Suzy, I certainly cannot say I blame you. Oxiplatin is a tough drug and not everyone makes the full 12 treatments.
One very nice lady on this board only did 3 Oxi treatments, because of a severe reaction to it. (she did the 5FU only)
I tried to not have it but my Onc said 'NO' then on about the 4th or 5th everything went wrong. Heart problems, heart rate 120, blood clots and severe respiratory problems, besides the regular diarrhea, etc.
Until 2002 when it was released by the FDA, 5FU is all they used.
I do know some that refused it. I'll see if I can find that link for you.
Good luck to you.
graco01

I had the same feelings as you do. My oncologist also said NO, I had to at least start with it and if there were any problems she would begin by reducing the dose and if necessary discontinue it. I'm only on my 2nd chemo - I'm currently hooked to the pump and getting unhooked this afternoon. My first treatment went very smoothly.
I did end up in the hospital on Christmas until this past Wednesday because of a large blood clot in my arm - but they feel it is due to the port implant, the colon surgery and the changes the chemo and cancer do to the body. Believe it on not the clot didn't block the port and directly from the hospital I went to the oncologist and got hooked up for this 2nd treatment. So far I feel fine, like I did last time. But the side effects do kick in AFTER you get unhooked, so I'll see how it goes. I will be on blood thinner medication at least through the entire chemo and maybe until I can have the port removed afterward to prevent any more clotting.

But don't be shy about voicing your concerns to your doctor. I can tell you now that he or she will probably insist that you at least try the oxi and see how it goes. You will also be told to stop reading online - that the majority of people who post are the ones having problems. The ones who do well rarely post. I'm not convinced that is true, since obviously I do still read this board!!!
I've got to tell you Suzy, that I've had both my pcp and my oncologist tell me that cancer changes everything about your body. how it reacts to things, how everything gets processed and how everything feels. It's like having a whole different body. Some of the things that happen to it will be due to the chemo, but many will be due to the cancer. And every person is different in their reaction to chemo. Some breeze thru and some have problems, some very severe. You don't know until you're there. And I've been told many times, by doctors, nurses and other patients that if the treatment works and I end up cancer free and (hopefully!!!) never have a recurrence it will all have been worth the trouble.

I don't know if my advice has helped you or confused you more! I can tell you that I felt EXACTLY as you feel, and still do at least a few times a week! But I convinced myself to TRY and I've got 2 done and 10 to go. Yes, I've had a complication, but it was due to the port, not the chemo. But I will continue to question my oncologist. Good luck to you with whatever your decision turns out to be. I hope I didn't make it more complicated!!!!

Suzy,
I totally agree with Rhoni, do everything you can to fight this! Start with a fully loaded weapon and down the road if your body cant handle the oxi then have that discussion with your onc. I am pretty much in the same situation as rhoni, I have completed two treatments and go in for my third next week. I have been off work for a while to recover from surgery and see how I reacted to the chemo. To date I have been plesantly surprised at how well I have felt. I will be going back to work in two weeks and think I will handle things just fine. There are a lot of scary stories out there but on reactions but there are also many of people who have done just fine. My thoughts and prayers go out to you.
:)
Kathy

For me it was the 5FU that caused more problems than the Oxaliplatin, yes I did have the tingling fingers and sensitivity to cold and in the end that was one of the factors to stopping chemo.

My advice to you would be to go for both and see how you cope with it, the more chances you give yourself of killing this thing off once and for all the better. Make sure you keep the medical staff informed of any side effects/reactions there is nothing stopping you stopping the oxaliplatin if you suffer badly with it and it is far easier to start with both and stop part way through than to try and add something in after you have started.

If it helps my chemo was on a 2 week cycle, I'd have the chem over 3 days at the start of the first week and then go to work for 4 days the following week, this involved a 1 hour drive each way and an 8 hour desk job. I'm not going to say I didn't get tired bu8t I think working helped get me through it.

Thank you all for your responses. Like Markarina my treatment is scheduled to last for 48 hours with 10 days off in between. Although I'm still out of work right now, typically I drive about a half hour one way to work every day.

I am still feeling overwhelmed. I worked thru the xeloda and radiation treatments before the surgery and I just feel like I can't do this. I'm a single parent....no hubby to help me out at home, no family in this state. My youngest child is Autistic and needs to have a structured schedule.

