May 2010 Meetings in Minnesota

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

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

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

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

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

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

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!