tag:blogger.com,1999:blog-83929484553712693932024-02-08T12:17:23.605-05:00Alan KnightCLL JournalUnknownnoreply@blogger.comBlogger56125tag:blogger.com,1999:blog-8392948455371269393.post-26745552588655314292016-02-28T12:28:00.001-05:002016-02-28T12:28:36.542-05:00And so it goesI just got back from The National Institutes of Health a couple days ago.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
There is a solid basis for hope.<br />
<br />
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. <br />
<br />
It looks like a clinical horse of a different financial color.<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-61272065930424413752016-01-03T22:32:00.002-05:002016-01-03T22:33:51.742-05:00Approaching Fourth Anniversary on Ibrutinib<span style="font-size: 12pt; font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Another year gone by without writing anything more for this blog. But I
do feel compelled to write at least this annual update.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">There are a few interesting things to note (not that anyone actually
reads this anymore).<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">First, a personal report:<span style="mso-spacerun: yes;"> </span>My
lymphoma situation continues to look pretty good. The Ibrutinib continues to do
its job, and for that I am so very grateful. <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">I have discovered a bit of an oddity, though.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">It showed up in August 2015.<span style="mso-spacerun: yes;"> </span>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.)<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<span style="mso-spacerun: yes;">
</span>This was not a wild guess.<span style="mso-spacerun: yes;"> </span>It had
shown up in some other Ibrutinib users at about the same three-year mark. <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"> </span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">But here is where it gets really interesting.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">The test did not reveal the percentage of cells that were resistant.
Was it one percent? Five percent? Twenty-five percent?<span style="mso-spacerun: yes;"> </span>The test—very oddly, it seems to me—did not
determine this. <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">And how did it compare to previous blood samples taken from me over the
past three years?<span style="mso-spacerun: yes;"> </span>Well, no test had ever
looked for it before.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Is it possible that some percentage of my cancerous blood cells were
resistant to Ibrutinib the day before I took my first dose?<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Yes. <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Is it possible that taking the drug bore no relationship to the
development of resistance to it? <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Yes.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">In short: no answer.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">O.K., so now comes part 2 of this odd situation.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;"><strong>Conclusions?</strong> <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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 <i style="mso-bidi-font-style: normal;">develops</i> resistance to
the drug <i style="mso-bidi-font-style: normal;">after</i> treatment begins. It’s
just an unfounded assumption . . . quite odd for NIH.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Second, does my experience suggest that an occasional blast of
antibiotics might be a good thing for CLL patients?<span style="mso-spacerun: yes;"> </span>After all, CLL patients have compromised
immune systems and are vulnerable to infections.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>So then, a patient who receives this, say,
five times a year is running up some hefty medical bills.<span style="mso-spacerun: yes;"> </span>Maybe the antibiotics are cheaper.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><strong><span style="font-family: Georgia, "Times New Roman", serif;">Newer, better drugs<o:p></o:p></span></strong></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Even as good (miraculous) as Ibrutinib has been for me, there are newer and
probably better drugs now becoming available.<span style="mso-spacerun: yes;">
</span>Like Ibrutinib, they are taken orally—capsules—and work in very similar
ways. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Apparently, this has not been
observed in the newer drugs. <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><strong><span style="font-family: Georgia, "Times New Roman", serif;">And one not-so-good drug<o:p></o:p></span></strong></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">I write all this not to complain or even to solicit sympathy. It is to
warn you.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">Of course, the question is: Is this caused by the Ibrutinib?<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">I am inclined to blame fluoroquinolone antibiotics.<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-weight: normal;"></span></span><br />
<span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">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. <o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<h1 style="background: white; margin: 0in 0in 0pt;">
<span style="font-size: small;">
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; font-weight: normal;">In
August 2013 the Food and Drug Administration issued this Safety Announcement: “</span><span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;">FDA requires label changes to
warn of risk for possibly permanent nerve damage from antibacterial
fluoroquinolone drugs taken by mouth or by injection.”<o:p></o:p></span></span></span></h1>
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;"></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;">The
National Institutes of Health says,</span> <span style="font-weight: normal;"><span style="mso-spacerun: yes;"> </span>“</span><span style="font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;">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.</span><span style="font-weight: normal;"> (Document found here:<span style="mso-spacerun: yes;">
</span></span></span><a href="http://livertox.nih.gov/Fluoroquinolones.htm"><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">http://livertox.nih.gov/Fluoroquinolones.htm</span></a><span style="font-weight: normal;"><span style="font-family: Georgia, "Times New Roman", serif;">)<o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
