It's 2012, and my CLL journey continues along a new stretch of Shit Creek. I am, at the moment, paddle-free.
But let me take a moment to wish you all a Happy New Year. May we continue on in enough good health to continue on, and may we have time left over after dealing with medical matters to enjoy our lives, our loved ones, and the beauty and bounty that the Earth provides.
It's important to keep that perspective, even in difficult times. As you know, I lost my older brother to a stroke six months ago, so mortality seems that much more fragile to me than it did before.
Then, this morning, I scrolled through the list of blogs I keep on the right side of this page and found that another CLL compatriot, Jackie Sue, has passed on.
Everywhere in CLL World I see struggle; often with enough success to keep on fighting another day, sometimes with less success than was hoped. And all this is occurring against a rather jaw-dropping array of new progress in CLL, namely the kinase inhibitors such as CAL-101 and PCI-32765 and the CAR trials of juiced up killer T-cells, such as CART-19 at the University of Pennsylvania. (This PDF from CLL Global gives a good, brief rundown on both.)
I cannot help but conclude, as I think of friends I have lost, as I think of those who are struggling as I am, how close we are to salvation, and yet so far.
I blog less these days. One big reason is that I am busy with our ever-growing and ever-demanding online business, not to mention personal matters, usually my health and that of my dear Marilyn.
But when there is a little time left over, I find myself hesitating to write. In part, I have run out of useful things to jabber about. My training as a newspaper editor etched into my head that a story has to be worth being told to merit space in print.
Another reason is, for lack of a better term, battle fatigue. You can paint lipstick on the CLL experience, but it's still a pig, and after eight years I have seen enough pain, suffering, and life-altering disruption to conclude that having CLL completely and totally sucks. There's nothing good to be said about it, and therefore I find myself not wanting to talk about it.
That said, it was my promise when I started this blog to describe my journey honestly and completely, so that my experience will be a useful learning tool for those who come along. And so, the latest:
The good news is that the abscess referred to in my last post has healed, the drain has come out of my neck, and the infection is gone. The node in question has not enlarged very much; indeed that side of my neck shows less nodeyness than the other. Perhaps if we CLLers stick drains in our nodes the disease will simply drip away. (Yes, I'm kidding.)
The bad news is that my disease has entered a new, more aggressive phase. For the first time, my red counts have dropped due to marrow impaction. My hemoglobin has been in the 10 to 11 range for the past couple of months. Platelets have also fallen, to just above 100. I am on the doorstep of Stage 4, measuring by those numbers.
What's worse, the nodes have returned with a vengeance, that one area of my neck aside. My guess is that this is simply the product of ineffective control of the disease for many months, as opposed to some new mutation. Until I have a FISH test, I won't know for sure.
Let's back up for a minute. I'll try to cover some history, briefly, that would have made for several blog posts had I had the time.
After a year of treatment, I went off Revlimid (lenalidomide) last March, in part because I wanted to give my body a break. As you may recall, I had two transient ischemic attacks while on the drug. Clotting problems run in my family and claimed the lives of both my brother and my mother.
Another reason was the expectation that I might qualify for a CAL-101 clinical trial. I will call this the Godot trial, because I kept waiting and waiting and waiting for a slot to open, and was told "any day now" for what became months and months. What was supposed to have occurred in April was delayed until August. Even then, it all seemed rather promising. I had restarted Revlimid in July because the need to treat could wait no longer. Calistoga, the maker of CAL-101, was even willing to waive the requirement that I should not have had treatment 28 days before enrolling. When I was about to pack my bags, I got the bad news: due to a clerical error, the slot in question did not exist. And they could not just add a new one, since the maker of the other drug in the trial, ofatumumab (aka Arzerra), would not provide any more free drug.
I was told that drug companies hire other companies to organize and manage trials for them, and that one of these companies had made the mistake. The principal investigator was quite aplogetic and said this had never happened in all the years he had been conducting trials. Goodbye, paddle.
Meanwhile, back at Revlimid Ranch, things weren't going so well. When I restarted the drug, I did so with a great deal of care paid to the clotting issue. At the time I began Revlimid 2.0, my brother lay in the hospital, unable to move his left side and barely able to move his right.
