Recap 4: after first failed chemo

My latest recap post, ‘Recap 3’, ended on events around late December. Things have happened since then, so I would like to pick up on those events and fill you in on what followed. Another note: if you haven’t done so, please go read my other post ‘Rollercoasters’. It should help understand the technical stuff I describe here. Plus, it took me a lot of brainpower to draw parallels between rollercoaster rides and chemo treatments, so go check out my literary prowess! Jk… 😀

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On November 9, I was discharged from the hospital, after a strong dose of chemo has failed to put me into remission. The next option I was offered was an outpatient treatment. I’ll go into a bit of detail here about the treatment, since it will be mentioned later in the post. I would get two drugs. First, I would go into the clinic everyday for 5-10 days to receive ‘Decitabine’ through IV; this takes a few hours and I go home right after. A few days after I start the Decitabine, I would start taking ‘Venetoclax’ orally; I can do this at home. The whole treatment revolves around 28-day cycles, so after 28 days, I would repeat the 5 days of Decitabine, while the Venetoclax is taken continuously throughout the cycle.

This treatment plan sounded pretty good to me at the time. For one, Venetoclax is a fairly new drug and is supposedly quite different in its workings from what I have received before. And two, I heard stories from nurses about patients that have been on treatment for about 50 cycles. That’s 4+ years, which, given my situation, is a lot of time.

Unfortunately, I couldn’t make it through a single cycle. My white blood counts were climbing at a crazy rate. 2 thousand, 8 thousand, 20, 50, 80, 103 thousand in a little over a week… The Decytabine failed to put brakes on the counts, and I didn’t even get a chance to start taking the Venetoclax. When the counts are sky-high like that, and something mild like the Decytabine doesn’t work, what I need again is another round of high-dose chemo to wipe out the counts fast. On Novermber 27, I was yet again admitted into the hospital.

And once more, the chemo failed to put me into remission. After it wiped out the counts and I waited for them to recover, tests again showed cancer cells mixed in with normal white blood cells. This is possibly the one failure that we wanted to avoid the most. The team at Dana Farber was running out of options. They had several clinical trials, but they were either not suitable for my case, or I was not eligible to participate. Another round of high-dose chemo was unfavorable, because I have gone through several rounds already, and the doctors didn’t like the risk of added toxicity for my body.

So we went back to what didn’t work before: the Decitabine + Venetoclax. The reasoning behind this, as far as I understand, was that instead of using those two drugs to bring down the counts from very high levels, this time, we would use them to keep the counts low (they were still at 50 after the strong chemo I’d got) and stabilize the situation. I was discharged from the hospital on January 2 and am still taking the Venetoclax today.

One thing to note is the keyword ‘stabilize’. My oncologist mentioned that the odds of these two drugs putting me into remission are extremely low. So the goal of this treatment is to keep me stable and somewhat healthy for as long as possible. Eventually, when the cancer starts getting out of control, we would transition into palliative care, meaning no direct treatment of cancer, only supportive care to improve my quality of life.

That’s the reality I’m facing now. The only cancer treatment available for me here is not expected to cure me, but only give me time. But things can and do happen against the odds. My latest blood tests showed that the cancer cells are trending down while the overall white counts stay the same. And based on the latest, latest test I had on January 8, there were actually 0% cancer cells in my white count. The overall numbers are still very low, so these changes could just be a fluke. But we’ll take it as good news.