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osophagus cancer diagnosis

RayB
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Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

  • Offline in reply to SueCC

    Fantastic news Sue, thanks for letting us know.

  • Offline in reply to SueCC

    Hi Sue, hope you're OK.

    I think today was the day you were visiting your Husband post op.

    Hope it went OK and he's alright.

    I had annual check up scan yesterday and results today came back all good, so very happy too. 

    Almost two years since diagnosis now !

  • Offline in reply to Redski

    Hi Redski, over the moon you got good results today, I must say you get your CT scan results very fast. Out tonight for a drink then is it to celebrate?

    Yes I went to see Mart today and he's doing brilliant, getting looked after very well so I'm feeling much better now.
    Thanks everyone xxx

  • Offline in reply to SueCC

    Up date, Marts coming home tomorrow, he's obviously doing very well. He's 79 and as well as stomach cancer he also has/had kidney cancer, at the same time of finding the stomach cancer they also found Non Hodgkin Lymphoma, so no stomach and one kidney and he's doing brilliant. Thanks everyone for all your reassurance. I'm sure I'll be back with more questions soon xxx

  • Offline in reply to SueCC

    YAY- big clapping emoji's for you SueCC that is an amazing turn.

    That is GREAT . Home is the best place for recovery, without all that 'beeping' 

    Like mine, he'll be back on the pints soon (:

    Talking of mine- He was discharged from the Surgeons today- wierd . He asked about his low blood sugars after eating- well sir, you know full well that a full Sunday roast with pudding eaten at one sitting will do that- so STOP stuffing your ( non existent) gut.  Mmmm well, we'll  see.... as for his hernia- if it is not bothering you we'll leave alone. So clear off (: (: 

    Hope everyone is keeping the faith

    Hilts x

  • Offline in reply to SueCC

    Hi Sue,

    Amazing news! So pleased that your husband is home! I would say take it a day at a time. Glad you've got meals sorted. Kev enjoys white fish and Salmon as it's light. His food intake is near normal these days. Sorry for late reply but been MIA on holiday. 

    Andi - I hope you are recovering and feeling better. 

    Hilts - sounds positive re your husband not needing surgery so everything crossed. 
     

    Redski - interesting that you had an annual scan. My husband has not had any scans since October 2021 and our hospital said they only scan if any symptoms occur. It's interesting how different hospital trusts vary. No complaints though as they were excellent when he had to have the colonoscopy and said they'd do a scan if necessary.

    Still keeping the faith

    Milly

     

     

  • Offline in reply to Milly58

    Hi there lovely's, just an update on Martin after his total Gastrectomy on the 11th Jan, home 7 days later and hasn't really looked back, eating fine, not mashed up food now. We have an appointment with the surgeon on Monday so hope to find out all the info as we were told nothing, as you can guess I have loads of questions to ask, also hope the feeding tube comes out then.

    I seem to be waiting for something bad to happen as things are going to well in my eyes, 

    Anyhpw just thanks for all your help and for been there when I needed you all. I'll let you know what happens on Monday xx

  • Offline in reply to SueCC

    Hi Sue, hope Martin and yourself are well.

    What a wonderfully positive update, thank you for coming back and sharing it, it's great to hear and sounds like you've both found your stride with eating and settling into normality. See, there was nothing to worry about after all !

    Questions for the surgeon wise, it might be helpful for you both to ask these in addition to the ones you already have from my learns through my experience :

    1) Schedule Martins first vitamin B12 injection. After total gastrectomy you cannot absorb B12 via your diet and so we have to have injections every 12 weeks. He'll know when it's due as at week 10 you start to feel like you need new battery's and plugging into the mains ! After a visit to the GP for the B12 shot, he'll walk out bouncing around like a Duracell Bunny !

    2) Vitmains and supplements. I take a multi vitamin each morning, a vitamin D oral spray, an NAC capsule and a Quercitin capsule. Ask your surgeon what he recommends for Martin. This is what mine recommended for me.

    3) Blood tests, I had 3 monthly blood tests to check and monitor my levels as without a stomach from total gastrectomy they wanted to make sure my absorption etc was normal and settled, so were checking vitamin D levels, red blood cell counts, white blood cell counts, liver and kidney function, B12 levels as well as CA19.9 level and CEA level as they're good tumour marker indicators. Ask your surgeon if they'll check or monitor those levels post total gastrectomy to see that his absorption and digestion etc is all settling OK. 
     

    Initially, mine wasn't and I needed vitamin D boosters which helped and I've now settled and last check up all levels were plum normal, so it's worth asking if there's a check to keep an eye on these at the start.
     

    Those are the key things I can think of that are worth asking, hope it helps and pass on my congratulations to Martin for rocketing out the other side of this so well !

     

    moderator : why aren't we allowed to mention Hospital names ? It's allowed on Macmillan forums and is useful and helpful to others in their journeys. 

  • Offline in reply to Redski

    Thanks Redski, great you're around for your support and thanks.

    Vit 12 is booked in for next month, apparently you have to have 5 every other day and I take it these are smaller doses, then every 3 months there after.

    Blood tests is in 6 months and FBC U+E LFT Magnesium calcium vit B Folate iron Transferrin Saturation

    is that about right, every 6 months for 2 years, then yearly after. I will ask about CA 19.9 and CEA level, may not work with Martin though as he also has folical Non Hodgins Lymphoma that still needs to be sorted after the stomach cancer.

    Yes got the A-Z vitamins as well so I think it's all covered, just need good news on Monday.

    Thanks Redski xx

  • Offline in reply to SueCC

    Hi Sue and everyone,

    Thanks for your update and I'm really pleased all is going well. We are chugging along after our Caribbean cruise. At least it's getting lighter now at night. 

    keeping the faith for everyone 

    Milly
     

     

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