Quite a lot’s happened since my last update which, in a way, is why I haven’t had an update recently.
First of all, I learned WordPress at Lynda.com, where I do most of my online learning these days (actually, for the past several years), and decided to move all my old journal entries and Blogger posts over to a brand spankin’ new WordPress site (this one you’re reading). I bought a new domain name for it, MediBuck.net, and set it up on a new server at BlueHost.com. Then I spent several weeks copying my 60 original old journal entries to it, then importing my 72 Blogger posts into it, so that it’s all here in one spot. So, with all that going on, I just sort of wanted to stop blogging until I’d completed the task, so I wouldn’t have some posts in transition or something. Anyway, that’s all done now, so back to updates again.
On the medical front, a lot’s happened here as well.
First, the giant golf ball sized polyp discovered and removed during the colonoscopy wasn’t actually a polyp. It was a growth associated with my cancer, per the lab report that came back after doing a biopsy on it.
That seemed to indicate that my recently achieved remission was very short-lived indeed, and prompted my oncologist to contact the doctors down at Karmanos, where I’d gotten the stem cell transplant in December. They had a discussion about it all and what to do next, and felt that I would be a good candidate to take part in a clinical trial for a new drug that’s not yet been approved by the FDA, but that shows great promise so far for certain blood-based cancers, like mine.
Getting admitted as a candidate into the study took some doing. As an experimental drug not yet approved by the FDA, everyone involved, from patients to doctors to support staff, needs to jump through some hoops to make it happen. Lots of blood was drawn and I had a fresh new PET Scan down at Children’s Hospital in Detroit, which is part of the medical complex where Karmanos is. There was a lot of paper work to be initialed and signed in front of witnesses, then more blood draws, physical exams, and so forth.
Along the way, the PET scan showed that my cancer wasn’t running rampant, as was feared from the giant lump removed from my ass, which was great news. In fact, it’s not showing its ugly head at all, though it’s obviously still in my blood (no cure, as you’ll recall). That means that technically, I’m still in remission. (WOOT!!)
We’ll assess the actual situation in a couple / few months with another bone marrow biopsy. I think that’ll be my 5th or 6th of those over the years, but you never really get used to them.
The whole process from, “maybe let’s try this new drug” to “you’ve been approved as a candidate” was about 2 months, having started just a couple days after my colonoscopy on May 21st, and finalizing paperwork and getting the actual drug yesterday, July 23rd. According to the paperwork, I’m one of only about 5 or 6 in the study at Karmanos, and only about 250 in the entire United States.
Here are a couple of photos of it:
- 12:30 PM – EAT NOW!!
- 1:00 PM – STOP EATING – NOW!!!
- 3:30 PM – Take 4 Ibrutinib capsules
- 4:00 PM – You can eat again now
The plan now is for me to take these every day until I decide (for some inexplicable reason I can’t even fathom at this time – perhaps some bad side effects or something) to quit taking them OR it’s shown that they don’t work for me. I guess it’s sort of like how folks with high blood pressure take their daily meds to keep their high blood pressure under control, this will hopefully keep my cancer under control.
For how long? Who knows? It’s still in its infancy as a drug, so nobody knows yet. Experimental, cutting edge, pre-FDA approved. Yeah baby, that’s me!! To boldly go where no man has gone before!! Go science!!!!
Seriously though, it’s pretty amazing to think about: If I’d gotten the crap kicked out of me by my cancer 10 or 20 years earlier, it probably would have killed me pretty quickly, especially in as bad a shape as it had me in when they discovered it. But by the time I was diagnosed in 2001, chemotherapy treatments had come a long way, and there was this new stuff called Rituxan that had just been approved by the FDA, and it worked great. Between that and modern chemotherapy, I got a couple years worth of remission. In that time, chemo and Rituxan therapies improved some, and when my first remission ended in 2004, a new round of treatments put me into a new remission that lasted several years, until 2012. In that time, we got stem cell transplants, which I had in December, and now this new anti-cancer drug that’s as easy as taking a few pills per day.
And here I am, in another remission. With every day that I survive, science takes another giant step toward making it possible for me and others like me to have a better chance to live indefinitely with an incurable cancer that was a guaranteed killer not too long ago. If this keeps up, they may even find a real cure for it in my lifetime and eradicate it altogether, so future generations won’t even have to deal with it at all.