FOLFOX Chemo Side Effects and Tips to Deal With Them

Hi everyone! In this video, I’m gonna dive deeper into the side effects that I experienced while on the IV chemotherapy FOLFOX and some tips and tricks that I either learned or figured out to help manage them. In case you’re new here, welcome to Life as a Cancer Survivor. My name is Jelena and in May of 2016 I was diagnosed with Stage 3 Rectal Cancer. This channel, I started to show you what life is like as a young Colorectal Cancer survivor and how life is both during and after treatment ends. You can also follow me and my life adventures over on either Instagram or on Twitter the handles are popping up over here but I’ll also have links that will take you directly to my profile so you can follow me down in the description below. So come on over and say, “Hi!”

 

I received eight rounds of the IV chemotherapy FOLFOX starting on December 13th, 2016. Within the first hour of that infusion, the side effects started kicking in. I had been sipping my water the whole time off and on, but all of a sudden when I took a drink and I swallowed, it felt like I was swallowing glass. It really startled me and I wasn’t sure if I was just going crazy or if that actually happened so I took another sip and the same thing happened so I realized that must be the cold sensitivity that my Physician Assistant or my PA had been talking about when I went to the chemo training class and why they recommend drinking only warm beverages for those first few days at chemo and after receiving chemo.

 

I would go in for chemo on Tuesdays then usually around Saturday sometimes a day or two later, that cold sensitivity of my throat would go away by then. But in the meantime, it was warm water only for me. I usually just sip water throughout the day so I would have to keep reheating my glass of water over and over in the microwave because even at room temperature it still felt like I was swallowing glass so it had to be warm water that I was drinking. By the second or third round of chemo, the water started tasting like rubbing alcohol to me. So I had to have my husband, John, taste test it to make sure that something weird wasn’t going on with our water at our house. He said it tasted normal so it was just my tastebuds changing and causing that water to taste like rubbing alcohol.

 

Here are some tips and tricks that I learned or figured out to help with managing that called sensitivity in my throat and that bad water taste without overdosing on sugary drinks:

-Add some apple juice, or your favorite juice to a glass of water. I would do a mixture of about 25% juice 75% water, and that helped with taking that bad taste of the water away. On the days where you’re experiencing cold sensitivity, warm that glass up in the microwave after you’ve mixed the juice and the water together.

-Flavored sparkling water like La Croix, Bubly, or just your favorite grocery store brand of sparkling water is a good way, a good thing to drink to help keep you hydrated on those 

days that you’re not experiencing the cold sensitivity but when water tastes nasty.

-Herbal tea is another beverage that you can drink either hot or cold and also you can sweeten it easily to your liking. My favorite ones are the fruit flavors Celestial Seasonings teas, but any of the fall and winter flavors of their herbal teas are also delicious.

Other cold sensitivity side effects that I experienced were, the first one was when cold wind would blow in my face it would be like a stabbing pain like needles stabbing me in the face. I would try to cover up with a hat and a scarf to hide as much of my face as possible but the wind would still sneak in somehow and I would get that needle stabbing feeling in my face. One other cold sensitivity side effect that I also experienced was I needed to wear oven mitts to grab stuff out of the refrigerator because if I touched cold things with my hands it felt like I was getting electrocuted in my hands as soon as the cold hit my hands so, the oven mitts protected me and kept that feeling of being electrocuted constantly away from my hands.

 

One major side effect that you’ll experience most likely no matter what chemo that you’re on is fatigue. My Oncologist’s PA mentioned when I asked about the fatigue, she said that it was gonna be more intense than the fatigue that I felt while I was on the oral chemotherapy Xeloda the summer before. So she was definitely right. When I would come home from my infusions at the cancer center I would go straight to bed and take a nap for at least two hours and that was in like the late afternoon. Then I was still exhausted after dinner and I’d be ready for bed at like 8 o’clock in the evening, which is unusual for me because I’m usually a night person. So I would go to bed at like 8pm and I’d fall asleep for two hours or so, but then I’d wake up and I couldn’t fall back asleep and I’d be restless all night and exhausted the next day.