I will definitely think about what you all have to say. I keep going back to how they say that no lymph nodes were involved....so I'm thinking why is it necessary to do the oxi too? And subject myself to permanent side effects. It's all so depressing. :-(

Suzy,
I went thru 6months of 5fu and oxi. I did get seneitivity to cold. I still ran my kids back and forth to school and sports. I had a few complications(fever, excessive tiredness) throughout. I could not work . Try to keep positive. I know its hard. Good luck!!!!

I took the Oxiliplatin for 8 of the 12 treatments, I had to stop due to the neuropathy I started to develop, in fact the neuropathy wasn't even really too too bad till after I stopped. I started noticing that the numbness in my feet and hands wasn't going away between treatments and then I had no choice but to stop it, due to the fact that if you keep going with it the damage to the nerves could be permanent. They wanted to start me on Irinotecan for my last 4 treatments and I did refuse that, because ut causes you to lose your hair and I just didn't think I could handle that emotionally at that point so I finished my last treatments with just the 5FU! But they changed my schedule I got the 5FU, three weeks on and one week off for two rounds. This was the right decision for me, hope it was the right one. I know a girl who is 15 years cancer free and she was a stage IV and she only took the 5FU, of course back then that was all they offered. I hate that three months out of treatment I still have horrible pain with the neuropathy, but I wanted to live, I also had no positive lymph nodes and was a Stage 2A. You have to make whatever decision you feel is right for you in your heart. I did not feel too bad throughout my whole treatment I was able to do most everything, although I did not work, because I am a nurse and was not willing to risk my life with a decreased immune system by working with sick people with Lord knows what diseases. Good Luck to you.

Suzy, My treatment is the same one you would have, I sit for about 3 1/2 hours at the chemo center and go home with the pump for the 48 hours. I was fortunate not to need treatment before surgery, I was operated on exactly 2 weeks after diagnosis and had a month recovery before starting the chemo. I was a 2B, and also had a clear CT scan and no positive lymph nodes. So I was in the same kind of situation that you are in. They recommended the chemo for me because my tumor was very large and all the way thru the colon wall, they tell me how lucky I am that everything else is clear.

When I kept questioning about why I needed it, that my nodes were clear, I was told over and over, by many different doctors that there is a chance that stray cancer cells break loose and travel the body, the purpose of the chemo is to kill them if they exist. My oncologist told me to ask myself this question - If by chance I should have a reoccurrance in the future, will I then regret refusing the chemo?
After I thought about that for a few days, I made my decision. Do I still question it? Yes, I do. But it's a personal decision you need to arrive at by yourself.
It does sound like you have a "full plate"at home and after already going through one chemo I can understand you've about had it. And as much as your children need you now, they need you later too! I only have myself to worry about, your decision is way more complicated than mine. I hope you find peace in whatever decision you come to. I wish you the best, please let us know how you are doing.

I also did not want the oxaliplatin due to what I read about side effects. My oncologist reassured me that we would keep tabs on it and stop if I was having lingering neuropathy, and we dropped it by20% after number three. Another 10% after six and I stopped after ten. I have very little tingling after three months, a bit in two toes and the tip of one thumb when I have a temperature change. I worked three days a week through the whole thing. You could try it and then quit if it is too much for you.

Thanks everyone for their comments sharks.g. their experiences with oxy. I have had 9 oxy treatments, but cut off
3 rounds ago and need to decide to contnue or not in 2 weeks. I have all the bad side effects and afraid of permanent nerve damage.

I am almost three months out of chemo , but haven't had the oxiliplatin since August and my neuropathy from it is awful, actually has gotten much worse than last year. I may be permanently disabled because of all of this which sucks. I was a super vibrant active person before all this started and now just getting off the couch or doing small tasks is difficult for me. I wanted to live, but not like this, I guess I watch my family live from the couch.

In case anyone is wondering, I spoke with my oncologist again and asked (again) if my odds of living longer would improve by taking the oxi with the 5-FU. He said that there are no studies that show anyone lives longer....or has a lesser chance of a reoccurance.

I asked him....then why would I want to take this? He said, it's standard treatment right now for colon and rectal cancer and if I don't take it....and then one day get cancer again....I may have a lot of regret that I didn't go the more agressive route.

