It's been 50 days between treatments, but I'm finally starting a clinical trial! I was uncomfortable with the idea, but I understand them better after talking to friends who have been through clinical trials and meeting my treatment team. This experimental drug sounds like a good fit for me!
So as a quick guide to my history so far...
I used to be wary of seeing scans, but I've since changed my stance. By now, I know what cancer feels like. I don't even need to see my scans, so when I do, there are no surprises. I can feel everything, and my doctors can see everything. At this point, refusing only leaves my husband in the dark.
My last scan made it clear FOLFIRI wasn't controlling the cancer. My oncologist decided to curtail the treatment cycle. She wasn't confident a third-line treatment would do any better, so it was time to seek out clinical trials.
The break in treatment has been really hard. During the 50 day search and application process, my cancer symptoms gradually returned, and I went from maybe half a dose of hydrocodone every 2-3 months to 1-3 half-doses daily. Without opiates, I couldn't sleep or eat anymore.
It's like letting my health freefall and not knowing if anyone will catch me. The temptation to wallow in the pain and pessimism has been stronger than ever through this. Scripture says, "Rejoice in hope, be patient in tribulation, be constant in prayer," (Romans 12:12) among many exhortations to wait on the Lord. It's disgraceful and such a waste of time when I forget this because He's caught me every single time. I could list so many times I've seen the Valley of the Shadow of Death, yet here I am.
You can find trials to discuss with your oncologist, using resources like COLONTOWN and databases like ClinicalTrials.gov. There's a ton, and more are added all the time. You're bound to find a few good fits to apply for, even if you want to stay relatively close to home.
I learned about this particular trial through my care team, though.
My oncologists have been proactive and flexible. They searched for appropriate clinical trials with my specialist in Vanderbilt. Though Vanderbilt has nothing available for early 2025, Sarah Cannon did. So I began working with a third oncology team.
Based on specific mutations and details about my cancer (I'm MSS, KRAS, etc), Sarah Cannon submitted me to the few matches. FOLFIRI really hurt my platelets count, so despite a 50-day recovery period, I only barely qualified for this trial. (Good call to halt FOLFIRI early!) Then I heard back a week later that I was accepted by the pharmaceutical company.
There's a waiting period for your previous chemo treatment to wash out of your body. 50 days is plenty, so I skipped this step.
Once I was offered a slot, I started the screening process. Blood tests, urine tests, CT scans, and everything else required by the pharmaceutical company. The following week, I retook tests I failed in hopes my numbers had improved...and I passed! (It's always good to keep your husband on edge.)
I also met with the treatment team at Sarah Cannon to go over contracts and learn what to expect.
With a baseline for my health established, I'm ready for treatment! Since the pharmaceutical company only needs my anonymized health and basic demographic information, Sarah Cannon acts as my go-between any time I need to contact them.
Supposedly, they should be the same as receiving an FDA-approved treatment at home. If they require extra tests that insurance won't cover, they'll cover it instead. And obviously insurance won't cover experimental medicine, so the pharmaceutical company provides it for free. Otherwise, everything is billed through insurance as normal.
As a bonus, the pharmaceutical company will also cover my hotel and gas costs. That's huge because I will be traveling very often.
Everyone asks this. FOLFOX was effective and tolerable for a year, but I had to stop when I developed a severe allergy. As great as FOLFOX was, I can't risk any treatment containing oxaliplatin again.
I've been in so much pain. The first round of chemo back when I first got diagnosed brought instant relief. I'm hoping I'll get that again from the new drug.
I'm not really supposed to post about the experiment online, so beyond what's freely available online, I shouldn't go into details, but I know what test group I'm in and the treatment schedule. It sounds intense, but I'm optimistic about it. And honestly, I want anything other than opiates at this point.
Of course, I place my trust in the Lord over the healthcare system. It's hard, but I pray that God matches me with the treatment He'd have for me. Even if it increases the wait, I'd rather He close and open doors in His wisdom. If this isn't the drug for me, something good's bound to pop up eventually. But if I can have something that targets my condition so specifically so soon, praise God.