Well, actually, that should be abdominal lymph node. Or perhaps deep pelvic lymph node from hell. Wherever it is, it is starting to really annoy me.
I first noticed the Abominable Lymph Node (ALN) in February 2005. I was laying on the sofa reading a nonfiction book, 50 Acres and a Poodle, about a woman who says goodbye to city life and moves to a Green Acres-type place. Her boyfriend develops a strange pain in his abdomen, which turns out to be a tumor on the intestine.
The ALN was then only noticeable when I lay flat on my back; there was just a slight sensation of pressure near my left hip, nothing painful. If I lay on my side, or stood up, or sat in a chair, I did not notice it. Still, it was a new sensation, not unlike the new sensation the boyfriend in the book had begun to notice. And it definitely wasn’t normal.
“Oh, it’s probably just a lymph node,” I told myself as I read each page with increasing interest, my growing paranoia kept barely in check.
I convinced myself to get a CT scan just in case I was being blindsided by another health misfortune. After all, chronic lymphocytic leukemia had come as a complete surprise and I had no way of knowing if Pandora’s Box was still open, letting all sorts of nasty things out.
It turns out there was a happy ending to the book. The boyfriend’s tumor was benign. And there was a reasonably happy ending for me, too: it was just a node. I was about to start my second course of Rituxan therapy and I expected it to take care of the problem.
But four rounds of Rituxan later, the ALN was still there, though it had hardly earned its name at that point. As time went on I got used to it. The pressure increased almost imperceptibly. When I started eight rounds of Rituxan in October 2005, I hoped that might take care of it. No such luck.
During the early part of this year, the ALN grew from a minor sensation to a slight bother. I would notice it when sleeping on my right side, and when sitting. When Marilyn and I drove to Columbus, Ohio to see Dr. John Byrd, it was there -- not especially troublesome but present nonetheless. I asked Byrd about it, and he stuck his hand into the flesh next to my left hip and said, matter-of-factly and without any concern, “Yes, you have some deep pelvic lymph nodes.”
I asked Byrd whether I needed CT scans to monitor those and other nodes, and he said it wasn’t necessary. If, for example, a node were pressing on a kidney and becoming a problem, it would show up in the creatinine numbers on a chem panel.
My chem panels before and since have been marvels of normalcy. Whatever the ALN is pressing on, it apparently isn’t all that important. But it is noticeable, and during the last week or so it has entered the realm of chronic pain. Not horrible nerve-shooting-down-the-leg pain, which I have heard about in CLL. Just pressing and pressing and pressing, noticeable no matter where I sit, stand, or lay. I am not sure what water torture is like, but this could be similar. For the first time this past week I couldn’t sleep because of the pain and had to take an ibuprofen.
Now I realize that in the grand scheme of chronic pain this is nothing. It is not interfering with my life and daily business, just making things more uncomfortable. I rather enjoy ibuprofen and that will work for awhile, I suppose, but it is not a solution. Neither is asking my doctor for percocet or oxycontin. I can enjoy a few hours of spaciness as much as anyone, but it is not a way to live one’s life. I suppose there is acupuncture, or perhaps hypnosis, but these are, again, temporary solutions to a problem that will only get worse.
So the ALN has done what I have been expecting one of these days to happen: it is the symptom that heralds the end of watch and wait. The ALN is the other shoe that finally dropped. Nodes, abominable and otherwise, appear to be my major symptom. My hemoglobin and platelets are still well within normal with no downward trend, meaning that marrow impaction is not an issue. (In fact, my latest CBC shows platelets going up.) I still have no B symptoms. Just a very thick neck (to match my thick skull) and a rather distended abdomen.
What is the aim of treatment? To reduce the nodes (and tamp the disease back down again). And to do this as part of my near-term treatment strategy. That strategy, simply put, is to use HuMax-CD20 when it arrives on the market, perhaps in 2008. My goal is to get from here to there, and then to use HuMax for as long as I can. Burn no bridges, play for time, the same old song, now with rhyme!
I meet with my local hem/onc later this month to formulate a treatment plan. What exactly that is yet, I don’t know. But it will involve Rituxan and very likely something else. The Abominable Lymph Node has got to go.
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