<span style="font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;"></span></span><br />
<span style="font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;"><span style="font-family: Georgia, "Times New Roman", serif;">An
article posted by the National Library of Medicine states, “In contrast to
previous reports suggesting that fluoroquinolone-associated PNS<span style="mso-spacerun: yes;"> </span>[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: </span></span><a href="http://www.ncbi.nlm.nih.gov/pubmed/11793615"><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">http://www.ncbi.nlm.nih.gov/pubmed/11793615</span></a><span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: 12pt; font-weight: normal; mso-bidi-font-weight: bold;">).</span><span style="font-weight: normal;"><o:p></o:p></span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Georgia, "Times New Roman", serif;">According to an exhaustive, 253-page report entitled, “</span><a href="http://www.myquinstory.info/wp-content/uploads/2010/01/FLOX_REPORT_REV_11.pdf"><span style="color: blue; font-family: Georgia, "Times New Roman", serif;">The
Flox Report</span></a><span style="font-family: Georgia, "Times New Roman", serif;">,” 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.”<o:p></o:p></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">The case against fluoroquinolones is much stronger than that
against Ibrutinib. <o:p></o:p></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Do not take any unless you are on death’s doorstep and have
no other choice.<o:p></o:p></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">
</span><br />
<h3 style="margin: 1em 0in 12pt;">
<span style="font-weight: normal;"><o:p><span style="font-size: medium;"> </span></o:p></span></h3>
<br />
<h3 style="margin: 1em 0in 12pt;">
<span style="font-weight: normal;"><o:p><span style="font-size: medium;"> </span></o:p></span></h3>
<br />
<h3 style="margin: 1em 0in 12pt;">
<span style="font-weight: normal;"><o:p><span style="font-size: medium;"> </span></o:p></span></h3>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-47660474463429792072015-01-27T14:49:00.000-05:002015-01-27T14:49:11.958-05:00Headed for three-year anniversary on IbrutinibFebruary 1 is a big date for me. It's that date that changed my life--twice.<br />
<br />
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.<br />
<br />
Without Ibrutinib, there is a pretty fair chance I would be dead now.<br />
<br />
So, looking back on those three years of Ibrutinib, what have I observed?<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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. <br />
<br />
My own case is illustrative. I do, indeed, suffer from ever-expanding peripheral neuropathy. It has indeed grown worse <i>with </i>Ibrutinib. But has it grown worse <i>because</i> 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.<br />
<br />
Not one doctor asked me if I had any history of taking a fluroquinolone antibiotic. Lately I have learned that fluoroquinolone antibiotics are <i><b>known</b></i> 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. <br />
<br />
Given that scenario, does it make any sense to suspect Ibrutinib has caused my peripheral neuropathy? Not to my mind. <br />
<br />
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.<br />
<br /><br />
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-61334426195374577282014-05-23T14:43:00.001-04:002014-05-23T14:48:14.610-04:00Status at 27 months of Ibrutinib<div style="-webkit-text-stroke-width: 0px; color: black; letter-spacing: normal; margin: 0px; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
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.</div>
<div style="-webkit-text-stroke-width: 0px; color: black; letter-spacing: normal; margin: 0px; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
</div>
<div style="-webkit-text-stroke-width: 0px; color: black; letter-spacing: normal; margin: 0px; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
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.</div>
<div style="-webkit-text-stroke-width: 0px; color: black; letter-spacing: normal; margin: 0px; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
</div>
<div style="-webkit-text-stroke-width: 0px; color: black; letter-spacing: normal; margin: 0px; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
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.</div>
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Nothing to do but keep on keeping on---gratefully.</div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-50188904104127306002014-03-12T15:48:00.000-04:002014-03-12T17:37:53.664-04:00The mystery of neuropathyThe fact that I am now writing about neuropathy and not CLL says a lot. Ibrutinib is awesome stuff.<br />
<br />
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). <br />
<br />
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.<br />
<br />
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.<br />
<br />
Then came the "medical bureaucracy game." <br />
<br />
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.<br />
<br />
Got that? Lack of a TAX NUMBER stands in the way of getting a medically approved test. <br />
<br />
Wow. <br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-26296748527703198562014-01-06T19:44:00.000-05:002014-01-06T19:44:44.179-05:00Update at 23 months on IbrutinibOnce again it has been quite a while since I posted anything new.<br />
<br />
Once again there isn't a lot new.<br />
<br />
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.<br />
<br />
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.<br />
<br />
So, stay tuned for news on that.<br />
<br />
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.<br />
<br />
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.) <br />
<br />
The good news: still no return of lymph node swelling. Blood test numbers remain pretty stable. The drug works.<br />
<br />
Last bit of news . . . this blog has now had almost 12,000 page views. Hard to believe.<br />
<br />
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-63894549395893222122013-08-28T09:28:00.002-04:002013-08-28T09:30:04.671-04:00NeuropathyIt has been quite a while since I last posted anything.<br />
<br />
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.<br />
<br />
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? <br />
<br />
At my most recent visit to NIH, back in early August, Dr. Farooqui said we could consider reducing the daily dose of Ibrutinib. <br />
<br />
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<br />
