• Side effects

    Asked by emtp12 on Monday, November 7, 2011

    Side effects

    From by basic understanding, I will be reciving either folfiri or folfox unless a trial method is found, can anyone tell me about the side effects I have seen mixed reviews. I understand it can be quite different for each individual. Just trying to arm myself ahead of time.

    7 Answers from the Community

    7 answers
    • bobhess' Avatar

      Hi empt I'm Bob and I too have stage iv colon cancer; and our diagnosis seem to be the same. My cancer had spread to lymp nodes and outside lining of my stomach. I had surgery in Jan. of 2011 and started chemo in Feb. My chemo was folfox .a combo of oxialplatin,lucorvoran,and 5fu. Please forgive the spelling of these drugs,but I'm sure you will know what I mean. I was given treatments once every two weeks, for 12 weeks totaling 24 weeks. I was informed of the possible side effects by the staff at the hospital and given tons of literature about my treatment. Side effects for myself have been fatigue,mouth sores,and neuropathy (numbness of the hands and feet). I believe it is important to remember that side effects vary in each individual and are dependent on many factors age general health ect. Despite the side effects which we learn to deal with life is good. In your post I see you also talk with our greatest healer,GOD. I've found this to be the greatest of all in my journey with this disease for His direction is the greatest and faith truly does replace our fears. Good luck with you journey and may God bless!

      PS had a cat scan in mid Oct. no sign of cancer,thank you God and all the staff at Sara Bush Cancer Center here in Mattoon Il. they are truly the greatest!!!

      almost 5 years ago
    • Bonjean184's Avatar

      I am also a stage 4 metastatic colon cancer patient I have been in chemo for over 1 year now. I started out on same regimen as Bob. I took a chemo holiday in April and during that time the neuropathy in my hands and feet worsened. After my holiday (and honeymoon) my dr discontinued the oxalyplatin and my CEA numbers soared. Ct scan shows no real change in the tumors so he added irenetcan. I am still dealing with the neuropathy, for which there is no cure as I understand. I did have some hair thinning, constipation, occasional mouth sores but no nausea since the first month.

      I feel blessed that I can tolerate the drugs so well, it just gets really old and tiring, I would live to Just feel like myself once again. Chances are that I will be in treatment for the rest if my life
      Good luck to you

      almost 5 years ago
    • mamajltc's Avatar

      Hi My husband is in his 3rd round of chemo for stage 4 colon cancer. It is no longer in his colon (surgery to remove it) but in his lungs. He has had similar experience as Bonjean 184. And was told, also, that he will be in treatment for the rest of his life. The nausea was controlled by meds...and this is great that they are now available and work. He does have a colostomy bag. The main side affect has been diarrhea and exhaustion....but definitely not every day.His diarrhea is controlled with over the counter meds and he now knows when to begin to take them so it remains under control. He is also on Ritalin, as needed, to help with the exhaustion and it has been great! He also gets as much moderate exercise as he can ( note-he is 67)...even if it's doing the grocery shopping (he walks up and down each aisle)...and we take short walks when we can...this also gives him an energy boost. All in all, he is doing great...and we have learned to live day to day. The one thing we do not do, is we don't plan things if we don't have to. We have to do appointments and other things, but friends and family know that we cannot commit to everything (he is home full time..and I work 50 hours/week.and I'm 51), should he have a tough day.
      Best of Luck!!!

      almost 5 years ago
    • abrub's Avatar

      I had 7 rounds of Folfox. Watch out for cold with Oxaliplatin. I used plastic flatware - metal hurt. A rare, but real side effect, also from Oxaliplatin, is first bite pain, where you feel like you've been hit with lightening in your jaw on your first bite of food. Subsequent bites are okay. This is very uncommon, but not unheard of, tho many drs aren't aware of it (I had it.) Yes, peripheral neuropathy. Splitting and darkening of skin on hands and feet. Not much hair loss with Folfox. I understand there is hair loss with Folfiri. Most important is that everyone reacts differently. Your side effects may be minimal. I tended towards the rare ones - the ones they don't tell you about because so few people have them (tho the cold sensitivity to oxaliplatin is very common.)

      It's not going to be fun, but you'll get through it. Somehow we manage. Let your onc know of any and all side effects; they often have to modify dosage to handle toxicity. And keep asking questions.

      almost 5 years ago
    • emtp12's Avatar

      Thanks all for your responses, I start my chemo on 11/21 and am a bit aprehensive. I know God will take care of me that is not in doubt, however, this is another unkown to walk into. For a former cop and paramedic firefighter, it ought to be old hat, yet holds a certain amount of terror for me, as I am on the receiving end as opposed to the "rescuer".

      almost 5 years ago
    • abrub's Avatar

      Just a note of encouragement. Monday will be very scary for you. I know I sat there in tears as I awaited my first chemo. However, the anticipation is worse than the reality (tho the reality is no fun either).

      Ask questions, ask if they can numb you before the IV or port access. (If you have a port, request Emla Cream for subsequent chemos) and know that lots of us have been there before you, and been just as scared.

      Allow yourself recovery time, time to sleep, and accept that the side effects are part of the package you need to beat this cancer. Wishing you well,

      almost 5 years ago
    • IKickedIt's Avatar

      Another note of encouragement for you. I finished my chemo at the end of October (12 rounds of Folfox) and just received my "cancer-free" diagnosis from my oncologist this past week!

      I kept a journal to remember the side effects and to see if I could prepare myself for them. For the most part, the side effects, although they got a bit more severe (or maybe I should say intense) each round, the were the same for me every round. For example, I would get very, very constipated during and immediately after my chemo so I would know to try and counter-balance that during those first few days. But then on about the 5th or 6th day, it went to the other extreme and I could barely leave the house. I would know to lay-off the fiber in preparation for those days.

      The oxaliplatin is the gift that keeps on giving. Be honest with your oncologist about the neuropathy. I was fine for the first 6 or 7 round rounds with the neuropathy wearing off, but by the 8th round, it had gotten quite severe. By the 9th round, it wasn't resolving and my dr. took me off it fearing permanent damage. I was surprised that it kept on getting worse, but apparently that is normal. The neuropathy continued to worsen until about a month ago and now I can feel most of hands, can hold a pen again and am not dropping things as much. My feet are also starting to improve.

      Hope you are faring well, staying positive and taking care of yourself. Good luck!

      almost 5 years ago

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