Anyone else with kidney cancer and Addison's disease?

Hi,

i have adrenal insufficiency as well, as a result of having immunotherapy.

I was diagnosed with it in December. I am feeling very sorry for myself at the moment.

How are you finding things?

Hi Jackie!

I was diagnosed with the AI in December too...uncanny! The doctor suspected that it has been caused by the immunotherapy inflaming the pituitary gland, so I had an MRI scan of my pituitary last week. It was clear! So probably not the pituitary misbehaving, but the adrenal glands themselves not working at all. Both had tumours on them when my cancer was diagnosed. I am on hydrocortisone, but unfortunately my body has had a rare reaction to it. I became psychotic, which was a horrible and very frightening experience, which I hope never happens again! I never expected this as part of my cancer story. Who would?? It means I am on a lower dose than most people with Addison's.

I have been coping very well with my cancer treatment, which started in August. This AI diagnosis has thrown me, and I no longer feel confident in coping with everything. I have really lost my 'get up and go'!

What worries me most is that my oncologist might decide to stop my treatment if he thinks that it has caused the AI. I think my adrenal glands were compromised by the cancer before it was discovered, and the immunotherapy isn't to blame. How do they decide this?

I am dealing with all this by having one goal each day, so that I can feel a sense of moving forward (slowly) again.

I'm not sure if it's the steroids causing this, or the AI itself, but my major problem is constant arm, leg and shoulder pains. They prevent me doing a lot of normal everyday stuff like driving, walking my dog, carrying bags etc. Very frustrating as I'm usually active. It also puts more pressure on my husband, though he doesn't complain (much!)

Sorry for whinging on! I'm not usually sorry for myself, and feel guilty for coming across to others as a complainer.

Message me one to one if you think these conversations won't be of interest to others in the group!

How do i message one to one?

Maybe i just did message you one to one!

I really know what you mean, i feel terrible mentally at the moment. I feel i have given up hope. I think its about getting used to the idea if adrenal problem on top of cancer plus dizzy all the time from rare side effect of ear inflammation.

I am near my hospital, so that is something.

Hi candysmum I too was diagnosed with adrenal insufficiency 12 months ago after being on Nivolumab for 7 months, I’ve learnt to live with it as I’m getting really good results from my treatment & taking hydrocortisone hasn’t been too bad for me, it’s just a pain of having to carry an emergency injection kit with me were ever I go, but I’ll gladly take that if it keeps my cancer at bay, any other questions please feel free to ask me