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Monthly Archives: June 2014

30 06, 2014

Hope for a cure: Tom’s allo transplant journey (Part Twenty One)

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Two weeks ago I posted an update about our good friend, allo (donor) transplant patient, Tom.  He's back home now, living with his wife and caregiver, Whitney, and his energetic, adorable kids.  But as I reported, things haven't been easy: Hope for a cure: Tom’s allo transplant journey (Part Twenty) Concerned that Tom's inactivity might

29 06, 2014

More about alternative ways to monitor myeloma

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Friday I wrote a post about how differently multiple myeloma can manifest itself in patients--and how different patients react to and follow their myeloma.  I featured lifestyle columnist, Danny Parker, as on of my examples.  Danny was kind enough to finish what I started in this month's column: Dear Pat and others, I little more

28 06, 2014

One million dollar donation could speed immunotherapy research

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A significant development on the multiple myeloma research funding front: Multiple Myeloma Research Foundation (MMRF) Launches Linda Rodgers Emory Fund for Accelerating Immune Therapy in Multiple Myeloma NORWALK, Conn.--(Business Wire)--The Multiple Myeloma Research Foundation (MMRF) announced today the generous donation of $1 million by Linda Rodgers Emory, a longtime supporter of the MMRF and recognized

26 06, 2014

Myeloma patient advocacy goes viral!

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Fellow myeloma bloggers, Gary Petersen and suzierose recently co-wrote an important post about patient advocacy, running it on both of their sites.  The post was so good it's gone viral! I read it for the first time, not on their blogs, but on a newer breakout site,  Created by myeloma survivor, Jenny Ahlstrom,

23 06, 2014

Celgene Patient Support to the rescue!

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Last week I became concerned after Cigna Insurance delayed approval of my new, oral myeloma therapy, Pomalyst (pomalidomide).  After not hearing anything for three days, I contacted Celgene Patient Support. I was immediately connected with Senior Patient Support Specialist for the Jacksonville, Florida area, Kelly Jones.  Kelly spent 20 minutes on the phone with me,

22 06, 2014

FDA casts doubt on safety of testosterone therapy

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I have been taking testosterone therapy for over a year.  Late last week a concerned friend at the Myeloma Beacon alerted me to the fact that the FDA had just issued a safety warning about it. Here's a WebMD/HealthDay report about it: Testosterone Products Must Warn About Clot Risk Announcement comes as agency continues broader

21 06, 2014

Hope for a cure: Tom’s allo transplant journey (Part Twenty)


Not being able to get up and move around for months?  I can only imagine how hard that is on Tom, both physically and emotionally.  Frustrating, too! Here's where I paused Whitney's account yesterday: A couple days later our daughter, Reese, wanted to have a lemonade stand  (I attached a pix of this too). So we

18 06, 2014

FDA grants Orphan Drug Designation for KRN5500

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I wasn't familiar with this.  KRN5500 was fast tracked by the FDA back in 2011 to treat peripheral neuropathy in multiple myeloma patients.  Turns out the drug also exhibits anti-myeloma properties.  Here's an update: DARA BioSciences (DARA) Receives FDA Orphan Drug Designation for KRN5500 June 16, 2014 – DARA BioSciences (Nasdaq: DARA) announced the

14 06, 2014

Devil’s in the details!

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I don't know how an uniformed patient could do this.  Sure, ignorance may be bliss.  But as I learned yesterday, passively sitting back and waiting for something to happen could cost me days--or even weeks--before I ever see my first Pomalyst capsule. I'm still caught up in the process; emotions bubbling just below the surface.

12 06, 2014

SAR650984: Immunotherapy drug exceeds expectations

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I have written a lot about SAR650984 recently.  SAR is an anti-CD38 monoclonal antibody.  Myeloma specialist, Dr. Thomas Martin, calls it "Along with daratumumab, the next blockbuster drug for myeloma. Here's an introduction to a helpful, five minute video produced by our friends at Patient Power during ASCO: Myeloma Research Progress: Anti-CD38 Monoclonal Antibodies in