Calla wrote:I got great news today at the oncologist. But this is also a cautionary tale.
Met with the oncology nurse first. She presented me a plan - a chemo cocktail and having a port to infuse the cocktail surgically implanted in my chest. Let's schedule it!
I had done my homework and knew that one possible side effect of Folfox (the oxa, in particular ) can be permanent neuropathy - nerve damage. In hands and feet but also optical nerves, nerves in your digestive system, joints locking up, etc.
I asked if there were other treatment options. She didn't really want to go into that, she stalled, but finally did. I could take pills of 5-FU that has no known permanent side effects (but some temp ones) I asked what the difference between the two was for staying alive for 5 years and chances the cancer could come back within 3 years.
She used a risk calculator that used 17 different factors particular to me and the tumor I had.
NO difference in survival rate. 3% to 5% difference in getting cancer again. That's it. But the nurse acted like that was huge. In fact she presented it a huge difference. Not her choice to make.
Talking to the actual oncologist, he said permanent neuropathy is a serious concern, he sees it often and no...not much difference in outcome between the two treatments. But some people will do anything to decrease their odds of getting cancer again by even 1%. And for them, Folfox is the right decision. Others value quality of life and feel 3% to 5% is a small risk of recurrence vs the risk of permanent side effects from the oxa. We talked about ways to minimize neuropathy. And that we could try it and stop if it was a problem.
I also talked to my surgeon, who will reverse my ostomy after chemo is done. I asked him directly about Oxa and nerve damage and if it affects the bowels. He said there are no studies showing that oxa affects bowel nerves and leads to poop issues like clustering or chrome constipation. But that many surgeons do believe that it does. That, even when people may not notice neuropathy in their hands and feet, it may be damaging nerves in the rectum that give the signals on when to poop.
I'm going with the pills. No damn port implanted into my chest and no chance of losing all feeling (and fine motor control) in my hands or feet or losing my eyesight (and ability to drive). I also want to give myself the best chance for success in my reversal. No going in for chemo infusions and having a pump.
I figure if I'm going to have a recurrence, I'm going to have one no matter which treatment is choose. So instead I'm focusing on what will help me enjoy my life more now and in the future.
6 pills a day for 6 months. Yes, there can be brutal side effects. I suck at taking pills so if i can't do it, I'll get the port. But, I'm happy about my decision because it's an informed decision based on my priorities.
But if the oncology nurse had her way I would never have even known this was an option!
I start when I get the pills in the mail, should be the 21st of March.
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