6/14/16 Clinical Trials and Me

I was asked if I would consider participating in a clinical trial at Big-as-Texas Cancer Center. The trial was then explained to me.

Apparently, there are many people with CLL who do not actually need treatment to get their blood numbers back in order and their bone marrow whipped into shape. I am one of those people at this time. Even though I have been in a failing remission for two years, my blood numbers look remarkably normal. A physician looking at my Complete Blood Count (CBC) would think, “Nothing wrong with this patient,” and toss the CBC aside, looking for something more pressing to treat. He would be right and wrong at the same time if he thought that, but physicians know that a CBC, while vital, does not tell everything there is to know about any patient’s condition.

There are many symptoms that go along with CLL, primarily which are fatigue (extreme), and bone and joint pain, susceptibility to viral, bacterial, and fungal infections, and the accumulation of auto-immune diseases. A whole host of other, secondary maladies can develop due to the compromised immune system the CLL patient has. The fatigue and bone pain I experience are definitely in the “interfere with the quality of life” category. There are many things that can interfere with one’s quality of life, including but not limited to intrusive mothers-in-law, deviant neighbors, IRS audits, transmission failure in your car, a leaking roof, wayward children, etc….Quality of life can vary dramatically from one person to the next, or change as precipitously as the Mississippi summer weather.

I have a remarkably good quality of life, I think. It is not so good as it was, but still better than most folks my age, I think. I think, again. I am not most folks. I am only me. I am the only gauge by which I am prepared to measure. Based on that gauge, I have lost a lot of what I once had, though the well ran rather deep….I think.

Clinical trails are conducted by research hospitals attached to medical schools. The differences in the types of trials can be learned HERE if you don’t already know. I was accepted to be part of the clinical trial known as Administration of Jakafi (Ruxolitinib) for Symptom Control of Patients With Chronic Lymphocytic Leukemia (CLL): Phase II under the government identifier NCT02131584. The Phase II nature of the trial deals with efficacy and long-term safety.

The immunotheraputic drug that will be administered to me, orally, is called ruxolitinib (trade-name JAKAFI®). This drug is already used to alleviate a couple of other blood and bone marrow disorders called myelofibrosis and polycythemia vera. It is not an unknown drug. What is unknown is how it might also help patients with CLL, like me, and maybe you, too.

For the first time, this may be a drug that eliminates the mind-numbing WATCH AND WAIT that seems so counter-intuitive to one who has been told he has a cancer.

This is a lot to write about and I don’t have much time or energy to continue now. The trial begins for me next week. I have to say that I am looking forward to it, and the alleviation of the many symptoms with temperaments like party guests who mistakenly seated themselves at the head table and were told by the host that those seats were not meant for them and moved them far back to the rear of the banquet hall. Jesus had a parable about that. Everyone should read it for their own good. I was asked to participate in this clinical trial and gave my informed consent. I will follow the orders and instructions given to me. I hope, not only for me, but everyone who has CLL, that this trial will turn out to be of great benefit and become a standard of trouble-free treatment.

I am fortunate to have Gooday as one of my physicians. How this came to be so is its own story covered in Volume I of The Chronic Diaries.

Of course, I will keep you posted, and hopefully somewhat amused. If my writing is uninteresting, depressing, or even un-amusing, I can’t keep you here very long. I enjoy this forum and hope you get some pleasure out of it, too. After all, I am an entertainer. <GRIN>

©2016 Mississippi Chris Sharp

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