Folfox4

Mooya
Mooya Member Posts: 2
edited April 2012 in Colorectal Cancer #1
I am new to all of this. I was diagnosed with colon cancer in February(2012) and already had surgery. It was stage 2 with no involvement of the lymph nodes. Docs are suggesting 6 months of Chemo on the following regimen - Fluorouracil, Leucovorin, and Oxaliplatin - every two weeks.
Has anyone been on these drugs? Can you share how you felt? I am the director of a non profit agency. I am trying to see how reasonable it is to believe I will work full time and wonder about what people are calling the "chemo brain."
Any stories or guidance?

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Hi Mooya
    Sorry to hear of your dx but it seems you found iy earlier than many do. Stage II is nothing to sneeze at but it beats Stage IV by...two stages!
    Most people who choose chemo do FOLFOX. It's been found to be the most effective. Everyone is different but I worked through my chemo. I would start it on Friday, then it involves having to continue the chemo for another two day via a pump that you wear and I was able to function fairly normally. Usually, a nurse would visit my home to disconnect the pump.

    Chemo brain... It's something that not everyone experiences but it's not uncommon. It's not like one becomes unfunctionable but it can cause temporary memory loss and/or forgetfulness. I found I needed to write things down more to remind myself to do something. Once off it things were back to normal for me.

    I don't see why you couldn't work but you may want to lighten your load if possible. Sometimes things like doing math in my head were challenging. Everyone is different.

    The oxalipatin is probably the harshest of the mix. It causes sensitivity to cold that effects what you touch and what you eat. It often causes neuropathy (numbness) in your extremities which usually lessens or goes away. Some have mild to serious long term numbness. Again, it's up to the individual.
    I hope this helps. Sorry you had to wait two days for a response.
    -phil
  • info_at_RCT
    info_at_RCT Member Posts: 2
    Dear Mooya,

    I'm sorry to hear about your diagnosis.
    I am an employee at a non-profit organization that provides reliable information on cancer therapies. If you need more info on these (or any other) drugs or therapies, take a look at our website:

    - fluorouracil: http://www.reliablecancertherapies.com/therapies/5-fluorouracil
    - leucovorin: http://www.reliablecancertherapies.com/therapies/folinic-acid
    - oxaliplatin: http://www.reliablecancertherapies.com/therapies/oxaliplatin

    We also have a Guide for Patients with colorectal cancer: http://www.reliablecancertherapies.com/cancers/colorectal-cancer

    I hope this information can help you in making the right treatment choices.
    I wish you all the best.

    Jessica
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Stage 2
    Hi Mooya. Sorry I didn't see your post earlier. I usually try to respond to stage 2 questions because that was my diagnosis also.

    I'm sure your doctor told you that with stage 2 there is a lot of "grey area"...in other words, they are still not very clear as to whether chemo is the best approach for all stage II's.I personally elected to have chemo because knowing myself if my cancer recurred I'd have been kicking myself in the butt for not having it.A lot of the decision is based on how large your tumor is, how good the margins were, how many lymph nodes were taken out, age & general health, etc.

    The regimen you mentioned is called Folfox and is usually the first line for colon cancer.It can be a tough experience for some, easier for others. The side effects are for the most part treatable. You will probably be seeing your oncologist and onc. nurse every 2 weeks while on Folfox and be sure to discuss every side effect with them. The dosage can be lowered if needed, or if it becomes too much for you there are other medications such as Xeloda which seem easier for some. With stage 2 we usually have more options. I only made it through 5 Folfox treatments and was taken off because the neuropathy became too severe and I finished my treatemnts taking Xeloda only.

    Continue asking questions & welcome to our forum.Wishing you the best.

    -Pat
  • tommycat
    tommycat Member Posts: 790 Member
    Hello and Welcome~
    Folfox, like all chemo, is cumulative. After my first couple rounds I didn't feel so bad, but by the end I was shaking, had horrible diarrhea and was injecting a drug daily to get my WBC counts back up.
    You may be able to work; you may not. Perhaps you could plan on working, but have a Plan B in place if the side effects become too bothersome?
    Take Care~
  • joemetz
    joemetz Member Posts: 493
    folfox + others
    Greetings

    sorry to hear your news of cancer. yes, it stinks big time... be thankful you are stage 2. Many people don't have any symptoms and its not found that soon. From what i have learned (and I am NOT a doctor or work in the medical field) it seems to be a slow growing cancer with minimal ways to find it. So, first celebrate your good news.

    Now, on to the treatment... you're on a fairly common cocktail of meds. I am on a similar list of drugs as you, Folfox-6, Leucovorin, Oxaliplatin, 5FU and Erbitux. I am stage four with 20+ mets to the liver.

    I have been taking this list of drugs for 3 days, every other week... plus 1 day on the off week for the Erbitux. My side effects include very dry skin, sore hands and feet, cannot touch anything inside the fridge or freezer do to cold stinging through the hands. Same with feet... gotta wear socks, and often a blanket and slippers.

    my blood counts have been okay, but early on i was enimic and had very low hemaglobin counts. I have lost a bit over 40lbs in the first three months... but my weight has balanced out now and am no longer losing weight. Seems like my complaining of my various symptoms and nausia has helped the doctors and onc nurse to help with various pre-meds for the nausea problems.

    also, for me.... my blood pressure has reduced greatly. from what i've learned, low blood pressure happens to several on chemo. but, not sure if the low blood pressure is directly related to the weight loss... or to the chemo or both. But, with low blood pressure it affects dizziness and balance, and black outs or fainting. I have to be cautious with getting up or standing up too quickly.

