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Monthly Archives: May 2015

31 05, 2015

Update on CrowdCare’s innovative fundraising plan

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My dear friend and out-of-the-box thinker, Jenny Ahlstrom, sent me an important email this weekend.  It's an update about how CrowdCare Foundation's innovative plan to help fund one or two game changing clinical trials is progressing. Here are excerpts of Jenny's update: Hi all, We aren’t ready to invite people to donate to the project

28 05, 2015

A few bad apples give Internet a bad name

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Ever since I as diagnosed I have heard a number of doctors and patients say, "DON'T LOOK UP MULITPLE MYELOMA ON THE INTERNET!"  I have always disagreed.  I find an amazing amount of helpful information there.  But you need to know where to look. For example, if you followed three sites; mine (MMB), The Myeloma

26 05, 2015

Remembering my mother on Memorial Day

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My father was a colonel in the Air Force during  World War Two.  But I sometimes forget that my mother was a secretary with the highest security clearance at the Pentagon in Washington DC at the same time.  That's how they met. My mother, Jeanne Feeney, married my father after the war, becoming Jeanne Killingsworth. 

25 05, 2015

New targeted delivery system could destroy myeloma cells

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I mentioned a while back that one of the specialists at Mayo Clinic, Jacksonville, suggested I enroll in a clinical study that uses radioactive particles targeting myeloma cells.  Here's an interesting twist that's similar: Nanotherapy effective in mice with multiple myeloma April 22, 2015 (Nanowerk News) Researchers have designed a nanoparticle-based therapy that is effective

24 05, 2015

Begone, cramps!

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I've been getting lots of great suggestions about ways to try and stop cramping in my hands and legs via comments and email.  Knowing so many of you face similar challenges, here are some past posts with ideas about ways to help from readers: Reader suggestions: How to stop PM cramping   Reader suggestions to

22 05, 2015

Patient Snapshot: Tom from Ohio (Part Twenty Seven)

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A month ago I posted an email update about multiple myeloma patient and allogeneic transplant survivor, Tom Brennan, from Ohio.  Tom's wife, Whitney, was kind enough to pass it along; I had been hearing from a number of readers that were concerned about how Tom was doing: Hope for a cure: Tom’s allo transplant

21 05, 2015

Exciting new research needs funding

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May 13th I was part of a patient panel asking researchers, Dr. Carmen Baldino, PhD, and Dr. Kelvin Lee, MD.  They are working on an incredible new myeloma therapy that may be able to cure--YES, CURE--patients with 14;16 genetic translocations; sort of a lucky genomic loophole. My dear friend and colleague, CrowdCare Foundation's Jenny Ahlstrom,

20 05, 2015

Have any of you battled three hours of hand cramps?

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I want to apologize.  I didn't post yesterday; one of the first times I missed a daily post in six years.  Few know I've posted that long.  Three years ago we changed blogging platforms and I lost a lot of my original content.  But this WordPress is a lot more sophisticated, so move probably a

17 05, 2015

Therapy karma catches up to me

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I understand some of you have endured difficult side effects while using Revlimid and/or Velcade.  Sure, walking around borderline neutropenic often left me feeling a bit fatigued.  But I was one of the lucky ones; except for later in the day of RVD therapy--which left me feeling wiped-out and fluish--Rev and Velcade were no big

12 05, 2015

Decision time: modified auto, allo or drug roulette? (Part Two)


I was facing three therapy options, all with significant upsides--and a host of downsides, too.  I spent several weeks, kicking-the-can-down-the-road, facing a what I considered to be an impossible decision.  None of them were jumping out at me.  I was paralyzed, spinning my wheels. Yesterday I wrote, "Pattie was getting frustrated.  'You make a decision,

11 05, 2015

Decision time: modified auto, allo or drug roulette? (Part One)

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I ended Saturday's post this way:  "I’ve had an epiphany.  I like the sound of  'in my future.'  This has been a game changing week for me, full of amazing coincidences, reaffirming phone calls–and signs.  Some 'signs' are too improbably to ignore." I've spend the last several months focused on which late stage myeloma therapy

9 05, 2015

Urinary tract infection unlikely villain causing my fever

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The mystery infection revealed itself to me.  My urine was darkening by the day, accompanied by tell-tale stinging.  They say urinary tract infections (UTIs) are unusual in men.  Good to know I'm not just another guy! My fever broke 24 hours after I started taking Levaquin.  Undeniable symptoms appeared the same day.  We looked up