immunotherapy Nivolumab Opdivo

I have not had nivolumab, but I have had Pembrolizumab. Both drugs are PD-1 inhibitors.

This is my understanding of PD-1 inhibitors from a lot of reading and from my own personal experience. They work on cancers that use the PD-1/PD-L1 pathway to ‘hide’ from the immune system. By breaking the bind between PD-1 and PD-L1, the immune system can ‘see’ the cancer that was previously hidden.  You may wonder why this pathway exists for the cancer to mimic it in the first place. The usual way your body uses this pathway is to create immune privileged zones around critical organs - pituitary, endocrine system, kidneys etc. So when the pathway is broken, your immune system can also see lots of other things it didn’t previously see. The huge list of side effects are the things that can happen if your immune system takes a look at your body and decides it doesn’t like the look of it. When this happens it’s known as an immunotherapy related adverse event (IRAE) and it can become very serious very quickly. 

These drugs can work really well, putting cancers into a stable state or even into a remission that can last far better than a remission induced by chemo. They don’t work for everyone, but there’s no way of knowing without trying the drug (you won’t have been offered it unless your tumour is expressing PD-L1)  

So it’s a risk and reward thing. I had to stop pembro after 6 infusions because I had a serious IRAE that damaged my kidneys, thyroid and lungs. I had to take high dose steroids for 9 months to save my life / minimise the damage. I still live with the consequences of the IRAE and the months on high dose steroids. But, and it’s a huge but, just 6 infusions has put me into a remission that has lasted for 14 months and counting since I had to stop pembro, and I have not had any further treatment other than a clear out of the small stable residual disease still there when I had to stop.  I have never asked for a timescale prognosis but I don’t think I would be here now if I hadn’t taken pembro.

If I had my time again, would I make the same decision - you bet!

My key piece of advice is react to anything that doesn’t seem right really quickly. The sooner they get an IRAE onto steroid recovery, the better the chances. 

Hi Coddfish  Thank You for the heads up . To be honest with you I was just delighted  yesterday when the oncologist said the scan showed no change in my neck and head as I have been having pains etc but apparently unrelated . That is well worth knowing what to keep an eye out for . I kind of expected the cancer to be back as the oncologist said it would come back . Yes its a no brainer the treatment again , Round four here we go again , Duly noted to be on alert for any changes . All the Best Minmax

Yes that's right, it is now only 2 years. But when i started they didn't know that. So i had it longer, off now since last year February i think.

Hi Pet1968 That is amazing that you were on it for 7 years . Yes you are correct apparently it's only licensed for 2 years now . I wonder about going away while on this treatment as oncologist said I can do whatever I want if I feel ok. I am wondering do they put a permanent picc  line in . Which would affect swimming. All the Best Minmax

Hi sorry to bother you, my brother was DX Friday, with Head and  Neck C, how did yoi find the treatment at the start of the journey.

Did try reading your profile, though not one, only looking for advise. Really.

Thanks

Hi Ellie 73 I had base of tongue cancer and apparently the treatment is supposed to be one of the worst ones , I had 30 x 65grys and was supposed to have 6 carbo platin but only had 4 due to white blood issue and got admitted to hospital. I hope this helps in some way but I dont think it may apply as his sounds different . Ask anything you want please Glad to help . All the Best Minmax 

Hi Thanks, his was found in a fold in Tonsil, though in a     node  in neck and a large  lump  there.

His is seven half weeks radiotherapy, and 3 chemo's, at 8 hours  duration. Got to have his 4 wisdom teeth out next week. 

Thanks a lot, it helps, i have to find out for him.

Hi Ellie 73 They usually take the teeth out before you start radio . Let the hospital extract the teeth . I was quoted about £900 by my dentists mate and the hospital did it in under two hours. A blender and shakes will become his best friend , Has he a line in yet for feeding ? 

The Hospital are doing it in a London one.

They have not said anything regarding a food tube, i thought they might.

He had loads d robotic biopsies and being a diabetic, landed up with a diabetic hypo,  in hospital for a week be honest he has not eaten a meal since, small snack. little and often and that was two weeks today, just one thing after another.

He knows u belong to the forum, told him not to google.

Baby brother so I am i  charge the eldest.

I know what to get him for xmas, in stead of his Bootle drink, a Blender.

Well been told no more Alcohol.

Thank you so much

Hi ellie 73 He is in the best place by the sounds of it . To be honest I dont think I would be here only for this forum as no one to turn to.  Yes I had a load of FNA as it spread to both sides of head lymph nodes. I was a big drinker also maybe not the time to mention stopping drinking. Let him get through his treatment first and see how he deals with everything . All the Best Minmax