The "C" Word

Every description of Amyloidosis includes the word "incurable" very early in it's verbiage.  The reality of the condition being incurable is reinforced as we patients discuss our disease and treatments.  I've seen people on line who are usually pretty low-key and easy going react rather vigorously when someone says they might be cured.  "No," we're told, "it's incurable.  The best you can hope for is a durable, long-term remission."

I've met personally or on line folks who have relapsed two years after their stem cell transplant and some who are still in remission 20 years after their transplant.  The disease is so poorly understood that the physicians and researchers can't really predict into which group any individual patient might fall.

The hidden message always seems to be "don't be too hopeful, it will most likely come back", 96% of the time according to one article I read.  As Dr. Hofmeister states in his data registry and sample resource clinical trial in which I'm enrolled, "Because nearly all myeloma and amyloid patients relapse and treatment is eventually unsuccessful...".  Unfortunately, we Amyloidosis patients seem to feel an obligation to make sure one another remember that.

Today, while I was working on a project for an Amyloidosis group, I was reviewing some of the medical literature on Amyloidosis and Multiple Myeloma that I've saved on my computer.  Only 77 documents amounting to about 697,000 words, according to my calculations.  Those aren't all the ones I've READ, just the ones I wanted to save for future reference.

I was a little surprised when I came across this statement from an article published in the journal of the American Society of Hematology in June 2013 by researchers at the two premier Amyloidosis research centers in Europe (Systemic light chain amyloidosis: an update for treating physicians)

Novel agents and therapeutic approaches, such as those targeting amyloid deposits, are now under development and, hopefully in the near future, will be used synergistically to give a concrete hope of curing AL amyloidosis.

It's one of the few times I've seen the word "cure" applied to Amyloidosis by researchers.  It is considered a possibility in the near future.  The key is to stick around long enough and be healthy enough to benefit from it.

In the spring a group of us had the opportunity to tour the lab of Don Benson Jr., MD, PhD  one of the Multiple Myeloma researchers at The James.  It was really inspiring to hear about the progress that was being made and meet some of the folks on the front lines in the fight to cure cancer.  After the tour, we made a donation to Dr. Benson's Pelotonia ride as a thank you.  He told us later that he had just come back to his office after losing two patients when he saw the notification of our donation.

As I drove home after the tour, the song "Not the Same" by Ben Folds came up on my playlist.  I rewrote the chorus to this--

You see us drop like flies from our bright sunny skies
We come knocking at your door, we’ve got tears in our eyes
We need that cure quick and we’re hanging on, we’re hanging on...
For it

(You can read the entire re-write here-- https://docs.google.com/document/d/1k7WpxLEoimdZsYeGxBISYAvEVOUNMh4Zp24tPP1bOE4/edit?usp=sharing )

So, as a patient, that's really the goal...to hang on long enough to be here WHEN the cure comes.