach, esophagus, liver.
Dosage: 200-400 mcg/day.

Zinc:

Found in fresh oysters, pumpkin seeds, pecans ...
Antioxidant.
Protective against prostate cancer.
Aids in production of IL-1.

Flavonoids:

Cherries, grapes, blueberries, strawberries ...
Strengthen capillary integrity.
Shown to enhance radiation-induced death by decreasing repair of DNA from radiation damage.
Stimulate NK cells.
Inhibit enzymes that cause inflammation.
Inhibit tumor growth and may reduce metastasis.
Reduce lung cancer by inducing apoptosis.
Inhibit proliferation of leukemia cells, again by apoptosis.
Specific flavonoids:
- Resveratrol
- Curcumin
- Quercetin

Essential fatty acids:

Found in fish, shellfish, flax seeds, sea veggies ...
Direct anti-inflammatory effects.
Inhibit growth of breast & lung cancer cells.
Improves quality of life for pancreatic cancer patients.
Reverses weight loss, gains are in lean tissue.

Inflammation is a good target for treatment, because tumor cells exploit inflammation.

Medicinal mushrooms:

Antiproliferative
Activate NK cells
Increase tumor-toxic cytokines
Protective against chemo toxicity
Can be taken with conventional medicines
Dosage: 1500 mg twice daily btw meals

Melatonin:

Activates NK cells
Antioxidant
Supports apoptosis
Inhibits negative effects of estrogen
Reduces signals for tumor growth
Improves quality of life during conventional treatment
Dosage: 20 mg at night.

Nutritional yeast is loaded with nutrients

Coenzyme Q-10:

Antioxidant
Mitochondrial protection
Protects heart from effects of adriamycin
Dose: 100 to 200 mg/day, 400 ok

L-carnitine helps convert fat into energy.

Real foods have a story to tell. As a species, we grew up with them and need them, as contrasted with processed "food" products which we do not need and which tend to harm us.

Daily: Take a high quality multivitamin, extra E, fish oil, vitamin D, possibly more. Then take extra supplements to deal with specific issues. Example: for neuropathy, one might eat lots of berries and take alpha-lipoic acid. Thirty minutes before serious exercise, one might take alpha-lipoic acid, L-carnitine, Coenzyme Q-10.

Give chemotherapy 48 hours to work, then supplements can help restore the body.

Quercetin is a strong anti-inflammatory. Could 3 grams per day be a substitute for dexamethasone?

Helen practices at
Wellspring Naturopathic Clinic
905 Jefferson Ave., Suite202
Saint Paul, MN 55102
651/222-4111

Editor's note: Doctor Healy will be invited to examine these notes for content and accuracy; please stay tuned.

St Louis Park Group Meets January 19

2008-01-01T09:02:00.000-06:00

The St Louis Park (Minneapolis) Myeloma Support Group will meet Saturday, January 19, 2008, from 10:00 am to 12:00 noon at:

Methodist Hospital
6500 Excelsior Blvd.
St Louis Park, MN 55426

The hospital is located about six tenths of a mile west of Highway 100 on the north side of Excelsior Blvd. Parking in the Orange lot costs $2.00. Use the north side Meadowbrook entrance, turn right to the conference room.

Click the map to enlarge it:

Helen Healy To Speak in Stillwater

2007-12-20T11:54:00.000-06:00

The Stillwater myeloma support group will host Helen C. Healy, N.D., as its speaker at the January 16 meeting. She is a naturopathic doctor and a member of Oncology Association of Naturopathic Physicians, and will give us a different and complementary view of the treatment of cancer.

Helen C. Healy, N.D.
Wellspring Naturopathic Clinic
905 Jefferson Ave., Suite202
Saint Paul, MN 55102
651/222-4111

Dr. Healy has suggested that support group members might wish to contact her in advance with questions. Her email address is on her web site, Wellspring Clinic.

The meeting is Wednesday, January 16, 2008, from 1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN

Stillwater Group Met Dec 12

2007-12-12T20:38:00.000-06:00

Pam McAlister, RSHom (NA), CCH, spoke to the Stillwater Minnesota Myeloma Support Group today, December 12, 2007. Ms. McAlister is a homeopathic doctor who graduated from the Northwestern Academy of Homeopathy in Minneapolis, studied further in India, and now has a practice in St. Paul. She treats children and adults with a variety of chronic and acute conditions, offering remedies which target the underlying conditions.

As we usually do, each group member shared a little about their myeloma and its treatment.

The next meeting is:

Wednesday, January 16, 2008
1:00 - 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN

There will be another invited speaker at the January meeting - please check back to find out who that will be.

Call for Suggestions and Additions

2007-12-07T09:18:00.000-06:00

Minnesota Myeloma is a new blog, just stretching its wings. You are invited to leave comments with suggestions, criticism, or other content of interest to the myeloma community.

In particular, if you can think of links that should be added to the right-hand panel, please suggest them.

Notice of Email Scam

2007-12-04T16:44:00.000-06:00

The St Louis Park myeloma support group has been using an email address of mplsmyeloma@hotmail.com. On December 3, someone hacked into that email account and took it over, changing the password, then sent an email to everyone in the address list saying that Pat Harwood was in Nigeria and needed money.

THAT EMAIL WAS FRAUDULENT! If you received it, please do not respond to it. Pat Harwood is safe in Minnesota and never was in Nigeria. A serious attempt has been made to shut that email address down. Regardless, DO NOT SEND MONEY! It's a scam.

A new email address will soon be created for the St Louis Park group, on a server that is not so easily hacked.

Pam McAlister to Speak in Stillwater

2007-11-30T17:35:00.000-06:00

The Stillwater myeloma support group will host Pam McAlister as its speaker at the December 12 meeting. She is a homeopathic doctor who will give us a different and complementary view of the treatment of cancer.

Pam McAlister, RSHom, CCH

Homeopathy of St Paul

821 Raymond Ave, Suite 130A

St. Paul, MN 55114

651/647-1007

www.homeopathyhomepage.com

The meeting is Wednesday, December 12, 2007, at 1:00pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN

Minnesota Myeloma First Post

2007-11-05T12:41:00.000-06:00

This is a blog by and for myeloma patients (survivors!) and their caregivers. It is intended to serve people in Minnesota, and communities near Minnesota, especially the areas of Wisconsin which are part of the greater metropolitan area.

More content will follow.