<br />
I'll just keep on keeping on, and be glad that I can.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-77008455186872297082013-05-09T10:11:00.000-04:002013-05-09T10:11:00.593-04:0015-month Ibrutinib checkupGot 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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-29827325138566409932013-04-22T08:15:00.000-04:002013-04-26T01:53:33.778-04:00Update 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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
But in the past month or two both got inexorably worse. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.)<br />
<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-50275125955415458772013-02-07T11:30:00.000-05:002013-02-07T11:37:21.172-05:00Ibrutinib at one yearJust back from my one-year anniversary visit to the National Institutes of Health. <br />
<br />
For the most part, I would say everything is still proceeding as in the
past... slowly improving. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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).<br />
<br />
Still seeing no discernible side effects. Just swallow these three little gray battleships every afternoon and keep the CLL at bay.<br />
<br />
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. <br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-10573372882193185332013-01-15T12:59:00.000-05:002013-01-15T13:11:58.812-05:00Eleven months into Ibrutinib<table border="0" cellpadding="0" cellspacing="0">
<tbody>
<tr>
<td valign="top"><div>
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.</div>
<div>
</div>
<div>
</div>
<div>
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.</div>
<div>
</div>
<div>
</div>
<div>
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."</div>
<div>
</div>
<div>
</div>
<div>
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. </div>
<div>
</div>
<div>
</div>
<div>
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.</div>
<div>
</div>
<div>
</div>
<div>
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.</div>
<div>
</div>
<div>
</div>
<div>
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.</div>
<div>
</div>
<div>
</div>
<div>
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.</div>
<div>
</div>
<div>
</div>
<div>
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.<br />
<br />
<br />
By the way, as near as I can tell, I still have experienced no adverse side effects from Ibrutinib---none. </div>
<div>
</div>
<div>
</div>
<div>
I head back to NIH on February 6th. I'll try to post an update immediately thereafter.</div>
</td></tr>
</tbody></table>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-82261069706552913462012-09-01T12:07:00.000-04:002012-09-02T06:30:58.091-04:00Status at the End of Six Months of IbrutinibI had my six-month bone marrow biopsy on August 8. Janet Valdez at NIH did her usual expert job---no complaints whatsoever. Some people fear bone marrow biopsies, but this one, like the two I had previously, was no more painful than what a dentist does.<br />
<br />
Dr. Farooqui at NIH e-mailed me to say that my CLL bone marrow infiltration (if that is the right terminology) had been reduced from pre-trial level of 95% to a current level of 70%. I don't know whether to be overjoyed or disappointed. All I know is I was a wreck with severely puffed-up lymph nodes in my face and neck before I started and now I am back to a normal, reasonably lean appearance and feeling pretty darned good, taking 15-mile bike rides fairly regularly (well, until I got back from vacation at Cape Breton---where the sea food was fine and the fiddle music finer---but that's another story).<br />
<br />
My blood test numbers continue to progress slowly toward the normal range, except for my white blood count, which (odd to me) has slowly inched back up each month for the past three tests and jumped up fairly significantly on the August 8 test. Nobody (except) me seems to have an opinion as to why. Maybe the Ibrutinib is still pushing white blood cells out of the lymph nodes and bone marrow? Maybe it's from my body fighting a chronic sinus infection? (Still, on September 1). Maybe from a bad cut on my foot in late July on Cape Cod from an oyster shell? I don't know, but I am not worried (yet).<br />
<br />
Side effects? Still absolutely none, ever. I do have very sore shoulder sockets and a similar stiffness / pain across the base of my skull, as well as severe leg cramps from time to time. But I had all that before I started the trial. That could be tendinnitis from the antibiotic for the sinus infection (at least that's what the warning <br />
label on the antibiotic bottle said).<br />
<br />
I am VERY grateful for the relief (not to mention hope) brought to my life by this experimental drug. But lately I have had this nagging thought: Is it having any beneficial effect on my immune system? After all, pneumonia is what kills CLL patients. Blood test numbers that track my immune system (immunoglobulins IgA, IgM, IgG, IgD, and IgM, to be precise) remain low, seemingly unaffected by the experimental drug.<br />
<br />
Anecdotal reports so far from some other "human lab rats" on this and other Ibrutinib trials seem to show the same lack of improvement in immune system. <br />
<br />
Even so, my life is far better now than before I started this trial. <br />
<br />
I will be very interested to see what the numbers are in November, when I next visit NIH.<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-80069711134947459652012-07-12T14:39:00.000-04:002012-07-12T14:45:44.571-04:00Five Months Into PCI-32765 (now renamed Ibrutinib)Now five months deep into this clinical trial, I must say things are continuing to look about the same, and that is good All of my blood test numbers except one continue to show very gradual improvement. The one exception is the WBC (white blood cell count) number, which actually showed an infintesimally small increase (not the direction you want it to go). I attribute that to the fact that my sinus infection, long ago brought under control, was never fully subdued and is making a very gradual comeback. White blood cell numbers go up when one's body is fighting infection.<br />
<br />
That's my best guess, anyway.<br />
<br />
Another oddity: When I was at my worst, back in late January and early February, before starting this clinical trial, I was experiencing excruciating bedtime leg cramps. After the February 16 beginning of PCI those legs cramps went away. But in recent months they have gradually started to return.<br />
<br />
