Wednesday, August 28, 2013


It has been quite a while since I last posted anything.

Not a whole heck of a lot to report, and that says a lot about the positive results from Ibrutinib.  It is amazing how seldom I even have to think about CLL anymore.  What a change from pre-Ibrutinib days.

I must admit, though, that "creeping neuropathy" in my toes and soles of my feet is of some considerable concern.  But the thing is, there is no telling what has caused it.  Is it from the Ibrutinib?  Is it from standard chemotherapy (FCR---Fludarabine, cycophosphamide, Rituxan) a few years ago?  From shingles?  Some other medication I might have taken over the years?

At my most recent visit to NIH, back in  early August, Dr. Farooqui said we could consider reducing the daily dose of Ibrutinib.

I don't think I am ready for that, especially since the Ibrutinib cannot be pinpointed as the culprit and the positive results from Ibrutinib are just too dramatic.  Apparently there is no body of evidence to suggest that Ibrutinib can cause this reaction

I'll just keep on keeping on, and be glad that I can.

Thursday, May 9, 2013

15-month Ibrutinib checkup

Got back very late last night from NIH.  What a long day: up at 3:15 a.m., catch a 6:00 a.m. flight. Return flight delayed. Finally back in bed at 1:30 a.m.  Pretty darned tired. But, given the cards I was dealt some years ago, I am darned lucky I have the opportunity to hobble through such a 22-hour ordeal.

Here's the report: Even though I had to go off Ibrutinib for 14 days (knee surgery),  my blood test numbers continue to march in the right direction. Amazing.

One little oddity: some other lab rats---not just me---have been reporting brittle, splitting fingernails after about a year on Ibrutinib.  Hmmm; tough choice: CLL or split fingernails?  Split fingernails or CLL?  Yet one must wonder: Are the brittle, split fingernails an outward manifestation of the same process that made my knee (meniscus--that supposedly cushiony pad in there) more fragile? Nobody knows.

One other thing: there has been some fearful chatter in the CLL community about a possibly horrific price tag for Ibrutinib, once it becomes commercially available. Folks have been throwing around bankrupting kinds of numbers. I can report "from the front lines" that when I signed for my newest batch of Ibrutinib at the NIH pharmacy yesterday, a thirty-dollar price per pill flashed onto (and quickly off) the screen. Precisely where this number comes from, I cannot say. Is it a rock-bottom actual cost of small-batch manufacture, one we could expect to go down with larger-scale production?  Is it a price we could expect to rise, so as to include a return on investment not now included in that price?  Or is it just an arbitrary accounting device used at the moment by NIH and/or Pharmacyclics?   Your guess is as good as mine, probably better.

Monday, April 22, 2013

Update at day 420 (approx.)

There are some developments to report. They may have nothing to do with Ibrutinib, Then again, maybe they do. Probably there is no way to tell.

Even before starting on this miracle drug (and I still consider it to be that), I was experiencing sharp pains in my shoulders, sometimes while doing nothing more strenuous than lying in bed. I was also experiencing the tiniest loss of feeling at the tip of one of my big toes.

I could conjure-up reasons for each: a worn-out shoulder joint from throwing too many pitches as a wannabe baseball player in high school and veteran Wiffle ball pitcher into my 60s; a bit of frostbite on the toe on a wickedly cold winter day's skiing in the 1980s.

But in the past month or two both got inexorably worse.

A general physical exam---a blood test as part of a regular physical checkup---revealed a touch of "arthritis factor." [Update 24 April: the arthritis specialist said today the blood test results re. arthritis factor are within normal range. "You don't have arthritis," he said. "Go home." False alarm. Apparently my "family practitioner" misinterpreted the blood test results.]  More troubling, the loss of feeling in the toe was ever-so-gradually intensifying, spreading to the pad on the foot just behind the toes and now in both feet.

Folks in the CLL community talk of "neuropathy," a kind of nerve damage caused by conventional chemotherapy, and it typically begins in those spots. But from what I read, it usually appears pretty promptly after the chemo is administered, even after just one or two sessions. I don't see anything in the literature about it showing up two years after conventional chemotherapy.

So here's the mystery: is it a belated arrival of neuropathy after chemo?  Or can it be attributed to the Ibrutinib? There is no way for me to know, but I am inclined to think it is the former. I would prefer to believe that, anyway.

One last bit of medical news: a tear of the medial meniscus of my right knee. In other words the natural cushion in my right knee got a bit shredded. How? No idea. The orthopedic surgeon says it is not unusual for people "my age"---thanks, Doc---to experience this from no obvious cause: no glorious twist in a tennis tournament, no sliding into second base, no hit from a 300-lb. lineman as I unloaded a touchdown pass; just old, brittle joints.  Did Ibrutinib exacerbate the "brittling" of the joint? Probably not, but other "Ibrutinib lab rats" might want to be watchful.

Surgery later this week. I have to go off Ibrutinib for seven days before the surgery and seven days after. I wish that were not required, but it will be interesting to see if the CLL resurges in the absence of Ibrutinib. Wish me luck. [Update 25 April:  It went fine. It feels much improved already, and no pain from the surgery.)

Thursday, February 7, 2013

Ibrutinib at one year

Just back from my one-year anniversary visit to the National Institutes of Health.

For the most part, I would say everything is still proceeding as in the past... slowly improving.

Two minor exceptions: my white blood cell number (WBC, they call it. White blood cells are, in the vernacular, pus) actually went back up a tiny bit, I suspect in response to my body trying to get rid of the sinus infection.

Also, my immunoglobulin numbers went back down from where they were in December (the wrong direction) but the December numbers were probably artificially inflated a bit by the immunoglobulin infusions in September, October, and November. There is still not much evidence (that I know of) among us human lab rats that this miracle drug---and it is that---patches up one's immune system.

The good news is that my hemoglobin and hematocrit numbers continue to inch slowly upward, and those numbers measure the oxygen-carrying capacity of the blood (hence suggest feeling more energetic).

Still seeing no discernible side effects. Just swallow these three little gray battleships every afternoon and keep the CLL at bay.

Pretty groggy today, having gotten up at 3:30 a.m. yesterday and not home until 10:30 p.m., with a two 25-mile drives, two plane trips, two bus rides, six subway cars, and a CT scan in-between---and worth all of that to be in this trial.

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.