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Flot Chemo and Oesophageal cancer

Mariey
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Hello everyone

i thought I would update my posts from September regarding my husband Trevor who has Grade 3 oesophageal and stomach cancer.

he underwent four courses of FLOT chemo which had many downs and sadly not a lot of ups, however he managed this and had a CT scan afterwards which showed nearly a 30% decrease in the size of tumour. Woo hoo. For the last 7 weeks we have had a wonderful time living in the fast lane, enjoying life, holiday in Isle of Wight, visits to theatres, meals out (as he can now eat more than soups), and having the time of our lives, because on 18th he is undergoing surgery to remove most of his oesophagus and a very high percentage of his stomach will become his oesophagus and life will then become difficult again. He has still not regained all his weight, has taste issues and pins/needles in hands but these are deteriorating as the days go by. I wanted people to know that there is life after Flot chemo and it is worth going through. Will update my post after he has had his surgery which in truthfulness he isn't and neither am I looking forward to and we put our hopes in the hands of the surgeons etc etc. Look forward to hearing from other people who are going through the same journey as us. Mariey x

 

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    Hi Mariey and Trevor,

    You must both be having mixed feelings at the moment, enjoying life but knowing there’s another big challenge a few weeks down the line.

    Not quite the same journey, but I’m 12 years down a similar road. I came off EOX chemo (which has similar side effects) for stage 4 OC about 10 years ago. The neuropathy faded within six months, which seems fairly typical according to feedback on this forum. 

    When I was on chemo, my prognosis in early 2014 was grim with less than a 5% chance of surviving more than 12 months. So I didn’t really think much about long term side effects. I had just about every side effect listed by CRUK apart from hair loss - bizarrely my hair thinned a little and turned white.

    To alleviate the worst of these side effects, I was prescribed the steroid prednisole. I’m not 100% sure, but I think this triggered as long term side effects type 2 diabetes and cataracts. 

    With hindsight, I would probably still have taken prednisole as I felt wretched, but I wish I’d better understood the risks at the time. 

    On the plus side, my cataracts have been removed, my diabetes is under control and I’ve just celebrated by 66th birthday - which is amazing as I was told I might not make 56. 

    I hope Trevor recovers quickly from his surgery and continues to enjoy life to the full.

    Good luck!
    Dave

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    Hi Mariey and Trevor,

    You must both be having mixed feelings at the moment, enjoying life but knowing there’s another big challenge a few weeks down the line.

    Not quite the same journey, but I’m 12 years down a similar road. I came off EOX chemo (which has similar side effects) for stage 4 OC about 10 years ago. The neuropathy faded within six months, which seems fairly typical according to feedback on this forum. 

    When I was on chemo, my prognosis in early 2014 was grim with less than a 5% chance of surviving more than 12 months. So I didn’t really think much about long term side effects. I had just about every side effect listed by CRUK apart from hair loss - bizarrely my hair thinned a little and turned white.

    To alleviate the worst of these side effects, I was prescribed the steroid prednisole. I’m not 100% sure, but I think this triggered as long term side effects type 2 diabetes and cataracts. 

    With hindsight, I would probably still have taken prednisole as I felt wretched, but I wish I’d better understood the risks at the time. 

    On the plus side, my cataracts have been removed, my diabetes is under control and I’ve just celebrated by 66th birthday - which is amazing as I was told I might not make 56. 

    I hope Trevor recovers quickly from his surgery and continues to enjoy life to the full.

    Good luck!
    Dave

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