Sunday, January 3, 2016

Approaching Fourth Anniversary on Ibrutinib

Another year gone by without writing anything more for this blog. But I do feel compelled to write at least this annual update.

There are a few interesting things to note (not that anyone actually reads this anymore).

First, a personal report:  My lymphoma situation continues to look pretty good. The Ibrutinib continues to do its job, and for that I am so very grateful.

I have discovered a bit of an oddity, though. 

It showed up in August 2015.  At my scheduled visit to NIH, blood test results showed an unexpected spike (upward) in my white blood cell count. It had been 12,700, then 16,300 in May, and then 27,600 in August. (Bear in mind that a normal range is 3,800 to 10,800.)  

Acting on a hunch, my doctor at NIH thought perhaps the rather marked increase was caused by mutations in my lymphoma (blood cancer) cells, with the mutated cells being resistant to the Ibrutinib.  This was not a wild guess.  It had shown up in some other Ibrutinib users at about the same three-year mark.

So, he had some additional blood samples drawn to check for the mutation and, sure enough, the lab found that some of my CLL (lymphoma) cells had, indeed, mutated and become resistant to the drug.

But here is where it gets really interesting.

The test did not reveal the percentage of cells that were resistant. Was it one percent? Five percent? Twenty-five percent?  The test—very oddly, it seems to me—did not determine this.

And how did it compare to previous blood samples taken from me over the past three years?  Well, no test had ever looked for it before.

Is it possible that some percentage of my cancerous blood cells were resistant to Ibrutinib the day before I took my first dose?


Is it possible that taking the drug bore no relationship to the development of resistance to it?


In short: no answer.

O.K., so now comes part 2 of this odd situation.

In late September I developed a very serious case of pneumonia, bad enough to land me in the hospital for three days with several rounds of various intravenous antibiotics.

A blood test done October 29 showed a precipitous decline in my white blood cell count, all the way down to 11,100—almost back into the normal range and the lowest score since a blast of conventional chemotherapy back in 2010.


First, NIH and the company paying for this clinical trial really need to insist on blood tests that quantify the percentage of resistant lymphoma cells date by date. Right now they have no reliable data to suggest that CLL mutates and develops resistance to the drug after treatment begins. It’s just an unfounded assumption . . . quite odd for NIH.

Second, does my experience suggest that an occasional blast of antibiotics might be a good thing for CLL patients?  After all, CLL patients have compromised immune systems and are vulnerable to infections.  Many CLL patients receive regular intravenous infusions of immunoglobulins to bolster their immune systems. The one time I received this treatment the price tag was $21,000.  So then, a patient who receives this, say, five times a year is running up some hefty medical bills.  Maybe the antibiotics are cheaper.

Newer, better drugs

Even as good (miraculous) as Ibrutinib has been for me, there are newer and probably better drugs now becoming available.  Like Ibrutinib, they are taken orally—capsules—and work in very similar ways.  All reports to date indicate that they are even more precise and have fewer side effects. For example, some few patients taking Ibrutinib have experienced atrial fibrillation—racing of the heart.  Apparently, this has not been observed in the newer drugs.

So I say again, as I have in the past: The day is coming when conventional chemotherapy will be seen as primitive and barbaric. Personally, I think that day is already here.

And one not-so-good drug

One last report on my personal situation: the neuropathy (loss of feeling) in my feet continues to spread ever so slowly. There are days I sense the numbness up into my shins. And it seems to be accompanied by nerve twitching, wickedly painful cramps that contort my feet, and most recently tendon injuries, especially in my Achilles tendon.

I write all this not to complain or even to solicit sympathy. It is to warn you.

At least three different neurologists have stuck little electrodes in my feet and legs and zapped me with electricity in an attempt to analyze the nerve damage and make educated guesses as to its cause.

Of course, the question is: Is this caused by the Ibrutinib?

I do not think so. It is possible, but I do not think so. Unless the doctors at NIH are lying to me, and I do not think they are, there are no other reports of neuropathy among other Ibrutinib users. Nor have I found any reports of it elsewhere.

I am inclined to blame fluoroquinolone antibiotics.

I have taken a lot of them over the years, largely for sinus infections, and there is a growing body of evidence establishing the case that Cipro, Levaquin, Levofloxacin, and other brands of fluoroquinolones do, in fact, cause peripheral neuropathy and tendon damage.

In August 2013 the Food and Drug Administration issued this Safety Announcement: “FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection.”

The National Institutes of Health says,  The common side effects of the fluoroquinolones are gastrointestinal disturbances, headaches, skin rash and allergic reactions.  Less common but more severe side effects include QT prolongation, seizures, hallucinations, tendon rupture, angioedema and photosensitivity. (Document found here:

An article posted by the National Library of Medicine states, “In contrast to previous reports suggesting that fluoroquinolone-associated PNS  [peripheral nervous system] events are mild and short-term, 36 of the 45 cases reported severe events that typically involved multiple organ systems. Although many newer cases are still evolving, symptoms had lasted more than three months in 71% of cases and more than one year in 58%.” (Document found here:

According to an exhaustive, 253-page report entitled, “The Flox Report,” Quinolones cause permanent injuries, especially degeneration of cartilages in knees, hips, spine, and shoulders, plus irreversible damage in the eye, fatal arrythmias and irreversible neurological disorders.”

The case against fluoroquinolones is much stronger than that against Ibrutinib.

Do not take any unless you are on death’s doorstep and have no other choice.