nivo/ipi general side effects

Hi, I’m also getting ready to start the combo due to lung mets . I also have been on nivo for a long time, so curious how this will go. About 2 years ago I tolerated the combo – all 4 treatments, just losing my thyroid. I don’t qualify for a targeted treatment/trial because I’m NRAS and my mets are not measurable. They are pleural thickenings so can’t cut it out, radiate or target . Always surgery before so this is a new mindset. Upon some recommendations from others here, I did start probiotics prior to starting the combo. I had no GI issues whatsoever…dont know if coincidence or not. Recently an MD Anderson study reported that patients who took probiotics were less likely to respond to treatment and that fiber in the diet is a better option. I decreased my probiotics based on my onc telling me to, and then progression. So WHO KNOWS?? I was scared silly about the combo after hearing all the nightmare stories but onc kept close watch on labs and I made it through with lots of fatigue and loss if thyroid but that’s it. Good luck to you.

I’ve had two full rounds of the IPI/Nivo combo, so eight total, after a full year and couple of months of just Nivo. With Nivo, it was fatigue, which was constant, and a brief rash that lasted a week maybe. I also had to start thyroid medicine. With the first round of IPI/Nivo it was greater fatigue, but nothing else. With the second round fourth dose I got the jackpot. Abdominal pain, rash across my torso and arms, liver inflammation, colitis. I’m currently on Prednisone to deal with the inflammation and colitis, and it’s really not been that bad. I got a cream from my Dermatologist for the rash. It’s worth it for the shrunken lesions on my CT.

Hello LordKelvyn, nice to meet you under our mutual and shared disease!! Your current situation “was” like mine for the last year or less, but i started Opdivo “with” the Yervoy (made it through all 4 Yervoys thank god) but around Opdivo #14 (somewhere around that time frame) new tumors where popping up but kept going with my infusions ONLY because it was halting my lung tumors from growing, well, except the HUGE 8CM Mel Monster they took out last Dec 2018, he was in my right lower lobe (had Lobectomy) he defied all we threw at him, Pembro included!…The Yervoy tends to be a lil bit harsher of the Immunal therapies, but not for everyone! As with ALL Oncological drugs, they disturb our Gland System, its not the drug “itself” that causes side effects, but its how the drug interacts with our bodys organs, glands and our hiways and bi-ways of our blood and lymphatic systems.. My Kaiser team stopped ALL my infusions and surgerys July 10th (2019) due to severe disease progression, i stopped at infusion #20 of Opdivo. To give you my little story of Yervoy, 6 days after my very first combo infusion, i began to vomit, appetite slowly became poor, head was pounding when i got up and down, body ached it was VERY Flu like it got worse as day 6 went on to day 7, 8, 9, 10, to day 14 or so, when i finally threw in the towel & went to the ER and they told me i was fine! (I went in After my oncoligist went home for the day) A little under weight they said! I lost 20lbs in that 8 or 10 days!! (Kaiser ER mind you) do you know who & what saved me? My freakin Wife! Shes a caregiver and the guy she took care of had some stuff called Megace (Megestrol) an appetite stimulant, he said no problem and Hillary brought some home, after 4 or 5 tablespoons of it about 48hrs or less, i was eating again and i wasnt throwing up anymore, i was able to take pain meds, my Livothyroxines i couldnt keep anything down! A viscous cycle! Now, this is important Kelvyn, in hine sight, what occured during that episode of pure Hell was that my Pituitary Gland shut down! Pure hell, we need the Cortisol that it produces (along with our Adrenal gland, they communicate!) otherwise we shut down & well, we become sick, i was introduced to an Endocrinologist and i now take 20mg a day of Hydrocortisone pills and im golden!….so anyways, theres a story from someone who did have a minor set back with the Yervoy, doesnt mean it will happen to you, just saying, you asked…youll be fine, JUST DO IT! its a great med!! Great tumor responses!!

Most people on combo see side effects by week 3 following start of treatment. Although these can be mild initially, they can also quickly progress so you need to be vigilant and cautious to inform your oncologist immediately of any changes regardless of how small and unimportant they may seem to you. The key point to remember is that you do not need all four combo infusions to see the positive results. For neuropathy try using vit B6. It is the only thing that Drs seem to recommend to protect the nerves.
Remain optimistic and believe the therapy will work. Attitude is half the battle.
Best regards and success,
Melanie