What to make of that? I am not sure. One theory bouncing around my brain is that perhaps it was not the PCI that halted the leg cramps. Maybe it was the transfusion I received at NIH at the very outset that did that. <br />
<br />
One other bit of news: a small group of "human lab rats" involved with this clinical trial has been sharing experiences and observations. One fellow who has been on PCI for more than a year reported that he had to stop taking PCI for a couple days (apparently for somewhat unrelated reasons). The swollen lymph nodes began to return almost immediately, he reported. I guess that tells us whether PCI is a cure or, rather, a therapy.<br />
<br />
Either way, I'll take it. For CLL patients, it looks to be the best game in town, making conventional chemotherapy look primitive and barbaric in comparison.<br />
<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-35568994102216825582012-06-12T11:18:00.001-04:002012-06-12T11:21:26.526-04:00PCI-32765 at Day 114My June 1 appointment at the National Institutes of Health marked the 114th day of treatment with the experimental drug PCI-32765, now also known as Ibrutinib.<br />
<br />
In sum: Hey, everything still looks good and very positive . . . far beyond what I had any right to expect or even hope for.<br />
<br />
Some details: My blood tests show almost no change from one month ago. That surprised me. I had thought a predictable course of events would show continued increased and decreased (as apppropriate) numbers toward normal scores. But that did not happen. <br />
<br />
That probably says much more about my expectations than about efficacy of the drug. Dr. Farooqui and the CLL team at NIH seemed unconcerned that the improvement in blood test numbers had tapered-off. And probably I should be, too. I feel very good . . . pretty normal, actually. Compared to where I was in January and early February, it's all still pretty darned miraculous. If my blood test results never get any better than they are now and I still feel as I do now, I'll be quite satisfied.<br />
<br />
So what is a plausible explanation for no further improvement in blood test results? It seems obvious to me that CLL cells are still being pushed into the blood stream from somewhere, either from lymph nodes where they had taken up lodging (seems plausible; my once-swollen lymph nodes are just about invisible now), or the bone marrow is still cranking out new CLL cells that are going straight into the blood stream without a stopover in lymph nodes.<br />
<br />
The end-of-trial bone marrow biopsy in early August should tell us what is going on in the bone marrow.<br />
<br />
What then? What happens after that final trial-related appointment and biopsy (and CT scan)?<br />
<br />
I posed that question to Dr. Farooqui and his colleagues. If I heard them correctly, the PCI-32765 will not be viewed as though it were a chemotherapy "cure." In other words, unlike chemotherapy, where "You're done; go home," the expectation is that a daily use of PCI-32765 will go on and on forever, provided there are no adverse effects. It appears that the drug company (Pharmacyclics) has agreed to keep supplying us "human lab rats" with the drug 'til death do us part.<br />
<br />
The investor class will likely be doing cartwheels of joy at this. That means thousands of people and their insurance companies paying for the drug day after day forever: a capitalist's dream come true. But I'm not complaining. Quite literally, it works for me. <br />
<br />
And there is such an investor class. Data available to me as owner of this blog tells me that a high percentage of the 3,700 "page views" of it have been linked from "Yahoo finance," where someone mentioned this blog and provided a link to it. <br />
<br />
Who woulda guessed?<br />
<br />
<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-67091414824934797332012-05-14T14:46:00.000-04:002012-05-14T15:08:32.889-04:00PCI-32765 at Day 90I just returned from another quick trip to NIH (the National Institutes of Health) at Bethesda, Maryland, where they did the usual blood test and had a look at me to see how the clinical trial is going.<br />
<br />
The short answer is: very well. <br />
<br />
I feel quite well and still have so much more energy than I had back in January and February. And still no perceptible side effects---quite amazing for a cancer treatment.<br />
<br />
A couple little oddities have popped up in the blood test results, though. <br />
<br />
For readers not immersed in CLL science, I'll just say that the subcategories of blood test results are closely and regularly monitored. A lot of CLL cases are discovered during routine blood tests at annual physical exams, when a doctor says, "Hmmm, your white blood cell count is high. Let's have a closer look at that."<br />
<br />
So there are subcategories like hemoglobin, hematocrit, platelets, lymphocytes, neutrophils, etc., etc. When you have CLL (or the SLL variant), some numbers go higher than normal; some go lower. <br />
<br />
The perfect cancer (or leukemia or lymphoma) treatment would be expected to push the numbers back toward the normal range.<br />
<br />
The PCI-32765 has pushed my white blood cell count numbers steadily downward toward the normal range. Good! It has also pushed my hemoglobin and hematocrit numbers, having to do with iron and oxygen-carrying capacity to the rest of the body, steadily upward toward the normal range. That's why I feel so much more energetic than I did a few months ago.<br />
<br />
But oddly, my platelets numbers have trended downward from the normal range since mid-March. It's possible that the higher number back in mid-March was inflated by the transfusion I was given in late February. I'm not worried about it, but it was a bit unexpected.<br />
<br />
My neutrophils number, though . . . it just registered an all-time low, and that isn't so good. What is a neutrophil? A key player in one's immune system. The normal range is 1.5--7.8. Mine just registered at 0.9, down from 8.5 in mid-April and down from 4.9 in late February..<br />
<br />
Dr. Farooqui, at NIH, says the human body is a dynamic up-and-down thing and not to worry. I am not crazy-worried about it, but if you see me avoiding handshakes, runny nosed-people, and crowds, I hope you'll understand.<br />
<br />
Numbers aside, I feel better than I have felt in many, many months. It is so nice to look into the mirrow and recognize the face looking back at me---no swelling. And I can actually lay down and sleep!Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-55189089174945017462012-04-22T22:02:00.000-04:002012-04-22T22:26:39.628-04:00Day 67 of PCI-32765The day after returning from the oh-so-valuable CLL conference in Niagara Falls seems like as good a time as any to post an update.<br />
