I'm really glad that Trevor managed to get through the FLOT chemo and has had great results Mariey. It must have been wonderful to hear that news and then have those 7 treatment free weeks together.

I just wanted to put you in touch with [@Cumbrialad]‍ as he is currently on his 4th cycle of FLOT for oesophageal cancer so it may be nice for you to chat and support one another on your cancer journeys.

I really hope all goes well on the 18th Mariey.

Kind regards,

Steph, Cancer Chat Moderator

Hi there, my husband has T3N0 oesophageal cancer. He had just a little trouble eating some foods before his cancer was found. He has just undergone 4 cycles of FLOT but seems to be lacking in energy and is very tired in the afternoons. We don’t know when the surgery will be but it sounds like it will be identical to your husband’s. Today we were told he has a pulmonary embolism on one lung but it doesn’t seem to be affecting his breathing or making him dizzy or anything else the nurses asked about. Apparently it’s common after chemo. 
We feel very lucky in that it hasn’t spread outside the oesophagus but don’t know yet how much it has shrunk if at all, we should find out on Friday. We’re hoping to get away for a few days soon as we’re aware everything will change after surgery and my husband, my rock, will need me as his rock. I have no idea what the future holds but it’s going to be quite a learning curve! 
All the best! 

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