First two days of cycle are tolerable with the steroids and antinausea drugs given with chemo but neuropathy has become worse each time. The runs on days 3 and 4 are not too severe and appetite loss on those days also just keep me pumping fluids alone. Then the stomach acid burning starts and I crave fat. The fat actually seems to coat and protect from the burn. First thing I eat then is usually bacon or fried chicken. Weird intolerance to cold is present and I keep gloves near the fridge to handle food till it’s heated. More tired and weak each treatment, seems cumulative. Vertigo and neuropathy became so severe that after my fourth cycle they increased the chemo interval from two weeks to three. One thing that has helped with the neuropathy is Recancostat. It contains a precursor of a chemical neurotransmitter. It is available OTC and pricey but it does help. I took two before starting my last cycle and it seemed to prevent the severe swelling in my throat that had inhibited breathing after the last two cycles and previously required emergency oxygen. It had helped before but I had taken it after the symptoms started. It took about a half hour to start to work when symptoms were in progress. I also take “Calm,” a magnesium supplement that seems to help with vertigo and relaxes muscles. B-12 shot also seemed to help. If you have a bad taste in your mouth from chemo, try using plastic utensils rather than metal. I was exercising regularly when I started chemo but am too compromised currently to do much. This is problematic. I am sleeping well and in little pain, blessings. It’s been 2 weeks since last cycle started and I will have one more week to recover before starting my number 6 cycle. Previous to starting chemo I had my ascending colon with 6.5 cc mass removed. 22 biopsies of surrounding lymph nodes showed 2 with stray cancer cells. They say I’m stage 3.5-3.75. I think this whole regimen is a dice roll but it’s the best chance we have right now. I’m pretty sure, down the road, we’ll all be saying, “Can you believe we used to treat cancer by slowly poisoning people.” Hoping some of the new treatments using the immune system to target the cancer will be available soon to all, in case we need another round. I’m sure there has to be a better way than this. Good health to you all from a well traumatized patient trapped in her frozen north country prison.
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Regimen Information
For FOLFOX, including Side Effects
FOLFOX
Drugs in this Regimen:
How FOLFOX chemotherapy is given and possible side effects.
FOLFOX for the treatment of Colon Cancer
FOLFOX is the acronym for a chemotherapy regimen used in the treatment of colon cancer.
DRUGS IN THE FOLFOX COMBINATION:
FOL |
= Leucovorin Calcium (Folinic Acid) |
F |
|
OX |
Chemotherapy is often given as a combination of drugs. Combinations usually work better than single drugs because different drugs kill cancer cells in different ways.
MOST COMMON SIDE EFFECTS OF FOLFOX
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Risk of Infection
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Diarrhea
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Mouth Sores
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Hand Foot Syndrome
For more information, see the 'Expert Resources' tab below.
Community Responses
Often, the most helpful information regarding treatment side effects comes not from clinical brochures, but rather from other patients like you. We've collected the most helpful community resources to help you prepare for the side effects and coping tips for your chemotherapy regimen.
What side effects did you experience while on this medication?
The following have been voted the 3 most helpful responses to this question.
I am about to do treatment #6 of 12, so far I get a sore mouth with lots of watery saliva that is difficult to spit out because it is so thin. A bad taste and a feeling toxins are leeching out of my mouth and tongue, I don’t like to swallow this as I believe if it’s coming out why swallow it back again. Pins & needles when I hold something cold and pins & needles in my throat when I drink a cold drink although these symptoms usually last about a week and I feel god for a few days then it’s time for another treatment and start feeling sick all over again. My hair is still intact and there may be some slight thinning but it is not noticeable.
Dizziness/fuzzheadedness are a significant side-effect I’ve had and the best thing to do I’ve found is hydrate, hydrate, hydrate!
I had stage 2 colon cancer with a mass, no lymph nod. And just about every side effect from chemo. I ended up in the hospital 10 days after my first treatment because of fatigue and a fever of 101.9. I’m on an antibiotic and have been instructed to missed my 2nd chemo treatment because my body is not handling it very well. I feel like its gonna kill me before any rogue cancer cell..is anyone else going through this? I’m thinking I may stop chemo.
Have had two cycles of the treatment and will have the third in three days. So far, the side effects have been minimal. Fatigue the first few days after the treatment, metallic taste, slight hair loss and mild constipation cured with prune juice. I know everyone reacts differently but if the side effects remain the same this is very tolerable. I have had some chemo brain that is bothersome but tolerable. At times very irritable and unfair the way I treat my family. I exercise 1 1/4 hours every day and I think that helps.
