diary

src/diary/entries/250206

@@ -0,0 +1,63 @@
+<!--250107,241230-->
+<h1>Getting into a Clinical Trial: FOG-001 </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>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>• Teams - My local clinic and surgeon, Vanderbilt, Sarah Cannon </li>
+	</ul>
+
+<h2>My last treatment... </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>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>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>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>
+
+<h2>How did I get into a clinical trial? </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>I learned about mine 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>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>
+    
+<h2>What happens if 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>I also met with the treatment team at Sarah Cannon to go over contracts and ask questions. </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>
+
+<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>As a bonus, Parabilis will cover my hotel and gas costs. That's huge because I will be traveling often. </p>
+
+<h2>So I'm starting really soon! </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>
+
+<h2>Bonus Question: Why did I get off FOLFOX? Why can't I go back to it? </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>