Oxaliplatin Use

k8 Member Posts: 33

I am no expert when it comes to cancer but I have read alot of history on this website and I try and stay away from the internet. I have a question which I am sure some of you may have the answer to from you personal experiences. My husband was diagnosed with MR Stage: T4 N3 which began our journey in August last year. He completed radiation and chemo 9.24.18 thru 11.2.18. Surgeon thought cancer had metastisized to his liver which was not the case. Had surgery 1.17.19 whereas rectum was removed. Temporary ileostomy bag. After surgery we were told he is cancer free. My question is: Isn't oxaliplatin use for rectal cancer that has spread? Due to neuropathy is hands and issues with feet can''t he tell his doctor to remove this drug and what do you all think. He is scheduled to have a ct scan in June. I think scan is to see if cancer is anywhere else.

Thanks, Kate


  • JanJan63
    JanJan63 Member Posts: 2,478
    I was on Folfox as a mop up

    I was on Folfox as a mop up chemo. It seems like that's what it's usually used for from what I've read. My original tumour was close to the rectum but was considered to be colon cancer. I think there ahve been people who have had the oxy portion of their chemo taken out or reduced or something else added to help with the neuropathy but I could be wrong.

    The oxaliplatin is a nasty one. Due to the side effects I have I'll never be on it again and I'm grateful for that. I've been on 4 different chemos and it was the worst. That being said, due to what it did I didn't finish the treatment so I don't know how much worse it could have been. If that's what your husband is on and he's been passing out I'd have them check into blood clots. A simple blood test to see if I'm prone to clots would have saved me a lot of suffering.


  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited April 2019 #3

    That is a common drug for colorectal patients and Jan is right, it is nasty.  Ask the doctor if they think he needs the full dose if he isn't able to tolerate it.  It is a cummulative drug and symtoms usually increase with each treatment and will last longer in between treatments.


  • Msboop15
    Msboop15 Member Posts: 83 Member

    I had a colon resection on 2/25 and was told I was stage 3b. Once did a PET scan on 3/14 because of a tiny spot on my lung. The tiny spot on my lung was was nothing but the PET showed that I had a met to the liver. So now I’m Stage 4 and they added Avastin to the 5-FU.  The plan is 4 rounds Every other week and then another PET scan to see what’s going on in the liver.

    I have had two rounds so far. Side effects have been mostly mild other than the neuropathy. The day Of the second infusion I went to use my cell phone and had an experience almost like an electrical shock. For several days I had some pretty extreme reactions to virtually anything I touched. I called the onc’s office and they said  it would probably last 3 to 5 days. On the fourth day I called because I was getting absolutely no relief and they said it might stretch to seven days. On the seventh day they said that they would reduce the next oxy infusion 20%. Well, now I’m at day 12.  The Pain is mostly gone but I still have a lot of stinging in my fingers.  I know a lot of you have had bad experiences with oxy and that it’s just nasty. I could be wrong but my reaction seems a bit extreme for only my second infusion and I’m concerned that reducing it even 20% isn’t enough. 

    Did any of you who have had a bad experience, have that extreme and long of a reaction that early?  

    Sandia buddy, I do like what you said about ”what’s the potential 5 year survival rate % gain with the oxi?”  I plan to ask that question before my next infusion.

    I check into this forum almost every day And I am so incredibly grateful that you all are here! Thank you! 


  • NewHere
    NewHere Member Posts: 1,390 Member
    Make Sure To Get Exact Stats

    I had just found a report when looking for something else, which discussed chemotherapy, but did not bookmark it.  But the information is really based on the patient (age, staging, etc.)  In my case I had high lymph node involvement and my tumor was pretty large and moved into surrounding tissue.  So all indications were things were out and about already.  I was also considered young and in otherwise good health.  Chemotherapy (FOLFOX) was a pretty easy decision for me.  During chemo there was a suspect nodule in my lung that looked to shrink.  But it was very small.  After chemo it grew and became clear it was cancer.  That was in 2015.  Had the nodule removed Fall 2016. The cancer came back (or maybe was there all along) in Winter 2017. 

