Off and on

As a newbie, CLL was the center of my universe. As time has gone on, it has become more like the chronic condition that it is -– albeit a chronic condition with a potentially deadly bite. My focus, by both choice and necessity, has gone elsewhere. I have a business to run, a family to attend to.

Other questions, big and small, tend to take over my day. What is a tambour door? Should I put the old treadmill on Craigslist or Freecycle? Why do the doves always build their nest in the windiest corner of the front porch, from which their nest will be blown away?

Of late, my time and energy has gone toward a more serious and sad situation. My older half-brother, who lives about three hours away, has had a severe, debilitating ischemic stroke. He’s been in the hospital for several weeks. At first it wasn’t clear that he would survive. But he has emerged with his faculties intact, as well as some movement on his right side. At best, he faces the prospect of a long and difficult recovery.

He’s 66, eleven years older than I am, and his current condition has shaken the frame of reference I formed as a child. He was always taller, stronger (he was in the Marines), and more world-wise. Now, in dealing with family issues and the health care system -– all the details, from the mundane to the deeply emotional, things that CLL has prepared me for -– our roles are reversed.  

This is not his first stroke, and our mother died at 57 of a pulmonary embolism and had a history of phlebitis. I don’t respond to the blood thinner warfarin (Coumadin) at 2 mg and 4 mg doses. Apparently clotting issues run in the family. 

Which brings us back to Revlimid (lenalidomide), a potential side effect of which is the creation of blood clots. Readers will recall that I have had two TIAs, or transient ischemic attacks (mini-strokes) while on the drug.

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I am acutely aware that I have been allowed the time to deal with all things great and small courtesy of Revlimid. For a year, it stepped in to halt the progress of a fast-moving disease when nothing else would reliably work.

Starting March 15 of this year, I went off Revlimid for three months. One reason was to give my body a rest, in part because clotting issues had arisen. Another was to see how long my remission held without it. And a third was related to my application for a clinical trial involving CAL-101, the node-busting drug that has created a great deal of hope among CLLers with bulky disease, which pretty much describes me.

I may yet get into the trial, if the trial arm is ever organized. It has been “two more weeks” for months now, and even the principal investigator has stopped trying to predict when the drug companies involved will sign off on everything. When the arm is finally organized, I’ll need to be off Revlimid for 28 days before the initial round of testing and evaluation to determine my eligibility.

Meanwhile, I learned during these three months that I probably shouldn’t be off Revlimid for more than about six weeks. The first month was quite encouraging: The nodes continued to get smaller and smaller and I lost weight. The second month involved a brief plateau. During the third the nodes began to come back, steadily and surely.

A month into my “vacation,” which was also a vacation from blood thinners, I had a PT/INR test done. My clotting time came out at baseline, 1.0, which is exactly where it had been when I had been on warfarin. My oncologist has now ordered an extensive clotting panel -– Nurse Dracula took 14 vials of blood -– to determine if there is anything unusual going on. This will help us determine what the best blood-thinning strategy is.

In the meantime, I have started a minimal dose of Revlimid, 5 mg every other day, accompanied by aspirin. After a few doses I’m noticing a fair degree of tumor flare, not as bad as it was when I first began the drug, but definitely pronounced. This will probably last for two to three weeks.

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During all this time my blood tests showed some interesting things.

As expected, my absolute lymphocyte count rose, from 8.6 just before I stopped to 19 two months later, then dropping back to 10.5 just before I resumed. This fallback was probably due to the CLL cells returning to the nodes.

My platelets, which had been increasing before I stopped, quickly fell back to around 130, which is what “normal” has been for me for several years.

My red count remained strong. Hemoglobin was 14.5 just before I quit, 15.1 just before I resumed. This tells me that after three months off the drug, there was no sign of the dreaded autoimmune hemolytic anemia (AIHA), which had plagued me before Revlimid.

So let me repeat here once again what I’ve said in this blog before: I am one anecdotal case but I am pretty solid evidence that Revlimid can have a huge impact on AIHA, even bad cases of it. If you are dealing with this scourge and have begun to run low on traditional options, consider Revlimid!

Finally, there is some bad news in the mix. My B2M had been as high as the 11s while I was on Revlimid. I attributed this to a great deal of ongoing cell-kill as my drug-reinforced immune system did battle with the evil clones. My vacation appears to have substantiated this as the B2M has fallen to a consistent 7.

The bad news is that my baseline B2M is that high. It’s way over the top. In a normal person it should be less than 2.3. In a CLLer it should really be less than 4. So what this tells me is that my disease is still big and aggressive.

And what this means is that Revlimid -– which hopefully will continue to work as it did before -– is going to be a constant and necessary presence in my life, stroke risk and all.

Unless, of course, things work out with CAL-101.

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It's an odd existence. CLL reminds me of handling a rattlesnake. There are people who deal with venemous snakes every day, usually harvesting the venom to use as an antidote to snake bite. These people live with constant danger, and with luck they'll never be bitten. But there's a thin line between living a normal daily existence and something going terribly wrong. My childhood doctor collected snakes as a hobby, and one day his office was closed and he wasn't there anymore.

When I was in first grade we lived in Poston, Arizona, near the Colorado River. It was teeming with wildlife -- mallards, skunks, bobcats, scorpions, and many rattlesnakes. When a rattlesnake got into the house, it was my older brother's job to kill it with a shovel. He would whack off the head and the body would writhe around. I would stand behind him, holding my mother's hand, watching with fascination.

"Don't play with snakes," my mother would constantly remind me. 

Alas, sometimes we have no choice.

I’ll update you in a couple of months. Please accept my apologies for any emails that have gone unanswered. I have had to leave many important things by the wayside to make time to deal with the essential.