<br />
First, about the conference: I wrote on my evaluation form "I do not think it would be an exaggeration to say that the previous conference, a few years ago, saved my life." This one was just as good.<br />
<br />
The previous one opened doors, and my eyes. It connected me to a network of highly informed patients and of doctors and researchers who care enough to interact "on their own time" with patients, doctors like the late Terry Hamblin (who was still replying to my questions just a month or so before he died), or like Dr. Joe Flynn at The James Cancer Center at Ohio State University, who comes to these conferences because he is both expert in CLL and because his mother died from it; people like Chaya Venkat, who recommended Dr. Tim Call at Mayo Clinic. Dr. Call became my "go-to" expert when I realized my local oncologist was a nice guy whose expertise in CLL was, well, shall we say, "limited"? Plus, I would not have known about the PCI trial at the National Institutes of Health if not for Chaya Venkat and her labor-of-love Web site: clltopics.org.<br />
<br />
This second conference brought me affirmation that I had made <em>reasonably</em> good decisions (I think; I hope) since being diagnosed and some new insights:<br />
1. a prediction by Dr. Michael Keating of M.D Anderson Cancer Center that CLL will be more or less conquered within three to five years. I think he is basing this prediction on the advent of PCI-32765 and drugs like it. You can see why I feel lucky to be on the clinical trial for that drug (not to mention that it seems to be working fabulously well for me with no perceived side effects).<br />
2. As we get older, the telomeres on the ends of our chromosomes get shorter and shorter, impairing our ability to battle things like CLL. BUT, exercise tends to keep our telomeres longer than they would otherwise be. So now we have a cytogenetic basis for what we already knew: exercise is good for us. <br />
3. The odds of my ever completely conquering my now-chronic sinus infection are slim (said Dr. Susan LeClair to me over cheese and crackers). It'll likely be a lifelong effort to keep it subdued---darned important to someone now dangerously vulnerable to pneumonia because of CLL.<br />
<br />
As for me, here on day 67 of my involvement in the clinical trial of PCI-32765, I could not be more encouraged or happier. The grotesque swelling of lymph nodes in my armpits, under my chin, at my temples and cheeks, and inward, into my throat, that was messing up my sleep? 95% gone. The various categories of blood test results are all heading steadily toward normalcy. Especially encouraging are the blood test results for hemoglobin and hematocrit---the scores pertaining to iron, oxygen-carrying capacity, and energy. I look at them and understand why I can walk the 2.5 miles round the lake so much more easily now and spend a couple hours digging up the vegetable garden without keeling over. Remember, as recently as the end of February I had to be wheeled across the Baltimore airport terminal to catch my shuttle bus to the National Institutes of Health. <br />
<br />
An amazing array of things had to fall into place to make this all possible: science, money, the internet, and government policy. Yes, politics: The National Institutes of Health is a government agency (gasp!). Plus, PCI-32765 was invented by Zhengying Pan, a Chinese guy from Shanghai working for Celera, the California-based company that pioneered the unlocking of the human genome. Is it a stretch to say he quite probably wouldn't have been there if Richard Nixon and Henry Kissinger hadn't been willing to engage China politically way back in the 1970s?<br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-36055357766596022622012-03-11T19:37:00.006-04:002012-03-13T15:55:22.615-04:00Better All the Time<div>There's a Beatles tune that goes:</div><div> </div><div><em>I've got to admit it's getting better </em></div><div><em>A little better all the time</em></div><div> </div><div>The tune keeps running through my brain, and I like it!</div><div> </div><div>The new (second) antibiotic and a twice daily saline rinse (disgusting and uncomfortable as it is) seem to have knocked out my sinus infection. </div><div> </div><div>Every day I feel stronger. My appetite has returned. I've gained back five pounds. My hearing is getting a <em>little</em> better every day. </div><div> </div><div>The weather has been in the 50s, so every day I take a walk, a bit longer each day.</div><div> </div><div>I am not ready to proclaim Mission Accomplished yet (sort of a bad history to that expression, anyway), but I am very encouraged and thankful. </div><div> </div><div>And, oh yeah, the CLL is definitely in retreat---at least swelling-wise---thanks to the experimental drug PCI-32765 and the National Institutes of Health.</div><div> </div><div>We'll find out in July if it really stopped the CLL at its source (the bone marrow) or whether the PCI is merely counter-acting it . Either way is a big improvement over where I was a month ago.</div><div> </div><div> </div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-37710559388179275952012-03-06T10:13:00.005-05:002012-03-06T10:40:48.721-05:00Dare I say it? Progress.At the risk of jinxing things, I think I can say I am seeing improvement.<br /><br />Little by little the sinus infection seems to be losing its punch. I still can't hear much, but even so, I can see and feel the difference: less crud coming out, no runny nose, no fever the last two days (although it has been so cold that I still walk around the house all bundled up), very little coughing.<br /><br />All of that has meant I am gradually gaining strength. In the mirror I still look like a cadaver, but one with no swollen lymph nodes and one who gained a couple pounds the past two days.<br /><br />I even felt strong enough to take a drive last night in Nancy's car to go buy a new one for myself---seeing as how Farm Bureau "repossessed" my company car. Slightly insane, but I felt strong enough to do it.<br /><br />The episode reminded me of the old Bert & I "Down East humor" stories. There is one story where an old geezer walks into town and chances to meet the undertaker. The undertaker quizzes him about his health and his age and concludes, "Virgil, you know? I think it hardly pays you to go back home." (It somehow loses its humor if I have to explain it.)<br /><br />But, I thought, yeah, it pays me to buy this. I'm planning on lots of miles yet.<br /><br />For that I have to thank the people at the National Institutes of Health. Not only did they hear my plea to immediately start on the clinical trial of PCI-32765 (which seems to be producing amazing results so far), but they correctly diagnosed my sinus infection and persistently followed up to get the antibiotic right.