Something was missing from this year’s American Society of Clinical Oncology (ASCO) meetings in Chicago this year.  Conspicuously absent was any news about one of the most promising anti-myeloma drugs, ARRY-520.  Why?  Was there a problem with ARRY-520′s trial data?

Good news!  Our dear friend and Patient Snapshot favorite, John Knighten, is hanging on.  Last April, John was given only a few weeks to live by his transplant team in Seattle.   But the Spokane, Washington resident and former firefighter continues to fight through severed pain caused by a massive plasmacytoma (tumor) in his sinuses.

This is BIG NEWS!  I’m excited to announce that fellow myeloma patient, Matt Goldman and I will be on-air a week from today, interviewing former baseball great and myeloma survivor, Don Baylor, and noted myeloma expert, Dr. James Berenson.  How exciting!

This headline on a well known medical website made me laugh:

I get a dozen or more calls and emails a day asking, “How are you doing?”  Thanks for asking!  I know I should post more about me and my health.  I joked with my new friends in the Philadelphia Multiple Myeloma Networking Group this weekend, “I already know how I’m doing!  I’m more interested in other patient stories and research news updates, not me!”  Old news.

Thank you, Philadelphia!

Patient advocacy can mean several different things.  These days, patient advocacy is most often used in a political sense.  For example, I learned yesterday that Florida enacted oral chemotherapy access legislation Friday, designed to equalize the cost of infusion and oral chemotherapy.  Great news!  But I’ll provide more specifics about that legislation later.  Today I would like to highlight a growing movement among multiple myeloma patients to advocate and fight for themselves.

Now this is exciting!  Italian researchers are using Iron supplements to enhance Velcade’s effectiveness.  Brilliant!  This is the type of research that I love to see.  Finding ways to help make the therapies we already have work better.

I received several emails about Saturday’s support group meeting in Philadelphia.  Here’s the group’s announcement, complete with directions:

It still isn’t too late to register to ask questions on tonight’s Nutrition broadcast. And I forgot to mention what may be the most noteworthy event of the month; a Myeloma Cure Panel featuring baseball and myeloma survivor, Don Baylor, and Dr. James Berenson from LA:

I live an hour north of Tampa on what’s called the Nature Coast, stuck smack-dab in the middle of Tropical Storm Andrea.  So far the winds aren’t too bad and we still have power.  Fortunately, our area is one of the few that features buried power lines.  Forecasters expect us to get an additional 5 inches of rain over the next two hours.  Believe it or not, that’s no big deal down here with our sandy soils and hurricane ready drainage ponds.

What happens if your caregiver can’t help anymore?  Or if you’ve never had a caregiver in the first place?

Incremental baby steps.  I hope I haven’t given the wrong impression about myeloma news coming out of Chicago at this year’s American Society of Clinical Oncology (ASCO) meetings.  I’ve been whining about how there hadn’t been any big myeloma related news.  That part is true.  But there are hundreds of clinical trial results being presented as posters, oral presentations or as part of ASCO’s online university.

If you think about it, large numbers of patients have only been using Revlimid for six years or so; Velcade maybe seven or eight.  So solid survival data is just starting to pop-up.  Let me introduce you to a study, presented at ASCO, that should help shut-up the, “You need to transplant right away!” crowd.

I have been following TH-302 for just over a year now.  Underwhelming early trial results are most likely what’s keeping it out of the news.  But unlike the elotuzumab study I wrote about yesterday, all 13 patients in this fledgling, Phase 1/2 study had at least six prior therapies, each including at least one IMiD, proteasome inhibitor and alkylating agent; by definition a “really tough crowd.”

For me, one of the most frustrating part of reading abstracts and following oral presentation myeloma results at meetings like ASCO and ASH is that you are rarely comparing apples to apples.  Are study subjects “heavily pretreated,” “refractory,” or both.  And what about “relapsed?”  Sometimes some of these terms are used interchangeably.  Sometimes not.  Let me share an example from today’s poster session.

One of the myelomal blogosphere’s newest contributors, Myeloma Cinderella, turned-me-on to a fascinating article on Chemotherapy Advisor last week, Innovative Cancer Treatments Increase Patients’ ‘Financial Toxicity.’  In it, reporter Debra Hughes highlights just how expensive it can be once someone is diagnosed with cancer.  Of course, myeloma patients understand this all-too-well.  Yet the seeing the size, scope and costs firsthand can be a real eye opener!