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12 10, 2015

We can’t wait for a cure!

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I had a chance to see myeloma patient and CrowdCare Foundation co-founder, Jenny Ahlstrom, in Boston last week. She made an impassioned plea to anyone that would listen to help her raise money to pay for two cutting edge T cell clinical trials; one in the U.S. and one in Germany. Here's information about the

6 10, 2015

Myeloma patients need emotional support

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I've had to make some pretty tough therapy decisions lately. It got me thinking. Where do patients like us go for emotional support? Online? Hard for me to dis that approach. Support groups? They can be exceptional ways to learn more about our cancer. Phone counseling? Patient to patient mentoring? Seeing a therapist? How about

29 08, 2015

Greg Brozeit: History of Patient Advocacy in U.S.

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Guest columnist, Greg Brozeit, is at it again. Put your thinking caps on. Greg shares more of his outside-the-box, global perspective with us today, this time focusing on patient advocacy: A Short Political History of Patient Advocacy Modern patient advocacy was born in the United States. In the beginning it was mostly political. Although a

13 08, 2015

More about daratumumab, followed by Pat’s medical update

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Before I write about how I'm been doing the past day or two, here's the mainstream Florida's media's perception of yesterday's feature, daratumumab: Multiple myeloma sufferers given new hope with 'wonder drug' August 12, 2015 – 693 NewsTalk, Melbourne, Australia      A breakthrough drug is providing "unprecedented results" and giving new hope for patients with a rare

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