Post surgery FLOT chemo cancelled due to neuropathy risk.

I had mild neuropathy in my fingers during pre-op FLOT but there was never any suggestion of skipping the post-op. In the end I managed three cycles at 75%

Hi 

Your oncologist has put you in an unnecessarily difficult dilemma. In my own experience the surgeon, having done her job and with clear margins being present told me as far as she was concerned I could say that I am now cancer free. Fast forward to a recent meeting with the oncologist and his attitude was far harsher. As there had been evidence of cancer in a few of the many lymph nodes removed he was adamant I try and get through all four post op sessions if at all possible. It is obviously your decision but for me I think a few months of discomfort is preferable to the possible alternative.

My dad is currently on round 2 of his post op FLOT chemo, 2 of the drugs have been dialled back to 80% because he has neuropathy in his fingers and feet caused from the pre op FLOT and doesn't want it to get any worse. This was on the advice of his oncologist who said if it gets worse, then they can dial it back further if necessary. So far there has been no worsening of his neuropathy and he's due to start round 3 next week. 

Thanks Cool Blue. We are in such a dilemma. My wife has the mild neuropathy you describe. Can I ask how things were at the time you stopped at the end of 3 cycles?

Thanks for the reply FairiesWearBoots (Sabbath fan here too…) 

We feel that the possible survival improvement has been written off. By the sound of your experience there was no question of post op FLOT happening. Wish it was the same here.

My neuropathy disappeared a couple of weeks after finishing chemo. It was definitely worse with my pre-op FLOT but that may be due to the fact that I was having that Dec-Jan whereas my post-op FLOT was May-June

When we last saw my dad's surgeon, he said that the post op chemo only improved long term survival by a few percentage, I think he said 4-6%. But we've seen statistics only saying that post op chemo is pretty important to the long term survival rate so my dad has always been pretty keen to do as much of it as possible.

When we had the meeting with his oncologist prior to him starting his post op chemo my dad said that worsening neuropathy in his fingers and feet would be pretty much the only thing that would stop him doing the chemo so it was reduced from the outset. His oncologist is keen for him to do all 4 sessions but knows and agrees that if the neuropathy worsens then he will stop. My dads oncologist can't say if the neuropathy he has now will be permanent or not, which is why my dad is so concerned about it getting worse. I asked if reducing the strength reduces the effectiveness and the answer was no. So far his had far few side effects and they are much more tolerable. 

Had to give myself a Sabbath related name given that I'm only here because of my dad and he passed his love of them on to me. 

Thanks again, would you be able to describe your Dad’s neuropathy before he started post surgery chemo. I’m trying to gauge a direct comparison to what my wife has.

I will message him and ask him to describe it best he can, I'll post back once he's told me. 

In his words: 

Very mild numbness and a slight tingling feeling in the fingertips. Not (yet) to the extent that I can't do things I used to do, and not dropping things.

Similar feeling in the soles of my feet, though if anything it's more noticeable, and more annoying because it's always there, and gives an odd sensation when you walk. Imagine sitting in such a way that your feet went numb, then standing up and walking.  

It's Oxaliplatin and Docetaxel that they reduced by 20%.

His neuropathy started after his second pre op chemo session back in May, and he's felt what he's described above ever since.