The colitis I had was long-term diarrhea that would not go away with the normal course of steroids. Because it could not be controlled, I could not get the 4th dose of ipi. I had to take very high levels of steroids and 2 infusions of Infliximab plus a colonoscopy to be certain the colon was OK. Eventually it went away.
I have 2 measurable tumors on lymph nodes. One appears to be dead (necrosis). The other probably grew, but there is some slight chance that it was inflamed from being under attack when the last CT scan was done. So it seems that the ipi did something despite the very high level steroids over a long period of time, and the fact that I did not get the 4th dose.
If you go on the ipi trial, you need to be in touch with your trial nurse and/or doctor. I was given the guidelines of contacting them if I had diarrhea more than 3 times a day, or felt exhausted for several days (this could be a sign of gland distress). I think I also had to contact them if my temperature reached a certain high level. I don't have my notes in front of me. It's important to be completely honest about what is happening to you so that they can respond quickly.
If you go to the Melanoma International Foundation discussion board, you will find a number of discussions on ipi. Your oncologist should be able to supply you with the statistics. Rash and diarrhea are the most common side effects, and these can usually be controlled with over-the -counter drugs or the regular dose of steroids. It is unusual to have the kind of reaction I had on the 3mg dose. Responders can have a durable response or stable disease without autoimmune disease. On the 3 mg dose, I think durable response or stable disease is just under 30%. Durable response is just under 10%. People with stable disease can petition to get another round of ipi if there is new growth. Ask your oncologist what % of the 3 mg people get a severe autoimmune response. I think it is a very low percent.
Good luck!
