Where’s the “Easy” Button?

The good news is I will get my sense of taste back and lose the worst case of cotton mouth I have ever had. Which brings me to the bad news. I had such high hopes for the immunotherapy and for PD-1. It seemed to work well against so many kinds of cancers. Except mine, I guess. Again, I find myself on the curb, waiting for another Clinical Trial Uber.
Truthfully, I’ve had a bad feeling about this for a couple of weeks. I felt ok, but just noticed a little erosion of hope in myself. I almost mentioned it to Patrick, but didn’t want to bring bad karma on myself in case I was imagining things. I wasn’t (I rarely am). I had the same Feeling of Doom before my breast cancer diagnosis and my Thymic cancer recurrence. Cancer ESP. I’m going to put that on my next resume.
This time, I wasn’t just excused from the table. Dr Giaccone said that if the Keytruda made me feel any better, I could stay on. It was somewhat tempting to stay in something I know, but the answer was no. I didn’t feel bad going in to the trial in August, and I still don’t feel bad. (Except for this nasty cold I have. I suppose if my immune system was really being boosted, I wouldn’t get a cold???? Somewhere, a scientist is rolling his eyes at my logic.) Plus, the drug’s not working. My biggest tumor is half a centimeter bigger.
I asked if Dr G thought the Keytruda had slowed growth at all, and he doesn’t think so. The tumors are just ignoring the hottest new cancer fighting treatment on the planet. There’s another PD-1 drug out there, but Dr G says if Pembrozilumab (Keytruda) didn’t work, the other one probably wouldn’t either. Dang. And I just learned how to say and spell it. But off the trial I go.
And here I am again, on the curb without a ride.
But, I may have wheels coming. Dr G is running another trial for patients with recurrent Thymic Carcinoma. (Whaat?) It’s for a targeted therapy drug called Milciclib maleate. Here’s my version of how it works: Cancer cells have a lot of proteins that make enzymes called CDKs abnormally active. That activity makes cancer cells grow rapidly. Milciclib blocks CDKs, theoretically (and hopefully in real life, too), killing cancer cells. It also blocks a protein that may stimulate cancer cell growth. A potential two-fer.
Dr Giaccone says it’s not as dramatic or effective as Sutent; in fact, it only works for about 10 percent of people in the trial. Dr G says some patients are stable for “a long time,” but that’s a relative phrase, as I’ve learned. In the clinicaltrials.gov website, the trial description says researchers hope to stop tumor growth for three months… Which may seem like a long time in the lab… Not so much in the Moose Lodge in Park City.
I asked if now is the time to throw myself on the mercy of my insurance company and Pfizer and try to get Sutent off-label, but Dr G says not yet. So I am flying back to DC on Monday to see if I qualify for this trial. If I get in, I can start immediately. It’s a pill I’ll take for 7 days on, 7 days off. I’d have to fly back to Georgetown every two weeks instead of every three.
I may not be approaching this right (Dr G will tell me. Now I know he reads this. 🙂 ), but I’m thinking of this as kind of a place holder, until I can get into/find a trial that makes my doctors more excited.I know there are a couple of possibilities coming down the pike, but with my biggest tumor at 2.8cm, I can’t (and won’t) do nothing til then.
It sure would have been nice if the PD-1 had worked for me, but I guess my path is to keep on exploring. I am game to try and thankful that even though there’s growth, it is slow, which buys me time.

Unbelievable serendipity. Kim was laying over at the exact time I dropped my niece off at BWI.

I was laughing with my friend, Kim, yesterday that we just want to hit that freaking “Easy” button (and have it work). But as someone who’s had to work for pretty much everything, I probably wouldn’t even be offered it. Or I’d see it, park in front of it, stay for 5 minutes and get a $100 fine for parking on the street during rush hour. Yup. That happened in real life. Waiting for the “Easy” button. Waiting for my next Uber. Rock on.

Here it is, Kim.