I've been stage 4 for a year or two and started an ipi compassionate-use trial in June that finished in Aug. I'm happy to report that my body responded to the ipi - Yay! and my last PET scan showed tumor shrinkage in both my lungs and leg. I get scanned every 6 months and the trial will be repeated as necessary if the tumors begin to grow again.
If you've had the ipi trial before, I was wondering how you feel physically and mentally? I felt tired, cranky, and somewhat confused for at least two months after my last influsion. Then I started to feel great (like my old self), but that only lasted a few weeks and now I seem to be regressing again...super tired and crummy feeling . I've had my blood work done and my gland levels are all normal (like thyroid). Do you think it takes a long time to get past ipi side-effects? Or is this simply how cancer progression feels? Will I ever feel like this again?
Hope to hear your thoughts.