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Monthly Archives: October 2014

31 10, 2014

Pat’s myeloma therapy plan

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Thank God pomalidomide is working for me!  But what do we do once it's not?  Dr. Roy and I had a chance to discuss that on Monday. First the good news.  Dr. Roy's gut feeling is that POM should work well for quite some time.  And statistics back him up.  Patients that respond like I

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,

28 10, 2014

Researcher argues diet can help slow myeloma

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A new reader, Hailey, from Washington, DC, sent me a link to this fascinating video about using nutrition to help defeat cancer.  Recorded in 2010, the advice presented by researcher, Dr. William Li, is timeless.  Give it a look; success by patients with multiple myeloma are featured in the presentation: I love this guy!  

27 10, 2014

2015 Myeloma Beach Party dates set

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Last year's Myeloma Beach Party was a blast!  An amazing afternoon and evening spent together on the waterfront in Tampa.  This year we've decided to take things to the next level; an entire weekend of activities March 20th - 22nd on Amelia Island near Jacksonville. Friday evening's program will focus on ways to help improve

26 10, 2014

Innovative multiple myeloma music fundraiser

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As I reported last month, I've been working with myeloma activist, Jenny Ahlstrom, to help develop a revolutionary way to fund--and help speed forward--cutting edge clinical trials.  Jenny has multiple myeloma, but is doing exceptionally well.  She's not letting her diagnosis slow her down.  Even while preparing for a busy week in San Francisco at

25 10, 2014

Things seem to be looking up!

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When my email went down earlier this week, I was surprised how much I enjoyed the break.  So when Pattie's family came to visit this weekend, I decided to try it again: I didn't check email or access the internet for 24 hours.  The downside?  It all doesn't magically go away! My return to reality

24 10, 2014

10 million dollar hint: Daratumumab is a winner!


Like a "tell" in poker, sometimes financial news reveals what pharmaceutical companies are reluctant (or prohibited) to report.  I don't want to read too much into  it, but considering all of the good things I've heard about daratumumab, this smells like very good news: NASDAQ.COM Genmab Reaches USD 10 Million Milestone in Daratumumab Collaboration with

23 10, 2014

Many myeloma patients face geographic challenges

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It never ceases to amaze me how far afield some of our readers are here at MMB.  New Zealand, Australia, Europe--even Africa. None of that makes Alaska any less exotic.  A myeloma patient there can't just drive a few hours to visit Dana-Farber or Mayo Clinic, making things even more difficult than they already are.

22 10, 2014

Curcumin, communication and computers

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Sometimes I suffer from techno paralysis. I want to apologize to anyone that has tried to reach me via email the last two days. When using an email that's attached to a registered domain name, an organization or business needs to pay a company to host the email. I had planned to switch companies and

20 10, 2014

Patient Snapshot Update: Mark from Ohio

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From time to time I like to do follow-ups about former Patient Snapshot subjects--especially when the news is good.   In February, 2013, I wrote about Mark, a newly diagnosed patient that was having a hard time.  Mark's daughter, Stephanie, had emailed me for help; she was very concerned about her dad.  I was more

14 10, 2014

Activist implores myeloma patients to seek expert advice


A week ago, good friend and fellow patient blogger, Gary Petersen, wrote a post about an important topic: Why do people die from Multiple Myeloma?  Lack Of Awareness??  It Is Complicated!! Gary is very passionate about his view that heightened myeloma awareness--combined with treatment by experienced myeloma experts--can save lives.  If that means extend a

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

11 10, 2014

Oceanfront reflections of Boston

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Still don't feel well, but I don't care.  Our walk on the beach this morning was spectacular! An osprey dove from 200 ft above straight down, snatching a glistening silver fish in his talons six paces in front of us.  Later a pelican swooped 10 feet above us, cutting suddenly out to sea and skimming