Aug 16, 2010
Posted by Beth on Aug 16, 2010 in Cancer, Myeloma, Myeloma Treatment | 3 comments
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.
Jun 1, 2009
Posted by Beth on Jun 1, 2009 in ASCO, Myeloma, Myeloma Treatment | 8 comments
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.
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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
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35%
|
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Pancreatic cancer
|
35,240
|
42,470
|
5%
|
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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%
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*Source: Cancer Facts & Figures 2009, American Cancer Society, Atlanta. 2009
Click here to support the Cancer Patient Statement of Principles.
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Jan 4, 2008
Posted by Beth on Jan 4, 2008 in Cancer, Durie, Myeloma | 0 comments
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
Dec 15, 2007
Posted by Beth on Dec 15, 2007 in Cancer, Life, Myeloma | 1 comment
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.
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