Monday, February 10, 2014

...and why cure matters

The cure versus control debate has been gaining steam in the past few years.

I've been accused of favoring Arkansas in the past, so I will be careful to make the below claims with appropriate caveats and considering all I've learned, and the contributions of others.  For example, I claimed that Barlogie was the first to use Velcade in up-front therapy.  Evidently others began at or around the same time.  It doesn't matter, really, to the argument I'm making.

When I was diagnosed in October of 2008, there may have been other voices in the wilderness talking about a cure, but UAMS was the only center openly discussing it as the objective of their therapy, and touting that Total Therapy was curing people.  Many did not believe them then; many still do not believe them now.  And many of the non-believers are very smart people, and many of them are learned doctors.

The startling statement of being curative was just one of several aspects of Arkansas' approach that led some others to call it "crazy" (whether in that word or a more polite variant thereof).

In addition to the fact that common wisdom said the disease was incurable, here are a few other things that common wisdom said:

- Velcade should be reserved for relapsed patients.  Barlogie used it up front.

- Revlimid should be reserved for relapsed patients.  Barlogie used it up front.

- Maintenance therapy did not make a difference in outcome.  Barlogie has had it as a mainstay of his protocols for 20 years.

- Complete Remission doesn't matter; there's no real difference between a minimal M spike and the absence thereof.  Barlogie, in contrast, uses CR as a prognostic precursor to cure.

- Tandem transplants won't make a difference in outcome.  Barlogie has used them from the outset -- it's not about the transplant iself, it's about administering more melphalan.

- Focal lesions do not resolve and are meaningless as a prognostic factor once no longer active for cancer.  Meanwhile Barlogie has maintained they resolve, though it can take years -- and believes that until they are resolved they can represent microenvironments where cancer can lurk, awaiting recurrence.


Now, fast forward five years.

- Velcade is the standard of care for newly-diagnosed patients

- Revlimid is the standard of care for newly-diagnosed patients

- More and more evidence exists (I'm not going to research the publications right now -- there are too many now and can be found via a google search) that maintenance prolongs overall survival as well as progression free survival and it is becoming the standard of care if it isn't already

- Complete remission is being recognized as an important marker with more advanced tests designed to investigate for the traces of any remaining disease

- I've seen at least one study that confirms the superior outcomes of tandem transplants

- My own focal lesions continue to resolve.  I had at least 10 (I think 12?) and all but four are now gone.

- The IMF has announced the Black Swan Initiative, which at a minimum is a tacit acknowledgement that some patients are being cured

- More doctors are admitting that some patients are likely cured.  I'm not going to "out" them, here, but they exist.


This is not about a "neener neener, I was right / my doctor was right."  This isn't about bragging rights.

This is first and foremost about giving patients as many options as possible.

But this is also about getting on with life as normal for a good subset of patients who have families that depend on them.

Some people phrase it as "isn't a long remission as good as a cure?"

The answer, for me at least, is no.

Long remission doesn't let you buy life insurance.

Long remission doesn't let you buy disability insurance.

Long remission introduces questions like "will this person hire me if they believe I have incurable cancer?" I'm not sure of the legality of this -- but common sense dictates that it's a concern.

With other cancers, after five years of remission, you're considered free and clear.  But until such time as enough of the medical community agrees that Myeloma is curable, that window will not be available for those of us with this disease.

I want to be very clear on my perspective here:

* Each person's biology is different.  I have enjoyed a favorable response (thus far) to a curative approach.  That doesn't mean other people will.  The most aggressive claims of Arkansas acknowledge that 15-20% of newly diagnosed patients have dire prognoses despite the success of Total Therapy with other patients.  Most might not be cured regardless -- although time will tell.

* Each person's choice is their own.  Some people don't want to sacrifice quality of life for quantity of life.  Some people simply don't want aggressive therapy and are prepared to accept a different set of odds as a result.  Some people don't believe in the Arkansas protocol -- and it could certainly be proved wrong.  This is not about asserting Arkansas being right over anybody else's choice.

* That said, patients need to be aware of their options, and make their own choice about their own treatment based on a fully informed perspective, understanding the pros and cons of each alternative.

Arkansas and Total Therapy are not for everybody, for a variety of reasons: age, health, philosophy, individual disease biology, etc.  But patients should be informed enough to know that this treatment approach exists.  Because cure, in many cases, does matter.




3 comments:

  1. All good stuff. I believe Tricot is viewed very much like Barlogie. For some reason, some are angry at what these doctors have done and do. I've never fully understood why. As for the transient monoclonal protein, I found that article back in 2008 when I too was experiencing transient proteins. Tricot is his usual calm confident manner told me, "you have nothing to worry about." That article helped me believe and come to terms with those proteins showing up in my blood work for such a long period. I hope the theory holds true and that we both have very deep remissions. Nice write up Nick.

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  2. Thanks, Doug. Yes, Dr. Tricot (with whom I've exchanged a few emails -- what a helpful, kind person) receives a lot of the same derision from the same folks that deride Dr. Barlogie. It's the same theory that they operate from (after all, they did work together). It's largely the same protocol that they administer. So it doesn't surprise me that they share some detractors. :)

    I'll be asking Dr. Rajkumar about that transient protein, as I mentioned in my other post. I'm wondering if it has only been noticed more recently because the remissions that are inclusive of novel agents are deeper than historical remissions.

    Take care, Doug!

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