hello

Hello canalman

Thanks for joining this group, I know you might not want to be here but we are a great bunch. Can I please tell you that my husband was put on palliative care just over a year ago, his treatment has worked really well...so please don't give up hope.

Can you tell us more about your diagnosis, so that we may better inform you.

Stay strong and positive x

Lowe'

Hi Lowedal thanks for replying.. It all started with swallowing problems a month ago up to an endescope

and ct scan shows a 12 inch tumor which makes it to large to operate... So yesterday the doctor said sorry we can only refer you to palliative care outlook 6 to 12 months

Hi again,

Thanks for coming back to me,  like yourself my husband was advised that surgery is not an option, he was told quite firmly that even with treatment he had a prognosis of 12 months, just over at most., therefore, we lived with a terminal condition which caught us off guard and well and truly knocked us off our feet.  

Nearly 14 months on, and after receiving chemotherapy combined drugs for 5 treatments and then trastuzumab (Herceptin) which is a monoclonal antibody used as targeted therapy, mainly in breast cancer patients but more recently it has been trialled on other cancers. It seems that a person needs to be HER2 positive which initially Dal was told he was not.. which is why they changed his treatment after a few months to include the immunotherapy drug.

Please ask your consultants to test you for HER2, ask about immunotherapy if you can.

Just over a year ago we were being told the same as you, but although Dal's treatment continues, a few days ago we were told that the scan shows no sign of disease. At diagnosis, his  adenocarcinoma tumour in the Oesophagus was inoperable, he also had liver, lung and lymph node mets, today, thought they can't be seen on a scan, we continue to fight them, I wanted to share this with you to let you know that a prognosis is not a full stop. 

Thinking of you as you start this journey and hope for some positives coming your way

Lowe'

I have not checked back as I was even more depressed by what I read but having just read this I am encouraged to keep listening..The next hurdle is if the palliative care hospital decide to take me on this Tuesday...otherwise its another SORRY there is nothing we can do....Thank you

Never give up!

Fight, fight, fight!

How you face this now may have an impact on the outcome.

You have both the power and strength to beat this 

Take care of you x

Lowe'

Thanks its all very new and i still don't know if i will be accepted for treatment....When these departments have a meeting once a week I wonder if they could even imagine in their worst nightmares waiting when you have 6 Months to a year Maybe

Have you heard anything more Canalman?

How are you?

Lowe'

Thanks Lowedal I have not been back before as I only had a phone consultation today with the treatment doctor who has booked a scan and then 5 Radiotherapy appointments to help with the swallowing which is difficult at the moment and he said would get worse after the treatment for 2/3 weeks and then hopefully better in order to build up strength for chemo to give me as much time as possible.

I would like to hear from people  who have stage 4 and had radiotherapy as to how bad it might get....I may post this as a new thread...Night

Hi Canalam 

I am sorry that you find yourself here, but it really is a lovely supportive group. 

My dad was diagnosed March 2021 & was told initially that due to the size of his tumour & the location of it they were hoping to treat it but not able to cure. He is stage 4 also. He couldn’t have radiotherapy due to the location and size of the tumour making it too risky for his heart and other organs. He then had another appointment with the consultant (face to face this time) & was told due his age - he is 66 nothing is off the table, they will try everything with the aim of cure. What I have found is things can change so quickly! 

My dad started intense chemo (FLOT) - 4 rounds and has just finished this. He has had another scan & last night got a call to say the scan shows significant tumour shrinkage so he is definitely a candidate for surgery now. 

The treatments on offer now seem to be very effective, and my time in this group I have seen so many people who was told there was nothing that could be done & years later they are still here fighting on. 

Keep fighting - you can beat this, please keep us posted & sending you very best wishes.