Ninth Verse, Same As The First
“If you
start to take Vienna – take Vienna!!”
Napoleon
Bonaparte – on keeping focused on a goal, applying overwhelming force, and not
getting distracted.
Wow. It's been five months since my last post. Not that there hasn't been a lot going on, but rather a lot of busyness and events, so much that I kind of lost focus on this outreach.
So, this post will be a lot of catching up. Since these notes are certain to get collected together sometime into as yet-to-be-named sequel to Taking Vienna, I really need to catch up. In November, the FDA released the drug Ibrutinib after hugely successful, although quite limited, clinical trials. Rather than being traditional chemo ("poison"), or an immunotherapy, (like the Rituxan I've been taking so long), this one is a, wait for it, a Bruton's Tyrosine Kinase (BTK) inhibitor. I was going to link to the Wikipedia article on this, but the first sentence is:
"Bruton's tyrosine kinase (abbreviated Btk or BTK) is a type of kinase enzyme implicated in the primary immunodeficiency disease X-linked agammaglobulinemia (Bruton's agammaglobulinemia)."
Once you understand this sentence, you may go on to the advanced material. Let's just say that while chemo kills stuff, and immunotherapy tells your body to kill stuff, inhibiting BTK somehow messes with the cancer cells ability to divide, basically making cancer sterile. But I doubt many medical schools use this explanation.
I started Ibrutinib right after Christmas, taking 4 pills daily. I also get Rituxan infusions once a month, in a rather skill based decision by my docs. Meaning there's not a lot (eg none) of clinical data on this combo. I'm one of 6 patients my Moffitt doc is using Iburtinib on, and not all have been successful. As for me, I responded quickly, well ahead of the "norm," for the value of norm where only 111 patients were in the study. The second month I took it, CT scan showed the dastardly invader was in full retreat, almost all lymph nodes back to my "new normal" size. Best of all, not many side effects. Fatigue is the #1, typical side effect. I get pretty tired by the end of the day, usually wanting a nap when I come home from work.
Going back, in my last post I mentioned having a node removed and genetic testing done. It was worth it because it ruled out one of the three treatments I was considering. Unfortunately, it showed my cancer had moved from an indolent (low growth rate) mode into a more aggressive (blastoid) variety, requiring a more aggressive treatment.
But, I'm able to work full time plus; have all my normal family activities, and even have done a race every month since I started it, mostly 5K but I did stretch out and do my first 8K ever. The Rituxan weirds me out a bit, like it always has, messing up my sleep for three or four days. Probably not the actual Rituxan, but as preps I get: IV benadryl making me sleepy, IV dexamethasone steroids to make me wired, anti nausea medicine to make me detached, and a couple of tylenol. So being sleepy wired and detached is a rather 1960's like state of mind.
For those of you keeping score on the cost of cancer, especially the cutting edge stuff I get, Ibrutinib costs $12,000 a month, or about $400 a day. Rituxan is also around $12,000 a pop. Thanks to the concept of shared risk through insurance, I pay a LOT less than that! So if you are thinking about going naked without insurance, keep me in mind. Roughly $1.5M to date. And thanks to all you healthy people out there keeping me alive through premiums. One sign of a civilized society is working together to help everyone, and I hugely appreciate it. I try to repay my debt in many ways, and this blog, along with my role as a "second responder" to new cancer patients is part of that.
A couple of weeks ago, however, I had a little adventure, a deja vu from 2006. I was at work, suddenly started getting chilled. I thought I'd ride it out, then remembered one of Kevin's Top Ten Pieces Of Advice For New Cancer Patients: Be A Hypochondriac! So I went to the cancer center and had blood drawn. By then I was feeling OK again. The Nurse Practitioner came to give me my results, a very unusual procedure. Then she uttered the words that will become another of in my repertoire of cancer stories: "Kevin, I've been a Nurse Practitioner for 25 years, and you are the first patient I've ever had with a blood count of zero."
That's right, campers. Nil, nada, zip, zed, bupkes. Not one stinking white cell floating around anywhere. Which, in layman's terms, sucks like a shop vac. It means you have no ability to fight infection. And, since I had a fever, they were a bit worried. Go to the ER, do not pass go, etc. I spent four fun filled days in the Parrish Hilton in isolation, feeling great and getting lots of visits from masked family and friends, ordering from room service (truly great burgers, legendary bad pasta). After a few days of neupogen shots, things came around, and I went home.
All told, this regime seems to be working. Doc says it should be good for 12-18 months, then we see what's next.
Oh, the title of this posting? Well, one day I was sitting around being legally and expensively zonked, and I counted up my treatments. It's been a ride, I'll say that. Nine years, nine major treatments. Just for fun, and posterity, I'll list them.
2005-2007
CHOP-R (chemo & immunotherapy)
Zevalyn (radioactive immunotherapy)
Autologous bone marrow transplant (chemo)
Rituxan
2012-present
Bendamustine/Rituxan (sort of chemo & immunotherapy)
Rituxan
Prednisone (steroid therapy)
Radiation
Ibrutinib/Rituxan (BTK inhibitor & immunotherapy)
I realize I have done this list before, but counting blessings needs to be done often. Over those nine years, looking into a three year prognosis, I've seen one daughter married to a great man & have our first grandchild, as well as graduate college and go into grad school; one son graduate high school and college; my other daughter graduate high school and well into college, engage to another great man, and I was there to help my wife take care of her when she was horribly injured in an accident; our other son graduate from high school; celebrate our 25th anniversary; and in a couple of weeks, our 30th. I've changed jobs a couple of times, each better than the last. Enjoyed time with family and friends, grown and learned and helped others, and it's been worth every infusion, pill, and surgery.
I encourage you to read one other post, The Most Important Thing I've Ever Written.
Thanks for reading!
KB
