Hello
A year ago I had an operation for v aggresive stage 4 maxillary cancer - most of the maxilla was removed of and replaced with what seemed like most of my L leg (free flap fibula). This was followed by radiotherapy BUT, a few days ago, I was told it was back in my nasal/sinus cavity and more aggressive than ever. Three v scary words: terminal, palliative + immunotherapy.
I have been given v little realistic hope + the words "quality of life" kept being used re the palliative treatment.
However, possibly the worst thing is that the oncologist was unable to give me any advice on treatment options since the success of each seems to be largely luck and it's not known which would be best - swings + roundabouts/6 of one +1/2 dozen of another/toss a coin plus going for one apparently excludes another!
I would like another MRI to see if it's progressed since the last one a month ago - if it has the more aggressive chemo would be better - but the oncologist says no as the last was too recent but. obviously desperate, I would get one privately just to help the decision which has to be v v soon.
Yet another complication, the "Pembro" only really works if the tumour produces a specific protein - sent for testing in biopsy 2 weeks ago but results not back yet so decision will have to be made without them.
Sorry, I know I'm waffling but other than the "don't know/your decision" the medics can't advise so just wanted to know whether anyone else has had to make this decision and/or has anyone had or knows anything about these drugs.
Thanks - they've only a couple of days to decide!!!
Oh Too Fast, so sorry to see you here and with such a choice to make.
First, I'm not a doctor so can't really give any medical advice but I do have a friend who, although having a different head and neck cancer, has faced both the chemo therapy you quote then immunotherapy so I can't quite understand why your oncologist says one excludes the other. He's not well now but he has had two years of life he wouldn't have had without treatment. You're right. You need a high PDL1 score to have any chance with immunotherapy, it has fewer side effects and there have been some remarkable responses.
Richard has a blog HERE if you want to have a look
All I can do is wish you the best and hope you can come to a decision that suits
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
