Stage 4

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Hi..I’m Marc 63 year old male ,I was diagnosed 4 years ago In January..

I was given 4 rounds of FLOT chemo,given a few months break before Ivor Lewis surgery,again a break before another 4 rounds of FLOT chemotherapy ,which was exhausting.I was then called in for 6 months check ups and told if I get to 2 years cancer free,I should be in the clear.

2 years 3 later I developed loss of voice,and told maybe a virus but sent for CT scan incase..this came back with the bad news ,it had returned to same place and now inoperable.More chemo was put into place where I’ve had 6 rounds of CAPOX..which had been awful taking 12 days to recover after each infusion..

Another CT scan,and it appears that it had spread slightly into 3 lymph nodes and recommended 10 rounds of radiotherapy,which i completed last week..14 months later hardly any voice as one of my lymph nodes was pressing down on my vegas nerve .

I am currently also having voice coach lessons every 6 weeks to try and free paralysed vocal chord,but after 18 months from the beginning,which will be February a minor op may be available to fill’ one vocal chord and hopefully restore voice.

I remain positive and keep fit as possible by hill walking as often as I can in between treatments..

Is anyone else in similar situations with treatment or voice ,or lack of it ..Cheers everyone and keep on keeping on Marc

  • Hi Marc

    Posts mentioning Stage 4 get a lot of reads but not many replies. I am not in a similar position (at the moment) but I really feel for you.

    One year on from my Ivor Lewis operation I am feeling good and looking forward to the future. I am the sort of person who bought an electric recliner to sleep on during post op recovery and took out a 5 year guarantee with it - as an act of faith that I wouldn't be wasting my money and would see out that period.

    Your post is a further reminder that it may not be over yet. Already I have those little thoughts if I feel tired for no reason or my persistent cough gets more annoying than usual. Problems with your voice is particularly bad so I hope that does get sorted as soon as possible. 

    I'm glad that you can get out hill walking - I have two beaches I walk along every day here where I live and swim a few times per week. It all helps to clear my head and keep fit as well. I will be a bit more thoughtful after reading this. Love your positivity.

  • Thanks for reply Pray tone1..I see what you mean with replies,but from all the people I talk to most seem to come from it ok,maybe tired at times and dumping and dehydration,but small price to pay.

    I did think about a reclining bed,but bought a wedge pillow..now I just have plenty of pillows at hand,it’s only when I slip off and find myself laying flat,that sometimes the acid creeps up.Whoever taking Lansoprazole daily keeps it in check most of the time.

    good luck on your journey,and find life easy going ,at least we still here ,Marc 

  • Hi Marc 

    Sorry to hear you find yourself in this situation ..I think a recurrence is something anyone who has been through the OC curative intent process thinks about,  but puts to the back of their mind …Your post highlights how unpredictable this disease can be ..

    My husband has come through the process ..it’s almost a year since he had his oesophagectomy ..and seven months have flown by since treatment ended ..Although he’s on a positive pathway up to now we opt to keep an open mind regarding a recurrence as despite trusting the specialists and the process,  in reality  there’s no 100% certainty it won’t come back .. All we can do is remain positive …carry on living to the best of our ability and hope for the best ...My husband has the mindset of ‘I’ll deal with it if it happens and not before ‘ so we just live in the now . 

    It’s good to hear you are remaining positive and keeping yourself fit ..As we all know exercise is not only good for the body but the soul too .

    I sincerely hope everything goes well with your treatment and you find yourself in a much better situation in the months to come 

    regards J 

  • Hi, thank you and prey your husband does get a reacurrance..I think I’m in the minority so I’m sure he’ll be fine,I was told of mine on our 40th wedding anniversary and we celebrated by climbing Ben Nevis ..so we are doin ok ..thanks for taking the time to reply,very kind