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Lots of myeloma news from this weekend…

Home/About Pat, RIP, Therapy/Lots of myeloma news from this weekend…

Lots of myeloma news from this weekend…

Let me share some important myeloma related odds-and-ends from the past three or four days.

First, remember my post following last week’s 60 Minutes episode,

Many Multiple Myeloma Patients Face Depression

Apparently the segment caught the eye of a number of others in the medical field, too.

Click-on the headline link below to read an interesting perspective about the depression/placebo controversy:

Placebo Role in Depression Tx Stirs Debate

By Crystal Phend, Senior Staff Writer, MedPage Today

While not all medical professionals who comment for the article are critical of the 60 Minutes coverage, the American Psychiatric Association (APA) called the segment “irresponsible and dangerous.”

I thought MedPage Today’s approach was actually quite balanced.  See what you think…

Next, I wanted to share a pointed “short and to the point” email I received about Saturday’s post about myeloma patient and Orlando Magic executive Pat Williams:

One person’s reaction to today’s post:  “Excuse me, Pat, but it is not ALL about YOU!”
Charlie

My response:  Fair enough!

If you didn’t get a chance to read my commentary about Mr. Williams on Saturday, I would like you to go back and check-it-out.  I knew I was walking a fine line by writing about his situation that way–even though it is how I felt.

You see, I’m fascinated by why patients decide on which therapy to try–and why and where they choose to pursue it.

I’m sure the hematologists in Orlando Florida Hospital, where Mr. Williams was treated, are excellent physicians.  But that facility certainly doesn’t do as many transplants as several other nearby institutions in Florida, including Moffitt Cancer Center in Tampa, where I had my transplant this summer, Shands, at the University of Florida or Mayo Clinic-Jacksonville.   And I can’t recall listening to any of the faculty from Orlando speak at ASH or ASCO–or read any myeloma research studies from Florida Hospital.  Doesn’t mean it hasn’t happened.  I’m just saying I’m not aware of any.

I recall laying next to an older gentleman of Asian Indian descent while my stem cells were being harvested at Mayo Clinic almost five years ago.  Turns out he was a highly rated cardiologist from Dallas.  When I asked him why he chose to travel to Minnesota for the procedure, his response was “Mayo is the best.”

Now, whether you agree with that approach or not, I can’t help wondering why Mr. Williams wouldn’t also take a similar route.

And maybe he did, ultimately choosing to stay close to home.  Or maybe his doctors reached-out to other experts in the field and did the extra ground work for him.

So yes, Charlie.  Saturday’s post was a bit self centered and “all about me.”  I didn’t do any research or call Mr. Williams–mainly because I didn’t feel he would be forthcoming with me about how and why he chose to do what he did.

And of course, he would have been under no obligation to do so.  So Charlie, you are right again.

So I apologize to anyone I might have offended–including Mr. Williams.

But I hope my main points weren’t lost in my poorly conceived post.  First, always get a second (or third or even fourth) opinion before making major therapy decisions–preferably from one of a half dozen or so medical institutions which specialize in multiple myeloma, such as Dana-Farber, M.D. Anderson, Mayo Clinic or UAMS–even if it is simply get a consult.

Second, become an informed patient and learn as much about your cancer as possible, because your life may depend on it.

And finally, don’t be afraid to reach-out to other members of the myeloma community with questions, or for emotional support.

I will update you about Mr. Williams condition if and when I learn more.

Moving along… Last but not least, I would like to note that one of my dear support group friends from back in Stillwater, Minnesota, Dee Steil, passed away from myeloma related complications earlier this weekend.

Dee was an incredible human being.  She was always cheerful–often in the face of unsettling and terrifying news that her myeloma was not responding to treatment.

But Dee hung-0n for much longer than anyone would have had a right to expect.  Pattie and I would like to send our condolences to her family.

Dee, you will be missed!  Pat