 

Finally at my third pre-chemo appointment with the PA I mentioned that restlessness and the horrible time I was having sleeping and the PA she was like, “Oh, that’s most likely from the Leucovorin because it’s a kind of steroid that you’re getting in your infusion so let me prescribe you some Ambien to help you with your sleep.” So she told me to just take it for those three or four days at the beginning when I was really having a lot of trouble sleeping so I did and it worked like a charm. And I didn’t get any of the bad side effects like the sleep eating or sleep-driving while I was on it and I didn’t get addicted to it either so for me it was a good solution to help me with those temporary sleep problems.

 

Even with the Ambien to help me with sleeping at night, I still felt fatigued on many days. The fatigue is just different from feeling tired. Even when I would get a full night’s sleep and would nap I would still feel exhausted. Taking naps or trying to get out for some exercise which usually would perk me up didn’t work at all. There wasn’t really a whole lot that I could do beyond trying to get a full night’s sleep at night to help the fatigue other than to limit the amount of energy that I put out during the day and make sure I wasn’t pushing myself too hard or doing too many things.

 

So one change that we did make was we moved Maelle from half-day kindergarten to full-day kindergarten so instead of us having to go get her at 11:15am, she would be at school until 3:15pm, which meant that I had a lot more time to get in those naps during the day without her being at home, and we wouldn’t have to her I wouldn’t have to hurry home after chemotherapy to pick her up at 11:15 in the morning she was at school till 3:15pm, so that was stress that was taken off of me as well. Now I just had to keep her entertained for about two hours or so after school instead of from 11:15am to 5:30pm when John came home from work.

 

Another common side effect for anybody going through chemotherapy is nausea. I was written a prescription for two different anti-nausea meds Zofran and Compazine. The instructions I was given were on the day of chemotherapy I would usually get home early afternoon or so, I was supposed to take my first Zofran that evening and then every 8 hours for the next 2-3 days I was supposed to keep taking the Zofran. The Compazine was there in case I had breakthrough nausea or I got nauseous in between the Zofran doses I could take a dose of the Compazine to help. Well, after my first round of chemotherapy I suffered with nausea for a few days and the Compazine and Zofran didn’t really seem to help at all. I wasn’t throwing up but I didn’t have any kind of appetite and just felt nauseous. So after the second round instead of waiting until the evening to take the Zofran, I took it as soon as I got home from my chemotherapy and that seemed to work. So I just started those right away instead of waiting a few more hours which helped to kind of keep me ahead of the curve of nausea and kind of stop it before it started getting out of control.  There are many other options of anti-nausea medications that you can take so if you’re struggling with nausea please talk to your oncologist and see if there are any other solutions that they have that they can that can help you.

 

The next side-effect that I had to deal with were muscle cramps in my hands. This would just happen while I was at chemotherapy and they would just kind of mostly tense up and it would be more difficult to try and move them like normal. I don’t really have any solutions to this but it was comforting to know at least that this was something that was going to happen and it wasn’t anything that was life-threatening just to keep me calm when it would start happening. Once the cramping went away, my hands just kind of in general were feeling weaker and even today three years later I have troubles with unscrewing lids on jars, when I’m typing I make a lot more mistakes, and even when I’m trying to play my violin moving my fingers quickly can be a struggle sometimes.

 

I also got neuropathy in my feet. It started out as a feeling like when you sit on your foot wrong and it falls asleep, then the feeling that I had was the part when your foot starts waking up. And that would usually only last for like a day or two but then as I moved further and further along through my rounds of chemotherapy it kind of started lasting longer and longer and by my last round of chemo, they decided to leave the Oxaliplatin out completely because that’s what causes it and they didn’t want to cause any further nerve damage.

