Removing Oxipltin good or bad??

When a medication is giving him neuropathy it's time to quit.  Mine also is permanent, like Tru's, and even asked the doctor to stop it at treatment 5 but she didn't and now suffer daily.  If he stops that there is also other treatments that he could use.  I'm glad to hear he has such a positive reduction in CEA from the treatment, but it could be they can put him on something else that will continue to help.  My doctor wouldn't switch me but ask your doctor some questions about what their opinion is.  Wishing him the best.

Kim

I was on a similar aggressive cocktail and removed the oxali as soon as the neuropathy in my fingers and toes became permanent.  My CEA peaked at 246 and came down to 46.  Your husbands drop is so dramatic it is a real cause for celebration.  I’m now on Folfiri but had to drop the Avastin for 3 cycles for a biopsy and scope.  I’m now back on Avastin but the last full workup prior to that showed a CEA up 50%, continued minor shrinkage of the big tumors but minor enlargement of the small tumors.  I’m eager to see the effects of returning to Avastin.  So the chances of growth are real (for me, hopefully not your husband) but I have faith in the Avastin and am glad to hear he’s on it.  

I had 8 round of Folfox with Avastin from March 2016 tro July 2016 then went on Xeloda and Avastin every 3 weeks until August 2017.  My doctor said it stopped working for me so wanted me to start on Folfiri. My tumors had shown slight growth, so it wasn't too scary.   

I hope your husband does well on maintainence chemo.  Some people are on it for years with no tumor growth. 

I was pulled off Oxaliplatin after my 5th cycle due to optical nerve swelling in both eyes. My vision issues started in my 4th cycle but I dealt with it. Called my local Oncologist, he told me it had nothing to do with chemo drugs.  I never had problems with my eyes prior nor did I have problems in my good week.  I was only having major symptoms during chemo treatment.  I listened and went for my 5th cycle - mistake - I lost vision in both eyes ONLY for seconds,  every 45 min. or so.  It was enough for me to say no more.  I called an eye doctor and he too did not want to admit it was chemo drugs. I have 20/20 vision. I had called my Oncologist at UCD and she mentioned I fell in the 1% class of vision issues on Oxaliplatin.  To me the quality of life is more important than quanity, at this point. I am having to get a spinal tap to relieve pressure on my brain to help my optical nerve. Might put me on another drug, depending on the pressure in my spine.  Just thankful every day I wake and have another day with my family.

Mommy T said:

I was pulled off of Oxaliplatin

I was pulled off Oxaliplatin after my 5th cycle due to optical nerve swelling in both eyes. My vision issues started in my 4th cycle but I dealt with it. Called my local Oncologist, he told me it had nothing to do with chemo drugs.  I never had problems with my eyes prior nor did I have problems in my good week.  I was only having major symptoms during chemo treatment.  I listened and went for my 5th cycle - mistake - I lost vision in both eyes ONLY for seconds,  every 45 min. or so.  It was enough for me to say no more.  I called an eye doctor and he too did not want to admit it was chemo drugs. I have 20/20 vision. I had called my Oncologist at UCD and she mentioned I fell in the 1% class of vision issues on Oxaliplatin.  To me the quality of life is more important than quanity, at this point. I am having to get a spinal tap to relieve pressure on my brain to help my optical nerve. Might put me on another drug, depending on the pressure in my spine.  Just thankful every day I wake and have another day with my family.

So many of us on this board have been told by our doctors that they have never heard of a side effect, when a little research shows that it is a known side effect.  This experience is frustrating and dangerous.  I really am not sure if they are uneducated as to the side effects of the drugs they use, or if they use the "never heard of it" statement as a strategy to encourage "compliance."

Annabelle41415 said:

I'm so sorry

You must have had a very extreme case with the eye issues and for that I'm so sorry.  I'm glad you got a reduction and hopefully your vision will continue to improve.  My eye's were also affected and just being in to the eye doctor told them that chemo made my vision totally worse.  My eyes would twitch and go around my eye balls and lose focus but only for short periods but it would happen often and no one wanted to contribute it to the chemo.  I'm just wishing you the best forward and glad you quit that oxy drug that is causing all of this. 

Kim

Thank you for your post back. The doctors have no other course for me but to wait for my follow ups. Now, that I stopped - I question the intrigity of the cycles that I finished.  I can't tell you weather chemo actually worked for me.  I am frustrated - they left me with a bunch of side effects but it sounds like everyone is in the same boat.  The doctors check on us but we have months in between to deal with other issues. I guess it is a waiting game for everyone diagnosed with cancer???  We just need to live life everyday and make the best of it.  I feel very close to everyone on this blog even though I haven't met anyone in person.  It is nice to have people to chat with. 

I realized the oxaliplatin was really a tough one.  I had it discontinued on the 7th round.  But I guess it is effective because it shrunk my lung tumor to more than half.  But I had it stopped so it growed again.  I might go through it again as I just had a lung met removed but who knows.  I've always set the line that quality of life is more important to me so my stand in this is: as long as I can tolerate the side effects, I'll try to do it.  Good luck on your decision.  May you find peace in moving forward.

I was on Oxaliplatin, Avastin, and Xeloda For 12 months (cycles). They warned me that the Oxaliplatin would cause neuropathy in my hands only if I touched something cold or metal like a shopping cart. I also could not drink anything cold for the two to three weeks after my infusion. It always went away after three weeks. The Xeloda for me was the worst of all three. It dried everything out. My eyes became criticaly dry and I could no longer read anything without reading glasses. I also had hand and foot syndrome, where my hands and feet were so dry that my skin was just peeling off. The worst side affect of all has been chemo brain. I can’t tell you which one of the three medications was the culprit, but today I fight with very bad short term memory loss and it hasn’t gone away. After 12 cycles the ct scan showed that the large tumor in my colon had shrunk a little bit and the nodule on my right lung stayed the same. The nodule on my liver also stayed the same. In January of this year the tumor began to block everything so I finally became a candidate for surgery. In March of this year the tumor was removed and I had a temporary ostomy. Ten weeks later the reversal was done. In June I had a ct scan where it showed two new nodules on my right lung and the nodule on my liver was the same.

So with no chemo for seven months it did spread in my lungs.I was really ready for a break and wanted to just relax and enjoy July and August. That didn’t happen and June 19th I started a new chemo and the drug is called Camptosar. I have one infusion per week for two weeks than one week off for a total of six cycles and then I go back in for a ct scan to see if it worked.

I have not had any issues with neuropathy since I stopped 7 months ago. There is a website called Medivizor and they will email you the latest clinical trials and medications and stuff. The information they email you will only be specific to your cancer.

I wish everyone well and hope we all become survivors of this horrible disease.