I am about to do treatment #6 of 12, so far I get a sore mouth with lots of watery saliva that is difficult to spit out because it is so thin. A bad taste and a feeling toxins are leeching out of my mouth and tongue, I don’t like to swallow this as I believe if it’s coming out why swallow it back again. Pins & needles when I hold something cold and pins & needles in my throat when I drink a cold drink although these symptoms usually last about a week and I feel god for a few days then it’s time for another treatment and start feeling sick all over again. My hair is still intact and there may be some slight thinning but it is not noticeable.
I get horrible runs. Limotil and imodium ad are magical. To prevent this, take 2 limotil 1hr prior to start of chemo sessions. Also drink lots of tonic water,diet, mixed w fruit juice. Replenishes potassium.
I also fight fatigue. I take the day after chemo off from work to rest rest rest, and I take long naps on the weekends. Sometimes I sleep and read in bed all day on Saturday. But I am still working!!!!
Am about to do round 5 of 6. No mouth sores. Thinning hair, CBC’s every week come back normal. Can’t pick up ice right after treatment and feels like a piece of metal is in throat when I drink anything cold. These feelings go away after 24 hours. Only nausea is when pump is removed and I’m down for about 36 hours.
I have completed 7 of 12 treatments. My side effects have been:
Diarrhea- lots and lots of it.
Cold sensitivity- last for about 6 days.
Mouth and nose sores- regularly
Nausea- frequently
Peeling hands and feet: on and off
Hair thinning- have lost about 2/3 of my hair.
Menopause ?- Haven’t had a period in 3 months.
Fatigue – lots
Chemo Brain- off and on
Nose and Rectal bleeding- frequently
Hemorroids-
I have completed 2 out of 12 treatments. Side effects have been; fatigue, neuropathy, constipation, brain fuzziness. These are the side effects that I can see/feel, my biggest concern is what I can’t see and what damage is being done. I have decided to not return to chemo and monitor/treat with an herbal regimen. Any others using herbs?
I just completed 4 of 12 treatments.. The first 2 was very tolerable but after the 3rd therapy I almost decided to quit. #4 was easy again. I feel fatigueness the first week but I exercise for an hour each morning. I think it is the best way to handle the fatigue, somewhat it restores energy.
The taste in my mouth is a big problem. I feel I have to suck candies, Halls all the time and I chew a gum. Food is a problem as well, I never know what I am in the mood for and how it will taste.
Drinking water became difficult but I force myself, I know I have to hydrate my body and get rid of toxins. I eat tons of fruits each day, I do not get constipated or diarrhea.
My strongest advise is to cope with this chemo therapy is #1 you must EXERCISE, go for a.walk 1 hour each day, eat lots of fruits and vegetables, no matter what drink lots of liquid
2 down, 10 to go. Rash on face morning after chemo. Infusion pump for 44 hours, happy to get taken off. 3rd day nausea sets in, little appetite. Well hydrated, depressed, tired. Walk smile several times a week. Getting stronger. Learning experience everyday. Board! Wish I could go back to teach soon.
I haven’t started chemo yet, but am taking notes on what to do when I have to deal with side effects. Thanks for all your comments for me to learn from. One question I have is: Are the side effects worse on day one, two, or three? I’m trying to plan my work week.
I actually took 6 sessions of a light chemo, every Thursday for 2 hours, because I was skeptical about this Leucovorin chemo that doctor insisted that I needed even though I was told that the stage 3 colon cancer was no longer in my body after the surgery, by the surgeon and the chemotherapist. I felt perfectly heathy and all my vitals we great, CT Scan, PET Scan all negative. Well last week I began this new more aggressive chemo on a Tuesday. After 3.5 hours I was then connected to my port and given addition chemo to take home for 2 days. After being disconnected and receiving more fluids and released. That evening I had severe diarrhea, nausea, cracked hands, and feet, dry mouth. I was ill the whole weekend and on Monday I called my chemotherapist and was told to come into office. I was then administered additional fluids of Dextrose and Saline and sent home feeling fair. That evening the diarrhea did return, and now blooding nostrils. Tuesday I was sicker that sick. Wednesday during the early am about 3, I decided it best to go into the emergency room at my doctors hospital. They immediately admitted me and began giving me fluids because my body was totally dehydrated. I spent 2 days in the hospital and released Friday afternoon and told to rest and drink plenty of fluids. Well I’m done with chemo and will now take a more holistic, juicing and vegetarian approach. I can’t take another 5 sessions of this.
