neilarama2017

Hi I finished my opdivo 2 months ago and had this with my hands while sleeping it would cause me to wake up.  Never really thought it had to do with the nivo but has definately stopped a few months back.  This used to happen to me 20 years ago and I wore a brace to help from sleeping on the hand.  Makes sense that had it had to do with the med since it has subsided.   Hang in there, its annoying but small side effect in the big picture of it all.  

Your in the right place, dont go Googling anywhere else, it's all old info.  Thats the worst thing you can do.  Sounds like you caught it very early which is a very good thing. Good luck. 

Hello, I feel as if I am in a similar boat.  Stage 3B, My colleagues at work see that Imback now for several months and its like I was out with a cold and he's fine.  But none of them have read anything, let alone the older statistics.  Even my wife has like pretended this never happened.  I tell her Im real tired lately (Opdivo) and she says ya I know me too.  It's tough, unless it's happening to you, you just really don't know and understand.  Unfortunately our fears are valid to us (the ones who truely understand).  We just have to push on and try not to worry until we need to, which is easier said than done.  My son just had his 7th birthday and he really does a good job at helping me not have time to think about everything going on.

Best of luck to you and your family

Neil

Hi, I am having treatment #16 this week with 10 left to go.  I go everyother week for a 1 hour treatment.  I have experienced headaches earlier in the treatment.  They are very rare now, havent really had any in a couple of months now.  I was told the pituitary gland gets inflamed and can cause these headaches.  Fatigue has gotten a bit worse especially trying to wake up in the am but that seems to be the worst part of it as of the moment.  Feel free to message me with any questions.  God bless.

Thats awesome, so encouraging to know that there is hope.

Thank you for posting.

I have been on Nivo for several months now and this seems to be a pretty common side effect, most likely a swelling in the pituitary gland.  I was told Tylonol should help this and usually does.  It's more of a central headache that you would have to worry about.  At this point Im at this has definately decreased and I barely get headaches now mostly just pimples here and there and irritated eyes.  Hope that helps some.

Neil

Hello, Im about 5 months in with Nivo for stage 3B, after having all nodes removed from my left armpit.  So far so good, no real big side effects (pimples and minor rashes but that's about it).  I chose the Nivo over the clinical Ipi/Niv.   I go in every other week and this will be my 10th treatment and 3rd scan.  all clear so far.  Id be more than happy to answer any questions you have, and I wish you the best of luck.

Hello, hope your battle is going well, I started Opdivo as standard of treatment one of the first weeks it was released as a treatment in early Sept 2017.  Just had my 9th treatment, so far so good.  Some pimples and minor skin issues along with a bit of fatigue usually right when I wake up but good otherwise.  Wishing you luck..

Has she tried a lymphedima pump for the swelling.  Most insurances will cover one, I use mine for my arm a few times a week and it definately helps, Tough with the leg as its mostly in the down position.  But elevating it when not standing along with ice could help.  Best of luck..

Congrats, finished mine a few weeks ago.  Its a great feeling to be done with that part and to hopefully move forward with a fresh start.  Best wishes.