Hi,
I have had it confirmed today that I have cancer recurrence in two lymph nodes in chest. I have an oncology appointment on Monday. My specialist nurse said they want to start me on immunotherapy (Nivolumab). Does anyone have any experience of this or know how effective it is? Thanks
Nicola
Hello, I can't help very much but my aunt had Merkel cell carcinoma some eight years ago. Her treatment included radiotherapy and chemotherapy which didn't work. Time was short and at the time immunotherapy wasn't available in the UK at the time so she moved to The Netherlands where it was available. I I am delighted to say that although she was 80 years old the immunotherapy worked and she is now free of cancer and has been for two years. If she was still living in the UK it is likely she wouldn't be here to tell the tale. She is now living a cancer free life and is so grateful for having the opportunity of having this treatment and extending her life. I appreciate there are many types of immunotherapy as there are cancers. However, whatever you decide is best for you I can only say If something can help you live longer, what have you got to lose?Best wishes.
Thank you so much for your reply. It has given me that most precious of gift ( hope) in a very dark time. If I have some hope, however small, I can find the strength I need to carry on. So, bless you for replying - I don’t think I will get many, but you have made me feel a bit better. 🙂
Please let me know what you decide and how you get on. I am genuinely interested and would like to keep in touch with you. Importantly and remember try to have a positive attitude to the future, Now is the time to really look after yourself, eat healthily, enjoy nature and keep strong, These things help when you are at your lowest ebb.Xxx Chrys
Hi Da1sychain / Nicola, I have had 3 rounds of Nivolumab and doing it concurrently with FOLFOX chemo. Wide range of responses is the short answer - full bell curve of results according to my oncologist. It's new for the treatment of EC so I think the community is still learning, the promising results come from a recent checkpoint study. Feel free to message me directly. My best wishes to you
Hi Brett, thanks for your reply. Sorry to hear you are going through this too. How did you get on with the Nivolumab? Did you get any side effects from it? Did you have it two weekly or four weekly?
I haven’t spoken with my oncologist yet , just my specialist nurse who gave me the bad news and said the oncologist was going to talk to me about Nivolumab. No mention of chemo with it, but I have an appointment with the oncologist on Monday so should learn more then. I’m going to ask why they just can’t either remove the nodes affected by surgery or zap them with radiotherapy. I’m just worried that if the immunotherapy doesn’t work that it will spread beyond nodes and be harder to treat. I guess they want a more systemic approach.
I hate these decisions. I have two daughters of 9 & 11 and really want to be sure I am going with the right treatment options for their sake. Have you looked at anything like cyber knife or proton beam therapies? I know they are expensive and I would probably have to go privately but don’t know how expensive or how effective they are at lymph node removal. It’s another question for the oncologist- I hope she has got plenty of time as I have lots to ask!
What is the plan for you going forward? I’m assuming you are still taking the Nivolumab and having the chemo? When do you finish? Or will you be going for some time yet? Have they said whether the treatment can get rid of the cancer completely or is it a case of managing it? I really hope that it gives you good results. Best wishes
Nicola
Hi Nicola, plan is 6 rounds of FOLFOX chemo each fortnight and immuno as well, which will continue beyond the 6 rounds. I don't think I have had any immuno side effects but hard to know for sure when I'm doing chemo concurrently.
The checkpoint study was all about chemo + immuno. Proton therapy is not available in Aust and cyberknife is not commonly used either. Post chemo and scans we will assess where I'm at and hopefully radio could be an option.
Let me know what your oncologist says in terms of your treatment plan. I'd be surprised if its immuno only! Effectiveness of immuno is also tied to PDL-1 score, which they can test for in the US (not share about the UK - is that where you are?) whereas in Aust they cannot test for it.
Can I ask, is your cancer AC or SCC? What treatment did you have previously?
My best wishes and please keep in touch with me.
Brett
Hi Brett, how’s it going for you? I have Squamous cell type. I went for a private consultation with the Royal Marsden in the Uk and have been offered a place on a trial for a new drug called an antibody drug conjugate that works on the LIV protein. The drug company is based in Seattle and they are trialling on several different types of cancer. My Nivolumab is due to start on Monday so I have to decide what to do. I’m leaning towards the trial as they have said I can still go back to the Nivolumab if the drug on the trial isn’t working for me. I will get a scan every 6 weeks on the trial so should be able to see if it’s working after 3 months. I’m told I will have time to do both. It’s a bloody hard decision though, but at least I have options! Take care and let me know how you are doing.
Nicola
Hi Brett, how are you doing? Nicola
Hi Brett, just wondering how you are getting on with your treatment? I am about 5 months into my clinical trial of monthly Nivolumab and daily regnarafonib tablets. First scan showed a reduction of cancerous lymph node by 30%, second scan was stable. I’m having another scan in the middle of January. Have you finished your chemo now? Are you still on the Nivolumab? Regards, Nicola
Hi Nicola
I have been following this post and wandered how you are doing?
Just like to check in and see what you decided.
Hi, thanks for asking. Long story - I went with the trial and cancelled the Nivolumab. Just before the trial was due to start the drug company pulled out of the trial so I had to reschedule the Nivolumab. Just about to start it and the Marsden contacted me with another trial, this time it was Nivolumab plus a targeted therapy tablet. I went with the trial, started on 9th August. First cycle and I ended up in hospital for 10 days with high fever and all over body rash. Had 4 different types of antibiotics but they never did find the source of any infection so not sure whether it was trial related or not. Second cycle has gone better. Due to have first scan at the end of September so 🤞. Nicola
Fingers crossed for you.I hope your still doing ok.
Let us know how you get on. We read these threads and almost become involved with all the experiences each of us goes through, if that makes sense?
Yes, it makes sense. Will update after scan. How are you getting on?
My partner had T3N1 and had the IL in November 2017. He was left with a fistula between his new esophagus and his windpipe, so after 3 years of different operations to try and fix it they have all agreed to call it a day. He is otherwise OK. But due to the problems with eating and drinking he has lost a lot of weight. So I am typing this reply from the waiting room at the hospital as he is having a CT scan (the 1st scan since his op in 2017) to see if there is any change.
It always makes you nervous with these things.
They do not do follow ups where we are to check for reassurance so it is literally wait and see.
That’s tough for you both. Hoping the scan results are positive for you. Waiting for the results is awful. It’s horrible because you can’t do anything and even if you try to keep busy you find your mind drifting back to it. Please let me know how you get on.
Hi, just wondered how your husband is getting on now? I am about 5 months into my clinical trial of monthly Nivolumab and daily Regnorafanib tablets. My first scan showed a reduction in size of cancerous lymph node, the second scan showed it was stable. I have another scan in mid January. Hope all is well your side. Nicola
Reactive hypoglycemia
Bad dumping incident?
advice please for Creon 
Survival rate of esophageal cancer. 
