Wednesday, August 1, 2012

Much improved, thanks for asking!

Hello folks.

Thanks to those who have asked for an update!

* My fingers continue to improve but aren't there just yet.  My surgically mangled one can now be used but is still very tender -- I therefore still bandage it most days, albeit just with a band-aid now.  I'm hoping that in a few more weeks (months?) it will return to normal.   There's a funky piece of scar tissue that almost looks like a small fingernail...if that stays put, I'll perhaps not need any kind of skin graft to make the wound look better.   I will post a picture at some point.

* Speaking of posting pictures, the rest of my fingers look MUCH better than they did before -- no more spotting, and the skin has more or less healed in the majority of places.  I will post before and after pics here -- they will be considerably less jarring than the picture of the recently-operated-upon finger I had a few posts ago.  :)

* I noticed recently that a UAMS presenter spoke at the ASH (American Society of Hematologists) conference in 2011 and said that myelodysplastic syndrome (a precursor to Leukemia) is a concern for people on long-term Revlimid.   The presentation itself can be found here.  Since I looked like I had MDS in my previous marrow (even though BB said this wasn't the case) I'll be monitoring this carefully.  It means I'm a little reticent to continue Revlimid therapy...but we'll see.

* On the other hand, this article (from BB himself) seems to indicate that MDS is not that big a concern for me from the transplants themselves.  Risk factors apparently include low yields from the stem cell transplant, older age, and slow platelet recovery post-transplant -- I didn't have an issue with any of these factors.

* I'm returning to Arkansas in six weeks for the next staging, at which point we'll discuss continuation of maintenance therapy in light of the above, the holes in my spine, and this study, tantalizingly called the "Myeloma Cure Project", that BB has been conducting since 2009.   That study compares the outcome of the original Total Therapy 4 maintenance protocol (and previous maintenance protocols) with one in which Revlimid is continued in 10mg doses indefinitely (versus the 15mg that I am now on).  On this topic, I find it a bit curious...BB had told me with respect to TT4 (which randomized people into either the standard or a "lite" protocol with one less cycle each of induction and consolidation chemo; I was in the latter cohort) that we would not randomize if he thought there was a difference in outcome.  In other words, he would never test people on less medicine if he thought it would mean the treatment wouldn't be as effective.    So...that calls into question the current study.   Is he putting people on indefinite Revlimid to show there is no difference?   Or has he reconsidered his previous stand?   These, and other questions, will be asked in September.

* Just being off meds for two weeks while my hands were being allowed to heal was a boost to my energy level...I have to say I won't mind a dose-reduction or cessation!   Although the GI issues persisted...I'm beginning to worry if they will ever resolve.  : \

I will end this update as I began it -- thanks to all of you for following this humble blog and for your well-wishes!