Sunday, February 28, 2016

And so it goes

I just got back from The National Institutes of Health a couple days ago.

It was about "as expected"---that is to say, they confirmed that my four-year run on Ibrutinib is coming to an end. CT scans in February confirmed that my lymph nodes are starting to grow again. I really didn't need a CT scan to tell me that.  I can feel them in my armpits and a bit in my neck, too. Enlarged tonsils are interfering a bit with breathing while sleeping, reminiscent of five years ago.

While I was at NIH, they laid me on an operating table and used a double-wall needle to crank lymph node tissue out of my armpit.  Analysis will tell them if there is any chromosomal change in the nature of my CLL.  I suppose they are also looking for what is known as Richter's Transformation, a change from CLL to another form of blood cancer.  It can happen, but usually earlier in one's relationship with Ibrutinib.

So now it's on to Columbia-Presbyterian Hospital on March 8 to see about enrolling in another clinical trial, this one for a drug known as ABT-199 or Venetoclax.  Its reputation is that it is so effective that it has to be dialed-up slowly over the course of a multiple-day hospital stay so as not to overload the kidneys with dead, decomposing CLL cells, and that it works where Ibrutinib has begun to fail.

There is a solid basis for hope.

I am going to be interested to learn what Medicare and Capital District Physicians's Health Plan (CDPHP---my supplementary health insurance plan) have to say about all this, for unlike NIH, where EVERYTHING was free (they even paid for my air fare each time), Columbia-Presbyterian has already billed $500 just for an initial conversation back in November.

It looks like a clinical horse of a different financial color.

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.




Tuesday, January 27, 2015

Headed for three-year anniversary on Ibrutinib

February 1 is a big date for me. It's that date that changed my life--twice.

February 1, 1969, is the day I married Nancy.  February 1, 2012, is the day I got the call inviting me to the National Institutes of Health to see if I qualified for the clinical trial of what was then called PCI-32765, now called Ibrutinib.

Without Ibrutinib, there is a pretty fair chance I would be dead now.

So, looking back on those three years of Ibrutinib, what have I observed?

1) I am darned lucky to have been chosen for the clinical trial and to be able to go to NIH every three months, see the CLL specialists there, and receive a new supply of Ibrutinib at virtually no cost to me. I thank my lucky stars I am not haggling about it or the cost of it with a balky insurance company.

2) I am darned lucky not to be one of those CLL patients still being advised to undergo conventional chemo-therapy.  The sooner chemo-therapy is retired the medical hall of fame, the better. Why undergo a therapy that almost always does almost as much harm as it does good when it is no longer necessary?

3) As good as Ibrutinib is, it does nothing (that I can see) to patch up an immune system that has been damaged by CLL and hammered again by conventional chemo-therapy.

4)  Some--a lot?--of Ibrutinib users report symptoms ranging from aching joints to itchy skin to peripheral neuropathy and blame the Ibrutinib. From what I read of their accounts, their blame is comonly misplaced. Ibrutinib may indeed be at fault, but the proof simply isn't there. Anyone who has CLL is already vulnerable to all sorts of maladies and infections and if you have also had conventional chemo-therapy, doubly so. Add to that the fact that most CLL patients are in their mid 60s, at least. 

My own case is illustrative. I do, indeed, suffer from ever-expanding peripheral neuropathy. It has indeed grown worse with Ibrutinib.  But has it grown worse because of Ibrutinib? I think not.  I was always suspicious that I had slight peripheral neuropathy in my toes even before being diagnosed with CLL. In the past year, the peripheral neuropathy has grown severely worse. Doctors at NIH have done all sorts of tests to see if they can detect in me a pattern of nerve damage consistent with chemo-therapy.  A local neurologist here in the Schenectady area did similar tests and jumped quite without logic to the conclusion that the cause had to be, of course, the Ibrutinib.

Not one doctor asked me if I had any history of taking a fluroquinolone antibiotic. Lately I have learned that fluoroquinolone antibiotics are known to cause peripheral neuropathy. They are also known to cause cartilage to "go brittle," plantar fasciitis and tendinitis . . . all of which I have had in recent years, years in which I have ignorantly taken sequences of Levaquin and Ciprofloxacin probably four times, perhaps more . . . three times in just the past three years. I will even throw in atrial fibrillation (afib) as a problem some are attributing to fluoroquinolones. That is now on my chart, too, shortly after a round of Levaquin. (FDA has lately required a warning about tendinitis and neuropathy on fluoroquinolone antibiotic containers.) These drugs are commonly prescribed for sinus infections, a problem often experienced by CLL patients because of their compromised immune systems.

Given that scenario, does it make any sense to suspect Ibrutinib has caused my peripheral neuropathy? Not to my mind.

So, in sum: My own three years of experience tell me Ibrutinib is good stuff that makes conventional chemo-therapy seem barbaric and primitive in comparison. I hope it can be made available to all who need it at an affordable price, but if history is an accurate guide, that might not happen.

Friday, May 23, 2014

Status at 27 months of Ibrutinib

I visited the National Institutes of Health (NIH) again on May 12. This visit differed from previous ones in that I had an MRI of my lower back region to see if anything could be seen that might be causing the neuropathy in my feet. It showed nothing that could be at fault. So, cross that possible cause off the list.
As for the CLL, itself, blood test scores continue to look good---still improving---except for those that pertain to the immune system.  Red blood cell indicators, such as hematocrit and hemoglobin, are now officially in the normal range.  White blood cell numbers are again inching downward toward the normal range, although they still have a way to go. But that IGg (immunoglobulin) number is still looking pathetic. I guess it is something I'll have to learn to live with, and see if there are some nutritional boosts I can find.
When I think back to the state of my health in late January 2012 (so weak I had to be wheeled across the airport to get to NIH), a bit of discomfort from neuropathy in my feet, which might have nothing whatever to do with Ibrutinib, is nothing.  Heck, Nancy and I bicycled about 30 miles a day across southern Holland in early May.
Nothing to do but keep on keeping on---gratefully.

Wednesday, March 12, 2014

The mystery of neuropathy

The fact that I am now writing about neuropathy and not CLL says a lot.  Ibrutinib is awesome stuff.

Tests performed by Dr. Tanya Lehky, a neurologist at NIH, produced results that she called "consistent with chemotherapy damage"  (and not much different than results from pretty much the same test done locally back in October, she said). 

But that fact that something like 24 months had transpired between the final infusion of FCR (fludarabine-cyclophosphamide-Rituxan) and the onset of neuropathy in my feet tends to argue against FCR being the culprit.  Usually it shows up right away if it is going to at all.

Docs at NIH, having decided that my neuropathy was probably not a result of Ibrutinib (me being the only one), suggested I ought to have an MRI done of my lumbar region to see if something weird was impinging on nerves as they headed south to my feet.  A doctor there wrote a prescription for the MRI, to be performed back in the Albany, NY, area.

Then came the "medical bureaucracy game." 

Medicare is now my primary insurance. Fine.  Capital District Physicians Health Plan (CDPHP) is my secondary insurance. Fine. Except that CDPHP, for some inexplicable reason, farms-out its approval process for such tests to a third party called Medical Solutions company. Not fine. Medical Solutions refused to approve the test because the NIH doctor who wrote the prescription did not have an IRS tax number!  Of course he doesn't.  He's not in business to make a profit.

Got that?  Lack of a TAX NUMBER stands in the way of getting a medically approved test. 


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.

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.