So remember , like, a month ago, when I wrote a blog entry about novelty? About how nothing about my cancer was really new anymore, so I had less fuel to write? Yeah, well, about a week later, I got my new. New tumors. New growth in my old tumors. New treatment decisions. New fears. Fucking jinxes.
Here’s what is going down… On Monday, I will be staring on a new clinical trial that requires me to be hospitalized for two separate weeks this summer. The trial is called ALKS-4230, and it uses an updated form of IL-2 therapy. IL-2 (Interleukin 2) is a protein that activates the immune system. It basically tricks your immune system into thinking your body is in sepsis, so it goes into overdrive. Back in the stone age of cancer treatment (before 2011), IL-2 was one of the few alternatives to chemotherapy for melanoma patients. It had a very low response rate (I believe 7%) and was very toxic.
Apparently this updated version of IL-2 is less toxic; the reason I will be inpatient for the first two rounds of treatment is so that they can monitor me very closely and treat any side effects as they crop up. This is the first phase one trial I’ve been on… the drugs I was on in the past had already been proven for safety, and I was in the group on which they were testing for efficacy. The drugs I’m about to go on – and this is where it gets fun – have only been tested in animals thus far. Actually, that’s not true… I’m in the 4th human cohort. Each cohort is given a certain dose of the drug, and if people tolerate it, a new group is recruited and the dose is increased. So I’m pretty much a guinea pig, which I’m perfectly fine with for two reasons.
Reason one. I’ve exhausted most of my options. Sorry, I know it sounds bleak, but it’s the truth. I’ve done immunotherapy twice, two different targeted therapy combos, tumor bombs. They all worked for a brief period, until my cancer stopped responding. I guess maybe because I’m a smart girl, my cancer is smart, too. We do have a back-up plan – another clinical trial that’s about to begin – in case this doesn’t work. But we’re not going to think about that now, because we going to focus our power of positivity on this IL-2 thing working.
This brings me to: Reason two. For every disease that’s ever been cured, someone has been the first one to receive the cure. Why not me? Why not this drug? If we weren’t living during THE renaissance of cancer treatment, this would be an idealistic way to think. But because of the progress that’s being made every day, it’s just optimistic, and possibly realistic. Also, even though there’s not “A CURE” for cancer, there are actually many cures for cancer. Every cancer is unique. A particular therapy acts as a cure for one person, a certain drug combination works for someone else. Maybe my cure already exists. Maybe we just haven’t landed on it yet.
Anywayyyyyyyy, that’s pretty much what I know right now. I got a port placed this week. It’s basically a permanent line placed in the vein in my neck, which is attached to a little plastic disc that they inserted under the skin on my chest. Most people opt for a port because they use it instead of having to find veins in your arm every time you get blood work or an infusion or a scan. I did not want one. I can’t explain why other than just finding it icky. That said, I know it will make next week easier, considering they have to take blood 5X per day for the study.
Last week, I bit the bullet and bought a new computer, as I am going to use the forced confinement to do some writing and editing… if I can. Which, I think, based on what I’ve heard from my oncology team (there’s no data but anecdotally patients are tolerating these drugs pretty well), I should be alert and able to do some creative damage from my hospital room. Speaking of which…
I have decided that I would prefer not to have ANY visitors during my first week of treatment. If you think that this may not apply to you because you are one of my nearest and dearest… sorry, but it does. I am hoping that those close to me will understand and respect this decision – I put a lot of thought into making it. I will post an update very soon, but for the next week, I’d just really like some privacy to deal with both the heavy emotions and physical adjustments of moving into this new chapter.