Hello,
Haven't been on for a good while. The first plan was to try me on neo-adjuvant chemo prior to surgery but it wasn't very successful. The plan was to continue with the planned surgery (sub-total glossectomy and radical bi-lateral neck dissection) and they awaited my consent. I gave my consent after weighing the pros and cons and they did a pre-op PET scan which found spread in the base of the neck which I am advised now can't be treated surgically. I am under the impression that surgery was the only curative option.
I've been told my best option is bi-weekly immunotherapy (Nivolumab) which I start next week.
Does anyone have any experience of this treatment? I've read elsewhere that it's best combined with other treatment but my consultants say its best given on its own. Any advice would be greatly appreciated.
Hi. I have a contact on FB who has been on Nivolumab for five years and he is now considered cured. He had an inoperable HNC.
I can't link it her but I can send you the name of the group via PM. I'll send you a friend request. If you accept I can let you have details.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
PM'd you
You could check out a profile here of another member. He was on Pembrolizumab which is another type of immunotherapy.
Click on his name. He has his website address on his profile
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hiya, yes and my original mole tumours was base of neck 9 years ago which then came back in the tibia bone below knee in Feb 2023 and 7 other areas. Have been on nivolumab for 16 months now and tolerating it well with main side effect being lack of energy. Have infusion every 4 weeks. Had white skin patches on arms after 9 months which isn't an issue to me, I struggle with energy alot a week before treatment in the last 3 months which I have reported back.
Very many thanks. Turns out I was given a four-week dose not a two-week one. Only found out when they cancelled and re-scheduled the appointments. No real side affects so far.
Fingers crossed it stays that way! From the majority of posts I've seen there is very litte side effects
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