Nivolumab

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.

Cheers.

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

 Crofterlad 

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.

Wow this is amazing to hear..love stories like this, gives me so much more hope for the future!

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 

Hi! I've had 9 x four weekly cycles of Nivolumab for stage 4 clear cell renal carcinoma kidney cancer. Going well. Fatigue builds after about 3-4 cycles. Also I get nasal congestion, normally overnight it builds up and then grim in the morning. Good nose blow, always blood in the mucus but nothing too bad. Could be worse!

Greatly appreciate the reply. I'm about to have dose three and have no real side affects so far. I have not had tiredness and walk approx. 3-4 miles per day. 

My tongue tumour seems to have got a lot smaller after only two doses and the whole tongue is as soft as it was before the cancer. I can now eat a full range of foods, as even a month ago I had to eat soft because of the trouble chewing with a hard tongue. I am astounded with the progress, but it's very, very early days. I'm yet to have a full scan since starting but I'm hoping it bears out what I can see and feel with my finger. Probably the only 'good' thing about tongue cancer is I can just open my mouth to see the little bugger.

Many thanks for taking the time to reply, I hope that things continue to go well.

That's great news. Keep going. Around treatment #5 I had a sort of 'hungover' feeling the day after immunotherapy which got worse after #6 and #7 (so a 2 day hangover, real works Xmas party special) but then after #8 was better and #9 had zero ill effects whatsoever. So you just have to roll with the punches. A wee bit unpredictable...but manageable.