hello, I’m new to the group. I have recently be diagnosed with stage 4 melanoma in my small intestine and lung and am due to start immunotherapy in 10 days. Just wondering how people have found immunotherapy, side effects etc x
I have been diagnosed stage 4 melanoma. I had my first immunitherapy last Tuesday. Nivo and Ipi. I was expecting some sort of reaction but nothing all was fine. I think you just get anxious leading up to it. Hope all goes well for you.
I'm also Stage 4, but completed my two-year immunotherapy course back in late 2024, resulting in N. E. D. (i.e. remission).
Immunotherapy is (literally) a life saver!
Lung and liver mets have been seen off, so I'm now on six-monthly CT scans and annual derrmatology reviews.
The short-term side effects during treatment were easily tolerated, however one long-term effect is that I now have secondary adrenal insufficiency, which is treated with daily low-dose hydrocortisone. Serious, but not something that affects me on a daily basis.
I know I've been lucky, but I'm not the only one - this treatment is becoming more effective each year.
I'm really glad to hear about your good experience with immunotherapy.
What dosing schedule of Hydrocortisone are you on for the secondary adrenal insuffiency? I have that too but it affects me every day. It was caused by immunotherapy (more or less) but I'm so glad I had the 2 years of the immunotherapy. It's great.
My dosing schedule is 7:30am-10mg, 12:30-5mg, 5:30pm-5mg. [20mg HC in total]
I get spells 2-3 times a day of being very fatigued, headachey, and muscle weakness (I can only walk super slowly!). I only finished the immuno 6 weeks ago. I find it hard (impossible) to tell if the immuno is causing the fatigure or the adrenal insufficiency, so I find it hard to adjust my dose. Maybe it will get easier now as my body settles down in the next few weeks after stopping immuno? It'd help me to know what your dosing is like, even though I know every body is different.
