Delinquent. Yes, that’s me. It’s been over a year since I posted anything to my blog, after a decade of diligent writing which I enjoyed. Something took the starch out of me. Maybe it was more than one thing. Maybe it was a host of things. Tonight, I am determined to write something even if I have nothing to say.
I previously wrote about a temporary reprieve. My White Blood Cell count took an unexpected and welcome dip last year. As I suspected, well, more than suspected, it was a fluke. A month later it was back up even further, and I started planning treatment for my CLL on a novel drug called acalabrutinib, or Calquence, if you prefer. I am in the seventh month of taking this drug. I was apprehensive about taking it, but it has been kind to me, with my blood numbers all returning to near normal. They haven’t quite gotten to normal and seem to be hovering in the slightly high category. Hemosapien says I have hit a plateau. Plateaus can be temporary, permanent, or a sign that my numbers will start headed north again, an indication that the Calquence may be losing its effectiveness for me. I won’t worry about it now, because if I knew now which one of those things it was, I wouldn’t be doing anything different. Hemosapien has taught me that.
“What would we do different if we knew?” he has asked me on more than one occasion after I had read of some test, usually expensive, that may give he and I some indication of something we did not know. He’s always been right about that. He’s a good doctor. I’ve taught him a lot since I got him fresh out of his residency, but in the last twelve years, he’s learned much, being able to persuade the staunchest cynic, critic, and know-it-all like me. I’m lucky to have him.
I retired from work almost three years ago now. I kept my original insurance under COBRA until that exhausted eighteen months after my retirement. Under the HIPPA rules, exhaustion of COBRA benefits, being what is termed a “significant life event”, I was able to acquire individual health insurance without any pre-existing condition limitations, though it has been extremely expensive at $1,400 per month. Everyone who buys individual health insurance on the open market knows this painful truth. Fortunately, I had planned for this and am thankful I was able to get any insurance at all. The Blue Cross Blue Shield insurance I have turned out to be really good, and my very expensive Calquence at $12,740.00 per month has been nearly all covered, and what was not, Hemosapien helped me to get on a program from the Leukemia and Lymphoma Foundation. In July, my Medicare starts, for which I am thankful, but it looks like the Calquence will only partly be covered on any program under Part D, which is the part of Medicare covers prescription drugs. They have another category for cancer, chemotherapy, and immunotherapy drugs, but I am not yet sure how this works. I do know this: you need a law degree, an accounting degree, and advanced training in economics to understand everything you need to about Medicare. It certainly is complicated. Maybe it’s complicated because those who write such programs all have law degrees, accounting degrees, and advanced training in economics. Don’t mind me. I already told you I was a cynical skeptic know-it-all. In spite of that, I am in a period of befuddlement, a plateau, as it were. Double plateaued I seem to be.
One thing about my Blue Cross policy is that Big-as Texas Cancer Center is not available to me. I am still able to go there whenever I can, or want to, because once a patient, always a patient, but I’ gonna avoid an out-of-network medical facility if I can. Before I started the Calquence, I called Dr. GoodayII, leaving several messages for him. Of course, his nurse called me back. When I asked her the things that were on my mind, she said I would need to speak with GoodayII. I already knew that, which is why I asked for him. Just a few minutes later and much to my surprise he called me. I told him that my WBC doubling time was less than six months, that I had other symptoms of progressing CLL, and that Hemosapien thought I needed to be treated. He agreed.
“How would you treat me at this time?” I asked him.
“Either Ibrutinib or Acalabrutinib (Calquence) will work fine with your particular circumstances, since they both work by similar mechanisms, but Acalabrutinib promises fewer side effects, particularly far fewer instances of the development of atrial fibrillation which is serious enough to make a patient have to terminate treatment.” I already knew that, but it was good to hear him say it. He continued, “You are not the first patient who had to postpone coming here because of a change in insurance. We deal with this all the time.
“There are also other treatments: Venetoclax, Ofatumumab, Obinutuzumab, alone or in combination with other immunotherapy agents like Rituximab, but it would be good for you to keep them in reserve, just in case. Ibrutinib and Acalabrutinib show the best promise with the least complications, and generally do not precipitate events that could close the door on some of the other treatments mentioned. If your insurance will accept it, go for the Acalabrutinib, but sometimes it’s hard to get insurers to bite on Acalabrutinib.”
“Thanks,” I said.
“Sure. That’s what we’re here for. Come back and see us when your Medicare starts,” he said cheerily in his Australian accent. When the Melbourne born Dr. Gooday retired, he made sure his excellent replacement was also a Melbourner. I wonder if he likes a big frosted mug of Fosters as much as I do? I’ll ask him one day.
