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22 06, 2015

Your support helping me stay the course

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My day has had more emotional ups-and-downs than a roller coaster--and the afternoon isn't even over! Everything went without a hitch this morning with my PET scan.  Dr. Tricot will have the results when we meet on Thursday. I had an opportunity to speak with his lead nurses, Paula and Sonya, before I left.  Everyone

10 06, 2015

Baseball great Mel Stottlemyre facing relapse

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Before I pass along information about Mel Stottlemyre, I wanted to follow-up on my post about daratumumab from yesterday; the companies involved have officially applied for FDA approval. I noticed the Myeloma Beacon ran a story about it; glad they're still relevant and on top of breaking news.  But for a slightly different business slant,

26 05, 2015

Remembering my mother on Memorial Day

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My father was a colonel in the Air Force during  World War Two.  But I sometimes forget that my mother was a secretary with the highest security clearance at the Pentagon in Washington DC at the same time.  That's how they met. My mother, Jeanne Feeney, married my father after the war, becoming Jeanne Killingsworth. 

22 05, 2015

Patient Snapshot: Tom from Ohio (Part Twenty Seven)

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A month ago I posted an email update about multiple myeloma patient and allogeneic transplant survivor, Tom Brennan, from Ohio.  Tom's wife, Whitney, was kind enough to pass it along; I had been hearing from a number of readers that were concerned about how Tom was doing: Hope for a cure: Tom’s allo transplant

21 05, 2015

Exciting new research needs funding

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May 13th I was part of a patient panel asking researchers, Dr. Carmen Baldino, PhD, and Dr. Kelvin Lee, MD.  They are working on an incredible new myeloma therapy that may be able to cure--YES, CURE--patients with 14;16 genetic translocations; sort of a lucky genomic loophole. My dear friend and colleague, CrowdCare Foundation's Jenny Ahlstrom,

12 05, 2015

Decision time: modified auto, allo or drug roulette? (Part Two)


I was facing three therapy options, all with significant upsides--and a host of downsides, too.  I spent several weeks, kicking-the-can-down-the-road, facing a what I considered to be an impossible decision.  None of them were jumping out at me.  I was paralyzed, spinning my wheels. Yesterday I wrote, "Pattie was getting frustrated.  'You make a decision,

1 05, 2015

Living to Make a Difference: Mike Katz (Part Two)

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Writer Greg Brozeit reminds us that any myeloma patient that has ever taken dexamethasone owes Mike Katz a heartfelt "Thank you!" Living to Make a Difference: Mike Katz (Part Two) By Greg Brozeit I was a witness to the second great clinical achievement for which Mike was largely responsible. Every year at the IMF’s annual

26 04, 2015

Musical tribute to myeloma patients

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Myeloma survivor and CrowdCare Foundation co-founder, Jenny Ahlstrom, is also an aspiring song writer.  Jenny's shy; she reluctantly performed for us last month at Pat's Myeloma Beach Party.  Great voice! Jenny has written a song about her battle with cancer; all proceeds of her new CD to be donated to CrowdCare.  Here's the link to

22 04, 2015

Update: Allo transplant recipient, David from Florida

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Yikes!  Tom has faced such a tough road following his allogeneic (donor) stem cell transplant.  Combine this with a mortality rate for myeloma patients that runs somewhere between ten and twenty percent--and a success rate that's hard to predict--it's understandable why a lot of doctors and patients shy away from the controversial procedure.  Yet to

20 04, 2015

Well known novelist dies of multiple myeloma

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A number of readers from the Western U.S. emailed me about author Ivan Doig's passing.  The popular and well published novelist from Idaho died last week from complications related to his ongoing battle with multiple myeloma. Ivan Doig dies at 75; writer captured the American West April 13, 2015 - Associated Press and the L.A.

11 04, 2015

Oops! I Forgot my own anniversary…

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The 8th anniversary of my multiple myeloma diagnosis has unceremoniously come and gone:            April 3rd, 2007. I've been so busy tying up loose ends following our beach party event, I lost track of time.  And then there's the unavoidable therapy fork-in-the-road decision I'm facing.  Honestly, the day and date that

10 04, 2015

Next year’s Beach Party planning off to an early start

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One of the amazing things about the final day of this year's Beach Party: no one wanted to leave!  Instead, the 70 or so remaining patients and caregivers stayed, shared suggestions and started to help us plan next year's event.   Volunteers stepped forward, committees were formed.  Michele and Stephanie even started a Pat's Myeloma Beach