Since I last posted, I have failed two more blood tests.. Well, I didn’t fail, more specifically, my white blood cells/Neutrophils failed to show up. I needed an Absolute Neutrophil Count (ANC) of 1200 to start the second Sutent cycle. It was 900 ten days ago, dropped to 800 on Monday and came in at 600 today. Friday the 13th, I might add. Sutent has a long half-life (it stays in your body for a long time), but this is ridiculous. I’ve been off the drug for more than two weeks now.
There are drugs that artificially boost the white blood cells. I actually was on one of them, Neupagen, in 2001 during chemo for breast cancer. Dr Rajan and his team discussed this as a possibility this time, but decided against it. What they did do was lower the required ANC bar to 1000, and propose a lower Sutent dosage for me next time (37.5 vs 50mg). Of course, I have to stay in the trial to take advantage of those lower numbers. I have two more blood draws, one next Friday and the other at the NCI on March 25. 12 days to make my counts.
I am surprisingly not stressed about these latest developments (or LACK of developments). Unlike a year and a half ago, I have options. Now, I am exploring and weighing them. The first option is staying on Sutent, should I be taken out of the protocol (or kicked out of the trial, which Linda, my research nurse HATES me to say). Dr Akerley, here at Huntsman Cancer Center in Salt Lake can prescribe it, then we can fight out payment with my insurance company. When (not “if,” most likely) they refuse to pay, we can start the process of trying to get a compassionate use designation from the drug maker, Pfizer. The glaring problem with this option right now is that we don’t know yet if the Sutent is even working. The CT scan to check that out comes up at the end of the second drug cycle, which I haven’t been able to get on.
Option number two, as I see it, is to get two weeks’ worth of Sutent, even if I have to pay for it out of pocket ($$$$$$), and get a CT scan done. This I can do at the NCI. If the Sutent is working, I have more information. If it’s not, I consider Option Three.
That’s PD-1, the immunotherapy protocol that I originally was stalking. Dr. Giuseppe Giaccone, one of the two researchers at the forefront of Thymic Cancer treatment, just started a PD-1 clinical trial for recurrent Thymic Carcinoma patients at Georgetown University last week. He has room for 10 patients; 2 spots are already taken. I still believe immunotherapy, using your own immune system to stop cancer cells, is the future of cancer treatment. The downside here is that I will pay for travel to and from Georgetown, twice a month for as long as the trial is working. (The NCI covers my travel in the Sutent trial.) That’ll add up, but it’s not prohibitive. Maybe this is what I was saving all my money for for all these years.
I’m disappointed that this isn’t as easy as it could be (never is, for me). But truly, I’m not bummed or stressed or angry or scared. Today, it dawned on me that maybe this trial isn’t the one I’m supposed to be on. Maybe it is. Maybe the Sutent’s not even working. Maybe it is. The beauty of my situation is that I have pretty darn good options and resources to make them a reality. I am blessed to have a bigger picture.
Along those lines, I have gone ahead and signed up to ride Livestrong’s Ride for the Roses for the 15th year. I am riding on Lance’s team this year (everything comes around) and raising money as usual. I also will ride part of Ragbrai with Livestrong (raising money here, too, but haven’t set up my fundraising account. I will amend this posthaste.) And for the first time, I am doing Pelotonia, a fundraising bike ride for cancer research at the James Cancer Center at OSU. This is where my friend, former Livestrong CEO Doug Ulman now works. My team is called Stuart Scott’s Tribe. In addition to all that, I was invited to return to Team Chocolate Milk and will be racing (and by “racing,” I mean “plodding”) the Portland and the LA half marathons. Oh, and I’ve committed to ride as much of Notre Dame Dean Greg Crawford’s cross-country bike ride for the Ara Parseghian Medical Research Foundation as I can.
I don’t have control over what happens (or doesn’t happen) with the biological part of the clinical trials. I DO have control over how I fill the days I have (lots of them, thank you!). Say yes (have you ever TRIED to say no to Doug Ulman or Jeff Mulder??). Live fearlessly.