Monday, October 8, 2012

BD consult

Okay, on to more positive things.

After a couple of scheduling snafus, I was able to speak with BD, a long-time eader in MM research and therapy.  He was one of my original consults when I was diagnosed and I thought the current end-of-protocol-decision-point would be a good time to reconnect with him.  I was able to approach this with considerably less trepidation than would have been the case before getting the good news about my MYC gene a few weeks ago, so it was an almost philosophical conversation about when to end maintenance.


* I am doing very well.

* He observes that getting to four years of CR in the Total Therapy program is a meaningful achievement in terms of there being a flattening of the survival curve.  Readers will note I have mentioned this before.  I've got about ten more months.  For whatever reason, BB would have been okay taking me off therapy at three years of CR if those pits were gone, but as they're not, we continue.

* He suggested that Zometa will not cause those pits to heal up -- Zometa stops osteoclasts from destroying bones, but it doesn't accelerate healing.  So that means no more bisphosphonates needed.

* He believes, unlike KA, that I shouldn't be on proteasome inhibitors forever -- even if they become a simple oral alternative.  Rather, I need to get off all this stuff to allow the body to heal.  He noted the squamous cell carcinoma in the finger is an example of my body having been pushed to its limits by the therapy and I don't disagree.

* Having said that, he believes single-agent Velcade is not a bad idea until the pits clear up, which could take quite some time.

* He thought Interferon wouldn't do anything, though as I pointed out BB's musings about this were before we saw the normalized expression of the MYC gene.

* He thought radiation of the four pits could be a possibility in the event there are any rogue cells in there...but he also thought that without any evidence of the disease, it wouldn't be worth it, and he further noted that radiation impedes the healing process.

All in all, his hope would be that I could get off Velcade in the next 3-6 months, pending the results of MRI/PET that would show the pits are gone completely.  As I'm going back to UAMS in March, that is a logical time to stop the Velcade if I'm able to do so -- but I want to wait until those pits are straightened out first.

On the strength of this and the normalized MYC, I'm feeling like I may not need my third "second opinion", which was to come from MAYO Scottsdale and a doctor there who specializes in MYC.  That's scheduled for this Thursday but it can only be done in-person and for anybody that knows my job, it's a real pain to get time off to do anything.  They give me time to go to Arkansas twice a year now and I appreciate that much -- taking off more time seems like it may not be critical.

I shall have to think about it!

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.