Hi! Today I’m gonna be sharing with you my experience going through the oral chemotherapy called Xeloda, which was part of the first step of my treatment for stage 3 colorectal cancer. If you’re new to this channel, welcome to Life as a Cancer Survivor. My name is Jelena and I was diagnosed with Stage 3 Rectal Cancer in May 2016.
Radiation and oral chemotherapy was the first step in my treatment and in my last video, I talked about how it was going through radiation so if you missed that click on the link up here and you’ll get to hear more about the fun messages I wrote on my butt for the nurses to discover at the end of each week.
On June 7th, 2016 five days after my initial appointment with my oncologist he gave me a call to confirm the results from my rectal EUS that the tumor was rated a T3 which meant that I would be starting radiation and oral chemotherapy soon. He said I would call in the prescription right away for the chemotherapy pills Capecitabine, also known as Xeloda, and he asked me when I was scheduled to see the radiation oncologist. So I said I wasn’t scheduled until June 17th, so 10 days later for that appointment. So he said he would give the office a call right away and see if they could fit me in any sooner.
Well sure enough that afternoon I was in with the radiation oncologist so things were getting started really quick here and the following week is when I would get started with radiation and chemotherapy. The next day I ran into my oncologist after my mapping CT scan and he asked if I had heard anything about the chemotherapy pills yet. I was kind of surprised that he had already recognized me even though I had only met him once in person but I guess because of the type of cancer that I was diagnosed with and my age that made me kind of memorable to him.
We got scheduled for a chemo class with a Physician Assistant at the Oncologist’s office that following Wednesday and all caregivers were supposed to attend so I made sure to let my parents know that they needed to fly in before Wednesday so that everybody could be in attendance for that.
The next day the Radiation Oncologist’s office called to see if I’d gotten my chemotherapy pills yet. I mentioned that my oncology doctor was having his nurse take care of it, but the woman at the radiation office that called me said that she knew that that nurse was not in today so she was gonna call the physician assistant to make sure that the prescription was called in and taken care of. Within five minutes I had a call from the pharmacy up in Denver to go over how to take the chemo pills, what side effects I should expect, and to verify the address where they needed to get shipped to, and how soon I needed them. I was really impressed with how fast these offices worked and how much pull they had to get things done. So I paid over the phone for the pills and they said that they were gonna have them overnighted via FedEx to get them to my house ASAP so I would be ready to start radiation therapy whenever that office was ready.
The oral chemotherapy I took was Xeloda and the pills were 500 milligrams each. That 
afternoon the nurse from the oncologist’s office called me to give me instructions on how to take them. She said don’t crush them up and to try as hard as I could to take the dosage 12 hours apart, once in the morning and once in the evening. She also made sure that I knew that I was only supposed to be taking those pills on the days I went in for radiation, so Monday through Friday. I took two pills in the morning and then three pills in the evening 12 hours later. I’m not sure how well you can tell the size of them from this picture but here’s a picture of them next to a juice glass from my last week of chemo.
The nurse also called in an anti-nausea prescription for me in case the chemo pills maybe nauseous right away. She prescribed me 8 milligrams of ondansetron I’m bad at pronouncing these I don’t know how to pronounce them I just look at it I actually thought it was pronounced some different way until I looked closer at the bottle um but it’s known as Zofran. She said that if the first dose of chemotherapy pills made me sick that before I took the next dose to make sure I took that Zofran an hour before the next dose of chemo pills to try and keep the nausea at bay.
June 13th was my first day of radiation and oral chemotherapy and I also had my MRI scheduled for that day. I woke up at 5:45 a.m. to eat a muffin and take the first dose of chemotherapy pills to give me six hours between then and when I was scheduled to be at the hospital for my MRI. I was supposed to check-in at 12:15pm for that MRI at the hospital so if I woke up at 5:45 ate breakfast and the chemo pills I’d be done by 6:15 for sure and that would give me the six hours I needed to fast before the MRI. I tried to go back to sleep but I couldn’t fall asleep I started dozing off once everyone else started waking up so I just got up.
At 8:25 a.m. I got a call from the Imaging Office saying that they had a cancellation and wanted to know if I could come in for a 9:00 a.m. appointment. Well I said, I ate a muffin at 5:45 in the morning so I haven’t fasted for six hours is that gonna be okay? So they put me on hold, asked the MRI tech, came back and said yeah that’s fine get down here so I got dressed brushed my teeth really quick and headed down. After the MRI I went in for radiation ’cause they moved me up to an earlier time slot for that first day, I went home and had lunch, and then took a two-hour long nap I was exhausted.
