One thing I’ve learned over the last few months of chemotherapy and radiation is that side effects can vary greatly from person to person. I’ve already finished radiation and 6 weeks of 5FU chemo which had some pretty nasty side effects. I had my first Folfox infusion two days ago and so far the experience hasn’t been so bad compared to multiple surgeries and wearing a chemo pump 5 days a week.
What is Folfox?
My doctor calls it the ‘big guns’ for colon cancer patients. It isn’t just one drug; it’s a combination of several things. The main drugs infused are Oxilaplatin, Leucovorin, and 5FU (Fluorouracil). I was also given calcium, magnesium, Benadryl, and Zofran for nausea. Mainly, Folfox is used in patients with Stage III metastic colorectal cancer. I am currently at a Stage II which is not metastic but I am very young and doctors are being aggressive in my treatment. My form of colon cancer is fairly rare. It’s called HNPCC and is hereditary; accounting for only about 5 percent of all colon cancer.
My Experience
The total infusion time including all medications was about 6 hours. I also had to see the doctor, have blood work done, and after the Oxilaplatin infusion was finished I got hooked up with a pump for the 5FU which is worn for 46 hours. The Oxilaplatin and 5FU have very different side effects. I notice that on 5FU I have more nausea and diarrhea, while with Oxilaplatin I have extreme sensitivity to anything cold and some vision changes. I’ve also noticed some muscle cramping in my legs and back but it isn’t too bothersome.
Cold Sensitivity
Most people that I’ve spoken to on this chemotherapy have this issue. It started with the first infusion for me. I went to wash my hands in the restroom and didn’t let the water warm up. It felt like my fingers were asleep. They tingled and felt a little painful. The air conditioning in the car made my toes feel the same way even though I had shoes on. Getting anything out of the freezer can be very painful and I recommend wearing gloves. The same night as the infusion I tried to eat cereal with cold milk and my tongue also had the tingly sensation. It felt like there were little bugs crawling in my mouth and I had to spit it out. I know that sounds gross but it’s the best description of how I felt. My daughter has to help me cook and go grocery shopping while I’m having this treatment to avoid touching cold things. I can’t drink anything that isn’t warm. I bought Gatorade and boxes of Capri Sun to leave at room temperature. I get sick of hot tea and cocoa every single day. All in all, it’s the strangest side effect I’ve had from chemotherapy so far but it is manageable. In my opinion, Folfox chemotherapy is nothing to be afraid of. It can be scary starting something new because you don’t know what to expect. Just take care of yourself and tell your doctor about your side effects so that they can be managed effectively.
Vision Issues
This issue scared me a lot. The same day as the infusion, I stood up and everything went black over the top half of my vision field. I could still see out of the bottom but it was blurry. The vision impairment lasted until the count of ten and I just held on to the wall for support. I emailed a couple of people on my friend list at the Cancer Survivors Network who have had the same chemotherapy. Apparently, I am not the only person to experience this side effect.
Folfox isn’t exactly smooth sailing; there are some bumps along the way and they may get worse as time goes by. With five months of treatment left, I’m just praying I can make it through with my sense of humor intact. This is just my personal story and I’m sure everyone experiences different issues. I thought it might help someone who felt scared and was getting ready to start treatment.
