Monday, October 8, 2012

Quick post on the Beacon drama

No good deed, it has been said, goes unpunished.

And how.

A doctor from another institution recently published an article calling into question the mortality statistics from UAMS.  Essentially this article didn't dispute the percent of patients who were still alive at a given point in time (UAMS' strong suit) but it disputed the percent of patients whose cause of death was reported as "unknown/undetermined" instead of treatment-related.  He accused UAMS, essentially, of downplaying the percent of patients that die from the toxicity of the program.

UAMS is defending itself, though frankly not as aggressively as I'd like.  It's uncommon, I believe, for doctors to wage public war over stuff like this but this episode has certainly given those opposed to BB for whatever reason an excuse to vent their spleens.

I went to the Myeloma Beacon website after have been warned of some of this by BJ -- and I feel I owe a little something to BB and the team since they've saved my life.

I ended up stepping into a snake pit over there.  I've already over-participated in the thread so I won't be posting anything further there but I have an observation and a request.

Observation: the fact that people with a life-threatening disease don't have better things to do than denigrating both those working against the disease and those patients who choose a different treatment plan than their own would be mind-boggling were it not so depressing.

Request: For any of you who read this blog and are "offended" when I point out that BB used particular protocols before they were generally us both a favor and stop reading this blog.  It wasn't meant for you and we'll both be happier.


  1. You would think that where matters of Life and Death are concerned, people would not fail to show more of their compassionate sides, but I have - on another site - been exposed to those who claim to be 'loving' saying some of the unkindest things... go figger. Anyhow, I am glad BB saved your life and is saving others. This disease is not one that responds well to menu options... like going to a restaurant and telling the chef you want to survive and you'll take one thing from Column A and one from Column B... it's more like the restaurant where you let the chef come up with the combos and maybe you're lucky enough to get a top quality chef.

  2. I think it's more that people want to believe - and do believe - that the treatment they are receiving is 'the best'. I think it is natural to question why someone else would choose a different treatment. In some ways, there is self-doubt: Did I make the right choice? Are there better options? And so we question our own treatment and then other treatments - and sometimes with self-righteous vigor! I think it is human behavior to question and want answers, especially when life and death is involved.

    I am being treated at DFCI and am happy. It doesn't mean I'm uninterested in UAMS and, of course, I question it because I want to know more. I recently asked another blogger this question - are there patients who had MM, selected TT protocols, and now live myeloma free AND without any kind of maintenance AND no relapse? I keep thinking it must be a simple answer but I'm learning nothing is ever simple with myeloma!

    Keeping writing! You keep us informed! And many thanks for doing so - it's appreciated.

  3. Susan -

    First, I am glad you are pleased with your choice of treatmen.

    Second, I think you are absolutely right that some people attack others' choices out of insecurity regarding their own.

    Third, yes, there are literally hundreds of people that have lived for years after stopping all treatment from TT. If that wasn't the case, it wouldn't be very persuasive data. :)

    As an example, there was data published for ASH in 2009 that showed the "low risk" arm of TT3 having lost 17 people out of 226. Most (almost all...looks like 15 or 16) were lost within three years of reaching CR, and therapy is generally stopped around the 3 year point, give or take, for that reason.

    Due to the age of the trial, there were only two years (at the time) of data after this 3-year point. However they didn't lose any of the 209 people after that point. So to be clear: 207 out of 209 people that were in CR at the 3-year point discontinued therapy and were still alive with no disease progression two years later.

    The study in question is here:

  4. Nick-
    I chimed in with my two cents worth. UAMS took care of my brother and now me. People should not bitch about peoples decisions about treatment.

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