Tag: IMF

Help get Toyota racing to beat myeloma

A reader just told me about this. How cool! I’m going to go vote for the “Myeloma Survivor” right now! You can vote every 24 hours.
http://www.sponsafier.com/#/gallery/view/367247

I thought you may be interested to know that the International Myeloma Foundation has entered a Toyota racecar design in a contest called Sponsafier. The winning entry will be built as a full sized car, and your votes can help push myeloma awareness across the finish line.

The idea and the car design come from a myeloma patient in Normal, Illinois. Keith May has covered the car with slogans to raise awareness of myeloma, and the work being done to beat it. The IMF has named the car “The survivor.”

“Survivor” is one of several hundred entries in the Sponsafier contest. Some entries are just artistic designs and some like Keith’s support a cause. For the next 12 days, please log onto nascar.myeloma.org to vote for Keith’s design. Please also ask your friends, families and colleagues to vote too.

This is a great opportunity to educate a new audience about myeloma and blood cancers, the advances that have been made in treatment and the challenges that lie ahead.

The eight lethal cancers

A blog reader sent this to me, and I wanted to pass it on.

Hi Beth,

I follow your blog and thought you might be interested to know about a new initiative launched by a coalition of patient advocacy organizations during the American Society of Clinical Oncology (ASCO).  Led by the International Myeloma Foundation (IMF), MDS Foundation and the Tackle Myeloma Foundation (TMF), they unveiled a patient “Statement of Principles” to address the inequalities in reimbursement of cancer therapies.

Currently, Medicare and private insurance companies require higher deductibles and co-payments for oral drugs than for IV therapies and inpatient procedures.  However, private insurance is regulated at the state level and Oregon, Indiana and Iowa have laws requiring equal coverage with similar legislation pending in several additional states and federal legislation introduced in Congress.

If you’re interested in learning more or signing the petition, you can check out the IMF or MDSF websites.

Best,
Allison

If you go to the IMF’s web site, you can read more about the Cancer Patient Statement of Principles.  This was taken from their web site.

About the eight lethal cancers
Eight forms of cancer, of which multiple myeloma is one, are projected to cause 49% of the 562,340* cancer deaths projected in 2009. For each of these forms of cancer, at least half of the patients diagnosed will die from their cancer within five years. Those cancers are:

Type of cancer

Deaths projected in 2009

New diagnoses projected in 2009

5-year survival rate

Brain cancer

12,920

22,070

35%

Pancreatic cancer

35,240

42,470

5%

Esophageal cancer

14,350

16,470

16%

Liver cancer

18,160

22,620

10%

Lung cancer

159,390

219,440

15%

Multiple myeloma

10,580

20,580

34%

Ovarian cancer

14,600

21,550

45%

Stomach cancer

10,620

21,130

24%

*Source: Cancer Facts & Figures 2009, American Cancer Society, Atlanta. 2009

Click here to support the Cancer Patient Statement of Principles.

IMF Says 90% overall response with new Relvlimd® combination (BiRD)

This is a press release  from the  International Myeloma Foundation.

I was on Revlimid with high dose dex for some time back in 2005, I think. I remember being miserable on the high doses of steroids and that my MM progressed after I cut back.  We figured the Revlimid didn’t work for me. But that doesn’t mean that it might not work if I added Biaxin.  It’s one more thing I can try when I have to start treatment again. The thought of having to take steroids again kind of causes a feeling of anxiety.

­–BiRD Study (Biaxin®-Revlimid-Dexamethasone) Provides Evidence of Deep Complete Response Rates In Newly Diagnosed Multiple Myeloma–

North Hollywood, CA, January 4, 2008 – The International Myeloma Foundation (IMF)—supporting research and providing education, advocacy and support for myeloma patients, families, researchers and physicians—today said updated data from the Phase II BiRD study provide a new option for newly diagnosed patients with multiple myeloma whether or not they proceed to stem cell transplant. The findings show a superb overall response rate of 90.3%. 38.9% of the patients achieved a complete response (using EBMT criteria) and 73.6% achieved a 90% or greater decrease in m-protein levels. Using the new International Myeloma Working Group Criteria—recently developed to better define the magnitude of a complete response by a panel of experts led by Brian G.M. Durie, M.D., chairman and co-founder of the IMF—30.6% of the patients achieved this new stringent complete response* (sCR). The findings have been published in the online version of the journal BLOOD.

The BiRD regimen is made up of REVLIMID® (lenalidomide) plus a low dose of the steroid dexamethasone, and adds Biaxin® (clarithromycin). The BiRD treatment did not impede stem cell transplantation, and demonstrated two-year event-free survival rate of 85.2% for patients who underwent stem cell transplant and 75.2% for those who continued on therapy without transplant. Median event-free survival time was not reached.

In addition to the response criteria, the findings from the BiRD study, like a previous study of REVLIMID with low-dose dexamethasone, show response deepening over time: the average time to partial response was just over six weeks, but average time to complete response was 22 weeks, and stringent complete response was reached at 38 weeks.
"This is an exciting time for the treatment of myeloma," said Susie Novis, president and co-founder of the IMF. "We now have multiple studies showing improved response and survival with various regimens including REVLIMID/dexamethasone in previously treated and newly diagnosed patients, DOXIL®/VELCADE® for previously-treated patients who want a steroid-free regimen, and thalidomide/melphalan/prednisone in older patients not eligible for transplant."

