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.
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*This video was originally published on June 5, 2020