Starting Ipi/ nivo

• Hi there, I have inoperable def stage 3 and probable stage 4 melanoma and have only known ipi and nivo as treatment. I'm currently having both intravenously, one takes an hour and a half, the other an hour with a flush of 20 to 20 mins either side. For me I saw results within a few weeks and after one treatment and just before the second 3 weeks later I became completely pain free, no painkillers needed!! Now I've had side effects, tiredness, a lack of energy, skin rashes, struggled to moderate my body so sweats and shivers at random times of day and night, mild headaches and my mental health has at times struggled as a result of these. I'm currently OK on a high dose of steroids to counter high liver readings after 3 treatments so that may delay or reduce the dose of my next treatment  BUT... Its worked brilliantly and its so worth going through the side effects for the results I've felt and physically seen... Just amazing and I'd encourage you to go for it. 

Hi Craig 

thank you for responding to me, you have had a very positive experience with this drug, which is brilliant. 
I think Iv read to much negative information about the drug, which is worrying me. However saying that I am going to go ahead and am now waiting to be booked in as blood tests are all done. 
However I am also thinking if Pembrolizumab hasn’t really been effective how will Ipi/ nivo as these drugs are also immunotherapy. saying that iv not had any spread so the pembro must be doing something to hold things back. 

what brilliant news to be pain free, I would love to say that in a few weeks time… I have been in pain every day since November last year. But I have had 3 rounds of surgery on my right shoulder , lymth nodes at the beginning of the year. I now have a partially collapsed vertebrae in my lower spine. I’m hoping there’s drugs will work, before any more damage is done. 

Are u still taking the medication? Are you now NED ? 
sorry to have rambled on it’s just so nice to talk to someone in the same boat . 

many thanks and wishing u well, so good to hear good news. 
Sun

Dear Sun & Craig P, you are being so brave, I wish very hard for things to go your way.  

My Oncologist, cancer nurse & myself, with previous input from surgeon also, have decided to hold on immunology - due to my age, my own inclination and because of my Rheumatoid Arthritis which would make it v difficult.  They will monitor me and we will wait for a tipping-point, when the cancer starts to make me iller than giving up my RA control would, to make treatment is worth trying.

We are all different.  I am content with things this way.  I am getting a lot of support, incl day-hospice, so can get on & enjoy my life.  I do no more than get the gist of what’s happening from Google and even MacMillan, more would only alarm me unnecessarily.

Sincere bestwishes.