Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Offer of Clinical Trial using Pembrolizumab

RichM
Posted by

Hello,

I'm new to the group, having been recently diagnosed with OC (adenocarcinoma) and gone through staging (T2 N0 M0).

I'm 63, male, non-smoker, a very moderate drinker and apart from the OC am in really quite good health - robust even.

I'm dealing with the news in quite a matter-of-fact way, but I've got a one year old grandson, and I'd like to see him grow up.

Anyway, I've been offered regular chemo (cisplatin and capecitabine) and surgery, OR the option of joining a clinical trial using pembrolizumab.  Apparently pembrolizumab has been effective with other cancers but not enough is known about its effectiveness with OC - hence the clinical trial.

Because it's a 'double blind' trial there is the possibility that I would in fact receive a placebo instead of the pembrolizumab.

If I do elect to join the clinical trial the treatment would be:

- 3 cycles of chemo + pembrolizumab\placebo

- surgery

- 3 cycles of chemo + pembrolizumab\placebo

- 11 cycles of pembrolizumab\placebo alone

I just wondered if any of you have been on this trial, what their experience was and whether they can offer any insights that might influence my decision as to whether to join the clinical trial?  At the moment my feeling is to join the trial, though the possible side-effects are fearsome.

Thanks

Rich

BrentS
Posted by

Hi Rich

You are young, fit healthy and relatively early staging, so the prospects of a cure are good.

My situation was so very similar to your situation. I was T2N0M0 and aged 62 at diagnosis, fit and otherwise quite healthy. I had 3 cycles of ECX chemo (epirubicin, usually cisplatin* and capecitabine) prior to Ivor Lewis surgery at Addenbrookes in Cambridge but then I failed to complete even one cycle of post op chemo.

*Actually The oncologist agreed to substitute carboplatin for cisplatin as it is less ototoxic (causing deafness) as I had very little hearing anyway.

The staging was changed to T1bN0M0 at surgery. The surgeon said that the tumour presented as little more than a thickening of the oesophagus wall. I saw a picture of the tumour taken during the first gastroscopy and it was clearly a tumour projecting into the oesophagus!

This was all more than five years ago. A few months after my surgery I was able to see my son get married and then go on to give us two granddaughters. And two months ago my younger son got married and I fully expect to see their child born in September. So really this was more than we could have hoped for. Life continues, and continues to be good!

A difficult choice for you... but I hope my story helps you be positive.

Counting the days, making every day count.

Brent

RichM
Posted by

Thanks for that Brent - I agreed to be part of the trial today. The potential side effects of the chemo and the pembrolizumab are quite daunting, but it seems to affect people differently...and well, fingers crossed! 

 ellie68
Posted by

Hi RichM

I belong to this group as hubby has OC.

Just a quick reply i have a different cancer, i did chemo, and i was then offered pembrolizumab, which i completed, a two year duration and finished at Christmas.

I have to say for me Pembrolizumab was quiet easy with good results, now on watch and wait, CT Scan tomorrow three monthly check ups, my tumors where reduced to nearly nothing.

As you say every one is different, but i would do Pem again rather than chemo.

Take Care Ellie xx

"You Never Walk A Lone"

RichM
Posted by

Thanks Ellie, wishing you all the best xx