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Monthly Archives: September 2014

30 09, 2014

Allo stem cell transplant not a good option for me now


Now that I've learned I have some time to decide if and when to try an allogeneic (donor) stem cell transplant, let's examine the big picture.  Are allo transplants a reasonable therapy option for multiple myeloma patients? On paper, allo SCTs are a great idea.  First, high dose chemotherapy wipes out most of the cancer

29 09, 2014

Expert advice from an experienced patient


There are two reasons why I'm spending so much time exploring future therapy options.  The first is obvious: to help me make the best available choices.  But that's not really why I'm running this ongoing series of posts. Believe it or not, I'm not worried about me.  I'm an informed and hardened myeloma veteran.  I'll

28 09, 2014

Which new myeloma drug will the FDA approve next?

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There are a half dozen experimental anti-myeloma drugs nearing the end of the research pipeline.  Which is most likely to be approved and when? A biologic immunotherapy drug like elotuzumab or daratumumab?  Millennium's new oral proteasome inhibitor, MLN9708? Although it only works well when combined with another drug like Revlimid, elotuzumab is the farthest along. 

27 09, 2014

Is an allogeneic transplant a good option for me?

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Once again, the comments and emails I received concerning the quest for my next best therapy option rocked!  They are intelligent, well reasoned and most helpful.  Thank you!  Also, I have some new news on the allo front.  Too much to cover to put this off until Monday. Nick, I will get to your comprehensive,

25 09, 2014

Myeloma Beach Party next March!

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Here's some fun news!  We've set a date for the second annual Myeloma Beach Party!   It's now becoming a jam-packed weekend, filled with events and plenty of opportunities to get to know each other. It will be held here in Fernandina Beach, Florida, on picturesque Amelia Island the weekend of March 7th.  All activities will

24 09, 2014

We’ve lost another myeloma hero

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I was devastated to learn that another close friend, Jim Byrd, died this week. I met Jim while speaking to a support group in Columbia, SC.  He was interested in helping others by speaking to groups, too, so I helped him get started in Millinnium's Patient Ambassador program. Our paths crossed a number of times. 

21 09, 2014

More about myeloma survivor and baseball star, Don Baylor

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Earlier this month I passed along good news about Don Baylor following his unfortunate injury last spring: Don Baylor update   A former Major League baseball star and hitting coach for the Los Angeles Angels, Baylor has recovered from his myeloma related injury and is back on the job.  One of the biggest baseball fans

19 09, 2014

Relapsed/refractory patients face difficult choices

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I reported back Wednesday afternoon after meeting with my myeloma specialist, Dr. Roy, at Mayo Clinic.  The contrast between Dr. Roy's slow and steady incremental therapy approach, and the "hit the myeloma hard" Total Therapy approach preferred by Dr. Tricot on Wednesday night's broadcast couldn't have been more stark. Dr. Tricot enthusiastically stated that he

17 09, 2014

Busy day: Mayo Clinic meeting and Cure Talk broadcast about MRD tonight


Before I share details about my meeting with Mayo Clinic myeloma specialist, Dr. Roy, this morning, I want to remind everyone that I will be part of a panel questioning Dr. Guido Tricot about the importance of minimal residual disease (MRD). Guido Tricot, MD, PhD, is the director of Holden Cancer Center’s Bone Marrow Transplant

16 09, 2014

Pomalidomide hang-over

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I felt pretty lousy Sunday, yesterday afternoon and now this morning.  Me?  A hangover?  I don't think the one beer I had Saturday evening while watching college football caused it.  Nope, it's the pomalidomide. Monday afternoon and I didn't feel well.  Fatigue and shortness of breath were most notable.  Today I just don't feel like

13 09, 2014

Best to take dexamethasone all at once

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In the past there has been some debate about how and when it's best to take large doses of dexamethasone; something most of us need to do at some point during out ongoing therapy. When I looked into it early in my myeloma journey, I was told it didn't matter when or how I took