I started the BATCC clinical trial on ruxolitinib on June 17, 2016. It was a two year trial designed test the effectiveness of ruxolitinib on alleviating the symptoms of CLL (fatigue, bone pain, joint pain, and others) by targeting cells that carried the JAK-7 enzyme, which produces inflammation. Inflammation is the source of many diseases and maladies, and even though a CLL patient’s blood numbers may be good, he may still present with many symptoms.

Ruxolitinib was never designed to address the root of the disease, but to see if it would improve the quality of life for CLL patients. It certainly did for me. I thought I had been on the drug for three years, but, being a blogger and a constant journal writer, I was able to refer back and confirm that my memory is not as reliable as my writing. I was on the trial for two years and five months. Even though the trial ended after two years, I was asked if I would remain on the drug until such time as it was decided I needed to stop due to toxicity, or it becoming ineffective, or the manufacturer stopped furnishing it, as it is rather expensive…prohibitively so.

About two months ago, I noticed that the drug was not as effective as it had been, and last month, my fatigue had returned with a vengeance, perhaps coinciding with a WBC and ALC count that was beginning to accelerate as the CLL began to shift into a higher gear. Whatever the reason, I was sleeping all the time. Every day gave me three to four hours of energy, then I would crash and burn (my brother and I call this ‘tripped out on under-frequency’ to put it in substation jargon).

I went back and reviewed my notes. Prior to starting the trial, we had built an electrical substation for Northcentral Electric Power Association in Byhalia, Mississippi, just outside of Memphis. This substation was called North Marshall. My fatigue levels were so high then that by the end of the day, I was unable to safely drive myself the ten miles to the motel in Olive Branch. Thank goodness Canaan was with me. I drove in the mornings and would retreat to my office trailer in the afternoons when my under-frequency relay kicked in, taking me off line.

After I started taking the ruxolitinib, we built a second substation for Northcentral, just a few miles away from North Marshall, called East Cox. The difference in how I felt on those two jobs was remarkable. In addition to East Cox, we had another new substation project going on in Como, Mississippi, for Tallahatchie Valley Electric Power Association. I’ll admit that I was exhausted at the end of every day, but no more exhausted than any 60 year old who has put in a long day of sometimes very strenuous work in what inevitably was blistering hot or extremely cold weather, as in Mississippi we only have two seasons….ten months of hot, humid summer and two months of cold, humid winter. Spring and Fall, if one can call them that, last about five to fifteen days, with fifteen if you’re lucky. Along with that, it is raining a significant amount of the time. World War I mud has nothing on an electrical substation project when you are still installing the huge quantity of underground facilities.

I don’t think I could have kept up the pace without having been on the trial.

When the effectiveness waned, it did so quickly, and they decided to take me off the drug. Gooday and Nurse Sarah gave me a schedule to titrate down off the drug, but I wound up not following it. The schedule was too quick. Once I had titrated down to half the dosage I was taking, I felt as bad as I ever felt in my life, so I slowed down coming off it, taking about twice as long as they had scheduled. I have plenty of the medicine left and will return what I did not use, but I am glad I had it. I was beside myself in feeling bad. There is no real way to describe it, but I’ll try by saying that every symptom the ruxolitinib had suppressed for two years and five months seemed to return with compounded interest on the Saturday following my Thursday, November 1 visit to Houston. If someone had shot me, I reckon I would not have considered it a bad thing.

I am feeling somewhat better now. I took my last 5mg tablet this morning. I am weaned off the ruxolitinib now, after having take four 5mg tablets twice a day (40mg) ever since a month in on the trial. Some drugs you just can’t get off of quickly. I read some articles about others who experienced similar misery when coming off the drug, so I am not alone.

I am thankful for what the ruxolitinib did for me. I wish it was still effective, and it would likely be were it not for my own cancer. None of the drugs (so far!) remain effective forever.

So, while I am not my one-year in on the ruxolitinib trial self, I am not my pre-ruxolitinib trial self either, nor am I my pre-cancer self. I am the self I am at this minute, which is easily fatigued, skin that itches and burns beyond measure (akin to a small forest fire), bone pain, joint pain, a return of my psoriasis and symptoms of psoriatic arthritis.

