December 2010 Meetings in Minnesota

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

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

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

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

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

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

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

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

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

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!

Dr. Brian Van Ness Speaks to St Paul Support Group

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.