 

The tingling then changed to the “my foot just fell asleep” feeling and I would only have that pins and needles tingling occasionally. I didn’t ever completely lose feeling in my feet but the
neuropathy did make it harder for me to react quickly on my feet. I never really noticed it too much except like when we would go hiking I would feel a lot clunkier, and if I didn’t have the high-top hiking boots that I always wore there were many times where I would have snapped an ankle because I couldn’t have reacted fast enough on the rocky terrain to straighten myself up. Also when I would exercise or walk for more than a half-hour at a time, my feet would start burning. Wearing some compression socks that went over the calf did help a little bit but it didn’t completely get rid of that burning feeling. And then eventually every night when I would go to bed and lie down in bed that burning feeling would return to my feet. That’s when I decided it was time to try some acupuncture to see if that would help. It definitely wasn’t a quick fix, but I am happy to report that after two years of acupuncture treatment the tingling and burning did finally go away in my feet.

 

One more side effect was my sense of smell got thrown off sometimes. I noticed this the worst or the most when I would shower. The water coming down on me in the shower it would smell like cooked cabbage. Multiple times I called John and had him come over and smell the water while I was in there to see if it smelled to him, but he thought it smelled like normal so it was just me and my sense of smell was off and somehow the water smelled like cabbage. That also could be partially why like water when I would drink it would smell like rubbing alcohol. It was weird, there’s no solution that I came up with it, but it’s another strange thing to look forward to.

 

Of all of the side effects that I experienced during chemotherapy, the only ones that I still am experiencing 3 years later are weakness in my hands and fatigue. The fatigue partially could be from the anxiety medication that I’m currently on which causes fatigue as one of the side effects, but I was experiencing this fatigue even before I started those anxiety medications. It’s definitely not as bad as when I was on chemo, but I need 8 hours of sleep every night otherwise I am exhausted the next day and need a nap to make it through. I also get tired a lot more easily after exercising, doing housework, or doing yard work.

 

Do you have any tips or tricks on surviving through the side-effects of chemotherapy? If so help fellow cancer survivors out and let us know in the comments below.

 

Please make sure that you’ve clicked on the like button right down here so that YouTube knows you’re enjoying my videos and they’ll show them to more people. Also, make sure you’re subscribed so you never miss any of my latest videos and I hope you all are staying safe and healthy, and thanks for watching.

*This video was originally published on June 5, 2020

More Details on Going Through FOLFOX Chemo

Welcome to Life as a Cancer Survivor. In today’s video, I’m going to talk all about what it’s like to go through IV chemotherapy. My name is Jelena and I went through eight rounds of FOLFOX chemotherapy to treat my Stage Three Rectal Cancer diagnosis. I was diagnosed with Rectal Cancer in May of 2016 and began the first of my eight rounds of IV chemotherapy in December of 2016. Click the like button down here below if you’re ready to hear about what it’s like to go through multiple rounds of chemotherapy.

 

A few videos ago I talked about the side effects that you could possibly experience while on chemo and the ones that I experienced. So in this video, I’m going to talk more about just the day-to-day happenings of what it really is like to go through chemotherapy. Let me start out with being at the cancer center for your infusion. Usually, there’s a special infusion room and there’s a nurse’s station in the middle of this large infusion room. At mine they kind of had it divided up into little “rooms” where there were half walls and within each of those rooms, there were about four to five chairs that you could sit at. Each of those chairs reclined, some of them had TVs at them, and others had an extra chair next to them so that a visitor could sit next to you during your infusion. I always got a pillow and put it behind my back but I would bring with me my own super cozy and soft blanket that my husband, John, had bought me. I would bring with me a pair of cozy slipper socks and I would take my shoes off and just put those slipper socks on since I was there at the infusion for three hours. I would also bring water, either snacks or a lunch depending on what time my infusion was, my phone of course, and then a tablet and headphones. John came with me for many of my infusions but he would bring his work laptop with him and many times he had meetings that he had to attend so I couldn’t rely on him as my sole source of entertainment. So on my tablet, I downloaded games, I downloaded some tv-shows and used those to keep me occupied and that’s where the headphones came in handy for listening to the tv shows. I also let my mom, sister, aunt, and one of my cousins know what time my infusions were and they would keep me occupied in a group text with just funny texts or gossip. Personally, I could never fall asleep during the infusions.

