Hello I’m new to this group.
I was diagnosed as stage 4 Esophageal adenocarcinoma with mets to liver and abdomen in March 2020.
I was given two types of standard chemo from April to October 2020 before having a treatment break. It was during this time that I started researching alternative treatments because I was only being offered a second line chemo if my cancer continued to progress. I opted for a clinical trial for immunotherapy and started on that in February 2021.
So far my results have been good and the lymph nodes in my abdomen that they are measuring have returned to a normal size and everything else is stable. Although the treatment is going well I have had numerous issues with pain caused by inflammation from the immunotherapy. The clinical trial refers me to my doctor for pain relief (they say I have pre existing conditions such as arthritis so need to get this treated by my doctor even though I’ve had no problem with it prior to treatment). Unfortunately it is almost impossible to get an appointment at my doctors - it’s got so bad that I have had to change doctors (I don’t know how much easier this new practice will be to see a doctor). I also spoke to my GI nurse where I used to have my chemo and they’ve told me I am no longer being treated by them, so they won’t help me in any way.
I’m left feeling like I have no real cancer support at all.
can anyone offer me any advice?
Hi and a very warm welcome to the online community
I'm sorry to read that you're feeling that you don't have any support at the moment but you've come to the right place for that.
The online community is divided up into different support groups so I'm going to recommend that you join the oesophageal cancer group which is a great place to ask questions, share experiences and get support.
To join the group just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
