Chemotherapy can come along with a bunch of unpleasant side effects. If you’re on a FOLFOXIRI/FOLFIRINOX regimen, here are some side effects you might experience:
Whew, sounds like a lot, right? Remember that you likely won’t experience all of these side effects — because everyone’s bodies are different.
If you ever feel like you can’t manage your side effects and symptoms, don’t be afraid to speak with your doctor about pre-meds or complimentary meds to manage them. You can also ask for a referral to the palliative care specialist or team at your cancer center. It’s important to note that palliative care is not the same as hospice care. Palliative care helps patients manage symptoms, and it can be extremely helpful for many people.
Remember that it’s important to check in with your healthcare team before starting any supplements, complementary therapies or fasting regimens. These treatments might not be appropriate for everyone — and some may even interfere with chemotherapy.
You might experience tingling, numbness, or pins and needles in your hands and feet when touching cold objects. It might feel like your throat is closing when you inhale cold air. This sensation is aggravated by cold temperatures.
Many people experience cold sensitivity with their first infusion. It can come on very quickly, within hours of receiving oxaliplatin. Cold sensitivity will most likely get better after a few days, but it can build up over time, and get worse after each infusion.
It’s important to note that cold sensitivity is temporary, and is different from peripheral neuropathy, which can be permanent! Icing can help prevent or reduce cold sensitivity.
Neuropathy is a result of nerve damage, and causes numbness, pain and tingling in the hands and feet. Unlike acute cold sensitivity, the symptoms of neuropathy usually begin after several oxaliplatin infusions, and may become permanent.
Luckily there are some things that can help improve and manage neuropathy symptoms.
You might experience pain or stinging in your jaw when you take a first bite of food or sip of a drink. Oxaliplatin can affect how saliva is secreted in your mouth. Unfortunately, icing does not usually help with this side effect.
Try starting with a small bite of bland food. Roll it around in your mouth before biting down. Then chew slowly and carefully. If you experience any pain, try to breathe through it. As the name suggests, first bite pain only happens with the first bite of food. This will become less severe as you get used to chemo, but it can increase in intensity as you reach later cycles.
This is an extremely common chemotherapy side effect. Nausea usually lasts for a few days to a week after infusion.
Chemotherapy can be very hard on the gut. Many patients on capecitabine experience heartburn.
Some patients report experiencing stomach cramps shortly after being disconnected from the chemotherapy IV.
Do you feel a bit off your game? Chemotherapy can cause a decrease in mental acuity, difficulty remembering certain things, and trouble finishing tasks. You might struggle with concentrating, or learning new skills. Usually, things get better after the end of chemo, but many changes can be permanent.
Join Cognitive Way, one of our COLONTOWN Facebook groups.
Chemotherapy can change the way your body perceives tastes and smells, causing aversions to things you usually don’t mind! These changes are temporary, and will likely go away after chemo has finished or if you have a chemo break.
Feeling tired is one of the most common side effects for people going through chemotherapy. It’s important to remember that your body is going through a lot.
You might feel anxious about your cancer diagnosis, or worried about your treatment plan. Many patients feel stressed before infusions. Managing anxiety is an important task, but it can be difficult!
When you first learned about starting chemotherapy, you might have been worried about losing your beautiful hair! However, colorectal cancer patients undergoing chemo often experience hair thinning, not complete hair loss.
Check out this link from the National Cancer Institute.
Chemotherapy can cause painful mouth sores. If you develop them, discuss your symptoms with your oncologist immediately. A dose reduction of 5FU can help.
Some people have trouble going to the bathroom while on chemotherapy. Many anti-nausea medications, pre-meds and home meds have a constipating effect.
Irinotecan can cause loose bowels. This is one of the most common side effects of the FOLFOXFIRI/FOLFIRINOX regimens. You may experience this at any point during your treatment, even up to 10 days post infusion.
When on chemotherapy and other targeted therapies, try to stay out of the sun for extended periods of time. Wear hats and protective clothing, and purchase a good sunscreen. Wear it every day — whether or not you’re planning on leaving the house!
White blood cells (WBC) are used to fight off infections. Low white blood cell counts can increase your risk of infection, and make you feel short of breath.
Your healthcare team will monitor your WBC counts to make sure they don’t get too low. If they are, your treatment might be delayed by a week or two, to give your body a chance to recover. Treatment delays should be avoided whenever possible, but they are common.
Talk to your team about any concerns you have, but know that an occasional chemo delay should not affect your long-term prognosis or the overall effectiveness of your treatment. If you are getting a 5FU bolus, dropping it can help with blood counts.