<br /><br />In contrast, consider this: the coughing started in late September. Since then, locally, I had seen two GP doctors once each and one respiratory specialist twice, had two lung capacity tests and one chest x-ray, and not once did any of them consider that the problem was not in the lungs, but in the sinuses (despite the fact that sinus infections are common among CLL patients) with a post nasal drip causing the cough. Since September all of them had missed the fact that I had a specific kind of infection that causes pneumonia, the leading killer of CLL patients.<br /><br />The people at NIH caught it on day 1.<br /><br />Yeah, I owe them a lot.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-90565610199797216142012-03-02T11:25:00.015-05:002012-03-06T14:41:08.143-05:00We need some new blood around here<div align="left">Back in the days of yore, before Nancy and I had bought the hilltop farm and we were summering our sheep on small borrowed pastures around the edges of the Village of Candor, we had a black sheep or two. </div><div align="left"> </div><div align="left"> </div><div align="left">You know that expression, "The black sheep of the family?" We discovered some weird truth to it. Over on the right side of the hillside would be 20 or 30 sheep grazing contentedly. Way over on the left side, by themselves, would be the one or two black sheep.</div><div align="left"> </div><div align="left"> </div><div align="left">When it was time to move them all to fresh grass, we'd open the gate and they'd all run through, except the black sheep. They'd run the opposite direction. If it was a black sheep, you could bank on it, as though the circuits in their brains ran counter clockwise.</div><div align="left"> </div><div align="left"> </div><div align="left">Here's another expression: "We need some new blood in this organization." I now know this is more than a trite turn of phrase. For the first time in my life, I received a transfusion yesterday and the day before. If <em>zero = dead</em> and<em> ten = perfection</em>, I would rank my energy level before the transfusion at about 1.5 and now, 24 hours after, at about 5.</div><div align="left"> </div><div align="left"> </div><div align="left">At the National Institutes of Health, I was given the transfusion with the goal of boosting my immune system enough to help beat down this unending sinus infection---the infection being a common side effect of CLL due to the impaired immune system. They also sent me to one of their in-house ear, nose, throat specialists, who used a little "micro vacuum" to suck all that yucky goop out of there and get it analyzed. They also switched from sulphamethoxazone antibiotic to Levofloxacin, which I also think is making a difference.</div><div align="left"> </div><div align="left"> </div><div align="left">All of this might seem tangential to the CLL and the clinical trial of PCI-32765. It is. But that's how it is with CLL: It's the tangential stuff that will kill you.</div><div align="left"> </div><div align="left"> </div><div align="left"> </div><div align="left">I have to say the experimental drug PCI-32765 so far has been darned near miraculous. I feel better today than I have in weeks. I don't think I'll make the Tour de France this year, but it's looking good for 2013. </div><div align="left"> </div><div align="left"> </div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-9019554036574159342012-02-23T15:41:00.006-05:002012-03-13T15:56:41.243-04:00Another update: Thursday, 23 Feb 12Yesterday was kind of an encouraging day in a small way. In the morning, just after waking up, great gobs of thick, bloody mucous blew out of my sinuses (with some effort), I think in response to use of a Zycam nasal spray eight or ten hours earlier.<br /><br />Then, last night, one of my ears popped open a little bit a for a couple hours after I let the hot water in the shower beat down on my bag of bones for 15 or 20 minutes. It felt weird to hear again, even if a little, and it was pretty encouraging. Bag of bones? Yeah, I have dipped as low as 165 pounds, then back to 170. In 2009, I was around 195. I decided to lose some weight, but not<em> that</em> much.<br /><br />There is no question that the experimental drug---PCI-32765---is working. It's all the other stuff---sinus infection, extreme fatigue, a mild fever now and again, no hearing, spotty sleep---that is dragging me down still, but I am working on them with antibiotics, saline and other nasal sprays, codeine based cough medicines..... you name it.<br /><br />Funny how just changing from Dayquil cough medicine to Alka Seltzer cold & flu fizzy tablets can make a difference, but yesterday it seemed to work better. I actually felt a little---and I do mean little---bit more energetic.<br /><br />Farm Bureau is suggesting I apply for a disability leave. They wrote to say working from home was longer acceptable. (And in my current state, I confess I could not, anyway.) They say they want to help me apply through a company-owned disability-leave insurance policy that would pay me 60%-70% of my current salary for up to two years. It sounds like the best idea, but I will be interested to see the details. As the late Candor dairy farmer George Ace used to say, "The big print gives it all to you. The fine print takes it all away."Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-4627139793329344862012-02-19T17:47:00.004-05:002012-02-19T18:08:48.022-05:00PCI-32765 plus four daysI am tired, exhausted, really. If I climb the 12 steps to go upstairs, here at home, I have to sit down to rest.<br /><br />I was already growing increasingly tired in recent weeks, even before getting involved with the clinical trial, but now? Hoo boy. Whether it is the 14 hours of round-trip travel to Bethesda, all the blood samples they sucked out of me, the surgeries to obtain lymph node biopsies (tougher than I would have thought; pretty sore), or the PCI-32765 drug, itself, I don't know. All I know is, I am utterly wiped out.<br /><br />It would be good to know what is causing this horrendous, resonating cough (which I have now had since the end of September). My sinuses are still plugged up (sinus infections are fairly common among CLL patients) and maybe a post-nasal drip is causing the cough. The doctor at NIH (National Institute of Health) prescribed an antibiotic for it and now, four days later, not much has changed yet.<br /><br />As for the PCI-32765, itself, now four days into it, I do think it is gradually reducing the swelling in my face. <br /><br />Maybe my energy level will gradually rise. I do hope so. Got to be patient.