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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.

Immunotheraly

JuanK1ng
Posted by

I have been diagnosed with oesophageal junction Adenocarcinoma in August, it's T4 N3 M1 (lymph nodes) inoperable and on palliative care, I'm getting a trial of Nivolumab (Opdivo) alongside CAPOX chemo up to now I've had no issues at all with side effects I have had 4 rounds of treatment, I'm 54 and quite young for this cancer. This time I have had my fifth round postponed for a poor platelet count, also I had a rough Christmas with real bad nausia and more than usual swallowing difficulty, and peripheral neuropathy, the doc said that my tumour although the same size has probably shrunk and is inflamed as I have had black / green poop I think this along with the low platelets suggests the tumour is under attack from the immunotherapy after reading a few posts on the Bristol squibb site (trial drug company) I can only suggest if you have this cancer ask about trials I am quite hopeful of a positive outcome for me, as is my Consultant. Also the use of probiotics (kefir) is essential for success with immunotherapy, that's why they need a sample of your poo to examine, just as an aside low and zero fat probiotics DO NOT Work they need the fat to survive all the way to the gut so yakult and low fat activia are pointless. I get the tesco kefir in the polish section it's £1.45 a litre not nearly £3.00 for 500ml like the expensive ones and tastes just as good in a smoothie with fruit. 

JuanK1ng
latchbrook
Posted by

Hi and a very warm welcome to the online community

I didn't have the same type of cancer as you but I just wanted to take the opportunity of welcoming you. I'm sure you'll find the member's of this group very informative and it's great that you're sharing your experiences here.

Wishing you all the best 

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Thomasninnin
Posted by

My husband was diagnosed with the same cancer as youT4N3M1 in June 2019  and has had 5 cycles of chemo which he tolerated reasonably and is now on maintenance herceptin. He is HER 2 plosives and his PDL is>10. The oncology team says as he is stable they want to leave it as it is and will not do anything medically ( except Hercetin x 3 weeks) until things start to grow. We are wanting to start him on an immunotherapy trial but I can’t find one suitable and the hospital are not keen / too busy to help. I would be really grateful if you cuould send me details of your trial and how you got onto it.? Also it would be lovely to hear how you are getting on Regards 

Nina

JuanK1ng
Posted by

Hi, yes currently, I'm on a trial at Royal Lancaster Infirmary, I got the diagnosis in around September 2019, and while I was in with the consultant, he mentioned there was a trial kicking that might have been closing that week or even the week before, I got a phonecall two days later asking if I was interested, I said yes and the rest is history, unfortunately I believe HER2 precludes involvement, I'm not completely sure but I was HER2 negative, the cancer has receeded by approximately 75% so far and I'm 5 treatments in out of 12 if required, I feel completely wiped out but am starting to get better at swallowing, very slowly, the company is Bristol Squibb Myers, Trial CA224-060, I have Nivolumab followed immediately by Oxaliplatin infusion then Capecitebine for 2 weeks, I also got the short straw with the trial, it's to test the efficacy of either Nivolumab alone with chemo or the new trial drug with Nivolumab plus chemo, so I'm on the control study arm not the new drug, go figure, that said my results are very encouraging, I'll take 75% reduction at less than 50% into the treatment as a win, I still stand by the use of probiotics as a helping hand to the treatment,

I have read although I cannot remember where that there are treatments which can help HER2 patients, I wish you all the luck in the world with this and only regret I can't help you more or give you direction on this matter, all I can suggest is try reading on the Bristol Squibb site relating to this trial and follow any threads to see where it leads, much luck

JuanK1ng
Thomasninnin
Posted by

Hi Juan,

thank you so much for your reply.It makes me feel that I am right and that the real way forward for stage 4 oesophogeal cancer is immunotherapy. Your results speak volumes for this treatment. I will definitely contact Bristol Squibb and see what light they can throw on further immunotherapy trials.Wishing you all the best in your fight against this cancer and please keep me informed on your progress,

kind regards Nina

superleeds
Posted by

Hi Nina

Just wanted to say that I am also a stage 4 oesophgeal mine is on the junction of the stomach.  I have been on Herceptin X 3week for 6 years now and at last scan still no change.  I hope that gives you more hope while you are looking for the immunotherapy, and I would be very interested in knowing more about that so would you let me know if you find out any more. 

Take care Patsy

Thomasninnin
Posted by

Hi Patsy, Thank you so much for your reply and reassuring words.Six years on herceptin is amazing and gives me so much hope.At the moment I can so no trials suitable for my husband in the U.K. bar a maintenance trial at the Royal Marsden but nothing new would come out of that as he is on a 3 week infusion of Herceptin.There seem to be many trials in Europe and USA for immunotherapy but I cannot fathom out which if any would accept him or that he is suitable for. We are due to see the main oncology consultant in 4 weeks so I will see what ,if anything they say and of course I well keep you informed the outcome,Kind regards  Nina

superleeds
Posted by

Hi Nina 

Pleased to hear that I have given you hope, actually in June it will be 7 years and I am feeling really well,   the only thing I can't do is have any alcohol because I faint out with just a half glass of wine, I found that out after collapsing in a restaurant just after I started my treatment, yet other people I have spoken with who are also on Herceptin don't have the same reaction but saying that it is no problem.

I have also asked about trials but nothing has been suitable.

If there is anything you might think I can help with or you want to know anything regarding my own treatment just drop me a line, I live in South Wales and am treated at Velindre Cancer Hospital I am also seeing the oncologist middle of March (I see him  4 times a year) but having Herceptin every 3 weeks until it stops working, so long may it continue.

I will let you know if I find out from my visits to the oncologist anything I feel may be of interest to you both.

Take care and hope you are as suitable and as fortunate I have been with the Herceptin.

Cheers Patsy