Chemotherapy will likely decrease your red blood cell (RBC) counts. This can cause fatigue and shortness of breath. Your healthcare team will monitor your RBC levels to make sure they don’t go too low. Many patients diagnosed with colorectal cancer may already have anemia due to iron deficiency from tumors in the gastrointestinal tract bleeding. Chemo can worsen preexisting anemia.
Chemotherapy drugs can cause your platelet levels to drop. Platelets help your blood clot — so low levels can cause bruising, nosebleeds and sensitive gums.
Chemotherapy can cause a loss of libido. Women may experience a drop in estrogen production, which leads to early symptoms of menopause. This can cause vaginal dryness, and loss of a period. These symptoms may resolve after you stop treatment, however, they may become permanent. In men, chemo can reduce testosterone production, however it should return to normal after treatment has finished.
Chemotherapy can also affect fertility. Some drugs have a higher risk of affecting fertility than others, depending on your age and other factors. The risk of permanent infertility is even higher if you’re treated with both chemotherapy and radiation therapy to the abdomen or pelvis. Speak with your oncologist before starting treatment about any concerns you might have.
When the muscles we use to produce speech are damaged, weakened, or paralyzed, this is called dysarthria. It can be difficult to control the tongue and voice box, resulting in slurred speech. This can sometimes happen with FOLFOXIRI regimens, when oxaliplatin is given before irinotecan.
According to Dr. Pashtoon Kasi:
Apparently when one gets oxaliplatin before the irinotecan chemo, it sensitizes one of the nerves that gives nerve supply to the tongue. Irinotecan then acts on the nerve to give a sensation of dysarthria or stroke or an allergic reaction. But it’s not an allergic reaction. You reverse the order i.e. give “I” before “O”, everything then goes away.
We noted this a few years ago and our institution and several others changed their practice.
It’s a good idea to keep a journal or notes about your side effects, so you can discuss them with your oncologist at your next appointment. This can help you advocate for changes to your pre-meds and home meds as necessary. Be sure to discuss possible side effects with your oncologist, so you know what’s normal and what might be concerning. Before your first chemo treatment, you should have been given a 24-hour phone number to call in case of severe symptoms.
Some of these symptoms include:
Some severe side effects may also be related to a dihydropyrimidine dehydrogenase (DPD) deficiency, which means the body can’t break down 5FU. Although DPD deficiency is rare, it does affect a small number of patients and in some can result in death if untreated. For more information on DPD deficiency, click here.
Diagnosed: July 2020
Type: Rectal cancer, metastases in liver, lungs and distand lymph nodes
After a not-so-positive experience with my first oncologist, I changed care teams in January 2021. I still remember my first appointment with my new oncologist. He told me that since I was young and otherwise healthy, he wanted to “bring out the big guns” and treat me with Folfoxiri plus Avastin. I wasn’t entirely new to the game, so I knew that this was one of the most aggressive chemo regimens around and had the potential for very bad side effects.
I remember being pretty nervous going to my first Folfoxiri treatment. They had told me that the infusion would last 6 hours. I thought it was a typo, but soon realized that I was wrong. The day started with a blood draw through my port and a short visit with my oncologist. Then I went upstairs for my infusion. First, I received my pre-meds (Dexamethsone, Aloxi and Emend). Then, I had my Avastin infusion over 30 minutes. After that, I was given Atropine and my infusion of Irinotecan over 90 minutes. Last came the Oxaliplatin over 2 hours. During the infusion, I felt pretty good. The steroids (dexamethasone) usually give me enough of an energy burst to make it through my infusion feeling ok. I passed the time watching videos and listening to audio books. I also had my heating pad with me, as I hadn’t learned about icing and was told to keep warm during the Oxaliplatin infusion.
Finally, the nurse gave me my Leucovorin over 10 minutes and hooked me up to the 5FU pump. I had never used a mechanical pump before, so I had to watch a video about it, sign some forms and was given a spill kit in case of any leaks. Before leaving the center, I had to make my appointment to come back in two days for disconnect and fluids.
So far, I have had 11 infusions of Folfoxiri (6 with Avastin) and had an excellent response, which made me eligible for colon and liver surgery after 5 cycles. Despite the fact that I was anticipating horrible side effects, in reality, they were pretty tolerable. I worked with an integrative doctor at my cancer center throughout my treatment, who helped me with tips and tricks regarding diet, lifestyle and some supplements (approved by my oncologist) to help maximize well-being during treatment. I experienced some mild nausea on the first few days after infusion, mild fatigue and cold insensitivity (until I learned about icing). My disconnect was on a Thursday and I was usually out hiking or cycling by the weekend.
It sounds crazy, but I think that making an effort to stay active during treatment really helped with combatting a lot of the side effects. I also found the use of support groups, like Colontown to be immensely helpful, both in terms of finding information and just having people around who know what I’m going through.
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