I’m not quite sure why baseball analogies keep coming in to my brain as I run these clinical trial bases, but to quote Shaq and every other athlete on SportsCenter, “it is what it is.” I’ve now been up to bat an impressive four times in this delayed drug cycle. Four swings, four misses. I need 1000 for my Neutrophil count to stay in the clinical trial, and I have batted a 970, 700, 900 in York, Nebraska, and yesterday, a 937 in Denver. I have one last at-bat tomorrow back at the NCI. If 63 Neutrophils, or whatever the measures of Neutrophils are, don’t show up, I am out. Looking for a new team.
We can’t figure out why the numbers won’t come up. I’ve not been sick, I’m not rundown, and I’ve been eating and exercising well. Fatigue is a possibility, as sleep is mostly just a goal during the Road to Discovery. I am now wondering if my natural count is around 900. I looked up “Normal” to be 1500-6000, but those numbers seem a long way off. Since last fall, I think I’ve only been in that range once, including the months I was being tested before starting Sutent. All irrelevant, of course. As I was warned before I was accepted in the trial, the requirements are black and white. There’s no gray, even for me, who has had a spectacular result with this drug and is tolerating it, well, brilliantly. It would be discouraging, if I were one to be discouraged.
Which I’m not. I’ve already talked to my lovely, Terry, Dr Akerley’s nurse at Huntsman Cancer Center, about starting the process of getting Sutent off-label. I am relatively certain that my insurance company will reject my request, since Sutent isn’t approved for my cancer (even though it’s proven to be working. So illogical. But that’s for another post.). If I need to, we’ll appeal to Pfizer and the FDA for “compassionate use” of Sutent. And I and you will get to learn the intricacies of yet another part of the cancer treatment field. So far, what I think I know is that Pfizer has to agree to supply the drug and the FDA has to approve it for me. Dr Rajan has said odds are good that will happen, since Sutent has worked so well for me. I don’t know how much this may cost me now. From pricing I have looked up, it could be as high as $72,000 a year if I had to pay it with no assistance. Plus the costs of CT scans and doctor visits. Daunting. I also found information about a plan that would cost $10 a month. I think the truth is somewhere in between. With a little bit of luck and just 63 more Neutrophil points, it will all be a moot point.
I’ve also maintained communication with Dr Giuseppe Giaccone at Georgetown. He’s the one running a PD-1 immunotherapy trial for Thymic Carcinoma patients. He says responses to the treatment since March are encouraging. That’s not for now, since the Sutent is effective, but it’s never bad to have another team that wants you.
So, now, what have I been up to? Well, on the Road to Discovery, we have taken the bikes through Amish country in Pennsylvania and Ohio,
Indiana,
Illinois,
Iowa (GO CHICKENHAWKS!) (Said with affection, of course),
a whole lot of nothing but tornado potential in Nebraska,
and curiously Nebraska-like Eastern Colorado.
Sadly, I’ll miss the Rockies, as I’ll be in Bethesda, then back to Park City for a few days. The boys are riding up to Estes Park, west of Boulder today; it looks like a 7,000 foot climb which I would have liked to tackle part of. I’ve been riding 20-60 miles a day, trying not to ride myself into fatigue, but wanting to take advantage of cycling through new places. The team will pick me back up during a Notre Dame alum club stop in Salt Lake this weekend, pretty much no matter what happens at the NCI tomorrow. We’ll ride The Loneliest Road in America in Nevada, then scoot up to Sacramento, before ending the trip in Pebble Beach next week.
(This video shows more about our journey.)
It sure would be amazing to launch back on to the Road to Discovery unencumbered by the need to have to find alternative treatment, but again, it is what it is. (That saying is SO STUPID, but sometimes, all there is.) It’s somehow symmetrical and congruous (thanks, thesaurus.com) to me that I’m working on a trip to fund research to get to clinical trials for rare diseases while I am in a clinical trial for a rare disease. I’m hoping some of the good karma shakes itself all over me as I come up to bat for the 5th time tomorrow. Livestrong, y’all. It’s not a choice.
Lisa w
Fingers crossed, prayers said.
Sandy gridley
what a trip – my sister is stage 4 breast cancer and had a clinical trial that didn’t work – luckily her cancer isn’t particularly aggressive. I had breast cancer surgery 7 years ago and while doing my yearly breast MRI found lung cancer, stage 1……Surgeon says he got it all and I won’t need chemo or radiation. Hope not. Huge surgery – upper left lobe removed. But am breathing with xtra oxygen till can go off. Good luck!!