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Monthly Archives: April 2015

28 04, 2015

It’s the dex!

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Dr. Tricot chose to administer CcD every other week, so my bone marrow would have time to recover between cycles.  I started round two of my Cytoxan/Kyprolis/dexamethasone (CcD) yesterday afternoon.  If you recall, the combination really wiped me out two weeks ago. So I get Kyprolis infusions (common name, carfilzomib; hence the small "c") on

27 04, 2015

Myeloma legend Mike Katz has died

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Mike Katz was the longest living myeloma patient I've ever met; I believe it has been 25 years since he was first diagnosed. I met Mike at my first ASH six years ago.  A mainstay at International Myeloma Foundation (IMF) events, Mike worked tirelessly for the group, pressing on even when he wasn't feeling good.

26 04, 2015

Musical tribute to myeloma patients

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Myeloma survivor and CrowdCare Foundation co-founder, Jenny Ahlstrom, is also an aspiring song writer.  Jenny's shy; she reluctantly performed for us last month at Pat's Myeloma Beach Party.  Great voice! Jenny has written a song about her battle with cancer; all proceeds of her new CD to be donated to CrowdCare.  Here's the link to

23 04, 2015

Update: Allo transplant recipient, David from Florida (Part Two)

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So we've heard from both of our most recent Patient Snapshot allogeneic (donor) stem cell transplant recipients.  As multiple myeloma goes, both are young, with kids and lovely, caring wives.  Tom from Ohio has had a more difficult time than expected from day one.  Things have gone a lot easier for David from Tampa.  Complications

22 04, 2015

Update: Allo transplant recipient, David from Florida

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Yikes!  Tom has faced such a tough road following his allogeneic (donor) stem cell transplant.  Combine this with a mortality rate for myeloma patients that runs somewhere between ten and twenty percent--and a success rate that's hard to predict--it's understandable why a lot of doctors and patients shy away from the controversial procedure.  Yet to

21 04, 2015

Reader stories can help us make difficult therapy decisions

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As most of you know, I've been facing the toughest therapy decision of my eight year multiple myeloma journey.  But this week's series of posts aren't about me.  They are a culmination of what I've been working on for years: collecting patient testimonials and feedback that can help all of us make life extending, uber-informed

20 04, 2015

Well known novelist dies of multiple myeloma

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A number of readers from the Western U.S. emailed me about author Ivan Doig's passing.  The popular and well published novelist from Idaho died last week from complications related to his ongoing battle with multiple myeloma. Ivan Doig dies at 75; writer captured the American West April 13, 2015 - Associated Press and the L.A.

15 04, 2015

Working (and playing) in Boston

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Pattie and I returned home late last night after a whirlwind trip to Boston.  We flew up and back for two days of myeloma related meetings. We were able to sneak out to spend four hours playing tourist Monday afternoon.  I have been traveling to Boston to work several times a year for the past

14 04, 2015

High tech diagnostics emerging to battle most complicated cancer

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The Multiple Myeloma Research Foundation (MMRF) just announced  a collaboration with Adaptive Biotechnologies, the University of Torino and Amgen/Onyx to perform sequencing-based assessment of minimal residual disease (MRD) on hundreds of multiple myeloma patients. Patients enrolled in a ground-breaking, comparative, clinical disease monitoring trial, INSIDE MM-1, will be monitored for MRD using flow cytometry and

13 04, 2015

Cytoxan works surprisingly well for some patients

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Such a simple abstract, with so many lessons to learn.  Example of how Cytoxan and dex--at low doses--helped a relapsed patient in kidney failure stay stable for almost two years: Long-term Control in a Patient with Refractory Multiple Myeloma by Oral Cyclophosphamide and Dexamethasone Abstract Background: Prognosis of patients with multiple myeloma (MM) has substantially

12 04, 2015

Could new blockbuster myeloma therapy be right for me?

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Tuesday I was a guest panelist on Jenny Ahlstrom's radio show.  The broadcast featured one of the new therapies for late stage myeloma patients that CrowdCare Foundation is considering for funding.  By the end of the program, I was considering joining this new, innovative trial myself! Here's Jenny's summary of Dr. Guenther Koehne's work, featuring

11 04, 2015

Oops! I Forgot my own anniversary…

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The 8th anniversary of my multiple myeloma diagnosis has unceremoniously come and gone:            April 3rd, 2007. I've been so busy tying up loose ends following our beach party event, I lost track of time.  And then there's the unavoidable therapy fork-in-the-road decision I'm facing.  Honestly, the day and date that

10 04, 2015

Next year’s Beach Party planning off to an early start

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One of the amazing things about the final day of this year's Beach Party: no one wanted to leave!  Instead, the 70 or so remaining patients and caregivers stayed, shared suggestions and started to help us plan next year's event.   Volunteers stepped forward, committees were formed.  Michele and Stephanie even started a Pat's Myeloma Beach