Now here is something interesting. When I first got treated, I received my initial chemo/immuno course at Big-as-Texas Cancer Center. It was the then new and state of the art treatment called FCR (Fludarabine/Cyclophosphamide/Rituximab). They had never given this treatment in Meridian. I brought it back with me from Texas as the balance of my six months of chemo/immuno infusions were done by Hemosapien here at home. It became the standard treatment for CLL for many years and was very effective for me, giving me five years in a complete remission, and seven more years of a slowly growing cancer before I needed further treatment. Many people in Meridian benefited from FCR, which had not been available to them until I brought it back. Of course, Hemosapien’s clinic would have eventually started using FCR, but they did it sooner rather than later because of the conversations Hemosapien had with Gooday in reference to my treatment.
You might be asking yourself, “If FCR was so effective, why not use the same treatment again?” That would be an excellent question. There is an excellent answer. FCR is still used, but only with patients with a particular set of genetic markers. My genetic markers, under current knowledge, is that I should never take FCR since it can lead to some pretty dark outcomes, such as the transformation of my CLL into something called Richter’s, which is a very aggressive lymphoma. There are other darknesses, too. Yet, I was treated with FCR, which places me in a higher risk category for darker things. So far I have been walking in the light. I’ll keep the light, please. FCR did me good, but I can’t do it again.
Deja Vu, chapter two
“I want to be treated with Calquence (acalabrutinib),” I said to Hemosapien.
“Our clinic has never used that, so I am not familiar with it,” he said. “We’ve had good results with Ibrutinib.”
And this is how that happens. Hemosapien and all the other oncologists and hematologists are all pretty busy people at their excellent cancer clinic in Meridian, Mississippi. They do not because they cannot keep up with all the new and rapidly changing treatment landscapes in the dozens and dozens of different cancers they see in their office every day, much less the rare cancers they hardly ever see, having only heard about or seen them in class as a student. If they have good results with a certain treatment regimen, they are reluctant to take the time to learn and get comfortable with a new treatment that is strange to their practice. They can never keep pace with a Big-as-Texas Cancer Center, arguably the top research facility and the most advance cancer treatment center in the world. They can’t be expected to be that. They are what they are, which is an excellent cancer treatment center in a small city.
“You need to a study up, then,” I replied to Hemosapien, “and we’ll see if acalabrutinib can become another effective treatment for your patients,.” He smiled and nodded his head. So, for the second time, I instigated something new for cancer treatment in Meridian. I haven’t asked him, but I’ll bet Hemosapien has a patient or two on Ibrutinib that had developed atrial fibrillation, which is a serious heart condition, and it seems rather pointless to successfully treat the cancer only to have a patient’s atrial fibrillation kill him. Diseases and their treatment is a dangerous business; you might want to avoid them if you can.
It took a month to get me set up with the very reluctant Blue Cross of Mississippi for me to be able to obtain this very expensive drug. In that month, Hemosapien studied up. I knew he would. He does not really want me to think I have gotten ahead of him, which, of course is not only not likely, but not possible. He likes for me to think that I am pretty good at this stuff though, ’cause he knows I’ll like it if he thinks that. And I will. It’s sort of like every time I beat my granddaddy at checkers.
So, nearly seven months ago, I started this Calquence journey. It has not always been easy since there are side effects, some of them unpleasant, some of them dangerous. So far, I have been visited only by the unpleasant ones. I can live with that. Of course I can live with that. Unpleasantness is better than blood gone too bad, which is far more dangerous, even lethal.
I’m glad to be here and thankful for all the medical professional resources available to me, every one of whom want me to have a happy, healthy life. I salute them all.
Being an oncologist is a hard job. I do not envy them: rather, they have my admiration.
I don’t know where the plateau will find me next month. Next month is next month.
“I’ll think about that tomorrow,” said Scarlett.
She might have been on to something.
10 thoughts on “4/6/22 Delinquent”
Sending you so much love. Beautiful writing, dear one. You and yours are in my heart, always. xxx Deb
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Heart swelling here!! I hope you and yours are enjoying Portland. Sending heaps of love back
All good to hear! Enjoyed the read Dr. Sharp…✌🏼
Glad to hear that you and Hemosapien are fighters and that you have the vast intelligence able to talk to your doctors on their level. You have certainly learned a lot in the past decade. These articles on your blog are something my retired physician Brother-In-Law loves to read as well. Stay well Brother…let’s have a guitar pull here soon!
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Always enjoy what you say……even when you have nothing to say! You have a way with a phrase. Keep up the good fight Chris and we will add you to our prayers.
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Thank you for reading, and your kind words.
If I’m not mistaken Fludarabine can burn the bone marrow. That’s why I didn’t take it for my second chemo.
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I have been so impressed with your fighting CLL…….of course the alternative is worse. Have always enjoyed your writing and picking and you were on my mind recently as I have withdrawn from social media ao I cant see your Fakebook posts. I know you are an inspiration to cancer patients who are starting their fight. Prayers will continue!
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