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!


  1. BD is cool. If nothing else, it is healing just to listen to his Scottish brogue. But he also seems to be very practical in his advice and takes lifestyle factors into account. He doesn't seem to be an advocate for any one approach. Great 2nd opinion guy. BTW: Sounds very promising.

  2. Great info... thanks for posting!

  3. hi nick,

    been lurking for quite a while – first time commenting. first, congrats on the good news. what a huge relief. my wife just went through a cancer scare – she's already been through the disease twice, before we met, but this was my first experience. thinking about how the two weeks we waited for further tests felt, i can't even imagine what it must be like when the news isn't good.

    anyhow, i mostly wanted to comment on your thoughts about the potential affects of antidepressants. i've had some fairly serious anxiety issues, and as a college professor and author, my brain working at top speed IS my career. without that, i'm screwed. when i started on lexapro, at first i got dumb. well, maybe "slow" is a better way to describe it. i usually process stuff really quickly, and can do three or four things at once; a few days into my meds, i could feel a clear difference. it was like the difference between running on a track and through a mudpit. it really freaked me out at first, but the improvement in my anxiety symptoms convinced me to stick it out. fortunately, it didn't last. it was just a temporary side effect of my brain chemistry changing, but once it evened out i was back to my normal, irritating self.

    i get that with all the other chemicals running amok in you, the thought of targeting the one unaffected area is "distasteful", bordering on "really shitty". so i figured if you and your docs decide at some point that an antidepressant would benefit your overall health, it might help to hear that if you sense any kind of cognitive impairment, there's a good chance it'll last just as long as it takes for the meds to level you out.

    keep the faith, and keep getting better. as difficult as this has all been, what a gift it is to be able to touch and inspire SO many people with your courage and openness. when the day comes that you're totally cured, there will be a lot of people celebrating with you in spirit.

    oh, one other thing: HUGE redemption fan. i was a metal reviewer in an earlier incarnation, and i honestly believe that snowfall is the finest progressive metal album since images and words. and i really, really don't say that lightly.

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