I created this post, not really knowing how it works hence I'm the first post to it.
The general idea was to connect to people like myself who have been offered palliative care.
In my case chemo and immunotherapy, but would like to hear from others also are in the same situation. I'm 3 cylces into my CAPOX treatment with a scan next week. Immunotherapy scheduled for 2 years
I was wondering if we have members further down the track and how they are coping with their treatment.
Is your disease primary or secondary? My wife has inoperable secondary squamous cell OC - so we are dealing with a similar situation.
In our case, the diagnosis of secondaries was made about a year ago. After that, my wife had a lengthy period of chemotherapy (capecitabine and oxalapatin - so exactly the same as you I think) which she tolerated fairly well, and which was very successful in halting the symptoms. Unfortunately, the symptoms have now returned, and we expect to embark on a round of immunotherapy fairly soon.
Emotionally, it's a hard road. My wife is very stoical. I myself have big ups-and-downs - but of course I try to be strong for her.
I'm curious about what you've written about your own immunotherapy - specifically that it's 'scheduled for two years.' What's the specific treatment you're getting?
My squamous cell OC didn't respond as favourably as they'd hoped from chemo-radiation and the tumour had now increased.
I'm due to start immunotherapy soon, Opdivo, every 2 weeks for a maximum of 2 years. Had blood test to see if my bloods are suitable to get started and just waiting again, for the next chapter. Just want to get on with it as I have a very annoying cough that's recently developed.
Having now read your profile (which I should have done before I first replied), I infer that your cancer is a primary one. My wife had primary OC, and had successful Ivor Lewis surgery in early 2020 to remove it - but, sadly, it's now returned as a couple of inoperable secondaries. So our situation is a different from yours - but, in practice, it sounds like we're facing similar problems.
If your oncologist has a plan for two years of treatment, then that's very encouraging news. Hang on to that - I hope your treatment goes spectacularly well! In our case, the hope is to get as much symptom-free time as we might be granted - and then to use that to get some nice things done. But we'll just have to see how things go.
I have a couple of questions for you - no problem if you don't feel like answering of course:
1. What's the reason for your primary being inoperable? Have you had that fully explained?
2. How are you eating just now? Can you eat anything normally? (My wife had an n-g tube for about four months prior to her surgery. It's not pleasant to have to deal with.)
In any event: all the very best to you. I know how hard this is.
I'm interested, since - all being well - my wife is expected to start on Nivolumab/Opdivo for her secondaries soon. (I'm not sure of the exact protocol/timescales yet though.)
The reason given for it being inoperable is that my tumour is located in the upper/mid oesophagus and the lymph nodes down and below the coeliac axis are effected and there is an indeterminate upper left lung nodule.
Right now I'm eating normally as long as I chew all my food thoroughly. I've been caught out a few times when I forget to eat slowly and sometimes I have to regurgatate a mouthful of food, but I can go back to my meal and finish it. Its been a big improvement as 4 weeks ago I was struggling. Really having to concentrate when swallowing even liquids.
Sending love and positive thoughts to you and your wife.
Thanks very much for the reply, Steven. For me personally, in trying to cope with this situation it has very much helped me to try find out as much as possible about the details of this disease. I realize that not everybody affected reacts in the same way - but that's how it's been for me.
> The reason given for it being inoperable is that my tumour is located in the upper/mid oesophagus and the lymph nodes down and below the coeliac axis are effected and there is an indeterminate upper left lung nodule.
Ah, right, thanks - that explains it. One of my wife's secondaries is around the coeliac axis - and I gather from our medical team that that area of the body is very much 'tiger country'.
> Right now I'm eating normally as long as I chew all my food thoroughly. I've been caught out a few times when I forget to eat slowly and sometimes I have to regurgatate a mouthful of food, but I can go back to my meal and finish it. Its been a big improvement as 4 weeks ago I was struggling. Really having to concentrate when swallowing even liquids.
Under the circumstances, that sounds like a very encouraging result, which I'm very pleased to hear. I hope that your current treatment will improve things yet further.
> Sending love and positive thoughts to you and your wife.
Thanks very much - I appreciate that. And it goes without saying: the same to you.
