stage four oesophageal cancer

[Vitex]

I was first diagnosed in July 23, surgery deemed inappropriate, had radio and Folfox. PET scan on 2024 showed metastases to peritoneum, more Folfox with immuno autumn 24. Bad reaction to immuno thus now starting more Folfox on its own next week. Docs are, understandably perhaps, not wanting to comment re potential life expectancy or likely evolution of quality of life. But, it would be really helpful to have an idea! Anyone got any experience to share about dealing with stage four? Any hints about any supplemental treatments that might help? Thank you for any insights

[Badger2024]

sorry that you’re going through this. This is what the American cancer society says

amp.cancer.org/cancer/types...

[Vitex in reply to Badger2024]

Thank you

[Julieanne60]

Hi Vitex. Just read your post and wanted to say Hello, and hope that someone will reply to you who can relate to your situation. Take care, Julie

[Vitex in reply to Julieanne60]

Thank you Julieanne

[strangetimes]

My brother's oesphageal cancer was dx end of 2019.One of his lymph glands was badly affected but because of its position near his bronchi they said they couldn't operate.

He had chemo but it wasn't effective and he died Nov 2020.

He was at home and pretty well ( driving, self care , not eating , on morphine.) until the last week which he spent in a hospice . He was given oxycodeine and haloperidol. The latter because he was agitated and paranoid.

He was sleeping a lot , not choking and not in pain.

But as I'm sure you'll be told over and over again , everyone is different.

[Vitex]

thank you

[strangetimes]

Just to add ,I see from my old emails that my brother did have rads after the chemo. He was unlucky that his tumor didn't respond and the cancer continued to invade his lymph glands.

Advice from friend for him when talking to consultant was

Ask what worst case scenario is in terms of how many months for survival.

Then ask what best case is.

Then ask where it's thought you are now.

Ask how you're likely to be affected by progression.

Ask what palliative care is available and what can be offered to ameliorate symptoms.

I hope I haven't been too blunt

Sending strength and love.

[Vitex in reply to strangetimes]

Not too blunt at all, that is really informative and helpful. Thank you again.

[strangetimes]

If it's any help , and no guessing how similar my brother's case was to yours , he was told on 13 Oct that he had 3 to 6 months , with the outside possibility of a year . He died 5 Nov.

[KK1310]

Hi Vitex,

My dad was diagnosed with stage 4 oesophagus cancer in December 2023, inoperable as it had spread to his liver and his oesophagus tumour was wrapping itself around his aorta, he started 6 cycles of capox in March 24. We were originally told it would be palliative chemotherapy only. After 3 cycles, his tumour in his liver had disappeared and there was a slight shrink to his oesophagus tumour. By round 6 my dad couldn't eat again and was back on a liquid diet and in alot of pain. Further scans showed that his tumour was pressing on his nerves in his back which was causing the really bad back pain. Morphine wasn't touching it. We were deflated. However, he was given the opportunity for 10 sessions of radiotherapy which he had, starting in September 2024. By the end of radiotherapy my dad could eat again and swallow most foods, our consultant called it a win as it must of shrunk in the oesophagus but still didn't shrink it's width and was still hitting the nerves in his back. Radiotherapy caused bad burns on his back but with magic cream from the consultant this has healed lovely.

December 2024, no signs of growth and was still stable, consultant referred us to palliative care to manage pain relief, best decision ever as they have been working closely with dad and now the pain is manageable. Don't get ne wrong he can still have bad days but no where near had bad as before.

January 2024 he has just started 2nd line treatment of paclitaxel chemotherapy. The aim of this is to try and keep the tumour stable. He can have 6 months of this treatment if he is able to manage it and so far side effects ain't too bad.

Since diagnosis he has lost 7 stone and even though he is eating much better, can't seem to gain weight.

Sorry for the lengthy message but the I hope I can give you some hope that treatment can work.

His initial diagnosis was 6 months. He's now on 13 months and doing well. I personally think it's the best he has looked since diagnosis.

Do not be afraid to ask questions and try different treatments. There are plenty out there, it's finding the right one that responds to your tumour.

If you have any questions at all, please don't hesitate to ask. I have asked alot, and researched alot and been with my dad through every chemotherapy session so far as unfortunately my mom doesn't drive.

Stay strong

Kayleigh x

[Vitex in reply to KK1310]

Hi Kayleigh

Thank you for that. Good to hear that your dad is still doing ok. Long may it continue.

[strangetimes in reply to Vitex]

Me again Vitex 🙂, so glad that Kayleigh has posted with a more positive response.That's amazing how her dad is responding to treatment .

I just wanted to add that I do think my brother could have had a better ( not a complete miracle of course ) outcome and that I suspect his treatment was not the best .

Inevitably forums can give a skewed view because I think more post with negative than positive stories .