Category: Myeloma

Myeloma

Post about new “Blood” study from Margaret’s blog

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I wanted to share this link with my readers, because it’s an important discussion about cure vs control and other aspects of myeloma treatment or management.

http://margaret.healthblogs.org/2011/08/02/the-cure-versus-control-debate-a-new-blood-study/

Please read it and let me know what you think.  I’ve long thought I probably should have held off on treatment for as long as possible, and my post-SCT strategy is to stay treatment free for as long as possible. I expect to withhold treatment until symptoms affect QOL.

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Ferraro developed pneumonia

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This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.

Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.

Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.

Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.

“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”

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MMRF Press Release – Multiple Myeloma Research Foundation Mourns Loss of Geraldine Ferraro

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Multiple Myeloma Research Foundation (MMRF) Mourns Loss of Geraldine Ferraro

Pioneer, Leader, and MMRF Honorary Board Member Succumbs to Multiple Myeloma
Norwalk, CT — March 26, 2011

The Multiple Myeloma Research Foundation (MMRF) is deeply saddened by the loss of Geraldine Ferraro (1935-2011), a Member of the MMRF Honorary Board of Directors and a dear friend. Ferraro passed away this morning from complications following a long and courageous battle with multiple myeloma, an incurable blood cancer.

“Geraldine Ferraro was a true trailblazer, an inspiration to many, an incredible advocate for cancer research, and a very dear friend. She will be sadly missed, never far from our hearts, and fondly remembered for her incredible legacy and the extraordinary woman who she was. We pray that her family finds comfort and peace during this sorrowful time,” said Kathy Giusti, Founder and CEO of the Multiple Myeloma Research Foundation, and a patient with multiple myeloma.

In addition to serving on the MMRF’s Honorary Board of Directors, Ferraro was actively involved in the Foundation’s work to bring new treatments to patients. In 2002, she passionately testified before Congress for the critical need for increased research funding, and a year later, a bill was signed authorizing $250 million for blood cancer research. Congress then appropriated $5 million to the Geraldine Ferraro Blood Cancer Education Program in 2003 and renewed funding in 2006, enabling the MMRF to provide high-quality educational programs to underserved populations.

About Multiple Myeloma
Multiple myeloma is an incurable blood cancer. The five-year relative survival rate for multiple myeloma is approximately 38 percent, one of the lowest of all cancers. In 2010, more than 20,000 adults in the United States will be diagnosed with multiple myeloma and nearly 11,000 people are predicted to die from the disease.

About the Multiple Myeloma Research Foundation (MMRF)
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)3 non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy’s diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As the world’s number-one private funder of multiple myeloma research, the MMRF has raised over $160 million since its inception to fund more than 130 laboratories worldwide. An outstanding 89% of funds raised go toward research and related programming. The MMRF has supported 70 new compounds and approaches in clinical trials and pre-clinical studies and has facilitated 30 clinical trials through its sister organization, the MMRC. For more information about the MMRF, visit www.themmrf.org.

Media inquiries, contact:

Anne Quinn Young – (203) 536-8691

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Sponsafier NASCAR design contest

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Congratulations! Your support for “The Survivor” has pushed the car ahead into the semi-final round of the Sponsafier NASCAR design contest!

“The Survivor” is a myeloma awareness racecar designed by patient Keith May and the IMF, and it is one of only 10 cars (out of over 3,100 submitted!) to advance to the semi-final round in the “Cause” category! Our cause, of course, is “beating myeloma to the finish line,” as Keith has written on the car.

Our spot in the semi-final round is an exciting chance for all myeloma supporters to be in the driver’s seat as we raise awareness of myeloma and the International Myeloma Foundation.

To help “The Survivor” forge ahead into the finals, please vote every day for the next 10 days by logging onto http://nascar.myeloma.org and simply clicking the “vote” button! It takes only 30 seconds, and you won’t have to enter an email address or any personal information!

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!

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?

Visit http://nascar.myeloma.org to cast your vote once per day! And spread the word! Voting is open until September 23.

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Help get Toyota racing to beat myeloma

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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.

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Incidence of myeloma by country

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Paula just added an interesting post here:

http://feresaknit.wordpress.com/2010/08/04/whys-africa-not-red/

Our toxic environments have a lot to do with why we got myeloma. (see http://www.sciencedaily.com/releases/2009/08/090813142148.htm)

From the maps linked in Paula’s blog, you can see that the industrialized countries have more MM in their populations.

There’s some information to be found on myeloma cancer clusters by googling:

http://www.google.com/#hl=en&q=meyloma+cancer+clusters&aq=f&aqi=m1&aql=&oq=&gs_rfai=&pbx=1&fp=ea2cd8eab02d18af

I’ve been really lazy about posting these days.  There’s a lot going on.

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Test results and other stuff

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I had blood drawn on 6/3, and got the results back today.

Test: Result (Normal Range)

IGG: 455 (600-1700)
IGM: 34 (35-290)
IGA: 466 (40-400)

This is from last time, so you can see there’s not much change!

IGG: 466 (600-1700)
IGM: 31 (35-290)
IGA: 408 (40-400)

I found a new web site that I’m still checking out.  It has details about lab tests and other info.
http://www.clinlabnavigator.com/

Anyway, the doc says I’m still smoldering!

I was at Five Points Pet Resort a couple of weeks ago, where this green-winged macaw engaged us.  He has a lot of personality!

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