Hello everyone. I'm a new member of the community, and hoping I'll find others with similar diagnoses.
I was diagnosed in June 22 with metastatic kidney cancer, which was affecting many sites, including my pancreas and both adrenal glands. In December, shortly before Christmas I became unwell, and was taken to hospital, where tests showed that my adrenal glands aren't working. Technically, this is not Addison's disease, but adrenal insufficiency. It is a permanent condition, and I now have to take steroids for life. Plenty of info is available online if you are interested!
The problem with my adrenals may have been caused by the tumours, though my immunotherapy has shrunk these. I am now on a maintenance dose of Novilumab once a month, and I am managing very well, with no apparent side effects. It is complicated though, keeping track of two separate lots of appointments, scans etc and I'm not convinced that my oncologist team and the endocrine team are doing any 'joined up' thinking. What advice/experience do you have? How can I manage both conditions going forward?
Hi Puddock and a very warm welcome to the online community which I hope you'll find is an informative and supportive place to be.
I'm sorry to read all that you're having to cope with and it's natural to want to see if anyone else is in a similar situation.
The online community is divided up into different support groups and I can see that you've already found and joined the kidney cancer group which would be a great place to post your questions as you'll then connect directly with others who have this type of cancer. When you're ready to post there, clicking on the link I've created will take you straight there where you can start a new post in the same way as you did here.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
