New to group

Lass, and me lol

Hi Alan 

This info is a good place to start to understand clinical trials 

https://www.macmillan.org.uk/information-and-support/treating/clinical-trials

It’s your oncologist who will know more about trials running in your area that might be suitable for you. Usually, you move to clinical trials after standard treatment has been exhausted but it’s worth flagging up your interest early with your doc. 

I hope that’s enough to get started. I can bore for England on the subject....

xx

I see my oncologist in two weeks time I will push my interest in clinical trials, it is good to know there are other options open to me other options give me hope rather than being told nothing can be done.

Thanks I will now click on the link and learn more, you can bore me as much as you like with information like this, I am grateful.

Hi /Alan

It is lovely to meet you.  I have some experience of oesophageal cancer as my father died of it about 13 years ago, 18 months after being diagnosed with it.  He too hated the fact that his food was liquidised although he did have an operation to remove the tumour which did eventually enable him to eat solid food again.

I don't say this to depress you but when I first joined the community I had a look at the Oesophageal community out of curiosity but had to stop going there as I realised that treatments had moved on significantly since my dad was treated and I became quite sad when I realised that it he had been diagnosed a few years later he may have survived longer after his diagnosis.

The unofficial member of this group is hope.  Many people outlive their prognosis often in large part due to advances in the treatment available.  The many other members of the group mean that you never have to be isolated even if you are alone.  There are a large variety of lifestyles and members from other countries so you can usually find someone here at just about any hour.  If not we have been invited to join in with the "awake" thread in the Breast Cancer group if we want to chat in the middle of the night.

I personally am a big fan of autocorrect and the random element that it brings to communication.  It is a small thing but I get my amusement where I can.

I look forward to talking to you again soon,

Gragon

Hi gragon,

Sorry to hear about your dad, I regret to say I have not been offered any treatment everything I have been told is negative, to far gone for an operation - if you have chemo your body will find it hard to take, your oesophagus cancer has spread to your liver, we think you may have 12 months, my Macmillan nurse we have not got a follow up appointment with an oncologist we should get one in 2-3 weeks and I will see you there ? Phone if you want to talk ?.

Sorry to say I feel like they have given up on me I am not expecting a cure I am aware how bad my condition is but I would like to put up a fight to get a little more time just some one to say let's try see if this will help.

I am not one to just give in but I need help to fight this.

Hi there,

Welcome! Cannot say I am an active member. However, I also got a 12 months expiration date when metastasizing (liver and lymph nodes) while on chemo and rads. Immunotherapy has been approved for some esophageal cancers in the US (https://www.cancer.gov/news-events/cancer-currents-blog/2019/pembrolizumab-esophageal-fda-approval ). I was offered Pembro on a compassionate basis before it was approved for solid tumors (not approved otherwise for my uterine cancer) and it has worked for over 3 years now with minimal side effects in my case. You may want to ask them to biopsy your tumor for any relevant genomic alterations like MSI-H for Pembro or any of the new and outrageously expensive drugs. 

Jamit

Hello Chuddy

I am so sorry you find yourself here. This group is amazing

 I hope you find some comfort here

X

Hi Alan

sorry to hear your news but you will find your not alone as I did when I was diagnosed.

Im always thankful I found this site there is always someone on here who seems to understand

what you are concerned or worrying about  Take care.

Thank you for your time and advice.

I regret to say my oncologist is not looking at any treatments, I have received no treatment they are looking at pain control only.

Apparently they are looking at what is best for my quality of life not length of life, they have said if I try chemo it may prolong my life by a few weeks but my quality of life would be poor, they are recommending pain control only because the liver cancer is very agresive, I have been offered a stent to help with eating for the oesophagus cancer but that's it.

I am having trouble accepting the diagnosis and the feeling of not being able to fight to live with the support of medicine, but the fight and strength I have / had is slowly going due to no support and I am accepting that's it. 

Even over the last week I am experiencing new symptoms, pain, poor eyesight lack of energy the hospice care team are taking over this week, I have no idea what happens next but all I can do is listen to the so called experts.

I thank you for taking the time to post in the hope of giving me an option, I see my oncologist in 2- 3 weeks, no set date as yet, I will mention your advice and one other from squire s post.

Kind regards

Alan ( chuddy )

Dear Alan

I’m sorry to hear you are not going to be offered any treatment options, it’s a situation that many of us will face eventually when we run out of road. It’s good you are going to engage with palliative care via the hospice, they have the expert knowledge to keep any symptoms or pain caused by disease progression to a minimum. This may be controversial to other forum members but as a terminal patient I do not find some of the language surrounding cancer helpful, “fighting,beating” etc, as someone with with a incurable blood cancer there is nothing I can do about it other than to take my pills and hope my body reacts in the way the it’s supposed to. I prefer to use my energies to create an acceptable quality of life, spend time with my loved ones and experience joy when it presents it self. I don’t consider this giving up, which is terminology that I also find unhelpful, having cancer is burden enough without having to deal with an externally imposed guilt trip that somehow I haven’t done enough to cure myself. So my advice to you is take all the help you are offered and then put all your energies into living the best life you can given the circumstances. This is obviously only my opinion but it’s a sincerely held one born out of real life experience and although others may not agree with my approach my thoughts are still valid.