I had a
complete clotting panel done, which confirmed my propensity to clot. Indeed, it came out worse than a similar panel that was run on my brother.
I had been on warfarin for a little while prior to quitting Revlimid in March, but my clotting time always remained pretty much normal, which means fast. And so when I began Revlimid again, we
added more warfarin, to which, it turns out, I don't easily respond. Later, my doctor added aspirin to the warfarin. Meanwhile, the Revlimid dose was kept
minimal, at 5 mg twice a week and occasionally every other day. As it turns out, I wasn't getting enough of the drug.
In November came the first signs of trouble. My red counts showed a drop, and my lymphocyte count showed a jump. Shortly thereafter, I began to notice an orange cast to my urine. I've posted about that several times, and in the past it had always been a sign of hemolysis due to autoimmune hemolytic anemia (AIHA). I assumed that was the case this time as well.
Revlimid, an immunomodulator, had seemed to put an end to my AIHA. Tests were ordered, and in the meantime I went on Revlimid 5 mg daily in an effort to head the hemolysis off at the pass. It made sense at the time: Maybe I needed more Revlimid to control the situation.
But the testing showed no signs of AIHA, and also that red counts were continuing to drop. And the orange urine remained, which brought me to the next logical conclusion: internal bleeding due to blood thinners.
So I stopped the thinners and the orange disappeared almost immediately. And no blood thinners meant no Revlimid, which was coincidentally giving me new fits in terms of tumor flare. (Goodbye, other paddle.) After merely five days of 5 mg, the minimal dose Celgene makes and well below that considered optimal in trials, I looked freakishly flarish (see second-to-last photo in my last post).
I had always had a tumor flare reaction with Revlimid, which is actually a sign that the drug is working, but never anything like this.
It felt like a Vise-Grip was closing around my neck from the back, leaving just a bit of my Adam's Apple free, and making it hard to open my mouth very far. It was at this point that the abscess formed, although it took another week, during which steroids brought down all the flare but the abscess, before I ended up in the ER and the diagnosis was made.
During the December Drain Festival, I could not treat the CLL because of the wounded node. Now that it has been removed, and the node is healing -- the ENT doc says to give it at least two weeks -- treatment is back on the table.
I am looking into a couple of clinical trials, as well as into a treatment to keep me going in the interim. One thing I have learned about trials, of course, is that Things Take Time. Another thing I have learned is that the study drug may be free, but all other expenses, from administering the drugs to CT-scans to the cost of the drug that the study drug is being tested with, are usually out-of-pocket. Unless covered by insurance (insert guffaw here).
The treatment I may do soon is R+HDMP, or perhaps Arzerra plus HDMP, which is a whole 'nother can of worms.
I've been stymied at every turn by my increasingly stingy health insurance plan, which covers fewer and fewer doctors -- including treatment in the office of my own oncologist -- and fewer and fewer drugs. Clinical trial expenses, forget it. And while Arzerra may have FDA approval for CLL, to borrow a phrase from a popular viral video, honey badger don't care.
It's gotten so bad that I've found myself flirting with the idea of dropping coverage for six months so that I can get on the new federal Pre-Existing Condition Insurance Plan. I know, this is probably a bad idea, especially since my little hospital getaway (two fun-filled nights and three fun-filled days) came to more than $10,000, of which I will end up paying no more than a third thanks to my insurance, bad as it is
(I am so looking forward to 2014, when I'll be able to buy decent insurance under the new health care law. I have my issues with President Obama, but from where I sit, he deserves a big, wet kiss for Obamacare, imperfect as it is.)
The cherry on the sundae is that there is a fair degree of tumult at my oncologist's office that is also not helping matters.
So let's just say that external forces are not making my little canoe trip an easy one. Shit Creek is hard enough to navigate with a paddle.
But onward I go, mateys, trying not to capsize.
To quote Newt Gingrich (yes, I am quoting Newt Gingrich):
Perseverance is the hard work you do after you get tired of doing the hard work you already did.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
1 week ago