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-90702164377910224452012-02-11T11:02:00.008-05:002012-02-11T11:43:32.792-05:00Encouraging news<p>This whole process of shopping for a clinical trial reminds me of choosing and applying for admission to a college. Which is the best one for me? Will they admit me? Are all the slots filled?</p><br /><br /><p>As recently as ten days ago, I thought I had no options left, or only poor ones. Sort of like applying for Harvard but having to settle for an on-line course at the University of Phoenix. But maybe I got lucky.</p><br /><br /><p>Four days ago Nancy and I drove seven hours south to the National Institute of Health (NIH) at Bethesda, Maryland. </p><br /><br /><p>After sending in all my CLL-related history---pages and pages of faxed medical records---I was invited to visit NIH to see if I fit their specifications for a clinical trial evaluating an experimental drug called PCI-32765. Click <a href="http://updates.clltopics.org/">here</a> and then scroll down a bit and you'll find more than you ever wanted to know about PCI-32765 and how it works. The basics: it's not a chemotherapy. It's a daily pill and it interferes with the development of CLL. And test results so far are very encouraging, almost in the "too good to be true" category. </p><br /><br /><p>They stuck a bunch on needles in me---blood tests, bone marrow biopsy, CT scan, EKG---and asked me to come back next week for one more biopsy and to take the first dose of this stuff.</p><br /><br /><p>They tell me that by next weekend, my lymph nodes will already have shrunk dramatically. Works for me. At the moment my head is so swollen I feel like someone stuck an air hose in my ear and started pressurizing my skull. My ears are all plugged up, either from swelling or a head cold the likes of which I have never had before. Ever try to talk when under water? That's what I sound like to myself right now. </p><br /><br /><p>Seven hours of driving is an ordeal to get there, but it's worth it. Then I am supposed to go back once every two weeks for two months, and then maybe once or twice more in the six-month trial. For those trips, maybe I can fly down there or take the train, when I am feeling more energetic.</p><br /><p>The staff at NIH could not have been more accommodating, more personable, better listeners, or more competent. Picture a college campus the size of Cornell and realize it's all medical. Quite amazing. </p><br /><p>Dr. Mohammed Farooqui, the guy managing this clinical trial, impressed me very much. Susan Soto, the nurse who does all the scheduling, went out of her way to listen in an earlier phone conversation to the urgency of my situation and to make things happen without delay. She gets my number 2 Valentine's card this year, after Nancy, of course. </p><br /><p>These next four or five days, before starting treatment, will be tough ones, as I have had to stop taking Prednisone, which was about the only thing having a beneficial effect these past few weeks, keeping the swelling in check at least somewhat. Since stopping it, the swelling has been going crazy. </p><br /><p>Four days. Just four more days.</p><br /><br /><br /><br /><br /><br /><br /><p></p>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-77905793838967077372012-02-03T12:34:00.005-05:002012-02-03T13:25:50.127-05:00The way it isIt has been a long time since I posted anything here. I didn't want to freak-out Nancy with the "inconvenient truth." But it seems we are past that point now.<br /><br />The inconvenient truth is that if you flunk your first round of chemotherapy---especially if it is a chemo that is considered to be the gold standard of chemotherapies---you are, statistically speaking, "up the creek."<br /><br />So, for the past year or so, I have been shopping for a paddle---in the form of a clinical trial.<br /><br />My local oncologist had been recommending for months (maybe a year) that I do a second round of chemo, this time with a combination of Bendamustine and Rituxan. I have resisted. I do not like what I read about the history of Bendamustine and the data upon which its official approval as a lymphoma treatment was based---that the trials were arranged to make it look better than it really is. Nor am I encouraged by an Italian survey of Bendamustine users that turned up the detail that 67% of them were dead within two years. That doesn't sound like success to me.<br /><br />I went to Memorial Sloan Kettering Cancer Center in New York City to discuss with Dr. Jae Park his clinical trial with Revlamid (lenolidamide)---a variation on the old thalidomide. It sounded pretty promising. I went back to Mayo Clinic in Minnesota in early December and met again with Dr. Timothy Call, who recommended a clinical trial with a new experimental drug called PCI-32765, and upon my return began looking on the Internet for one. I also visited Dr. Jennifer Brown at the Dana Farber Cancer Center in Boston. I am impressed with all three of these CL specialists.<br /><br />A visit to www.clinicaltrials.gov turned up several PCI clinical trials that were apparently available, but direct contact with the listed hospitals revealed that most actually were not available any more.<br /><br />I'll spare you the crazy details of how some hospitals/clinical trials seem to do a "bait and switch" ("Sure come on down for an appointment," and then when you get there, they tell you, "Oh, that trial you've been asking us about for two weeks actually isn't available any more, but we have this other trial.")<br /><br />I can say with some great relief that I was recently notified that I have been accepted for a PCI trial at the National Institute of Health. It has been so difficult to find one that suits my circumstances, that is (was) still open, and that also will accept me that I am almost afraid to jinx it by saying "I'm in." But unless they pull the rug out from under me in the next two days, Nancy and I will be traveling to Bethesda, MD, next Tuesday to get me started.<br /><br />PCI-32765 differs from chemotherapy in two major ways: (1) it's a pill, not done intravenously; and (2) it (reportedly) doesn't blast away your immune system in the war against excess white blood cells. To over-simplify, it seeks to halt or regulate the production of CLL cells.<br /><br />I am pretty sure the next six months won't be a "walk in the park." Undoubtedly there are risks. But it's time to get moving on this.