Pembrolizumab + Capox for reoccurrence.

Hello, I wanted to message you , my mum also was diagnosed with adenocarcinoma Oesophageal cancer , she had Barrett’s and also a fistula and was having frequent endoscopies for years.

They see the changes and confirmed early stage cancer , she had the Ivor Lewis surgery with the Royal Marsden in June 25 went well , was in hospital for some time due to getting pneumonia.

on the follow up after surgery about two months. Results on histology confirmed pT1 N0 M0, clear margins. 

A couple weeks later she had her CT scan for thorax, pelvis and abdomen. Blood tests for tumor markers CEA and CA119 all came back normal. 

They found two lung nodules on the right lung only

( these did not show on scans or X-rays in the hospital after surgery as she had a few due to the pneumonia )

which have since been biopsied and confirmed from the Oesophagus cancer, all other areas clear. obviously extremely shocked !

Consultant / surgeon advised chemotherapy would be next and was confident will clear the nodules. 

Roll on to today speaking with the oncologist who was blunt , had not looked at my Mums records was doing this while in the meeting , gave a very blunt and bleak poor prognosis, absolute no warmth or any kind of empathic delivery. 

My mum will be having 6-8 cycles of CAPOX still waiting on the molecular testing to see if suitable for immunotherapy, these tests are taking some time to come back and was advised a further 2 weeks which will be 6 weeks in total waiting for these results. 

we are beyond shocked , saddened and confused! 

please can I ask how your consultant / oncologist approached your reoccurrence. 

Hi Rich

Sorry to hear that you are facing another round of treatment. I hope your medical team are just being cautious and that these nodules and lesions are not metastases. Aside from detection on the scan, did you have any signs or symptoms of them? I do not receive routine scans as part of my follow up so have no idea if there are any signs to look out for that things are not quite right. 

Hi Lindsac0bf8,

I’m so sorry to hear about your mother it’s heartbreaking when the operation goes well and then something like this happens afterwards. This disease really is terrifying and unpredictable.

I can completely relate to what you said about the oncologist’s bluntness. Mine was exactly the same my first meeting after my recurrence left me feeling completely hopeless. It was only at my next appointment, after explaining how determined I was to fight, that things shifted a little.

I’ve now been told I’m eligible for immunotherapy and will be starting CAPOX with Pembrolizumab in the next few weeks. That’s given me some hope again, knowing there are still treatment options available that can work well for some people.

Was the oncologist you saw the same one who’s been looking after your mom all along?

I hope you hear some more positive news on your next consultation.

All the best,

RichH.

Hi Cool Blue,

Quite simply there is no signs or symptoms related to the findings, I’m sure the oncologist had said likely wouldn’t feel anything for months as everything is pretty early and only just visible. I had only had a scan because they’d thankfully kept me on the books to mimic the SARONG trial where you’re scanned in intervals. The last month has been a complete nightmare nothing but anxiety from scans and waiting between appointments for results. 

Thank you  for the reply. So my mum is under the royal marsden and had been having regular endoscopies as she was diagnosed with Barrett’s. No oncology involvement directly as she was offered surgery immediately curative path .  So they picked up the change in May 24 and diagnosed early stage OC. 
Unfortunately surgery was cancelled twice on there side.so from diagnosis it was nearly 13 months to surgery my mum didn’t have chemotherapy or anything prior to surgery. 

 
Finally had surgery in June 25, went well and home recovering. 
Follow up appointment confirmed all cancer exercised, clear margins and histology confirmed pT1 N0 M0. 

so great news for anyone diagnosed with cancer. 

Two months after surgery , had blood tumour markers taken and CT scan both blood tests came back normal but CT scan showed two nodules in the right lung.
 even though she had several scans and X-rays in hospital due to having pneumonia after surgery nothing picked up! 

CT covered thorax, pelvis and abdomen . They were clear apart from right lung. Biopsies and confirmed from OC. 

consultant/ surgeon follow up same week told that nodules are OC , seemed confident treatment could clear / shrink nodules. 

Yesterday’s appointment with the oncologist, it was immediate this is not a cure, and the awful heartbreaking prognosis.
There was no empathy, it wasn’t delivered well at all, it was very much well even if something works we know this cancer comes back. 

if I hadn’t started asking further questions of some possibilities , I can very much say it came across the oncologist was writing her off with or without chemotherapy. 

Still waiting on the molecular results if immunotherapy can be included. 

We are all just in so much shock. 

I’m so pleased for you that immunotherapy has been option for you as have read some fantastic progress and results with this. 

I will keep you posted and please do the same. 

I wish you the very best  and a successful outcome! Advocate for yourself in every way possible ! 

I Appreciate your reply! 

Lins 

My wife was diagnosed with stage 4 Oesophageal cancer with spread to lymph nodes and pelvic area in Feb 2024.(Non operable)She had 8 cycles of Capox and pembrolizumab every 3 weeks and since October 2024 has continued with just the immunotherapy every 6 weeks.Scan since December 2024 have shown NED.

Hey, Lins. Sorry for the such a late reply how are things going now for you guys? 

Keep strong I got the same

Hi Kaya, that’s brilliant news I hope your wife continues to show NED! I’ve had my first round yesterday, thankfully this time managed to avoid a PIC line! My veins are a little painful from the oxaliplatin and nausea comes and goes. It seems I’m taking 1300mg morning and 1300mg a night of the Capecitabine tablets for 21 days aswell so there’s no days off for these 6 rounds ! 

Did your wife manage all of the chemotherapy rounds?? 

Many thanks.

Be strong