First two days of cycle are tolerable with the steroids and antinausea drugs given with chemo but neuropathy has become worse each time. The runs on days 3 and 4 are not too severe and appetite loss on those days also just keep me pumping fluids alone. Then the stomach acid burning starts and I crave fat. The fat actually seems to coat and protect from the burn. First thing I eat then is usually bacon or fried chicken. Weird intolerance to cold is present and I keep gloves near the fridge to handle food till it’s heated. More tired and weak each treatment, seems cumulative. Vertigo and neuropathy became so severe that after my fourth cycle they increased the chemo interval from two weeks to three. One thing that has helped with the neuropathy is Recancostat. It contains a precursor of a chemical neurotransmitter. It is available OTC and pricey but it does help. I took two before starting my last cycle and it seemed to prevent the severe swelling in my throat that had inhibited breathing after the last two cycles and previously required emergency oxygen. It had helped before but I had taken it after the symptoms started. It took about a half hour to start to work when symptoms were in progress. I also take “Calm,” a magnesium supplement that seems to help with vertigo and relaxes muscles. B-12 shot also seemed to help. If you have a bad taste in your mouth from chemo, try using plastic utensils rather than metal. I was exercising regularly when I started chemo but am too compromised currently to do much. This is problematic. I am sleeping well and in little pain, blessings. It’s been 2 weeks since last cycle started and I will have one more week to recover before starting my number 6 cycle. Previous to starting chemo I had my ascending colon with 6.5 cc mass removed. 22 biopsies of surrounding lymph nodes showed 2 with stray cancer cells. They say I’m stage 3.5-3.75. I think this whole regimen is a dice roll but it’s the best chance we have right now. I’m pretty sure, down the road, we’ll all be saying, “Can you believe we used to treat cancer by slowly poisoning people.” Hoping some of the new treatments using the immune system to target the cancer will be available soon to all, in case we need another round. I’m sure there has to be a better way than this. Good health to you all from a well traumatized patient trapped in her frozen north country prison.
My fiancé is having severe, unrelenting diarrhea x 8 days now (following treatment #5). Also bad nausea. We have been in for IV fluids twice this week. We cannot get on top of this. He’s lost 11 lbs in a week. In a day he’ll have a half banana, 1-2 spoonfuls of applesauce or canned peaches. Can’t drink more than a sip of anything every so often. He’s terribly weak (surprise!).
Any tips???
Addendum…
Lomotil, Immodium, Zofran, Compazine, Marinol not cutting it!
I had my sigmoid colon removed,and few sections of my large intestine also,along with46 lymph nodes.lymph nodes showed negative,and my pathology report says stage2c.I have been taking folfox chemotherapy,I completed 7 cycles,only side effect I have is severe diarrhea,now I have planned to take oral chemotherapy for the balance cycles.
I’ll second the majority of the post made on Dec 2, 2014, except that I didn’t need / experience anything requiring emergency oxygen, and I personally haven’t tried the Recancostat (the poster is right — it is PRICEY).
As of a few days ago, I’m halfway through a 12-cycle treatment with the modified FOLFOX6. I’m trying to maintain my normal full-time job but it’s tough with the fatigue and majorly severe tension (???) headaches that I get from the Oxi and also the Zofran I take to combat nausea.
I’m on FOLFOX and soon to have infusion #6. I also carry a portable infusion unit from Wed (chemo day) to Friday (say good-by to your bag-buddy day). I’m a stage 3 colon cancer patient. The tumor was removed surgically but 3 of 15 lymph nodes showed as being cancerous in the post surgery pathology report. The side effects I’ve found so far have varied from one session to another. By far the most consistent has been exhaustion. It usually hits me on day three and may last through day 8 or 9. I walk twice a day, and keep a lid on my expectations. I used to be very active, but found it a bad idea to push too hard during this treatment. Nausea comes in number two on the unwanted side effects list for me. Zofran was useful initially (and still is) but I’ve had to bite the bullet and get the Sancuso patch. While very pricey, it’s been a lifesaver for the nausea. Ir still plagues me, but not not as intensely as before. Number three would be either diarrhea or constipation, both of which have hit me during one session or another. For these I take the usual OTC remedies, which seem to at least help a little. These clear up quickly when I reach the “recovery days”, normally days 9-13. My favorite time. Next would be “chemo head”, which is very disruptive of my normal life. Much of that life involves technical work, which is difficult to impossible when the brain fog sets in. I tend to be very distrustful of my decisions during that period, and try to avoid making any at all if possible. Finally, I do get the cold-sensitivity and neuropathy. I take gloves along now on my walks, and drink mainly water at room temperature. I have some neuropathy in the feet, but nothing too severe so far. One final note: I’m also diabetic, so the steroids I’m given on chemo day to help with the nausea also spike my blood sugar considerably (400+). I try to hold it to a dull roar, down in the 250+ area, by taking large insulin doses but for about 3 days following infusion it is very sensitive and will spike after eating almost anything. Thankfully, this does go away and my insulin needs return to normal.
