What side effects can we expect from Nivo?

[strawberryjam]

Hi all

My son will start Nivo soon. What side effects did people experience and did side effects get worse over time ? So thankful that these immunotherapies exist but it is a bit scary going into it. Thanks for your help.

[kellyOd]

From what I hear, Opdivo alone is pretty tolerable for most. Some stay on it for months to years! Ryan had the ipilimumab and nivolumab at the same time so it was hard to figure out which medicine was causing what side effect. He had fevers, and a rash that would pop up here and there. He had to stop the combo due to medicine induced hepatitis though. He is on steroids now, and will restart with just the nivolumab as soon as possible.

You can look up Opdivo on google and see the most common side effects, compared to least common and more serious.

[Hidden in reply to kellyOd]

Thanks Kelly . I know the combo gives you

much harsher side effects. But if you need it, you just do It! So thankful

that these drugs exist now . I am hoping for the best , that he feels ok , can work and continue enjoying life . Just finished Mek/ Ted and that was tolerable .

[kellyOd in reply to Hidden]

Good! The taf mek combo is what knocked Ryan’s cancer out after it spread like wildfire. He had 2 NED scans. Then made the switch to the combo. Ironic cause I’m currently in the waiting room of an advanced radiology while he gets his PET scan and brain MRI! I’m so glad it was tolerable. Ryan didn’t have any side effects either! None!

[Hidden in reply to kellyOd]

We did the PET and Brain MRI together last week. Hoping you get the best results!

[kellyOd in reply to Hidden]

You as well 😊

[hopeful_spirit]

Definitely scary going into it. I’ve been on Opdivo for 10 months and the only side effects I’ve had are tired and a little itchy! Not too bad

[HC47]

Hi! I've been on Nivo since November and have had pretty minimal side effects. I did also did the combo and ended up in the Hospital for 9 days, but after that, switched to Nivo only and have been pretty manageable. I get what I call the 'surprise barfs' because I have intermittent nausea. Around Christmas I had really bad arthritic pain in my back, feet and knees, but with a low dose steroid, that went away and I stopped taking a steroid after about 8 weeks. I also have random white spots all over my skin (where i'm losing pigmentation) -- seems to be the newest side effect. And what others have said too! Tired a lot. But overall - WAY more manageable than normal Chemo. I still work all the time and exercise routinely.

[Hidden]

thank you for sharing your experience. It helps .

[hopeful_spirit in reply to Hidden]

It’s definitely scary being young and basically signing your life away despite the side effects that are rare but still possible. Lots of anxiety my first few treatments not knowing what this drug was going to do to my body. The first 20 minutes of your first treatment is crucial because they look for allergic reactions. Thankfully I’ve had none of that. I’ll be done June 21st!! Can’t wait to have my life back. Goodluck to you and your son on this journey! Hope it brings you only good news and he can be just as joyful when treatments come to an end!

[Hidden]

Thank you .Yes we are hoping for the best results . So happy that you will

be free in just one month . Yes, Joy and gratitude !

Here is a simple question : I think that I should drive him to each infusion. He thinks it’s not needed . Neither of us really knows what to expect! What did you do?

[hopeful_spirit in reply to Hidden]

He will definitely need someone to drive him home. For me every treatment right after I feel like I’m extremely hungover and just want to sleep. It’s a really good idea to have someone there because besides the treatment it’s a long day!

[Hidden in reply to hopeful_spirit]

Thank you . I’ll be glad to drive him !