I started treatment last December for mRCC. I was prescribed with 40mg daily Cabozantinib and 4 weekly infusions of Nivolumab. I had these treatments on and off due to high blood pressure and other effects but the fatigue, lethargy, lack of appetite and feeling like I just wanted to lie down and never get up again got so bad I had a synacthen test which showed very low cortisol levels and also under active thyroid. Adverse effects! So now on hydrocortisone and Levothyroxine for life. I’ve to see the oncologist in September and depending on bloods etc I will once again go back on the treatments. I’m told that I could yet have other adverse effects. Such fun!
But I’m not sure going forward how all this will work out. The oncologist will be concentrating on the cancer treatments and after an initial appointment with an endocrinology nurse specialist my GP will be monitoring the other conditions. Oh and I forgot I also have a clot on my lung for which I have to take medication for 6 months. I’m worried about the overall picture and who will decide what is more important and that nothing gets missed.
