Newbie to this forum

19 replies
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Hello all. I have just received an incurable diagnosis and looking for some support. I was diagnosed with head and neck cancer in December 2020 and had operations in January and August last year. A biopsy showed the cancer cells extending to the margin of the area removed in August, which led to radiotherapy / chemotherapy.

January 2021 - a CT scan showed it has spread to top of my lungs and is now inoperable and incurable. I am now awaiting a full body PET scan to see if it has spread elsewhere. I have also been offered immunotherapy to try and extend my life.

This is all incredibly hard to process and try to make sense of. I can see in recent posts that others on here have found a way to both live life and offer some fantastic support to others who also just received a terminal diagnosis. So I am really reaching out for some help and advice in trying to cope with this news.

Nigel

ellie 73 over 3 years ago

Hi I am sorry you have had to join this group, though you are most welcome.

A great lot of support and what ever treatment you might have some one will have had it and can advise.

I had immunotherapy for two years, i was given it because the chemo did not work.There a a few different types of immunotherapy and when you know which one, others will be able to advise, for me it was so mucch eaier than chemo.

Please ask anything you want

and some one will always answer.

Take Care Ellie xx

EG1 over 3 years ago in reply to ellie 73

Hi Ellie

thanks so much for replying so quickly. I think I will be given Nivolumab, every 2 weeks.

Nigel

Elliekate over 3 years ago in reply to EG1

Hi EG1 I have the same immunotherapy as you but icjust have it monthly. I have kidney cancer that has spread to my bones and lungs. I have tolerated the treatment well and am lucky to have had good results so far. Take care

ellie 73 over 3 years ago in reply to EG1

i had a different one, i know they are using immunotherapy for lots of different, i have lung cancer.

It was so much kinder as i said than chemo.

I finished my treatment December 2019 xmas eve, no more treatment as it has stayed dormant, until June this year so i am really pleased i went for it. i then had radiotherapy.

Others here have had what you have been offered, i hope they pop in and can advise you.

Take Care Ellie x

ellie 73 over 3 years ago in reply to ellie 73

sorry Christmas Eve 2018

EG1 over 3 years ago in reply to Elliekate

Thanks so much for replying Elliekate

thats encouraging to hear. Nigel

EG1 over 3 years ago in reply to ellie 73

Thanks Ellie - the support on this forum is so helpful.

Many thanks

Nigel

Popgate over 3 years ago

Welcome to our group of fantastic people who will support you

Flippen

EG1 over 3 years ago in reply to Popgate

Hello Popgate

thanks for reaching out. I can see already that there are some wonderful people on here who support each other. I am glad I have this group.

best wishes

Nigel

Rainieday over 3 years ago

Hello Nigel, It's horrible when you get the news, but somehow we process it all and begin to take stock of things. Firstly, don't take time limits as gospel. They can only guess and many here are far beyond their prognosis - as you will see. New treatments are coming on line all the time and it seems your team have a plan for you which is all to the good.

By all means get the practical things out of the way, such as making a will etc. do everything that gives you peace of mind in that regard and then think what you want to do. Come on here when you want to get things off your chest and offload. We have all been where you are now - one way or another. Keep us in the loop and don't be afraid to say whatever you want. Hugs. Rainie x