Like other posts have said, it looks like the treatments aiming to enable the body’s own defensive systems work against cancer are getting closer. My hope is that by the time my grand children are grown, chemo will have become one of those “unpleasant-but -best-we-could-do-at-the-time” treatments. I’m just thankful that it is available now, and may help r
I’m starting the FOLFOX treatment regiment in the next few weeks for stage III Colon Cancer. Surgery is complete and went very well, out of the hospital in 48 hours. I’m feeling good now, better than before the surgery, but am quite worried about the chemo regimen and associated side effects. I plan to work throughout the treatments as much as possible but am not sure what to anticipate and would like to minimize the side effects if possible with proper nutrition / supplementation etc. and would appreciate any helpful advice. I have a rather rigorous work schedule.
I have all of the above side affects. Was Diagnosed with stage 3b. However No cancer cells found in lymphnodes or any where else? Tumor was size of Wallnut.
I am 1 week away from #6 treatment. Not sure I can handle anymore beyond 6! The pain in saliva glands brings tears…… every time I eat.
I just finished round 12 (last one) of Folfox after surgery resection for colon cancer. They stopped the Oxaliplatin after 8 rounds as they found it didn’t help that much and would continue to cause more nerve damage. I did have cold sensitivity on hands and feet for 4-5 days after the infusion. Near UV lamp and hot air hand dryer at work helped a lot. Other than a couple of canker sores and some days with a bit of nausea (usually 7-10 days post infusion) it wasn’t bad and I continued to work full time etc. Never really felt fatigued (always surprised the Oncology staff). The Folfox will go after the cancer but I recommend talking to a Naturopathic MD familiar with Oncology protocols to help minimise the side effects so you can get full benefit from the treatment without tanking along the way.
Have been off of full course of FOLFOX with the Oxaliplatin for almost 2.5 years now, but on Fluorouracil, Leucovorin, and Avastin weekly as Maintenance Chemo. The neuropathy is as strong as ever, seems to be getting worse, not better. Have dropfoot, or Hand and Foot Syndrome in both feet. Have to wear braces to move around.
Remaining nodules in Lungs and Lymph Nodes (Colon Cancer removed, with 40% of Colon taken) have started growing again, and I started FOLFIRI yesterday, still wearing the pump as we speak to deliver remaining Irinotecan until tomorrow. I then pulled 10 hours at work today, and not sure how I did. I’m feeling what everyone else is feeling, some things not even mentioned, and yet going down for a week just isn’t an option. My mortgage brokers could care a less about my being sick.
I definitely would support taking Zinc, Manganese, Vitamin C, and Vitamin D3. It has helped quite a few blood parameters get back to normal, as compared to the state where I wasn’t on the supplements. Platelets specifically; I went from being in the high 70’s to low ’80’s consistently, added the supplements, and the number stays ver 100 now regularly.
One note of caution. Beware how you source the supplements. There are a lot of bad ones out there. I trust Sovereign Silver, Health Ranger Store, and believe it or not, Infowars Store. He may be controversial, but he frets over the quality of the supplements he sells.
This discussion needs your voice!
What were the specific side effects that you experienced while taking this medication? How did you manage them?
What coping tips would you give to new patients on this regimen?
- Maintain a positive mental attitude.
- Consider joining a meditation or hypnosis group for relaxation and stress relief.
- Keep yourself informed. Be a part of your treatment.
- Make your oncologist and their staff your new best friends. Tell them of any, and all, complications your are having with your treatment. They literally have your life in their hands.
- Concentrate on yourself, but don’t isolate yourself.
- Keep your family and close friends in the loop as much as your feel comfortable with. They will understand. You need as much support and encouragement you can get. Don’t be afraid to ask for support, physical or emotional.
- Now is a good time to rid yourself of toxic relationships through relationship reduction. Toxic relationships will just drag you down.- Stay as active as possible, but don’t drain yourself.
- Eat well and get lots of rest.
This discussion needs your voice!
What do you wish you had known before taking this medication? What information would you like to pass on to patients who are beginning this medication?