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<h1>Getting into a Clinical Trial: FOG-001 </h1>
<h1>Getting into a Clinical Trial </h1>
#health #personal<br>
<br>
<p>After 50 days between treatments, I finally got into a clinical trial. I have always been uncomfortable with the idea of them, but after talking to families at church who have been through clinical trials and my treatment team, I understand them a lot better now. They are still kind of crazy, but I feel like FOG-001 will be a good match for me. Also sorry for being moody lately. Uncontrolled cancer is so painful. ^^' </p>
<p>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! </p>
<p>So as a quick guide to my history so far... </p>
<ul>
<li>• Colorectal cancer diagnosis - November 2023 </li>
<li>• FOLFOX - 20+ treatments </li>
<li>• FOLFIRI - 4ish treatments </li>
<li>• FOG-001 by Parabilis/FogPharma - starting first treatment soon </li>
<li>• FOLFOX - 20+ treatments, then developed an allergy to it </li>
<li>• FOLFIRI - 4ish treatments, but ineffective </li>
<li>• Unnamed experimental drug - starting first treatment soon </li>
<li>• Teams - My local clinic and surgeon, Vanderbilt, Sarah Cannon </li>
</ul>
<h2>My last treatment... </h2>
<h2>Why stop FOLFIRI? </h2>
<p>I used to be wary of seeing scans in case it would depress me, but I've since completely changed my stance. I got diagnosed with colorectal cancer in November 2023 and definitely had it at least 8 months prior to that, so I know what cancer's like by now. I don't even need to see my scans, but 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, and that isn't fair to him. </p>
<p>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. </p>
<p>My last scan was bad. My oncologist decided to pull me off FOLFIRI, since it doesn't control my cancer. She wasn't confident a third-line treatment would do any better. So I've been off treatment for 50 days. </p>
<p>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. </p>
<p>So what does cancer feel like? Where my tumors are, when they are aggressive, I feel a stabbing dagger-like pain. When they aren't aggressive and possibly are even being broken down, they have a dull soreness or an itchy, almost bone-mending feeling. Apparently, sometimes cancer gets misdiagnosed as a pulled muscle because the stabbing feeling is described similarly. </p>
<p>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. </p>
<p>Without treatment, it's been really bad. It's been 50 days of either writhing in bed, yelping from pain, or using opiates. I tried to scrape by without opiates, but family and friends broke me down. I went from maybe half a dose of hydrocodone every 2-3 months to 1-3 half-doses daily. Without it, I couldn't sleep or eat. I really needed a treatment. </p>
<p>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. </p>
<h2>How did I get into a clinical trial? </h2>
<h2> So how did I find a clinical trial and enter it? </h2>
<p>You can find your own trial to discuss with your oncologist, using resources like <a href="https://learn.colontown.org/learningcenter/trials-basics/">COLONTOWN</a> and trial databases like <a href="https://www.clinicaltrials.gov/search?cond=Colorectal%20Cancer">ClinicalTrials.gov</a>. </p>
<p>You can find trials to discuss with your oncologist, using resources like <a href="https://learn.colontown.org/learningcenter/trials-basics/">COLONTOWN</a> and databases like <a href="https://www.clinicaltrials.gov/search?cond=Colorectal%20Cancer">ClinicalTrials.gov</a>. 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. </p>
<p>I learned about mine through my care team, though. </p>
<p>I learned about this particular trial through my care team, though. </p>
<p>I get told all the time how dodgy oncologists are and how assertive I need to be in my care. I feel like my oncologists have been proactive and flexible. I wanted to stay on FOLFIRI, but now I'm grateful my oncologist broke the treatment cycle early and started searching for appropriate clinical trials with my specialist in Vanderbilt. Though Vanderbilt had nothing available for early 2025, Sarah Cannon did. So I got to meet a third oncology team! </p>
<p>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. </p>
<p>Based on specific mutations and details about my cancer (I'm MSS, KRAS, etc), Sarah Cannon submitted me to the few matches found. FOLFIRI really hurt my platelets count, so I only barely qualified for FOG-001. (Good call to curtail FOLFIRI early!) I heard back a week later that I was accepted by Parabilis, the pharmaceutical company's clinical trial team. </p>
<p>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. </p>
<h2>What happens if you're accepted into a clinical trial? </h2>
<h2>What happens when you're accepted into a clinical trial? </h2>
<p>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. </p>
<p>But anyway, once I was offered a slot, I started the screening process. Blood tests, urine tests, CT scans, and everything else required by Parabilis. The following week, I retook tests I failed in hopes my numbers had improved...and I passed! I really like to keep my husband at the edge of his seat with my health. </p>
<p>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.) </p>
<p>I also met with the treatment team at Sarah Cannon to go over contracts and ask questions. </p>
<p>I also met with the treatment team at Sarah Cannon to go over contracts and learn what to expect. </p>
<p>With a baseline for my health established, I'm ready for treatment! Since Parabilis only needs my anonymized health and basic demographic information, Sarah Cannon acts as my go-between any time I need to contact them. So through them, I got free hotel reservations. :) </p>
<p>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. </p>
<h2>Are clinical trials expensive? </h2>
<p>Supposedly, they should be the same as receiving FDA-approved treatment at home. If there are extra tests required by the pharmaceutical company that insurance won't cover, they'll cover it. Obviously insurance won't cover experimental medicine, so the pharmaceutical company provides it for free. Otherwise, everything goes through insurance as normal. </p>
<p>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. </p>
<p>As a bonus, Parabilis will cover my hotel and gas costs. That's huge because I will be traveling often. </p>
<p>As a bonus, the pharmaceutical company will also cover my hotel and gas costs. That's huge because I will be traveling very often. </p>
<h2>So I'm starting really soon! </h2>
<h2>Bonus Question: Why did I get off FOLFOX? Why can't I go back to it? </h2>
<p>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 FOG-001. </p>
<p>I'm not really supposed to post about the experiment on social media, so beyond what's freely available online, I'll be vague. But I have the details of the treatment itself, the tentative treatment schedule, and which test group I'll be in. The methodology sounds crazy to me, but I have really high drug tolerance (look at how many doses I took of FOLFOX without side effects when most halt at 4-6 doses). I've heard it's not too hard on patients, either, so maybe it will go smoothly? </p>
<p>Regardless, honestly, I just really want <i>something</i> other than opiates. If it can be as early as FOG-001's timeline, that's a godsend. But new trials pop up all the time, so even if this isn't the drug for me, something good's bound to pop up eventually. </p>
<p>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. </p>
<h2>Bonus Question: Why did I get off FOLFOX? Why can't I go back to it? </h2>
<h2>I'm excited to be starting super soon! </h2>
<p>Everyone asks this. FOLFOX was super effective and tolerable for me for a full year, but it's efficacy is used up. I developed a severe allergy for it, so I could die if I take anything with oxaliplatin in it again. </p>
<p>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. </p>
<p>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. </p>
<p>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. </p>

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