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-73323942997933988812011-07-30T18:27:00.007-04:002012-02-03T12:34:49.476-05:00Here we go againI have occasionally written here that "no news is good news." Well, maybe that hasn't been quite true. No news can also mean something weird is going on inside me and I see no point in writing about it until I know what I am talking about---more or less.<br /><br />That is the case now.<br /><br />And, by the way, I write all this detail that follows not to "over-share" with concerned friends and family members, but to be of some small service perhaps to fellow patients, some of whom have been so very helpful to me in recent years and months. I have learned so much from them.<br /><br />Somewhere around August of 2010 I began to have suspicions that my face was swelling up again, a pretty sure sign that the CLL was making a comeback---despite having completed FCR chemo treatment only five months earlier. (It's not uncommon for such "first line" treatment to achieve something resembling remission for five years or more.) But the swelling wasn't the classic CLL sort, it seemed to me. Rather than the distinct, hardened little marbles of lymph node that begin to swell beneath the skin, this was a diffuse, generalized swelling of what I call "flat tissue." It was appearing in both cheeks and both temples, in one armpit (which was more node-like) and, much more annoying, inside my throat, causing a return of the nighttime gagging that has robbed me of countless hours of sleep over the past few years. It also was growing inward from my cheeks towards my teeth, making it awkward (at first) and painful (later) to chew.<br /><br />Some correspondence with Dr. Terry Hamblin in the UK brought this reply: "I wonder if something else isn't going on here." He suggested the possibility of "urticaria," a doctor's five-syllable word for "hives." Further reading brought me to a self-diagnosis of "angioedema," which is the same as hives but in deeper tissue, not at the surface. And in fact, angioedema is, in rare cases, caused by CLL. It is as though the body has an allergic reaction to CLL.<br /><br />Dr. Hamblin suggested trying a regimen of doxepin for the angioedema and a local immunologist humored me by prescribing it. Nice try. But it did nothing to reduce swelling.<br /><br />My family practice doctor was persuaded to let me try a regimen of steroids (prednisone). The reduction in swelling was dramatic and immediate, as was the rebound of swelling as soon as the nine-day regimen ended. But since continual use of prednisone is a bad idea, it was no long term solution to my swelling problem.<br /><br />A blood test on July 1, compared to April's, showed that my white blood cell count was moving up again and at an escalating rate. By mid July, the nightime gagging was preventing sleep no matter what contorted angle I might twist myself into at night. I was consistently biting the inside of my mouth as I ate. Pressure was pushing into my ears and squeezing tears (physical pressure, not emotional) out of my eyes all day. Not to mention looking pretty weird. I felt dull-witted, groggy, and very tired.<br /><br />The upshot? Yesterday (Friday, July 29) I started a new round of chemo: Rituxan plus the usual augmentation with steroids. Next Friday I do it again, perhaps with Bendamustine added-in. That decision hasn't been made yet. I was leaning toward not adding it, but blood tests are suggesting that I need to deal with the bone marrow, not just the swelling, itself, so maybe it will be the better decision. That decision will likely be made at an appointment this coming Thursday,<br /><br />Update, Sunday 31 July: I feel better than I have in months. More energy, clearer-headed. Great day kayaking on the Mohawk River. No wonder athletes like steroids! But, more important, the swelling is noticeably in retreat.<br /><br />How long will it last this time?<br /><br />I can only hope.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-8392948455371269393.post-26771522217647198312010-09-20T12:36:00.004-04:002010-09-20T13:03:42.612-04:00September Status ReportI have delayed writing my newest blog entry---and I know there have not been many, or even any, lately---until I had the latest test results and could digest them to make sense of it all.<br /><br />The short report? To quote Dr. Howard Schlossberg, my oncologist: "Looks good."<br /><br />Here's the unabridged version:<br /><br />My final chemo session was at the end of February. The CT scan and then a PET scan shortly thereafter showed that my lymph nodes had shrunk pretty much back to normal. A couple were still a very little bit enlarged, but barely so. My eyes and my fingers cannot detect them, so I am calling them "normal."<br /><br />My blood tests showed a very low white blood cell count (meaning an immune system that was still quite sub-par) and my red blood cell count was at the threshhold of being considered anemic. Dr. Schlossberg was not ready to use that term, but when I compared the numerical scores to standards readily available on the Internet, they were right at the top edge of "anemic."<br /><br />Scoreboards aside, I sometimes felt anemic. I could ride my road-bike for 15 miles and feel good, but get winded and dizzy just climbing stairs. Definitely not normal. But also not uncommon for people who have had the chemo therapy that I had. My reading tells me this situation could be expected for a year or so after completing chemo therapy.<br /><br />I had another PET scan on August 30th, although I almost cancelled it. I couldn't see what decision would be served by it, and was against the idea of soaking up more radiation for no apparent reason. However, Dr. Schlossberg convinced me that the PET scan would "light up" any lymph nodes that were abnormally active, even if still small.<br /><br />And if they did light up? What then? Not sure. I am not sure the added PET scan was really useful in terms of possibly jumping into another round of treatment---the only possibly decision that could be made from the test, especially when blood tests at the same time showed no change from April or May; that is white and red blood cell counts still low---maybe a teeny bit improved.<br /><br />The August 30 PET scan showed no enlargements of lymph nodes since the completion of chemotherapy, nor any that were particuarly "lit up."<br /><br />Nobody is using the term "remission" and there is no cure, but the fact of the matter is that my CLL has been bludgeoned into a seven-month hibernation.<br /><br />I'll take it.<br /><br />Also, I have started taking vitamin B12 and iron supplements to try to boost my red blood cell level. I have had no blood test since starting, but I do feel more energetic.<br /><br />Considering the cards I was dealt, not bad.Unknownnoreply@blogger.com