Sometimes we think that we are in control and we get to pick from our options, but other times the choice is made for us.
The tissue from my biopsy didn’t have the biological marker the researchers were looking for, so I didn’t qualify for the Phase II clinical trial.
Since my last post, I’ve had 5 rounds of radiation to my back. Thankfully the pain has almost resolved. However, having more treatment (radiation) means a longer wash out before starting a trial. Of the two Phase I trials in Indy, one required a 14 day wash out (ie, no treatment) the other required a 28 day wash out. I’ve already been off systemic treatment (chemo) for 5 weeks, which is terrifying to think about.
So, I will be in the Phase I clinical trial. I head over to Indy on July 3rd for a physical, ECG, labs, scans, etc. Then I head back on July 9th to start the trial. It involves a chemo I was on in 2009 (Xeloda) and an experimental new drug (TAS-114). Both drugs are oral and taken twice daily. I’ll take them for 14 straight days, and then have a 7 day “recovery” period before starting another round. During treatment, there will be a lot of labs and vitals taken. The first day will be approximately 8 hours long to continually monitor my vitals.
There seems to be a lot of misinformation about clinical trials. No, I do not get paid to be on this trial. I do get the two drugs provided at no cost, however the “standard of care” items (scans, labs, doctor’s visits) are billed to insurance. Most trials work this way, the treatment is provided, but the other items are billed to insurance.
And, speaking of insurance, mine is changing…big time. For the past 12 years, I’ve had phenomenal health insurance through my former employer. When I go guest lecture to students, I try to share this wisdom with them…look beyond the salary offered, look at the benefits offered as well. Anyway, my health insurance has run out. So, now I’m forced to go on Medicare (which is what retirees are on). Medicare pays for 80% of treatment related costs, so most people get an additional plan to help with the remaining 20%. After a long meeting with a health insurance rep, it turns out there is only ONE plan that will pay for Phase I trials. And, of course, that plan has the most expensive monthly premium.
Since traditional treatment has failed, my future will likely have many Phase I trials, so the more expensive plan is absolutely necessary. So, I’ve finally humbled myself enough to have an online fundraiser. All the info is here: http://www.gofundme.com/jensmith
Last night while saying prayers, Corbin asked, “Can cancer make you die?” I said “yes” and he asked how. I gave a simple explanation (it keeps growing and takes over the body) and he said, “I wish it was like that giant and we had a rock.” David and Goliath. I was heartbroken and proud all in one moment.
Praying that Indy has the ROCK to slay the giant.