 

I mentioned that you’re there for about three hours for, you know, for your infusion. I had a port implanted which is a device that goes into your chest and it has a small tube that comes out of it that goes into one of your large veins. Once you’re hooked up to the IV and the chemo pumps through a needle that’s inserted into your port you’re not stuck in that chair the entire time. The nurses showed me how to unplug the chemo pump because it had a battery in it as well so it could run for a little while without being plugged in. So they showed me how to unplug it and take the pole with me to the bathroom because I had to go multiple times during the infusion. At my cancer center, they had three to four individual bathrooms that were large, accessible-sized bathrooms so even with you and that chemo pole you didn’t feel cramped inside the bathroom at all and had tons of room to maneuver around in there.

 

Once I was finished with the in-person chemotherapy, I got disconnected from that and connected to a chemo pump that would dispense chemo to me for the next 46 hours. They gave me a fanny pack and an over-the-shoulder bag that I could choose from to put that pump into for carrying it around for the next two days. I chose the over-the-shoulder bag because it was more comfortable and the fanny pack was actually too big on me even when I pulled it as small as it could get it was still too large. So then once I got home I would always immediately go to bed and take a nap for at least two hours. You’ve been through a lot physically and mentally at chemo, so most people that I know go and take a nap as soon as they get home. The headboard of my bed has a post on the end of it so I would hang the bag on that and tuck the hose into the bag as much as I could so that I didn’t have to worry about getting tangled up in it and I didn’t have to worry about my cats chewing on that hose. The hose was about three feet or so long so there’s a lot that you can work with to figure out where exactly you want to put the pump when you’re sleeping to be the most comfortable.

 

So for the next two days, that pump went everywhere with me. I felt pretty cruddy but I tried to not use that as an excuse to not do anything. The bag fits nicely into the water bottle holders on a treadmill so for my first rounds of chemo I would just put the pump in there and I would go to the gym and I would run. As I got further along in treatment I was too tired to run so I would only walk, and I would either walk outside or on the treadmill at the gym. I would only walk outside if it was at least 50 degrees because I was going through chemo in the winter in Colorado and Oxaliplatin, one of the drugs that’s in FOLFOX, it causes extreme cold sensitivity and if I would go outside and it was colder than about 50 or if the wind was blowing strongly it felt like needles were stabbing me in the face constantly. So I wouldn’t subject myself to that I would just go to the gym and walk if it was cold or windy.

 

I asked the nurses at the cancer center if it was okay if I showered while I had the chemo pump attached to me and they told me that it was fine as long as I didn’t get the pump wet. They said that the dressing that was over the needle was waterproof so it was supposed to keep any water and sweat out and away from where the needle was. So to shower I would get a hanger, I used a metal hanger because it’s bendy and so I could bend it to whatever angle I needed it, so I would hang the over-the-shoulder bag on the hanger, and then place the hanger on the outside of my shower so the pump was on the outside and since you’ve got a long hose I would just untuck the hose most of the way and I showered with the chemo pump on. I wouldn’t scrub super hard around where the, um, the dressing was I would just soap up and then just let the soap flow over it but I never got it wet, never had any problems uh with any water getting in and doing anything to my port.

 

For sleeping at night I was worried about two things. One, that I was gonna get tangled up in the hose, and two that I was gonna forget that I had the pump attached to me and would get up and start walking away and get yanked by the pump still hanging on my headboard. As I mentioned earlier, I would hang my over-the-shoulder bag on the post of my headboard and then tuck the hose in as much as I could, that seemed to work and I never got tangled up in the hose when I was sleeping. As far as waking up and forgetting that I had the pump attached to me, whenever I’d wake up in the middle of the night and need to go to the bathroom I always wake up and I just lay there for a minute or two because I’m like, “Oh do I really have to get up or can I fall back asleep?” Of course, I could never fall back asleep but while I’m laying there and debating how long I’m gonna wait before I get out of bed, you would hear the pump disperse the chemo once or twice so that would be my reminder, “Oh yeah I’ve got that bag over here I need to grab that and take that with me before I go to the bathroom.” And in case you’re wondering what that pump sounds like each time that it dispenses the chemo, to me it sounds most like one of those automatic hand sanitizer dispensers put your hand under and it just dispenses um only it’s a little bit quieter than one of those.

