Oesophageal Patients Association

Update

Things didn't go to plan. They couldn't get the tumour out. Best of it is its not spread anywhere, it's just too messy and mangled in there to be fixed.

So we've have 4 cycles of chemo, over 250 injections, all those tablets and a 10 hour operation for absolutely nothing!!!!

My beautiful husband who was so determined that this bastard of a disease was not to beat him is now palliative.

My heart is broken..💔

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LUCY I just don’t know what to say to you. Your hubby has always been just a few months behind mine in his journey and

I’ve followed your messages through...sounding just like mine. I’m in tears for you , we both are ..I’m so so sorry for you both xxx

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Gentle hugs over interwebs. I'm sorry you have had to hear this news. My sympathy and love to you both.

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I am so sorry to hear that Lucy . My thoughts and prayers are with you both 🙏.i have been watching for your post every day to find out how his operation went as we both started this journey with our husbands at the same time except my husband had to have 6 cycles of chemo and today is his last one before his next round of test to see how to proceed . Take care . Jane .

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Oh Lucy, I am so very sorry to hear your awful news. I can't even begin to imagine how you must be feeling. There are no words of comfort I can offer except to say that my thoughts are with you both.

Kate

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Lucy

There is nothing I can say here to make you feel better. You have both fought with such courage and deserve so much better. Please push your Oncologist to discuss "Proton Beam" and it's suitability/or not, for your husband.

Love from the Millar's

XX

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I am so very sorry Lucy to hear this news. Our thoughts, love and prayers are with you both ,

Lynn xxxx

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Lucy I am so so sorry to hear your sad news. What a battle we all face with optimism. My husband is also palliative and we all have to take one day at a time. Sending hugs x

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Lucy I know you both must be devastated with the news. There is currently a new UK Drug Trial due to start with 200 patients and 2 of our local support group members have just signed up. They are both palliative and have not been able to have the operation The study mirrors a Japanese trial to compare results. There is no placebo so your husband if accepted would get the immunology drug called NIVOLUMAB. Please contact your oncologist or consultant to see if your husband would qualify for this new treatment .All the best to you both.

Phil

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Hi Lucy don’t give up hope there may be an alternative like radiotherapy.

Sending you a big hug.

Debbie

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Oh no Lucy, I'm devastated for you xxxxxxxxxxx

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Hi Lucy. There are no words that can give you comfort but I can say a prayer and send you a hug. I urge you to explore other options as others have suggested. So sad for you.

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Hi Lucy, please don’t give up, there may be an alternative, the clinical trial sounds like an option to look into as suggested by Phil or the proton beam suggested by Bruce? My thoughts and prayers are with you x

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Lucy I'm so, so sorry for you both. I do hope that some of the suggestions posted above can give you some hope xxx

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Take care and all of our thoughts are with you both xxx

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Lucy, I'm so sorry to hear this.

I hope that some of the suggestions posted will give you further options.

Take care and sending hugs to you both.

AM x

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My prayers are for you & your husband Lucy.

I second what BruceMillar and Kiddy suggest regarding Proton beam & radiotherapy, Radiotherapy (a long with chemo) is used as standard in America for this type of cancer, I would push for radiotherapy treatment, I know it can work because I had it before my IL operation cos my tumour was bleeding (2 pints) and radiotherapy saved my life. What it did was to shrink the blood vessels and shut them off depriving the tumour of a blood supply, or partially depriving it, either way it worked and bought me time.

My 91 yr old mother was diagnosed with the same cancer the day I was dicharged. Chemo being out of the question because of her age, she was given radiotherapy, after a rcent scan we were told that her oesophageal cancer was stabilised. they said it wasn't growing, she now has bowel cancer thats spread but has absolutely nothing to do with the oesophageal cancer, she had an op for her bowel a few years back and they left some inoperable cancer in. Radiotherapy definitely has an affect, I know it carries its own risks but at this stage you have to use what you can. I reall really hope he can beat this hideous disease.

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