Running Out of Knobs to Turn
Last I left you I had just returned home from the hospital. The surgeon had taken some small intestine out where it was obstructed and re-attached it in a way that would hopefully alleviate the problem. He also removed a fair amount of tumor to help keep those at bay while we search for a treatment that works.
After healing a bit, I was to try a type of chemo that works differently than traditional chemotherapy. I won’t get into the specific science in this post, but anyone who is interested can Google “Cetuximab” and learn a bit about how it works. This chemo is supposed to be tolerated quite well compared to traditional chemo so I was pretty excited to get going with it.
Unfortunately, a few days before I was supposed to start, I was hit with another small bowel obstruction that sent me to the hospital, begging for dilaudid (synthetic morphine) and phenergan (anti-nausea medication). Fortunately, that cleared on its own and I was sent home with a serious disappointment that the surgery I’d had didn’t seem to do the trick. I was told by my doctors that this doesn’t mean the surgery wasn’t successful. There may be some inflammation from the procedure that caused this, or some scar tissue, or just another problematic spot that wasn’t an issue before.
So that delayed my chemo infusion for longer than I would have liked but now I was ready to start. I went in, got my pre-medication (Benadryl), and we loaded the Cetuximab into the IV pump as a side note: Cetuximab comes in these really cool big glass bottles that they wouldn’t let me keep. The infusion went fine and I left feeling only a little groggy from the IV Benadryl. That evening I developed a headache, a headache that would last 5 days.
I also developed other side effects from this “well tolerated” medicine. Fevers, inflamed mouth, loss of appetite, nausea, and, worse of all, joint pain. The joint pain only lasted for a Friday-Sunday, but boy was it rough. So rough I had to use two hands to pick up a glass of water and I could barely walk to the bathroom in the middle of the night without whimpering. It felt like butter knives had been inserted into all my major joints and tooth picks were used for the smaller joints. However, that all resolved just in time for me to get my second infusion.
After receiving my pre-meds, I decided to take a little nap. IV Benadryl really takes it out of me and I had a nice warm blanket on. Conditions were right. So I fell asleep only to awake 10 minutes later feeling like someone was sitting on my chest while someone else stabbed me in the kidneys with ice picks. My lips started to swell and my face flushed and it was clear I was having a serious allergic reaction to the Cetuximab. I was dosed with additional Benadryl and a steroid. I felt nauseous and on fire and like I needed to crawl out of my skin. More Benadryl and more steroid finally started to calm things down. I could breath again and my flop sweat had slowed to just a light misting. My back pain was diminishing but I also began to shake uncontrollably. To keep the shakes under control, IV Demerol was added to the mix which finally got my body to calm down enough to where I could sleep and recover.
When I awoke the doctors asked “Do you want to try and finish the dose?”
“HELL NO!” is what I wanted to say. But instead my drug laden brain wound up spitting out, “I really don’t think I can.” So we set a date to try again in a week. You know, just in case this was a fluke…or the reaction can be controlled with hefty doses of pre-medication.
I was given my Benadryl, steroid, and Pepcid. I fought hard to stay awake through the medication fog so that I wouldn’t be caught off-guard by another allergic reaction. After 2.5 minutes into the infusion, we found out that it’s not a one time thing and that it can’t be controlled by pre-meds. I had pretty much the exact same miserable reaction (this time with vomiting!).
After that my oncologist put me on a slightly different formulation of the drug. It’s not supposed to work quite as well, but at least it won’t kill me. I’ve had 4 infusions of panitumamab, now. The side effects aren’t terrible. The worst is an inflammation all over my mouth that makes eating a challenge. We will do scans again at the beginning of August to check out how well the drug is working.
About a month ago — just a few days after my first infusion of panitumamab—I wound up developing another bowel obstruction. This one was mild enough that I thought I could tough it out at home. After about a week of laying in bed and starving myself, I started vomiting and the pain got so intense that I had go to the ER.
In the ER they tried to decompress my small bowel by placing an NG-Tube. This is a plastic tube that goes in through your nose, then down and around into your throat, eventually landing in the stomach. They are about as unpleasant to put in as you could imagine. The process left me feeling violated with teary eyes, a tremendously sore throat, and a left ear that still feels like it needs to pop. Plus it didn’t even work!
I was admitted to the hospital and after a couple days and we decided that the NG-Tube wasn’t working. So the doctors decided to try another type of tube. The PEG-Tube.
This tube got put in while I was under general anesthesia. I woke up without the NG-Tube (goodbye you horrible monster) and with a small tube that goes from my stomach to a drain that I awkwardly keep strapped to my waist. This also did not solve my problem. I still had persistent pain in my abdomen and now only one option left to help relieve it.
I decided to go ahead and have an ileostomy. This procedure created an opening from my small intestine to the outside world. While I wasn’t looking forward to having my third abdominal surgery in less than a year, I was looking forward to the pain finally ending. Plus it had been about 2 weeks since I’d had anything substantial to eat, so knowing that food was in my future was a huge motivator.
The 5-hour procedure went smoothly and I was soon back in my room. One of the first things I noticed upon waking was that the constant pressure of gas and bloating in my small intestine was gone. I now had surgical pain, but knowing that it would heal eventually makes a huge difference.
After a total of 22 days in the hospital, I was finally sent home to rest and recover. My recovery is going very slowly. After radiation, many types of chemo, and two prior major surgeries with a smattering of minor procedures (biopsies, tube placements, etc.) my body just won’t heal as quickly as it used to. It’s tired of healing.
I was feeling well enough to take a trip to Columbus, Ohio where I met with a doctor named Sameek Roychowdhury at OSU’s James Cancer Center. We were visiting him to meet his team, have a preliminary exam and interview, and sign consent forms for a piece of my tumor to be sent to Ohio. Once there, they will test its genome for many more DNA mutations than MD Anderson did. They will also look for RNA abnormalities as well.
The goal behind this extra research is to gather more information that might assist us in tracking down clinical trials that will want (and be able to) work with me. The doctor said that there’s a 10%-20% of finding additional genetic markers and a 10%-20% of a clinical trial that’s working with that particular mutation.
So now we wait for the 1 month it will take to get the results back. We also cross our fingers that the panitumamab I’m infused with every two weeks is helping to stop the tumor growth and maybe even shrink my tumors all together. Other than that, as my oncologist here in Austin put it, “We’re running out of knobs to turn.”
