Immunotheraly

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

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

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

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

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

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

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 

Hi Nina, 

you had been speaking with my dad who is the original poster.

Just wanted to give you an update. Since around February/March my dad started to become more poorly. Nothing to do with cancer just treatment started taking its toll on him. After few months he was struggling to eat without been sick, he had a stent fitted right before lockdown as he was losing a lot of weight. 

he started getting really bad pain in his chest around his main tumour. He was 9/10 in pain a lot of the time and was getting in the bath at 2am. They started him on morphine and ended up on 20mg and then went on to patches. 

On the 15th June my dad got his 6 weekly scan results that was taken 2 weeks prior to the 15th. Everything was loopy great all Secondaries had shrunk by 75% and with the stent then struggled to see the main cancer but it hadn’t grown and they said the pain was down to the cancer breaking down. His dr had said he was likely to have a few years left in him which was amazing! 

Thursday 25th June he was admitted due to bloods showing abnormal levels due to his liver. They scanned him the Friday to see what was going on. 

Monday 29th June mine and my dads birthday we all got called in for an emergency meeting. Considering we weren’t allowed to any apt since COVID and since he was admitted we all thought the worse. 
the dr explained my dads cancer had started to mutate in his abdomen and this had come since his last scan and his treatment had stopped working. His  liver was failing due to the immunotherapy attacking his liver  as my dad had an overactive immune system and needed to start him on an immunosuppressant which he a was a on for 10 day to try reverse the danger of the immunotherapy but unfortunately it didn’t work. 

Thursday 9th July we were told he had a short number month, potentially weeks left if his liver doesn’t start responding. 

Friday 10th my dad rapidly deteriorated and we got told weeks. 

Saturday 10th his levels had risen from what should be between 20/40 and when first admitted were around 95 had now gone over 500. We got told his liver and kidneys had started shutting down and he was going into organs failure and nothing more they could do. He safely passed away with me, my sister, my mum and his brother on 15th July and we are truly devastated at how quickly things turned upside down. 

so sorry for this horrible long post but I just wanted to share how things can flip and change and it’s not always the cancer that get them  

if anyone has any question please ask. I would just say to think twice about immunotherapy as it is still a trial and they are still trying to get it right and it does come with risks.