So I said NO.

I was so relieved when I walked out of his office and for the first time since my surgery I thought "I can do this".

I am going for my 3rd infusion of 5-FU next Monday. Side effects so far are a slight headache the night I have the treatment and very little nausea....for which I pop a pill at the first sign of queeziness.

The nurse that administers the chemo noticed my relief right away and said to me that for years the 5-FU was all they had. She seemed to think I would do very well with the treatment and is genuinely happy for me.

Last week I met one of the PA's on the staff that I had not met yet. I told her this story and she congratulated me for making such an informed decision. She said most people just say they will take whatever the doctor wants them to.

I knew that the combo was not going to work for me and my family. I was terrified of permanent damage that would prevent me, as a single parent, from supporting my family. I am so very happy with my decision and confident that it's the right one for me.

I wish everyone who has replied much luck. I encourage you to try not to make decisions about your cancer that are motivated by fear. Please continue to pray for a cure and treatments that aren't disabling. And even more important, spread the word about prevention....so that others won't be idiots like me and put off a colonoscopy that is necessary.

my dad had 8 cycles of oxali paired with xeloda. he had no complications at all except for the numbness.you just have to think positive suzy and pray.be strong....

I'm glad it went so well for your dad. I chose not to take the oxi....I'm a single working mom....I work on the computer and I didn't want to risk being unable to support my family. It's also the middle of winter here in NH. You didn't say if your dad had to work thru his treatments and how he tolerated the freezing temps outside, cleaning snow off his car? I don't have anyone to care for me....no family in this state it's just me. So I made the best decision for me & my children and I am very happy with it. And surprisingly, I have received a lot of praise from the medical staff at the oncology clinic for my efforts in becoming informed enough to make this tough decision. My goal is to get the most out of the years I have left...I think I can acheive that now. Thanks for your response Samsdaughter!

Hello, I am new and came across this board. I just started adjuvant treatment with folfox and oncologist wants me to go 12 rounds. I have been researching quite a bit for over 3 weeks and from the most recent medical studies and papers written, I think Oxaliplatin does help kill cancer cells to a degree but it also greatly affects other organs in your body and remains in your system for years since it is a metal based drug. I switched oncologist because the first one basically wanted to scare me, I am not scared of dying, I am scared of living miserable. I had partial colectomy done almost 3 months ago, 4 positive lymph nodes, all CT scans came back negative up to when I started my treatment. I have done two rounds of folfox with Oxi but I plan to stop after 4, I don't want to wait until I have grade 2 or 3, by then it is likely too late. I have not had any of the side effects so far even after disconnecting, very mild fatigue day after disconnect. I am working full time, walking/jogging three times a week for about 2 miles. I was running 3-4 before but I can't do that right now, still something better than nothing. I have not gone to the gym to avoid getting sick since there are germs everywhere but I am doing light weight at home.
I have also decided to not do the 12 cycles and will stop at 8, I told my oncologist from the start that I felt very strongly against chemo but was only doing it because my family wanted me to increase my chances of not having a recurrence. My family has no history of cancer dating back to my great grandparents on both sides. My was a polyp that grew over time into a cancerous mast, I did not have any symptoms until it blocked my intestine which resulted in pain and going to the hospital. I understand most oncologist follow the standard procedure but remember that it's your body and life and nobody knows it better than you. I made the decision to cut it short because I strongly believe I do not need it. Research has shown very little benefit going 4 extra cycles from 8-12 but much greater risk of permanent side effects. There are current studies which won't complete for couple more years to find if the full 12 cycles are really needed due to the high number of patients which are affected by the side effects.
I would like to hear from anybody who refused Oxi and still kicking past the 5 year mark. Has anybody heard of the GCC-B1 test or immunotherapy? I feel that my body will suffer permanent damage from the chemo but to what degree I do not yet know until years later. My oncologist said there is no way of knowing if I do have cancer cells or not after surgery, I could be taking folfox and just killing my healthy cells, I think there may be some cancer cells which should be gone with 8 cycles. I recommend anybody does research and read the latest medical studies, your oncologist can't argue with those facts. Also, look into calcium and magnesium infusions to lessen the Oxi side effects, studies have shown to significantly reduce them.