Later that day after taking the second set of chemotherapy pills that evening I wasn’t feeling nauseous yet, so I was really excited that after day one I wasn’t having to deal with debilitating nausea.
On day two the whole family joined me down at the Cancer Center for the chemotherapy training class. I brought with me a list of questions that I had written down so that I wouldn’t forget any of them once we got down there. The class was just my family and the physician assistant sitting in a little room around a table. She opened up though asking if I had any questions first. I asked if it was okay for me to go in for acupuncture while I was going through treatment? She wasn’t sure so she had to go ask somebody else but she came back and said yeah that’s fine. I had gone in previously for acupuncture for treating headaches that I got all the time and it helped so I wanted to have that in my back pocket in case I started feeling a lot of pain or nausea just as another option for me.
Then I asked her if it was okay if I had a drink or two at my sister’s wedding which was 
halfway through my treatment. She made it sound like nobody had ever asked that before which I find suspicious, but she said as long as it was in moderation I was okay. Then she went over a list of all the possible side effects of chemotherapy and she even gave me a nice handout that broke it all down based on how common all of the side effects were. She said that the main side effects that most people experience while on Xeloda at varying degrees of severity are more than 25% of patients experience the side-effect of Hand-Foot Syndrome which includes redness and swelling of the hands and feet which can prevent normal activity, cracking and peeling of skin on the hands and feet, and then tingling and numbness or burning again in the hands and feet. Diarrhea was also a common side effect which includes cramping, gas, and bloating which I experienced the diarrhea and the cramping but I’m not sure if it was from the radiation or from the chemotherapy or both of them since I was taking them at the same time.
The one thing I would need to start doing on day 1 of treatment would be to do a mouthwash rinse after every meal that consisted of water, baking soda, and salt. It was meant to help prevent the mouth from getting sores which sounded pretty miserable and I really wanted to avoid.
She also mentioned that I would need to go into the oncologist’s office every two weeks while I was going through treatment just to check on my blood work and make sure that none of my levels were plummeting too low or going crazy.
Nearly two weeks into taking the chemo pills my insides were just really sensitive feeling and my appetite started to decrease. My oncologist’s nurse gave me a call to see how I was doing and so I mentioned those to her of course. So somehow a little portion of my video did not record so I’m just gonna pick up right here and let you know that after I told the nurse that my insides were feeling sensitive and my appetite decreased she mentioned that if I took the pills right away with food they get absorbed much faster so that I should wait closer to a half-hour after eating before taking those pills. It did seem to help some so I tried to remember to do that regularly for the rest of my chemotherapy.
Week three started with an appointment with the oncologist to go over my blood draw results from the week before and see how I was handling the chemo and radiation. As expected my white blood cell count had dropped into the low range but it was only low for a healthy adult. It was still within the low range that my team was comfortable with but I needed to be extra careful about germs because if I did get sick it would end up being much worse than if a healthy person got ill.
By the final week of taking the pills the only side effect that I was feeling that I could definitely attribute to the Xeloda was the Hand-Foot Syndrome. It wasn’t as severe as others have gotten it but my hands and feet were red and it was really painful to walk or even stand on my feet. My appetite was pretty low by that last week too. I discovered that if I took the Zofran, even though I wasn’t feeling nauseous taking that did help increase my appetite a little bit. But the side effect from that is that it would constipate me.
The final evening of taking the pills was pretty uneventful but I was definitely happy to not have to take those twice a day anymore. I did manage to avoid getting any mouth sores perhaps from that mouthwash that I was using that was baking soda, salt, and warm water, so I would definitely recommend to anybody starting any kind of chemotherapy that could cause mouth sores to use that.
I was relieved to be done with radiation and oral chemotherapy but I was not looking forward to the next steps that were coming up. I’d never had major surgery before so surgery was definitely a huge, scary unknown to me. Stay tuned to hear about my surgery in an upcoming video.
Next week I’ll be talking about great gift ideas to give someone that’s going through radiation therapy. I’ll talk about stuff that I received and also that fellow survivors received that they said was really handy for them. If you missed the video on the other part of my 28 days of treatment, the radiation therapy part, here’s a link to the video right there. And my face down here you can click on that to subscribe to my channel and you’ll be notified when that gift-giving video is posted and all other future videos. Thank you for watching and I’ll see you next week!
*This video was originally published on December 4, 2019
*Link to My Cancer Diagnosis, Tests, Tests, Tests, and My Treatment Plan blog posts