Hello all,
I had my 2 monthly scan on Saturday and went for my review today. Sadly I'm out of the "stable mable" group for now. I have my last immunotherapy tomorrow as my tumours have grown. Not the news I wanted to hear. They have said I can have radiotherapy to my chest and right lower lung and it won't be as harsh as my previous radiotherapy to my throat. I will have pain swallowing, which is really worrying as I've gone under 50kg and have difficulties with swallowing as it is.
I'm due for surgery on 25th which I've been waiting for over a year because of Covid! This will be to make a new airway so I'll be able to breath through my nose, taste and smell again. I was so looking forward to this but the news today has put a real dampener on that now. I'm trying to stay positive as the consultant has said if the radiotherapy works there might be a chance of resuming treatment.
Has this happened to any others on here? Did your immunotherapy start again?
Thanks,
little-fi xx
Hi Tim,
Sorry to hear you're in the same position. What have your team offered to do for you if you don't mind me asking?
I hope there is some other treatment for you.
Best wishes
little-fi xx
Hi little-fi, where am I at now in treatment? I’m having surgery on Thursday to procure my largest accessible lymph node from my groin for a Thetis clinical trial. They will take blood samples and the tumour to assess the tumour dna and look at how my own Tcells work against it. They will then grow in lab the most effective tcells to fight my own cancer, which takes 12 weeks. While they are getting ready I can after I’ve recovered from surgery start targeted therapy drugs, my team have got compassionate grounds approval from a pharmaceutical company, so that should start in November. Then in January when the personalised Tcells are ready we assess how things are going and see if we leave them in storage a bit longer or put them to use. So a fluid plan at the moment.
Take care KT
Hello little-fi, I've just seen your post. Hang on in there and re-group yourself. It seems options are possible so the door is far from closed and, as we all know, new things come on-stream all the time. I certainly had a big weight loss issue after my last hospitalisation. My Greek doctor brought me in Total Greek yoghourt with Greek honey and chopped walnuts. It was easy to swallow and, as you might imagine, very good for helping to put on weight. And the bonus is that, as far as a medicine goes, it's very, very nice! Keep trying to keep positive little-fi Rainie x
That’s good news Tim- all the best with that. Xx
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