Saturday, September 1, 2012
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).
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).
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
label on the antibiotic bottle said).
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.
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.
Even so, my life is far better now than before I started this trial.
I will be very interested to see what the numbers are in November, when I next visit NIH.
Thursday, July 12, 2012
That's my best guess, anyway.
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.
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.
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.
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.
Tuesday, June 12, 2012
In sum: Hey, everything still looks good and very positive . . . far beyond what I had any right to expect or even hope for.
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.
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.
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.
The end-of-trial bone marrow biopsy in early August should tell us what is going on in the bone marrow.
What then? What happens after that final trial-related appointment and biopsy (and CT scan)?
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.
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.
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.
Who woulda guessed?
Monday, May 14, 2012
The short answer is: very well.
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.
A couple little oddities have popped up in the blood test results, though.
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."
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.
The perfect cancer (or leukemia or lymphoma) treatment would be expected to push the numbers back toward the normal range.
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.
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.
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..
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.
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!
Sunday, April 22, 2012
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.
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.
This second conference brought me affirmation that I had made reasonably good decisions (I think; I hope) since being diagnosed and some new insights:
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).
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.
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.
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.
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?
Sunday, March 11, 2012
Tuesday, March 6, 2012
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.
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.
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.
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.)
But, I thought, yeah, it pays me to buy this. I'm planning on lots of miles yet.
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.
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.
The people at NIH caught it on day 1.
Yeah, I owe them a lot.
Friday, March 2, 2012
Thursday, February 23, 2012
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 that much.
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.
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.
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."
Sunday, February 19, 2012
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.
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.
As for the PCI-32765, itself, now four days into it, I do think it is gradually reducing the swelling in my face.
Maybe my energy level will gradually rise. I do hope so. Got to be patient.
Saturday, February 11, 2012
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?
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.
Four days ago Nancy and I drove seven hours south to the National Institute of Health (NIH) at Bethesda, Maryland.
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 here 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.
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.
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.
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.
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.
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.
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.
Four days. Just four more days.
Friday, February 3, 2012
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."
So, for the past year or so, I have been shopping for a paddle---in the form of a clinical trial.
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.
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.
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.
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.")
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.
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.
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.