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Waiting For Perfect Knowledge?

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Decision Making in CLL

This is a post of mine from my blog in 2011 when I was deciding what to do about my worsening disease.

I share it now almost four years for a few reasons:

  1. To remember how far I personally and treatment options in general have come in the last three years.
  2. To remind both you and me how we must often make decisions without all the facts.
  3. To celebrate how lucky I have been to be one of the first to jump on the oral targeted train with by trial of ibrutinib starting early in 2012.

Back in July 2011, I didn’t know any of this.

I didn’t know what I would ultimately decide: risk a second bone marrow transplant or take a new unproven trial drug. 

I didn’t know how well things would eventually work out.

Here is what I wrote when I was pondering my next move to control my CLL.

Waiting for perfect knowledge?

It is always easy to tell when it is too late or too early to start therapy.

It is always easy (at least for me) to second-guess any disease management decision.

It is never possible to get it right all the time and to have all the facts.

So what to do?

For me, the answer has always been to get the best information and the best advice from the best people, and then act and stay mindful.

Some choices, such as a transplant, mean that you can’t always be aware or mindful. You are just going to be too tired or too sick some of the time. That is where you need a well meshed team of loved ones to be your ombudsmen and of experts to execute the plan. These two groups will keep their eyes on different pieces of the puzzle, but they must communicate. This combo will give you the best chance to handle most of the inevitable bumps on the road so that you can keep moving forward.

Which brings me to another topic.

And another golden nugget:

If you don’t know where you are going, you will never get there.

Assuming my chosen path of rituximab and cyclosporine continues to work its biological magic, and my nodes melt away not just where I and Dr. Kipps can palpate, but deep in the darkness of my mesentery, do I pull the trigger on a second transplant, a second shot at a cure and not just a remission?

That would mean a preliminary course of higher octane chemotherapy such as FCR or bendamustine with R or O to further reduce the disease burden and weaken my T cells so that I won’t reject the graft as I did last time.

Or do I play out the string a little further in a different direction? Avoid tried and true chemotherapy and engage a newer sexier tango partner, such as one of the tyrosine kinase inhibitor in clinical trial now that doesn’t promise a cure, but just a longer and gentler dance.

The risky cure or the unproven promise of a long deep remission?

There is a yet another saying in medicine. This one speaks to the appeal of a new medication.

Better use a new drug soon while it still works.

Is this too cynical an approach? Weren’t all medications newborns at some time?

Some “new” drugs (triptans) have grown to be old and trusted friends and other (DES) have been run off leaving behind a trail of shame and tragedy. Some (Penicillin G) have been mostly pushed aside by the newer models, and others (thalidomide) have risen from the dead to find new life in novel therapeutic fields.

So what do I chose?

The devil I know or the devil I don’t know?

The honest answer is that I never really know anything fully.

Like the gift of any photograph, I get the truth, but it is always incomplete and always has a built in point of view.

The best I can do is to calmly contemplate the options, purposefully act, and stay aware.

And have my trusty team in place for when I can’t.

Brian Koffman 7/12/11 with new introduction 3/20/15