     If I did not do the chemotherapy then, I may not be typing this now.  But I also had neuropathy that increased enough that eventually the oxiliplatin was dropped because the risk of neuropathy increasing/more permanent outweighed the benefits of trying to prevent a recurrence.  Even with the met and what has occurred after, I have no regrets regarding the removal of the oxiliplatin after 8 sessions because the neuropathy issue that was developing. Up to that point it would resolve between sessions, but the last one it did not.  Even with dropping it, it increased for a while.  If I continued with it I am not sure how bad it would have been.  It increased even after the last session with it for a few months.  It was bad.  4 more sessions - scary thought of how bad it would have been. 

    I am now on FOLFORI after an immunotherapy trial did not work.  It is not fun, but it is manageable.  Every other week I feel less than stellar, but then the next week is okay.  To me it is worth it to buy my time and the quality of life, as of now, is not horrific.  Not perfect, but not horrific.  I am still looking to see if I can find more information about the differences between FOLFORI every 2 weeks vs. every 3 weeks.  It has been mentioned here before that it is about the same effectiveness.  If it is pretty much the same, I am willing to shave a couple of percentage points off my odds because having two good weeks out of every three weeks would be really worth a small difference in my odds of survival. 

     So it all of the above really is just a discussion which comes down to risk/reward benefit.  Chemotherapy is far from fun and each person is going to be different in being able to go through it.  Each person, based on his or her age, particular cancer situation - staging is a broad stroke indication but there are other things to consider - and other factors may very well reach different conclusions.  The key is to have as much information as you can regard the benefit of a particular treatment for you.  For example, some people may find that reducing the risk of a recurrence from 50% to 25% is worth chemotherapy issues, others may not.  Adding or taking away oxaliplatin may move the needle from recurrence by just a few percentage points.  Etc.  So make sure to get as much information as you can and do not let a doctor not fully address your questions on this.  It is your right as a patient to ask and all questions and gets answers.  


  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member
    The patient controls the treatment

    I think it is essential to remember that the patient controls what treatments he will permit.  The doctor gives advice and the patient decides.

    With that said, I think it is the general practice to hit colorectal cancer, even after surgery, with a 5FU/oxaliplatin or Capecitabine/oxaliplatin combination.  There are countless explanations of why, one that is frequently repeated here is the "dandelion seeds" explanation (when you blow on a dandelion there are thousands of seeds ready to sprout and grow again).  One I read that made some sense to me (I do not know if it is accurate) is that a big tumor secretes substances to stop other tumors from growing and stealing its energy.  When the big tumor is removed those substances are gone and the smaller (microscopic) tumors are free to grow and become the big tumor themselves.  The chemo is intended to stop new tumors from growing--even though the big tumor may have been removed completely by surgery.

    These are incredibly difficult issues that I think several people on the board are going through right now.  The desire to live potentially cancer-free is strong, but the side effects of chemo are sometimes life-threatening or too much to bear.  I feel for those facing these choices now.  It is a very difficult and very personal choice.

    As for me, I did only one session with oxaliplatin, and then discontinued it.  I was a 3b, so my situation was different.  But you may want to ask your oncologist what percentage gain in five-year disease-free-survival your husband would get with the oxi combination, with 5FU (or capecitabine) alone, or with no chemo at all.  It makes sense to me that to make an educated decision about treatment, you should have these statistics.

  • k8
    k8 Member Posts: 33
    Thank You For Sharing

    Thank you for sharing your personal experiences with me. It means alot to help me understand the choices my husband has. We will be seeing his oncologist at end of April and I will make sure and bring these issues up and also ask him to lower dosage for Oxy.

    My heart and thoughts go out to all of you battling this wretched disease and also to those who have overcome it but still have the lasting effects from treatment used.


  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member
    Health is number one

    Many oncologists have a system where they can provide a response to patient concerns in about 24 hours.  If your husband is suffering, you might want to try out this system and see if anything can be done.