Hello!

Hello - sorry to read your news but glad you found us!
My husband’s just finished his 6 chemo CAPOX (I like your alternative name!)and is now moving on to just immunotherapy. He can have this for another 18 months if his body can tolerate it - so far so good. Apart from quite a lot of fatigue, he’s managed pretty well though eating isn’t much fun due to the metallic taste thing but that should improve once he’s finished the tablets. 
Lots of good advice and tips on here so do ask if you want to know anything, someone will have been through something similar.

sending positive vibes

Jane 

Very sorry to hear your news but you are in the best place for support for sure as everyone on here is so positive. Keep strong. 

Hi

My wife was diagnosed with stage 4 Oesophageal cancer on valentine's day 2024.Palliative care due to spread to lymph nodes and pelvis .She had 8 cycles of capox together with Immunotherapy.After the Capox finished she has continued with immunotherapy every 6 weeks.Next week she has her final treatment which will bring her to 2 yrs of treatment.Her scans since Dec 25 have shown NED.

May I ask please, what is "NED"?

No evidence of disease 

Oh, right, that gives me hope! Thank you.

 Dear Dolly Parsnip

what you say completely resonates with me. I do not feel ill at all and at times it’s as if it’s not me on this dreadful journey it’s as if it is happening to someone else. I find it hard to believe that I may not be here in a few months while I feel so well. 

My cancer was detected in June 2024 and is inoperable. I did receive definitive chemoradiotherapy later that year but unfortunately there was residual malignancy at the end of it.  I am now incurable. 

We all wonder about our “expiry date” and know this dreadful disease will deprive us of years of life in some cases decades. You are particularly young.  It is early days for you and I hope what I am going to say gives you some hope and optimism.

You mention statistics and looking for positive stories. Once the realisation of my diagnosis set in I hope for extra months rather than years and I am very grateful for them. My prognosis from diagnosis was average 12 months survival (range 3-18 months). We are now past 18 months and I am still here. My consultant cannot say what my prognosis is as I am a statistical outlier. We do exist.

Keep up hope. You have the opportunity of immunotherapy which has proven to be very effective in many patients, prolonging life for years in some cases.

Good Luck x 

Hi DollyParsnip

I (F66) just completed cycle 1 of 6 Capox + immunotherapy.

I’m on a 21 days (no break)  of treatment x 6 then should be continuing with immuno for 2 years.

Tbh from what I have read, my genetic markers make this a promising route - have heard so many good things - I actually feel positive about this treatment plan.

Once you have your plan and get started it is such a relief. I was also quite wary about any physical effects of treatment but having got through this first cycle (no major issues just the cold tingling, tiredness and not feeling like eating on days 4-6 and bit of tummy upset) I know more or less what to expect and how to cope.

I have always been able to eat but softer things but now actually wanting to eat more including sandwiches which I had avoided for a quite a while. Hoping the next cycles go a similar way.

Hope you get started soon - you will start to feel better about it all . Forum is best place to read other experiences and to ask questions.

Happy to help with any questions if I can.

Hi Jane, 

Thank you so much for your reply! It feels such a positive step for your husband, and I am so pleased he's moving forwards with reasonably few side effects  

Thank you for your positive vibes, sending some back to you and your husband! 

Sam xxx

Oh wow, this is absolutely brilliant! Thank you so much for sharing, I really appreciate such a positive and powerful update xx