 

On the days that my pump wasn’t attached, I would occasionally try lifting weights while I was at the gym. There were many movements that I didn’t do because they were too painful from the port location. First off I couldn’t lift my arm more than shoulder height without it being very painful on my at my port so that meant no jumping jacks or tricep stretches like where you do this it hurt to bring my arm up that high. It was also painful to do chest presses or stretches where you would take your arm across your body. Since I wasn’t hardcore into weightlifting I just did other exercises or avoided those stretches that hurt the port site.

 

I went into the cancer center on Tuesdays for my infusion, every other Tuesday to be exact, um then I would go back on Thursday right before they closed to get the pump detached from me. I would usually feel pretty crappy until Saturday or Sunday. Once the weekend hit the cold sensitivity started easing up so I wouldn’t have to warm up all of my beverages, the tingling in my feet would ease up, and I stopped my anti-nausea medications so the nausea was gone and I wasn’t as sleepy. The following week I would really start bouncing back. My energy increased and that just general crappy feeling started easing up. Then over the next weekend, I felt almost back to normal just in time for the infusion to get started again and that cycle to start on Tuesday.

 

My cancer center gave out vouchers, if you asked them, that were good for a season ski pass at Loveland Ski Area for only $89. Once you went to Loveland and got that pass you could also use it at multiple partner resorts to get a limited number of free lift tickets at those places as well.  So the weekend right before my Tuesday infusion we went skiing multiple times. I would get colder than I usually would so I would have to bundle up with extra layers and covered up everything so there was pretty much no skin showing. I also invested in some of the hand/foot warmers and would put those in my boots and in my gloves to keep me warm, and even to this day if we’re doing anything outdoorsy in the cold I’d take those foot and hand warmers with me.

 

I did eight rounds of FOLFOX, so as I got further and further along in treatment the fatigue really started setting in and those afternoon naps started becoming almost a daily thing. My appetite went down but I was still eating okay when I went in for that last round of chemo. My hair, it definitely thinned out even my eyebrows and my eyelashes did but I started out with pretty thick hair, so to anybody that wasn’t my family it wasn’t really super noticeable. It was tough, but I knew that going through these eight rounds of FOLFOX would give me the best chance at living a long, cancer-free life so I just kept that finish line in sight. I just had to get through this and then treatment would be done.

 

Please click on the like button down here if this video gave you a better idea of what it’s like to go through chemotherapy. Also make sure that you’ve hit the subscribe button and clicked on the bell so you’ll be notified when all my future videos are posted. I know you don’t want to miss any of them. Thank you guys so much for watching!

*This video was originally published on July 31, 2020.

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

Welcome to Life As A Cancer Survivor! Today I’m going to share with you my experience going through radiation therapy which was the first step in my treatment for colorectal cancer. For those of you that are new here, my name is Jelena and in May 2016 I was diagnosed with Stage 3 Colorectal Cancer. Ladies make sure that you stick around for the end of the video because I’ll share with you some very important information that I only found out by talking with others with my same diagnosis, but it’s really important for you to hear this information if you ever want to have sex again after treatment.

As a reminder, after multiple tests to figure out how advanced my cancer was we learned that it was Stage 3 Rectal Cancer and that the first step in my treatment was going to be 28 days of radiation therapy and oral chemotherapy. I’ll have the links to the Tests, Tests, Tests video and My Treatment Plan right up here you can click on that and I’ll also have it in the description below. You can also wait until the end of this video and I’ll have the links to both of those videos pop up and you can just click on them and watch them from right there.

To receive those 28 days of radiation treatment I would go to the hospital five days a week Monday through Friday to receive it, and I would also be taking my chemotherapy pills twice a day on those days. I’ll talk about just the radiation part in this video and my next video will address the oral chemotherapy part. But before I started radiation I had a couple of appointments to go to to get me prepped for it.

