Jun 10, 2012 - 10:58 pm
I just joined and this is my first post. I am looking for some advice.
I am stage 3a colon cancer. Cancer was found in 2 lymph nodes but nowhere else. I had a resection completed in April and have recovered well. Tuesday I start chemo. The recommended plan is 12 rounds of Folfox 6. The only problem is that oxi is known to cause neuropathy. Sometimes temporary, sometimes permanent. I am a professional musician and need my hands to function properly.
At this point, the chemo is considered adjuvant (preventative) therapy. I am 50 years old and otherwise in perfect health. The cancer was found during a routine screening recommended by my GP. I had absolutely no symptoms.
I got a 2nd opinion from a great dr at Dana-Farber and we discussed this. I mentioned Folfiri as an option and he did not think that was an option because, while it is considered effective in metastatic treatment, there is no evidence that it is beneficial in adjuvant care.
He suggested starting with Folfox and closely watching the neuro symptoms. If they appeared they would reduce or eliminate the oxi. He also said that it would be totally ok just to leave out the oxi altogether if it really bothered me. Prior to 2004 that WAS the standard treatment plan.
To frame how important this is to me, I told him that I would rather live without neuro and pass at 60, than live to be 70 with neuro. He got the message.
I've since done a ton of research and see lots of people get neuro and it is often permanent. Also, some people report that they had little or no symptoms during treatment but then it developed after treatment ended. Based on this, I am going to tell my onc that I don't want any oxi. I'm not willing to risk it.
My question (finally) is: do you think I am crazy? Does this make sense?
I know everyone is different and this is my decision but I've been monitoring your posts and I consider them very insightful and valuable.
Thanks for your time and thoughts,