One of the things CLL delights in doing to those who have it is present them with a host of auto-immune diseases that had never before manifested. My particular one so far is psoriasis and its more evil sibling, psoriatic arthritis. I  simply woke up one day and I had it. My friend and dermatologist, Frank in Memphis, treated me for the the psoriasis with methotrexate (a chemotherapy drug) and a variety of topical steroids. I was not able to take any of the biological drugs for psoriasis (Enbrel, Humira) because they were remarkably close in formulation to immunotherapy drugs I had taken, or might need to take for the CLL. Since there was a possibility of developing lymphoma from the psoriasis-fighting biological drugs, and I am already at higher risk, I could not take them.

But the very same day I completed my first dosage of the ruxolitinib, the psoriasis vanished. Presto! It was gone. Well, it’s not gone any more.

And where do these headaches come from? Any my sinuses! The common Southern malady, the sinus, has overtaken me after a long absence wherein I did not even realize it had been gone until it returned. The anti-inflammation properties of the ruxolitinib are impressive.

Having gotten off it, I have decided that it was not completely ineffective after all.

Regardless, increasing WBC and ALC mean that I am heading for treatment very soon. I am hoping to get on another trial that features the drug BGB-3111. Unfortunately, the trial is closed at this time, but Nurse Alice said a slot may likely come open after the first of the year. Ibrutinib is likely the drug I will be treated with if I don’t get on the trial. BGB-3111 is a BTK inhibitor (BTK is another inflammation causing enzyme that appears on the surface of the CLL cells) and is thought to be as effective as Ibrutinib with less toxicity because it is a more targeted therapy.

Ibrutinib has been very effective for many CLL patients, but it is not a drug that you take for a while and then quit. One keeps on taking it until it becomes ineffective at controlling the CLL or it becomes so toxic that one can no longer take it. Hemolytic anemnia and thrombo-cytopenia are undesirable potential side effects of ibrutinib that could kill the patient faster than the CLL.

There are no easy choices; there are only informed choices.

Everything has risks, including the risks of doing and not doing. As I have indicated before, life can be downright dangerous, fraught with peril at every turn. We must all make the best of it and do so at every opportunity.

I am thankful for the ruxolitinib, and for the better than two years it gave me at being my nearly normal self. I regret that it became ineffective, but it may perhaps be more accurate to say that my real regret is that my CLL became more obstreperous. The ruxolitinib did not change one bit. It was my disease that changed.

What’s next? I’ll take two more years of feeling good, if I can get it, then worry about next next when the next next gets here.

We’ll see for the CLL and its treatment. Gooday and Hemosaien are keeping their eye on me. I am past watch and wait now, though we are still watching and waiting just the same, with more waiting than watching. I expect I’ll be on some treatment form by February and am certain it won’t be with the fludarabine, cyclophosphamide, and rituximab (FCR) I was treated with the first time. Even though it produced a five year remission, there are too many risks to use it a second time. I’m pulling for the BGB-3111 trial. You can pull with me if you’d like. I’d appreciate that.

Meanwhile…Thanksgiving and Christmas are next for sure. And the “Tunes for Tyler” benefit show is this weekend. My wife will work me like a rented mule. For that, I will use the Ritalin that BATCC prescribed for me just for such times as when the fatigue interferes with the tasks at hand, which this weekend is playing music…lots of it.

Keep your fingers crossed for a big turnout for the show. Y’all come! It’ll be a good one.

©2018 Mississippi Chris Sharp

PS: Thank you Dr. Gooday, Nurse Alice, Nurse Coy, Nurse Sarah, and Dr. Zeev (who headed up this trial) and all of BATCC for the excellent care and service you provide for all your patients. I’d do this trial again if I could. I was glad to be participating in something that may be of use to other CLL patients. And if anything I posted here is an egregious error, please let me know and I will correct it, or post your correction.

Everyone should follow the advice of their physicians: They’d rather see pictures of you smiling with your children and grandchildren than read your obituary…you can count on that!