Tuesday, June 7th, 2016 was my first appointment with the radiation oncologist. We were there for over two hours! I went in and filled out paperwork, then the nurses took my vitals, and then the radiation oncologist came in to talk with us and do a physical exam. He checked my breathing, he felt my head and shoulders and neck, and then he did a physical exam of my rectum to check and see what the size of the tumor was, where exactly it was located so he knew he was working off of correct information. He said that the EUS or that rectal ultrasound measured the tumor ranging from four and a half centimeters in, to 15 centimeters in. For us Americans that means the tumor was over four inches long which is like the size of an apple! That sounded huge.

He then had John and I come back to his office so that he could discuss with us the radiation side effects and also go over the CT scans. I’m not a medical professional so I had no idea what I was looking at in those scans, even when he was trying to point out where the tumor was. Then he told us that this was a very straightforward cancer and there’s a very standard treatment plan that Stage Three patients follow for it. I asked him if I could get the best treatment here in town or if I should travel to another city to get better treatment because I have family all across the country so I could travel and they’re near a lot of excellent hospitals. He said that if he thought that I could get better treatment elsewhere he wouldn’t have any reservations recommending me to go somewhere else because he’s got radiation oncology friends all over the country that he knows but he said that I could get just as good of treatment here as I would get anywhere else. So that was pretty comforting to hear. He sent in an order for me to get an MRI so that the surgeon would have those images and would be able to better tell where everything is laid out once it came time for my surgery.

Then he explained that over the next few days I would come in for another CT scan and then I would come in for a virtual simulation of radiation treatment before I actually began. The next day I went in for that mapping CT scan to determine exactly what locations in my body needed treated. Based on that CT scan the radiation oncologist would take about two to three days to map out the treatment plan and then I would come in for that virtual simulation, also known as a V sim or a dry run, and they would make sure that the radiation was going to be hitting the exact right parts of my body before the actual radiation treatment began.

And sure enough three days later I was back at the office for my V sim. When I was called back from the first waiting room the nurses escorted me too the second waiting room where I would actually go to I was waiting for my radiation treatment every day. I even got my own special card with a barcode on it so I could beep past that first waiting area and go to the second one. And on the back of this I stuck a picture of Maelle so she could be with me for all of my treatments. On the way down to the room, they showed me the nurse’s station where they would be watching me from for my treatments. Obviously they weren’t allowed to be in the room with me, so there were monitors that had a direct feed of video into the radiation room so they could watch and make sure everything was going as planned in there and then it also had the CT scan of me and then just a couple of other monitors up there.

The room with the radiation machine and the machine itself were much bigger than I expected. The nurses helped me onto the table, then I had to pull my pants and underwear down to my knees, and they put a towel over my butt, and then they got me all positioned correctly on the table. Since I was face down on the table I never really got to see what exactly was going on, but the table itself moved up, and then it moved forward closer to the machine then an arm moved around me to take x-rays. One of the nurses comes back in, she draws an outline on my right thigh/butt area of the treatment area over there, then she leaves, more x-rays are done, then she comes back in and does an outline of the treatment area on my backside. They give me the option of just keeping the marked X’s with the little tape on them for five and a half weeks or they said I can make them permanent tattoos so I wouldn’t have to 

worry about the tape falling off. I didn’t have to worry about the tape staying on and things getting erased so I just went for the permanent tattoo. They did it right there on the table they just came in with a needle of ink stuck the needle in and just injected the ink and it’s about the size of a freckle but visible enough as you can see.

After that dry run we went down to speak with a nurse about the radiation side effects and also to get my radiation schedule which I was put down on the calendar for 3:30 p.m. every day. We had been sent that 25-minute video on radiation therapy before going into that appointment so the nurse didn’t really go over anything that was earth-shattering. The one thing I did learn was that within the first few weeks the bleeding that I was having when I was on the toilet should stop. It was also casually mentioned that the radiation therapy had the potential to put me into menopause. Potential is an understatement! EVERY colorectal cancer survivor that I have talked with that’s comfortable speaking on this topic, the women have all been put into menopause and the men cannot have kids. If you’re even thinking about potentially having kids down the road stop that radiation freight train DO NOT start treatment until you have talked to a family planning doctor or a fertility doctor to discuss what your options are. John and I were not planning on having any more kids beyond Maelle, so the discussion stopped for us right there.

