2 days after first ipi/divo and no side effects…Normal? treatment working?

Hi NewEra, I gave you this link before but I will give it to you again and if you go to the 38:30 min mark as well as the part 34:34 min mark it gets into patterns of side effects and association between response and side effect also referred to as Immune related adverse events (IRAE’s). http://www.researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=34m46s

It was during the second week after my first combo that side effects started to show. The first was the rash which appeared on my arms and upper chest. I was excited to see it. I ended up with about 8 different side effects over the next 4 months. After the combos no new side effects but the ones I got I still deal with most at the 3 year mark. I would give it a week or 2.

Hi NewEra! Lucky you! And i pray you dont have any major side, front, behind or middle effects!, and not to scare you but, after my first infuse of ipi & nivo id say by day 6 it all went to crap, its like Rodeo for some haha! On day 6 my body refused to make Cortisol on its own, appetite GONE! Severe vomiting, pounding headaches etc. By the time i did something about it after about a week of trying to pull through on my own i tapped out, met with my Endocrinologist and Hydrocortisone was prescribed, 100% turn around! Minor delay on next infusion but within a couple weeks continued with ipi/nivo #2, 3, and the final 4th infuse without any real side effects! Its not really what the drug will do to you directly, its the shut down of important “Glands” that can get ya! (The Pros & Cons of immunal therapy!) And, to add, DO NOT think cuz yer not having side effects that its not working, thats pish posh! Studies have shown good response to immunal drugs without onset of side efrects….Good Luck!!!!

Initially, well tolerated and never had nausea however by week three side effects appeared. Extreme fatigue and joint pain mostly. After the second infusion, felt like my organs were on fire, especially glands. I got a rash all over my torso. Went to get the third infusion and could not because my liver enzymes were too high due to a drug induced liver injury (DILI). Four months of high dose steroids and cellcept (organ rejection drug). By the way, my side effects from steroids were far worse than anything I had experienced while on immunotherapy. Now, on biweekly infusions of Opdivo only. Just had infusion #5. So far just achy joints, some fatigue but nothing like combo infusions and vitiligo on my neck, shoulders and torso as well as arms. You may be fortunate and have milder side effects.
By the way, after two infusions tumors shrank by 50 %. Even while on steroids there was a 30 % additional shrinkage however on my third CT scan just prior to restarting now with Opdivo only, the tumors remained the same for 2.5 months. Scheduled for CT scan early Aug so will see what happens next.
Best of luck with your treatment.
Melanie

I had one full cycle (four infusions) of IPI/Nivo and didn’t have any side effects other than fatigue until two days after the third infusion. It was a very minor rash with a few hives.

I’ve started a second cycle of IPI/Nivo and have had two infusions so far and have had a total of 1 hive so far, and the ever present fatigue of course. There’s some evidence of side effects being a good sign, but even though I’ve had few, it’s killed a tumor near my kidney and probably one in my liver also. Good Luck!