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Monthly Archives: January 2013

31 01, 2013

Myeloma Cure Talk broadcast focuses on emerging myeloma therapies

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Last night I was one of four multiple myeloma patient panel members that participated on Cure Talk's Myeloma Cure Panel broadcast.  The group included fellow Floridian and host, Gary Petersen, Jack Aiello from Northern California and Cynthia Chmielewski from New Jersey. We had an opportunity to question myeloma experts, Dr. Shaji Kumar, from the Mayo

30 01, 2013

Myeloma education key to becoming a long-lived survivor!

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I had the opportunity to participate in and listen to two different educational programs this week.  Monday I volunteered to host and speak to a group  fellow Moffitt Cancer Center patients, caregivers and family members.  Over 100 attended a three part educational event. Neurosurgeon Dr. Nam Tran spoke to the group about bone disease treatment

29 01, 2013

Help your doctors and nurses help you!

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One of the comments I read yesterday featured a helpful suggestion that all myeloma patients can use.  Jan from Washington State shared this: Don’t get me wrong, I too, have to have a hand written, hard copy of my pain medication prescriptions, Oxycontin or Oxycodone, to give to the pharmacy, from my hand to the

27 01, 2013

Proposed FDA regs may hurt (literally!) myeloma patients

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Most of you understand how important pain management options are for myeloma patients.  I know dozens of survivors (including me!) living with chronic and sometimes severe pain caused by lesion ravaged bones.  Broken legs, shattered ribs, collapsing vertebrae are all common.  So I'm always concerned when proposals are made to limit access to pain medication.

26 01, 2013

Myeloma Cinderella: Disease vs Therapy (Part One)

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After a couple days change of pace, time to return to "myeloma 101."  Except suzierose's column this week is very technical--more graduate school level.  But don't let that detour you!  This weekend our very own Myeloma Cinderella finds more morsels of hope for high risk multiple myeloma patients:   Part One of Disease vs Therapy

20 01, 2013

Myeloma Cinderella: Tandem stem cell transplants exposed

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Before getting to our Myeloma Cinderella's next column, suzierose asked me to let everyone know that she's ecstatic to be attending inauguration ceremonies this weekend.  She compared it to the recent Rose Bowl trip Pattie and I took a few weeks back.  Living a new normal can be tough, but how fortunate she and we

18 01, 2013

Close to a myeloma cure? Depends how you define “cure”

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Who knew?  Defining a "cure" for multiple myeloma may be as difficult as actually achieving it!  Watch this short Patient Power video and see if you can figure it out... My friend, Andrew Schorr, does such a good job with these video interviews.  But in this case, I think we needed more.  Dr. Craig

17 01, 2013

Free myeloma event January 28th at Moffitt

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Yesterday I wrote about a conversations I had with tough, never-say-die and long-lived multiple myeloma survivor, Dr. Arnold Goodman.  The meeting meant so much to me I practically gushed with admiration over Arnie's ability to overcome the difficult hand he has been dealt.  But I don't want to forget the reason we were there in

16 01, 2013

Interview with remarkable myeloma survivor, Arnie Goodman

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Yesterday was a remarkable day.  Why?  Because I got to spend almost 2 hours one-on-one with a remarkable man--myeloma survivor, retired physician, fellow Myeloma Beacon columnist and family man, Arnold Goodman. Arnie Goodman.  The man who just underwent his third stem cell transplant in seven years; this time an allogeneic (donor) transplant.  Arnie's allo transplant

12 01, 2013

A rose by any other name…

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Today I'm pleased and excited to announce a new, hopefully regular contributor to our patient perspective site.  Famous--some might even venture to say "infamous"--myeloma survivor and online friend to so many of us, suzierose, has agreed to share her passion and wisdom here at MMB. I have "known" suzierose for a long time.  Her helpful