June 13 was day one of my treatment. Maelle, John, and my parents all came with me to my first radiation treatment. They all came back with me to see the machine and how it worked, snapped this beautiful picture of me, then they went back to the waiting room while I hopped up on the table for treatment. As I mentioned earlier, I had to lay face down for treatment and then I had to pull my pants and my underwear down to my knees. The nurses would hang a towel over my butt so it wasn’t hanging out the whole time, but then they’d tape my butt cheeks apart so that the radiation wouldn’t build up even more and cause worse burns in any folds back there.

Now back to that gorgeous picture of me once the actual radiation therapy is about to begin that table rises and slides closer to the machine, the machine moves into position, then buzzes for about 15 seconds. It does that in that position you see here in the picture, then it rotates and buzzes me on the left side, and then on the right side, then I’m done. Here’s a picture that highlights all the areas that we’re going to be treated with radiation. My appointments are scheduled for 15 minutes each day but most of that 15 minutes is spent getting me all perfectly lined up on the table so that they don’t accidentally zap the wrong parts of me during radiation.

Every Tuesday was doctor day, so I would meet with my radiation oncologist and talk about how I was handling treatment and discuss any side effects that I was experiencing. So first doctor day was only on day two of my treatment. He said he had looked at my MRI from the day before and the preliminary results showed that my tumor was actually 7 centimeters away from the anal verge and not four and a half so sphincter preservation had a much higher chance of happening, so that was great news. He still needed to go over the official results with the radiologist but he said that the test looked promising. Otherwise, that was all we really had to go over since it was only day 2 of treatment.

Later that day I thought it would be funny if I bought some washable markers and wrote something new on my butt every day. After I thought about it a little more and realized that was gonna be a lot of scrubbing on my butt which was probably gonna get raw from radiation after a while I decided it was probably better to just do it on Fridays. I obviously can’t show you the pictures of my butt with the writing on it from each week, but I can tell you what John wrote on it. Of course, he had the job of writing all the messages on my butt because you know how hard it is to write something legible on your own butt? Not easy.

The weekly surprises were:

-Cancer Killer

-This Stinks

-Danger Exhaust (with arrows on each cheek pointing to my crack)

-TGIF

-Kiss this sweet a$$ goodbye!

The Friday before the fourth of July John had left early to go to my sister’s wedding so he wasn’t there to write anything so Maelle filled in for him and put some patriotic temporary tattoos on my butt.

Three days into treatment and my insides were already in turmoil. After breakfast, I got a sudden onslaught of cramps and rushed to the bathroom. I tried pushing out what I thought was a bowel movement and I almost blacked out on the toilet. Thankfully I did not pass out and the pain subsided a bit so that I could go to the bathroom, but then I had to go out and just lay on the couch for a while because it was still pretty painful. I also felt really tired and was taking daily naps, which for me was really unusual because I am NOT a napper. Even when Maelle was a baby I would not nap. So the fact that I was napping daily meant that treatment was already taking a toll on me and causing fatigue.

After the first week of treatment was finished I thankfully hadn’t had any more episodes where I almost passed out on the toilet, but I was still passing blood with my gas and my stools. My insides just felt a little off, not enough to prevent me from eating and it wasn’t horribly painful at all yet. I lost two pounds in that first week though, so I tried harder to focus on making sure that I was eating while I still had a bit of an appetite.

Week 2 I started getting back pain and by the middle of the week it was getting so bad it was waking me up in the middle of the night. I was also having bad cramping episodes that would just kind of lay me out on the couch for hours at a time. Week 2 was also when my appetite started to decrease. By the end of the week I had almost a constant feeling of needing to go to the bathroom all the time, but when I would go and try to push something out just blood would come out into the toilet. My pain would rotate through cramps, gas, feeling like I needed to go to the bathroom all the time, and just like my rectum felt sore all the time. The sore rectum was pretty much a constant but those others kind of rotated sometimes would last just for a few minutes other times up to an hour. They would happen often enough that I didn’t feel comfortable going out for a hike or being away from a bathroom for very long.