    Watery eyes, bloody nose, diarea are also some side effects that i've had.

    as for work... again, remember i am stage iv... I was able to take a leave of abscence from work for a few months. I needed to reduce my stress and begin to truly worry and take care of me. So, I went at this with no plan of working for the first 2 months and i focused on relaxation, mediation, prayer and writing. It has worked for me as we are getting very good news with the results of my chemo treatments.

    the largest 8 leisions in my liver have all reduced in size from 35-50% of their original size and the 50 "micro leisions" or tiny spots on the liver and no longer visable.
    so, once i knew the treatment was working... my mind got better and i was able to begin working about 15-20 hours a week on the 3 day chemo week and i'd work 20-25 hours on the one day chemo week. Again, my focus is to continue to eliminate stress from my life. I feel its very important to my healing process.

    oh yeah... one side effect i've had is my emotions. I am a "type A" person and emotionally i have high-highs and some low-lows. But, i rarely show my lows to many people. Just my wife. She's the only one besides my sisters who know just how scared i was in the beginning. So, i am on some emo-pills to fight the depression.

    and one more... at times i've hard a hard time sleeping or should i say staying asleep at night. so, i had to ask for some sleeping pills. they work and a full nights sleep is very helpful through this process.

    as for Chemo brain... i had that for awhile, and at times my mind does drift off... i "blame" my stupid reactions or low emotions to some events as chemo brain. So, use that one as an excuse when the time is right.

    i wish you the best, and hope to help in your journey.

    my best

    joe
  • Mooya
    Mooya Member Posts: 2
    Thanks
    Thanks so much for responses. I see the oncologist again in Wednesday. I'll keep you posted.
  • taraHK
    taraHK Member Posts: 1,952 Member
    Varies
    I was able to continue working but I have a flexible job and was able to work some from home. You do need to be prepared to be tired. Is there somewhere at work you could take a nap at lunchtime? I became quite good at that! If not, when you come home from work, can you catch a short nap before dinner etc?

    I had some chemo brain but my short-term memory has never been great -- and it seemed to be occurring at a time when many of my friends (not on chemo!) were experiencing similar symptoms. I went through more post-it notes that before! and found myself mumbling to myself as I walked down the hall, to remind myself why I was walking down the hall.

    The cold sensitivity of oxaliplatin is a pretty universal symtom. You will not want to touch cold things from fridge or freezer or to drink cold fluids for at least a few days after chemo. Mine only lasted a few days. You may experience a "first bite" symptom -- something like a painful jaw spasm as you eat your first bite of food. Lasts a couple of seconds.

    Symtoms vary widely, of course. I found it manageable.

    Good luck!

    Tara
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Welcome
    So sorry that you had to experience what you are going through. I've been through the treatment that you are going through and althoug not easy you can do it. Don't touch anything cold or drink anything cold either. Oxy will make your body hate the cold. Just wanted to welcome you to a great board but hate that you have to be here. You will find much information here. Please post often to let us know how you are doing.

    Kim
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    Welcome
    Sorry to hear about your diagnosis. At the same time welcome to the CSN family.

    I read about other's experiences with FolFox before I started treatment. I also asked a lot of questions about the side effects. A lot of Docs do not want to plant seeds in their patient's heads about which side effects are going to affect them. Trust me I got them all at various degrees.

    Nausea, diarrhea, numbness, cold, etc.... Things to prepare for Cold things will feel like they are subfreezing, frozen things will feel like they are burning your skin cold. I got a pair of "Ove Gloves". They are Kevlar Oven mitts and often used by Chefs to protect them when chopping. I received a Foam Cover like one uses to keep a can cool at picnics. I used this for a glass of water. Cool did not hurt me, but cold burned my throat. Toilet Paper and Alcohol free baby wipes are a must. Ask your doc for a prescription hiney ointment to prevent rash and burn. That was one of the worst side effects. (Nupracainal worked also.) Things will taste different. Ginger for the Nausea was a must for me.

    It has been almost a year since Chemo for me. I still have numbness in my feet, and a slight loss of feeling in my hands. I am finally warm again! My hair line came back. My skin is still real thin, and my nails are starting to get thicker again. So, the side effects will eventually subside. I look at it as a new normal.

    My advice is to be ready. Adjust your diet for the best nutrition that you can have. Electrolyte replacement, and drink fluids as much as you can. Dehydration was a factor for me. I drank 6 liters a day, and dehydration was still an issue. Exercise as much as you can. I walked and when able hiked a lot. My dogs loved it! It got me out of the house, made me feel better, and was a bit social. When I would feel really bad, I still would get out and walk for as long as I could. I always felt better after my walks. I know some friends could not take the smell of food. I was just the opposite. I loved the smell of food, I just could not always eat food. For me, Rice, Bananas, Gatoraid, and Ginger was consumed a lot.

    Best Always, Mike