How are you finding managing it with the treatment? My body seems to be clashing with the immunotherapy and I have had to go into hospital twice since March fo have a steroid reset. I am now on a slow taper of Pred before I can restart the Niv. My platelets are also really low which the docs are still trying to work out the route cause.
I fear I've been luckier than you in terms of the side effects.
I was diagnosed with Addisons soon after completing my Ipi/Nivo treatment and following further tests it was confirmed my adrenal glands had packed up.
I'm now on lifelong hydrocortisone tablets, and I've been taking these in conjunction with my ongoing Nivolumab treatment.
In fairness I've had very few side effects and count myself extremely lucky(ish!).
I hope your docs can sort out the balance soon, so that you can get the Nivo on board again. These drugs are wonderful and certainly give us all hope for the future.
Ah yes sounds like you have had an easier ride. Long May it continue. Unf I lost thyroid and adrenal gland on the Niv but managed to stabilise. Unf the Niv and Ipi seems to have upset the balance. Good news is that it’s worked on the rumours and I am now in remissions. Hopefully will soon stabilise on the bloods and have some normality again. Good luck, fingers crossed for you .
