I was running out of time and energy yesterday.  PET scan, Velcade infusion and other tests went fine and I arrived safely home by 4 PM.  There is a significant difference in the way doctors around the country test and monitor their patients–an alarming difference.

Yesterday I wrote this:

I have been writing about Total Therapy and the Myeloma Institute in Arkansas a lot lately.   My notes–and a lot of reader comment and debate–have centered on treatment philosophies.  But I should have also pointed-out differences in testing protocols between TT and many other cancer centers as well.  There is a significant difference in the way docs in Arkansas test and monitor their patients, and the direction my doctors and I have decided to go.

A couple of things before we get started.  Let’s use the acronym, UAMS, when referring to the Myeloma Instutute (at the University of Arkansas Medical School).

Next, let me give you my take basic, rudimentary take on the medical standard of care for testing myeloma patients–if there is such a thing.  I don’t want to get bogged-down with specifics here.  Just try and get a feeling for the timeline:

DIAGNOSIS

BASIC GENETIC TESTING, BONE SURVEY (X-RAY MAPPING), MRI AND OR CT SCAN, POSSIBLY PET SCAN, BONE MARROW BIOPSY (BMB)

6 MONTHS:  POSSIBLY FOLLOW-UP USING ONE OF THE SCANS ABOVE, USUALLY AN MRI.  POSSIBLY ANOTHER BMB

YEAR ONE:  BONE SURVEY, BMB, POSSIBLY ONE OR MORE SCANS

YEAR TWO:  BONE SURVEY, POSSIBLY BMB, ONE OR MORE SCANS AND REPEAT GENETIC TESTING HERE OR FOLLOWING A SIGNIFICANT RELAPSE OR STEM CELL TRANSPLANT

As I recall, this was the diagnostic and monitoring protocol at Mayo Clinic when I was there.  Moffitt Cancer Center here in Tampa follows a similar path.  So do a half dozen other cancer centers that treat a lot of myeloma patients I have visited.  I ask a lot of questions!

UAMS follows a far more stringent regime throughout a patient’s myeloma timeline.  And many other clinics do something in-between.  If some UAMS alumni would like to chime-in with specifics (they will whether I invite them to or not) that would be helpful.

I believe someone who works or is treated at UAMS would be SHOCKED by how haphazard and erratic testing and monitoring of myeloma patients can be.  For example, I’m guessing that a large minority of myeloma patients are never tested for genetic abnormalities when they are diagnosed.  Possibly if or when they get a second opinion (many don’t ever get a second opinion), but not through their local medical oncologist.

There are two rules of thumb.  The first (UAMS) lives and breathes testing.  At the other extreme, most–yes MOST–medial oncologists in smaller towns or inner city clinics only test “as necessary.”  Painful ribs?  X rays.  An MRI?  Probably not until a patient can’t walk.  Too expensive.

Personally, I’m a fan of what I would call “minimalist testing.”  These diagnostics are expensive, and in my case, take an entire day.  I hate wasting time!  So I love when we only run a test after I present a symptom that justifies it.

I want to refer back to my frame of reference so I can be specific and not speculate here.  Mayo Clinic is very organized.  I would get a schedule in the mail every three-six months, telling me where to go and what to do, based on the protocol I shared above.  One difference: genetic testing was ongoing (as needed) and went much deeper than your average clinic.  They are a pretty well funded, sophisticated place after all,

I have learned over the years that Moffitt Cancer Center can be hit-and-miss.  You see your specialist and he or she might look down and say:  “Pat, looks like you are do for a bone survey.  It’s been over a year.  Let’s schedule that before your next visit in two (or three) months.  That’s what happened with my latest PET scan.

The IMF’s Dr. Brian Durie is a big proponent of PET scans for myeloma patients.  Thinks they should be done yearly and/or as needed.  My specialist, Dr. Melissa Alsina,  likes them, too.  But another specialist at Moffitt, Dr. Baz, is an old fashioned guy and favors X ray surveys, period.

For me, there isn’t anissue with cost.  So last visit Dr. Alsina asked me, “Pat, when was your last Pet Scan?”  I said I hadn’t had one since my pre-transplant testing two years ago.  She flipped through her chart and confirmed it had been over two years.  “Let’s schedule one of those before our next (in three months) visit.”  I concurred.  My hip was deteriorating and it had been a long time.  “Great!” I exclaimed.  Her nurse made a not and scheduled it.

Taking this one step farther, when I reached remission six months after my transplant (It was the post SCT RVD, not just the transplant!) some doctors would have scheduled a BMB–the only way to confirm I was not in “CR.”  But we both agreed that wouldn’t be unnecessary.  The maintenance regimen we had already decided on would not change one way or the other.  So no BMB, no CR, just “remission.”  UAMS and some others would take this even farther.  I would have had a BMB and other tests to try and determine if I had achieved a stringent CR (sCR).

Good for them!  Good for you?  You make the call.  The patient gets to, by the way!  You are the boss, the head/coach of you myeloma health care team, remember?  But I’m sure if you signed-on for a more rigorous program, good luck with that!

Seriously, you knew (I hope!) what you were getting into and probably wouldn’t object.  Besides, then you can brag about being in sCR at cocktail parties and to all of your friends!  But you know what?  Although it might give you some piece of mind and push you up the overall survival stat list, you or I might still not make another year.  Heck, I might even have achieved sCR and not know it!  But who cares?  Unless these categorizations are going to change a treatment strategy, I argue they aren’t worth the paper they’re printed on.

You may not agree with me, and that’s OK!  We are splitting pretty small hairs at this point.  And once again I digress–and in a very controversial way.  Don’t let me distract you from understanding that you may need to be proactive and insist on testing during certain important points along your myeloma journey timeline.  Let’s review for an experienced patient one year post diagnosis:

* Insist on a PET scan at least once a year

* Go along with docs request for X ray surveys.  But they don’t help much

* Check-back and make sure you were genetically tested and categorized as low risk, moderate risk or high risk and why.  Discuss with your doctor if that should alter your overall treatment strategy

* Genetics should be re-tested after a transplant or anytime you relapse; at least every two years

* MRIs are much more useful than X rays.  Remember to try and get your diagnostics done at the same place whenever possible, ideally somewhere your specialist is used to using.  This will help them interpret films and compare them from year to year more effectively.  Common sense, right?

I’m sure I’m forgetting some important stuff.  This wasn’t intended to be a comprehensive list when I set-out to compose today’s post.  Maybe with the help of some of our incredibly sharp and intelligent readers we can come-up with a definitive timeline.  And I’m guessing the IMF working group has or is working on something like this.  I will check and report back later.

More homework.  It’s so frustrating, isn’t it?  That you need to remind your doctor when to be tested and what tests to use?  And then argue when they (or the insurance company) doesn’t agree?  Ridiculous! 

I’m going to stop here before I get too wound-up.  Enjoy your weekend everyone!  Hope you feel well enough to do just that.  If not, I’m thinking about and praying for you.

Feel good and keep smiling!  Pat