Myeloma, also called multiple myeloma, is a cancer of the bone marrow that affects production of red cells, white cells and stem cells. It affects an estimated 750,000 people worldwide, and in industrialized countries it is being diagnosed in growing numbers and in increasingly younger people.

The data were published in an article by lead author Ruben Niesvizky of the Multiple Myeloma Service, Division of Hematology and Medical Oncology, Weill-Cornell Medical College, New York Presbyterian Hospital-Cornell Medical Center.

* sCR requires complete absence of M-protein by immunofixation, normal free light chain ratio and a negative marrow biopsy by immunohistochemistry.

ABOUT THE INTERNATIONAL MYELOMA FOUNDATION
The International Myeloma Foundation is the oldest and largest myeloma organization, reaching more than 165,000 members in 113 countries worldwide. A 501 (c) 3 non-profit organization dedicated to improving the quality of life of myeloma patients and their families, the IMF focuses in four key areas: research, education, support and advocacy. To date, the IMF has conducted more than 120 educational seminars worldwide, maintains a world-renowned hotline, and operates Bank on a Cure®, a unique gene bank to advance myeloma research. The IMF was rated as the number one resource for patients in an independent survey by the Target Research Group. The IMF can be reached at (800) 452-CURE, or out of the United States at (818) 487-7455. More information is available at www.myeloma.org.

Media Contact: Stephen Gendel or Jennifer Anderson (212) 918-4650

Sad News

I got some sad news today.  My e-mail friend and frequent commenter on this blog, Judith Meuli (Jude), passed away yesterday. Like me she had IgA MM, although hers was kappa light chain. We shared stories about living with MM and other things. She had let me know that her doctor had told her this would be her last year. I plan on making a donation to the IMF and the IMBCR in her memory. Jude was mom’s age.

Special Edition: Multiple Myeloma Series Upcoming Webcast

Special Edition:  Multiple Myeloma Series
Upcoming Webcast:
This year’s American Society of Hematology meeting in Atlanta has brought many exciting new developments.  Join us this Friday for our discussion with two experts, Dr. Brian Durie, Founder, a Myeloma Specialist and Chairman of the Board for the International Myeloma Foundation and Dr. James Berenson, Founder, President & Chief Executive Officer of the Institute for Myeloma and Bone Cancer Research.  You’ll hear the latest groundbreaking news from the meeting and what these two renowned experts are excited about in Myeloma treatment and research.

“The Latest Myeloma News from the American Society of Hematology Meeting”
Friday, December 14, 2007, 2:00 pm Eastern (11:00 am Pacific)
Sponsored through an educational grant from Millennium Pharmaceuticals, Inc.
For a schedule of upcoming webcasts, to listen to recent myeloma program replays, and for further information, visit http://www.patientpower.info/specialeditionlymphoma.asp.

 

Featured Guests:

 

Brian G.M. Durie, M.D. is Chairman of the Board of the International Myeloma Foundation and a myeloma specialist at Cedars-Sinai Comprehensive Cancer Center in Los Angeles. He is also a member of the IMF Scientific Advisory Board. Dr. Durie is the recipient of the Leukemia Society of America Scholar award and the U.S. Hematologic Research Foundation Annual Award, among many others.

 

James Berenson, M.D. is the Founder, President and CEO of the non-profit Institute for Myeloma and Bone Cancer Research (www.imbcr.org) and Berenson Oncology (www.berensononcology.com) in Los Angeles, California. A leading physician-scientist, Dr. Berenson has specialized in cutting-edge research related to myeloma and metastatic bone disease both in the lab and with patients for 20+ years. He has been involved in many of the major breakthroughs that have brought new treatments for patients with these diseases resulting in both an improvement in the length and quality of their lives. His latest initiative, “The Cure Myeloma Project” enlists the work of a full-time research staff engaging in rigorous pre-clinical and clinical trials, using human myeloma cells.

Andrew Schorr: Host and eleven-year CLL survivor

HOW TO PARTICIPATE:
Listen live at http://www.patientpower.info/specialeditionmyeloma.asp
Call in live 877-711-5611 or Email questions to andrew@patientpower.info  
ABOUT PATIENT POWER:
Patient Power is a weekly show hosted by Andrew Schorr, ten-year leukemia survivor, patient educator and patient advocate.  The show features renowned medical experts on topics that include cancer, pain, diabetes, and heart specialists, as well as experts in clinical trials and top pharmacists.  The show serves to bring patients together in a radio and Internet community to provide information about available treatment options.  Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate for effectively, when to get a second opinion from a specialist and how to evaluate one treatment option over another.

Fundraising again

In an effort to raise funds for the IMF, one of the things I’m doing is selling products from a company called Country Bunny. I’ve used them myself, and like them enough that when I need lotion I only buy theirs. Any money I receive on any of the sales from the web site is going straight to the IMF. You can order right from the web with your credit card by clicking below. I’ll report back how much I’ve raised from time to time. Thanks in advance!

If you’d rather just send money right to the IMF, go to their web site and click on “Helping the IMF.” (www.myeloma.org)