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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

EG1 over 3 years ago in reply to Rainieday

Hello Rainie

Thank you so much for replying. I am inspired by the stories you have all been through to date in this group, and the fact that you are willing to support those of us who now find ourselves in the same situation. Yes, my team definitely have a plan. Thanks again for the words of encouragement.

Nigel

Mmum over 3 years ago

<Sending hugs>
I have found that my emotions changed over time. Do give yourself time to come to terms with it. This was a tip I gleaned from this site.
Like has been mentioned already, there's lots of immunotherapy research and trials out there - it's a fast moving area. You might want to ask your oncology team if there's any suitable trials for you.
I start on combined immunotherapy nivo/ipi on Tuesday. I really can't wait.

EG1 over 3 years ago in reply to Mmum

Hi Mmum

Thank you - that’s good advice, I have a meeting with my Oncology team on the 27 January so will ask what other options are available. I agree it’s going to take time to come to terms with this. An incurable diagnosis has been a risk for me for a few months but there was always some hope of a cure. So it’s a still a terrible shock. Good luck with your immunotherapy treatment next week. Let us know how you get on.

best wishes

Nigel

Mmum over 3 years ago in reply to EG1

Urgh! 27th Jan. What a wait! We don't like waiting in this club.

Pet1968 over 3 years ago in reply to EG1

Hi Nigel!

I am on Nivulumab since August 2015 ( i'm in Australia) but as you can see still alive. Had no surgery ( Lungcancer ) and only a few side effects..like Thyroid problems, a rash and at the beginning a dry mouth. But it is worth it, as i was supposed to be dead 5 years ago. Pet

EG1 over 3 years ago in reply to Pet1968

Hi Pet

Thank you for replying. Well, that’s very encouraging and great to hear it has worked for so long for you.

Best wishes

Nigel

EG1 over 3 years ago in reply to EG1

Hello all

So I had my PET CT scan today and get the results on the 27 January. My oncologist has said she will put me on Nivulamb in any event but a week ahead of anxiety about the results again. I will post my results on the results thread when I get them.

Nigel

Remoh over 3 years ago in reply to EG1

I hope the results are good for you, scanxiety is one of the worse parts of this, you really can drive yourself nuts waiting for scan results

Richard

be safe, be nice, be you

EG1 over 3 years ago in reply to Remoh

Many Thanks Richard. Yes, I struggle with it but I think most people do.

Nigel