Wednesday, September 12, 2012

Disconcerting update from Little Rock...

With my next post, I had hoped to simply catch up on some interesting things that I am late to report -- like the CureTalk conversation, etc.

But this has been preempted.

I remain in complete remission, but the MRI has not changed.  This was, at first, just frustrating...because I know I don't want to stop medicine until those remaining pits have resolved.

Unfortunately, there's more to it.  BB was concerned that they haven't gone away.  Not only out of principle, but also because they have learned more about genes in the last four years and one of the genes that was expressed in my myeloma is something called MIC and that can cause "sudden and unexpected loss of remission."   This is what happened to my friend BB (not the doctor, but with whom I had dinner the other night here) and that BB was low-risk, and suddenly lost remission, and now has high risk disease and a pretty grim diagnosis, though he is fighting and there is always hope.

My disease has the same propensity to do that.

Now the MRI didn't change -- there are still five residual "small" lesions in the spine.   They are too small to be aspirated.  But the former region in my hip -- which was fully resolved but which Bart says indicates some potentially undesirable marrow characteristics -- is large enough for them to stick a needle in.

So I agreed, provided they are knocking me out.  I discussed with BB (the patient, not the doctor ) that FNA doesn't stand for "fine needle aspiration" but rather for "keep that F*@#ing Needle Away from me!"  :)    

Regardless of outcome, I will continue on Velcade at a higher dose than before.  He is okay with me dropping Revlimid because he is concerned about secondary cancers at this point, particularly given my squamous cell carcinoma and the preliminary myelodysplastic cells in my marrow from last time.  He is okay with me dropping dex so long as I can tolerate the Velcade.  But the Velcade continues.  I can get it subcutaneously, so that's something, I suppose.

If the FNA shows something, then I may be looking at another round of the original chemo -- VTD-PACE.  Not something I'm looking forward to, but if it's necessary, I'll do it, I guess.

He said he is now taking me off protocol and "going out on a limb" but "we're in this together."

That's not what I wanted to hear.  I wanted to hear "the myeloma is gone and will not be coming back."

I have so many concerns, I don't know where to begin, really...among them, will I ever be confident that this is really gone forever?  I suppose if all those lesions resolve and the marrow returns to normal, I can be confident.

I'll need to come back here for more testing, almost certainly, at some point in the next few weeks.

My thoughts are scattered...apologies for the incoherent post.  Pretty shaken right now.


  1. Nick- Hang in there!! I'll be praying for you. Linda (from Chicago)

  2. Nick, I am sorry to hear the news in your update. I have been following your blog since I was diagnosed last year. Your posts are always insightful and express many of the same concerns I have as I continue with this disease. I am certain you have the right attitude and support to help you make the best decisions to meet your current situation head on and beat this disease. Kevin in Leavenworth (the town, not the prison)

  3. Nick ~ your wife has alot of sisters...and if there's one thing we know about you is that you can out-smart anything!! The news is in no way a death sentence, only more information for the thinking...and only a possibility at that. You are strong, and so are we! Together with our positive attitudes and love for our little for life...we'll march on until we realize this was just a little bump in the road...With Love, Susan :-)

  4. I'm not quite clear on what you are reporting here. My interpretation is: You carry the MIC gene that could be a timebomb; they are doing a biopsy of your hip to see if anything is amiss; you are dropping Revlimid (bye-bye cramps!); you are dropping Dex (bye-bye sleep disruption and crabby Nick); you are continuing on a higher dose of Velcade Sub-q, which you seem to tolerate pretty well; you remain in CR. So the only major concern is what may come out of the biopsy (which may be nothing) and the fact that you aren't cured yet. Am I getting this right?

  5. Hi,
    I was in Little Rock yesterday, meeting with Dr. B when you were there.
    I want you to know I have read your blog and find your story both inspirational and quite informative.
    My brother and father both had Myeloma. I am optimistic for the future particularly for my 2 children and my late brother's children. A cure is
    possible, if not now, than in the future for generations to come. My blog is Keiths Myeloma blog. Hang in there, both my father and Brother did
    and I intend to also.

  6. Nick,

    Damn the torpedoes!

    Don't give up the ship. I know you won't.

    You're in my thoughts.

  7. Nick,

    I'm running the MMRF Race for Research in Boston on Saturday. I'm adding names to my shirt - all my MM friends online and nearby. I would like to add your name. You're a fighter! You're full of spirit and hope! This latest detour is just that - a detour. I know - you must be tired of detours. I'm tired of detours and it's only been 18 months with mm. Hang in there! We're all in this with you! - Susan

  8. Very sorry to hear of the latest troubles. Hang tough.

  9. We are with you, Nick. Love and prayers.