I have been taking the ruxolitinib (Jakafi®) since June 17, which is nearly a month. I have been back to Houston to see Dr. Gooday, once, on July 6, and will return on July 18. This is a powerful drug and a Phase II clinical trial so I have to be monitored closely. Everything was fine on July 6, and I hope it will be fine on July 18. We shall see.
So far, the ruxolitinib has been what I would say is remarkable. In medical terms, remarkable could be good or bad, since anything outside the norm is remarkable. In this case, my case, remarkable is good. I have experienced all of the good and none of the bad thus far. I had the predictable minor side-effects when I started, but they said those would subside as my body grew used to the drug, and they have. But minor side-effects are different than major ones. So far, nothing major.
After side-effects come complications. A complication is not a side-effect. It is much worse. So far, no complications, but they are always out there, hovering, milling about, seeking to cause what mayhem they can at their first opportunity. I will not frustrate the benefits I have seen with the ruxolitinib with worry over something that has not happened yet. I am thankful for what has been given to me.
I have had a couple of positive responses to the drug that were unanticipated. The researchers at BATCC are curious to know why I have had these and others have not, so I’ll have an additional round of tests which will be paid for by Incyte, the big-pharma company that manufactures the Ruxolitinib.
A couple of the symptoms of CLL that completely disappeared within a week of my first taking the ruxolitinib have returned, though on a much smaller scale. Nurse Sarah said they could increase my dosage, but I am content with the much smaller scale of the symptoms since greater dosage means the greater risk of complications. The percentage of improvement on some symptoms is still 100%. The symptoms that have re-manifested have only done so at 20 to 30% of their former levels by my estimation, which is a substantial, remarkable, improvement. So far, what’s not to like?
Well, I don’t particularly like what this is costing me. While the prohibitively expensive drug is being furnished at no cost to me, the testing done to make sure all my metabolic functions are not being impaired are not, nor will my insurance cover them. There are also significant travel costs. My insurance will cover anything (except travel) medically indicated that is connected with the routine management of my CLL and my failed remission, which is still a substantial amount. I have said before that as long as you are worried about your pocketbook and not your necessity to make immediate final arrangements, you are in pretty good shape. If the costs get out of hand, I’ll have to decide whether I want to continue or bail out of the study.
That may be a difficult decision based on the way I am feeling now versus the way I felt just a month ago. It may also be difficult because the ruxolitinib reduces the existing tumor burden, as evidenced by the reduction in size of my formerly swollen lymph nodes, and may be having some effect on the root of the leukemia. While addressing the root of the CLL is not contemplated in the clinical trial, anything that reduces the tumor burden may indeed be having an as-yet undetermined effect on the root of the disease. While unanticipated, it can be hoped for. I can hope that I am the one that allows them to make this connection.
“You can also hope too much,” some might say.
Well, if we can’t hope for things that are not practical, outside the realm of pragmatic, or even realistic, then what is hope for? I’ll admit, though, that in some cases, many people hope for the mundane. I have been one of them. Some hungry people have hoped for a single slice of stale bread. Others have hoped for the slightest drop of water. Some have hoped for a final release. Hope is surely a personal, subjective thing. What shall we hope for, today? I’m gonna hope for a game-winning-two-out-full-count-bottom-of-the-ninth grand slam and a brisk trot around the bases, to be greeted at home plate by cheering teammates and the thunderous applause of those in the stands. Can’t you see it? No?
“You’re setting yourself up for disappointment,” the same some might say.
“You’d rather I set myself up for failure?” I might reply, most definitely with my left eyebrow raised. “The count’s just full…the next pitch will be a strike, a ball, a foul or a hit.” I swear, if it comes anywhere near the plate, I’m taking a full-for-the-fence swing. That’s what Mighty Casey thought, too. Then, there was Joe DiMaggio, Willie Mays, and Mr. October, Reggie Jackson. There was also Lou Gehrig, who said he was the luckiest man ever born as he gave his final farewell to baseball. We don’t have many folks like that anymore, it seems. Maybe we never did. They are vivid in our memories.
If you can dream of it, if you can hope for it, if you can envision it, it can happen. If it doesn’t, or doesn’t happen timely enough, then you can go down swinging, digging with sore knees and bleeding knuckles through the pile of refuse looking for that pony until you’ve gone half-way to China, farther than anyone else thought you could, until you’ve gone as far as your hope can carry you; only then can you fairly allow yourself to resign if you’re of a mind. Every person has his own limits. I cannot address the limits of others, nor do I fully understand my own.
The numbers are the numbers. Where I fit within them is not known. I’m already past the median. Today will be a good day. I hope it will be a good day for everyone. You, too. Especially, you!
There’s a hanging curve ball out there just waiting for you. For me, too. You have to anticipate it to hit it over the fence. You have to envision it coming before it leaves the pitcher’s hand. I think I’ll spit in my hands, knock the dust off my feet with the bat, and step into the batter’s box. Fortunately, I don’t think we’ve even gotten to the seventh inning stretch, yet, nor does it look like rain.
Nor does that look like Mariano Rivera on the mound. I smile at the faceless pitcher. I step into the batter’s box and give him a wink.
©2016 Mississippi Chris Sharp
6 thoughts on “7/13/16 Ruxolitinib, Day 27”
For you, Cousin, there shall always be a ‘pony with a whisk broom!’
The full count “hay-maker” is not for the faint-hearted.
Of course, faint hearts seldom frequent the battery’s box.
Faith sends the final ball deep into the forest beyond any possible perceived obstacle, or man-made barrier; the intimate landing.
Yogi said, “We never loose. The time just runs out.”
There is only one clock, God’s clock.
We can’t hold the hands back, nor force them forward. We are always on God’s clock until we make a promise to someone else, then, we are on the beneficiary’s clock.
We, then, are monitoring more than One Agenda.
We will be in the box, with a full count; a full life; time is relative.
Our “Pitcher” will not deliver “low and outside,” or off-speed….stay in the box…take the “cut!”
(\o/) Love You, Cuz. (\o/)
God bless you and your family, Chris. The Bennetts are praying for you!
Love your attitude and your baseball analogy. I’m in the cheering section behind the dugout. Pat WOLK.
Chris, although we attend the same church, we don’t really know each other. Your writing is beautiful and your healing is in my prayers. I’m sorry the Facebook team is harassing you. I am seriously thinking of leaving Facebook myself
Chris, I am new here. Diagnosed with CLL in 1996 and have done chemo two times.
I believe without hope and faith no treatment will work!
Thanks for letting me hear from you. Glad you’re still here 20 years post-diagnosis. If hope and faith could be synthesized and encapsulated, each dose would be worth far more than this expensive ruxolitinib I am taking. Many blessings to you on your continued journey.