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26 06, 2015

Play the odds: What happens if your therapy doesn’t work?

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I wanted to backtrack and focus on what may be the most important factor when analyzing the state of my multiple myeloma: my dwindling number of therapy options. Yesterday I wrote: Apparently my current therapy combination of Cytoxan, carfilzomib (Kyprolis) and dex (CCd) was not as effective as Dr. Tricot had hoped.  He told me

5 05, 2015

Mystery infection hanging on

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My four day long, unrelenting fever is ongoing.  I described it as a "neutropenic" fever yesterday, because it felt so much like a half dozen others I've had in the past.  Turns out I was wrong. These were asymptomatic fevers, triggered by low neutrophil (mature white blood cell) counts following my first autologous (using my

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

25 03, 2015

Bad news from my Mayo Clinic specialist

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At the end of Saturday's presentations I shared something very personal with our group. I wrote a five part series of posts after I returned from seeing Dr. Tricot in Iowa.  To review, Dr. Tricot recommended that I immediately switch my current treatment regimen from pomalidomide and dex to Kyprolis, Cytoxan and dex.  Assuming it

11 03, 2015

Lessons learned: My 2nd opinion in Iowa (Part Three)

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My health care team is faced with a complicated dilemma.  On one hand, pomalidomide/dexamethasone therapy continues to whittle my numbers down; my M-spike has systematically dropped from 0.7 to 0.2 over a ten month period.   On the other hand, myeloma activity is steadily increasing in and around my bones.  Talk about mixed messages! Let's

4 03, 2015

What’s in a number? Great news from a new lab

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I started my long, cold trip up to Iowa City for testing, buoyed by some unexpectedly good news. My new home away from home, 21st Century Oncology, recently stopped doing patient blood work.  Inconvenient, but it’s a very small clinic. One of the team explained that their lab was over scheduled and short staffed. Translation:

21 01, 2015

Reader emails always enlightening


I receive a half dozen emails about a topic for every one comment you see after I publish a blog post.  I enjoy getting emails from readers.  Often they're uplifting, helping me power through another day.  And I get some of my best post ideas from them. Here are several examples: Earlier this week, Paul,

19 11, 2014

Dr. Gareth Morgan: New pathway to a cure!

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Last night's Cure Talks broadcast was both encouraging and overwhelming.  Myeloma Institute of Research and Therapy (MIRT) Director, Dr. Gareth Morgan, spent a great deal of time discussing upcoming advances in myeloma therapy and diagnostics.  This wasn't more of the same.  Dr. Morgan revealed a number of new, innovative approaches being initiated now in Arkansas.

18 11, 2014

Early myeloma related ASH announcements

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I've very excited!  Yesterday my registration materials arrived for next month's American Society of Hematology (ASH) annual meetings in San Francisco.  And like clockwork, researchers and pharmaceutical companies have started issuing press releases promoting presentations featuring clinical trial results to be presented there. Here are two early examples.  Keep in mind that a lot new