The pain level was kinda hovering at a 2 to a 3 on a scale from 1 to 10. One or two times though I would have some very brief intense stabbing pains that spiked probably at about a 6. I had some urgent bathroom visits too, where I had a sudden onslaught of cramps and I thought I was gonna crap my pants before I even made it to the bathroom but luckily I did make it and it was just a couple of times that that happened. Overall I was not happy with how I was feeling by the end of week 2 and was dreading another 4 weeks of treatment.

Week 3 my body either was getting used to treatment or I was just getting used to the turmoil that my insides were dealing with. I would go back and forth between having diarrhea – to being constipated and my rectum was sore feeling all the time. During my weekly appointment with the radiation oncologist, I discussed those things with him and he said that he could prescribe me a steroid suppository but I decided to wait another week before seeing if I really needed to have a steroid.

Throughout the rest of my treatment my insides were unsettled and the back pain and butt pain that I was experiencing just kept increasing as the days went by. I tried to keep running but I kept getting slower and slower and with the gas pains that were plaguing me and the blood that was passing with the gas, it made it really difficult to run. On my last radiation day, I got this cool certificate and I also got to ring the bell to signify that I was finished with radiation.

The taping of my butt cheeks must have really helped because by the end of the 28 days I had burns but they weren’t super severe. My insides though, were a different story. The burns inside my rectum felt like I had spikes in there, and even if I just walked it felt like those spikes were just stabbing the inside of me. I was prescribed SSD cream to put on the outside skin for the visible burns and I also used Dermaplast spray for instant pain relief. For the inside burning, I just used over-the-counter hemorrhoid suppositories. Even using all three of those combined I still spent a lot of time laying face down on the bed with my butt completely exposed because even clothing on it hurt too much.

If you’ve gone through radiation treatment for any type of cancer, let me know in the comments below what you used that helped relieve the burning from treatment. About two weeks after treatment finished was when I really felt like I turned a corner and started to feel better. The burns started to dissipate and that spiky feeling in my rectum had finally gone away. I learned that you definitely need to ask for that SSD cream as soon as you start experiencing burns because they’re just gonna get worse as you keep progressing through treatment and even after treatment is over they don’t disappear the next day. Also, that Dermaplast was awesome because it was instant cooling pain relief and you just sprayed it on so you didn’t have to rub any of the tender burned areas.

And that important information for women that I had to hear about from other survivors in order to even know to ask my radiation oncologist? Turns out when you’re receiving radiation treatment it’s also hitting reproductive parts including your vagina. Scar tissue can form and cause the tissue to be less elastic, shrink, and narrow. In order to mitigate the long-term effects from that you need to either use a vaginal dilator or have sexual intercourse at least twice a week for the rest of your life. No one at the radiation oncologist’s office warned me about this at all, but when I called the office to ask for the dilators they were like, oh yeah you need to use these twice a week for the rest of your life. They gave me three sizes so that I could start with a small one and work my way up because damage had been done from radiation so you have to work your way up. They were painful to use at the beginning, and I would bleed every time that I used them, but the more I used them the more the tissue stretched out. So PLEASE PLEASE be sure to ask your doctor about this if you undergo radiation treatment. I was really nervous and a bit afraid to ask the doctor about it, but this is a life-altering thing that you’re gonna have to deal with if you do not ask about it.

Next week is Thanksgiving, so I’m gonna be taking that week off. So tune in in two weeks to hear about the side effects that piled up on top of these from the oral chemotherapy that I was taking at the same time. As promised, here’s the Test video and My Treatment Plan video. Just click on either of those to watch them and if you liked this video please be sure to hit the like button so that I know you’re enjoying what I’m talking about here. And if you haven’t subscribed yet, you can click on my face right over here and that’ll get you subscribed. Thank you for watching and I’ll see you in two weeks!

*This video was originally published on November 20, 2019

*Link to My Cancer Diagnosis, Tests, Tests, Tests, and My Treatment Plan blog posts