Monday, January 6, 2014

Update at 23 months on Ibrutinib

Once again it has been quite a while since I posted anything new.

Once again there isn't a lot new.

The neuropathy in my feet continues to creep inexorably from my toes to my heels. Next month the folks at NIH want to do a batch of tests to determine---and they think they can---if it is a result of the Ibrutinib treatments. Apparently I am the only "human lab rat" in their clinical trial of about 80 patients to experience this, so the odds that it stems from the Ibrutinib are slim.

Similar tests done locally, here in the Schenectady, NY, area resulted in the neurologist leaping to the conclusion that of course it had to be from the Ibrutinib, although he really had no idea.  It just seemed the most plausible cause to him.

So, stay tuned for news on that.

Second, I did have a new round of three IVIG infusions in late summer/early autumn to help my damaged immune system get through the winter and flu season.  I was stunned to learn that each infusion was billed at $7,700.  I don't want to seem ungrateful, but I am tempted to ask the local clinic that provided them just how they arrived at that price tag. Wow.

And, by the way, neither the infusions nor a flu shot kept the flu at bay. I came down with it in early December, just about got over it, and then had either a relapse or a new variety of it just after Christmas.  I am still blowing out and hacking up great gobs of disgusting green and yellow mucous. (More than you wanted to know, I'm sure.)

The good news: still no return of lymph node swelling. Blood test numbers remain pretty stable. The drug works.

Last bit of news . . . this blog has now had almost 12,000 page views. Hard to believe.