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11 11, 2014

Mayo Clinic drama–and some good advice from a reader

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Doctors at Mayo Clinic, Jacksonville, biopsied three different spots today.  Good thing Dr. Roy pulled some strings to get me in so quickly! I should know which ones need further attention next week.  One was, "possibly melanoma."  According to the attractive young resident that did the exam; an opinion that was shared by the attending.

29 10, 2014

Great news from Mayo Clinic!


I met with my Mayo Clinic myeloma specialist, Dr. Roy, Monday.  Great news all the way around! Based on my lower M-spike--down to 0.4 from last month's 0.6--a significant reduction in pain caused by new lesions, and other more subtle changes in my blood work, Dr. Roy agrees that the doublet of pomalidomide (trade name,

12 10, 2014

Bone Damage in Multiple Myeloma with Dr. Amrita Krishnan

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Are you like me?  Are your bones negatively affected by multiple myeloma?  If so, Wednesday's Myeloma Cure Panel discussion could be important. I will be joining Gary Petersen, Jack Aiello and Cynthia Chmielewski to interview specialist, Dr. Amrita Krishnan about it. Here's the link: If you have questions you can leave them here in

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

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

9 09, 2014

I can live in no-mans-land…

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I reference my M-spike often.  Some cancers don't have good blood markers.  But doctors can reliably monitor the progression of multiple myeloma in the majority of patients by tracking how much monoclonal protein is floating around in their blood or urine, using a serum protein electropheresis (SPEP) test. A pathologist reads a graph of the

11 08, 2014

Multiple myeloma wins round two

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Disappointing news.  After dropping my M-spike from 0.7 to 0.4 the first month, my spike jumped back up to 0.6 this month.  Two months on pomalidomide and I'm right back where I started. I know, I know.  Lab numbers often jump around and vary from month to month.  As a rule, mine haven't, but that

13 07, 2014

Dr. Sagar Lonial’s thoughts about stem cell transplants

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Here's an excerpt from an interesting and comprehensive article from the July edition of Clinical Oncology News,  How I Manage: Evolving Role of Autologous Transplantation in Multiple Myeloma.   It features the views of myeloma specialist, Sagar Lonial, with the Winship Cancer Institute at Emory University in Atlanta: There is some discussion that, perhaps, patients

11 07, 2014


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After the obligatory 2 year waiting period following my approval to receive Social Security Disability (SSDI), I became eligible to receive Medicare.  I respectfully declined it.  Turns out my instinct were right! First, a comment.  Being forced to wait for medical coverage for two years when many patients need help NOW is wrong.  It's just

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

6 06, 2014

Mayo Clinic Zen

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Today's pivotal, life changing meeting?  Not so fast! I'm so pleased with Dr. Roy.  He's already helped me reconnect with my primary myeloma therapy philosophy: squeeze out every possible day from each drug or drug combination, saving other possibilities for down the road. Dr. Vivek Roy may have been trained in a transplant aggressive style. 

2 06, 2014

When practical trumps theoretical

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Today is myeloma day at the American Society of Clinical Oncology annual meetings in Chicago.  There isn't a lot of myeloma related data being presented this year, but the important stuff is out today.  Normally I'd be there covering the event.  Not this year.  I spent today at Mayo Clinic in Jacksonville, Florida. Just finishing

8 05, 2014

Pat’s Medical Update: Stuck in no man’s land, but not for long!

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"You have stable disease."  Dr. Roy pronounced at our first visit at Mayo Clinic in Jacksonville.  If only it were that simple! The last week was crazy busy with medical appointments and tests.  I saw three specialists: Dr. Vivek Roy, a hematologist recommended by Dr. Angela Dispenzieri and my good friend, oncology and transplant nurse

2 05, 2014

Mayo Clinic visit leaves many questions unanswered


Thursday's Mayo Clinic visit reminded me of a featured appetizer at a five star restaurant; tasty, but leaving you wanting more. Memories came flooding back as I walked through the stunning Davis Building on the tranquil Mayo Clinic campus in Jacksonville.  I had only been there briefly once before when Pattie and I first considered

28 04, 2014

Multiple myeloma is so inconvenient!

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I've written before about how living with multiple myeloma is like having a part time job.  Want proof?  Check out my schedule for the upcoming week: Today I'll drive an hour down to Tampa for a blood draw, and to pick up 350 pages of medical records to take with me to Mayo Clinic on