Tuesday, January 15, 2013

Eleven months into Ibrutinib

I have been nagging myself to update this blog, seeing as how it has been since September since I last did.  But I was REALLY surprised yesterday to receive two e-mails from fellow CLL patients who wrote to ask how I was doing, since I had not updated in so long.  I continue to be surprised---pleasantly---that people actually want to read what I write.  I guess this blog is useful, after all.
The fact that I haven't updated in four months, is, itself,  strong testimony as to how I have been doing, I suppose. I am pretty busy with a lot of "stuff"---carpentry and home improvement projects here at home and for family members here and there, long walks with the dogs, hunting, visiting family branches three and four hours away, water color painting, writing and laying out a newsletter for a local neighborhood association, etc., etc.---so busy that two days ago I made the completely insane mistake of forgetting to take my daily dose of Ibrutinib. I was horrified when I realized it. But it was the first lapse in 11 months, but I guess one slip a year is (maybe) permissable.
So, then, an update: I visited NIH for my three-month checkup November 7th.   Dr. Farooqui & Co. seemed pleased with my blood tests. Basically their comments can be summarized as, "Keep on keeping on."
All of my blood test numbers continue to very slowly move into the normal range, and some are now in that normal range. That is pretty remarkable, I think.
The one disappointment (that sounds terribly ungrateful for this truly miraculous drug) is that it seems not to restore one's obliterated immune system---at least not mine---although I think Dr. Farooqui thought some evidence was mounting to suggest maybe it did.
After my earlier August visit to NIH, at Dr. Farooqui's urging, I had one IVIG infusion per month for three months in an attempt to boost my immune system. I do think they helped a bit, based on how I felt in November, but to be honest I have not even looked at the December blood test numbers yet to compare them to the August or earlier numbers to see if the immune system indicators showed an improvement. And contrary to my comment that I felt better (which I did, in general) I came down with Coxsackie virus on November 16th. It was the third time in three years that I had come down with it, after never having had it in all my 63 years before then. Then, just after Christmas, I came down with what seemed to be a wicked sinus infection (again---and thank you, grandchildren!) with some of the grossest, yuckiest phlegm I have ever seen. But I have to admit that since then I have been slowly steadily getting rid of it, a little better every day.  I was worried about it for a while, but am not now.
Not much of that has to do with CLL directly, but I am sure the compromised immune system that arises from CLL is at the heart of it.
As for work----the at-the-office-earning-a-paycheck kind----I have not done so since February 2012. As I think I wrote earlier in this blog, my employer preferred to put me out to pasture rather than have me work from home (though I easily could have), and given the state of my immune system and all the young mothers carrying kiddie germs to the office, I thought it most unwise to be there (and besides, I was pitifully weak a year ago, anyway). So they put me on paid disability leave and that persists, although I am sure that will come to a screeching halt some day. We shall see.
When I read the daily "list serv" notices to the CLL community and the Yahoo discussion group postings from people who can't yet get Ibrutinib and who are still sorting through options like FCR and Rituxan, lanolidomide, or Bendamustine /Treanda, I feel SO lucky to have been accepted into this trial. Maybe in six months or six years it will prove to have been a disaster, but right now I am simply oh-so-grateful, and trying my darndest to dodge the flu.

By the way, as near as I can tell, I still have experienced no adverse side effects from Ibrutinib---none. 
I head back to NIH on February 6th.  I'll try to post an update immediately thereafter.