Thursday, January 5, 2012

Eye on the Prize

Well folks I'm so far behind here and I'm very sorry about that!   I do have stuff to post as I said before, just been busy.   The highlights, if I had to put them in bullet points:

* Velcade gives me gastroenteritis weekly now.   Not pleasant.   Managing pain with Vicodin as needed.  Annoying, but I'll live with it.

* Very interesting debate on curability with BB representing the cure side and a very smart Mayo doctor representing the non-cure side.   Finally heard the non-cure argument: they don't believe the line in the Arkansas recurrence curve flattens.   Bart says they are looking at old data, and it does flatten.  Simple as that.

* Mindful that it's no guarantee, I should mention a good friend of mine, also BB (but not the BB who recently passed away) was in the same boat as me and has lost remission.  This is not very good news, as it means his disease is now resistant to Velcade and Revlimid.  But BB is sticking with BB who will have a plan.  Meanwhile, fingers are crossed!

* I've also noticed that the curve doesn't flatten after three years of's mostly flat there but the real plateau isn't reached until about four or maybe a bit more years of maintenance post-remission.   I had been thinking about how long I wanted to continue with the meds...I don't like the side effects but I also don't like the thought of a few cells not getting with the program (see my previous bullet point) and causing trouble after I let up.   So I'd been toying with the idea of asking to stay on maintenance at least one more year after my three-year anniversary comes up.

With this in mind, a reader with whom I have corresponded before emailed me today to say that he's been able to stop all therapy after 4.5 years of maintenance.  He was told, in that beautiful definitive way that only BB can deliver, that "your myeloma is gone and IT WILL NOT COME BACK."

BB is not cavalier.  He doesn't say that until he's sure.  That's the prize though...and my eyes remain on it.  So with every little bout of gastroenteritis or other GI issues or a botched fingernail that won't heal, I keep focus.

Happy New Year and good health to you all!   More to come soon.