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Tips for ipi/nivo infusions?

Tips for ipi/nivo infusions?

Posted By
Socks
3/13/2019 12:59pm
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Replies: 8

I'm going to be starting ipi/nivo soon, and I wanted to ask the experts about what I could expect. I've read a lot about what to expect after my infusions (side effects and such, especially fatigue), but are there tips and tricks for before/during? 

Like, for example, are there certain things I should/shouldn't eat or drink before an infusion? Is it better on an empty stomach or a full one or somewhere in between? I was planning on reading, maybe playing some tablet games while I'm getting infused; did you find other activities better for some reason? Do you feel better afterwards if you just nap through it?

Does exercising on the days you're not being infused help? (I mean, I know it'd help my overall health, but does it feel like it makes infusion days better/easier or help stave off/ease symptoms afterwards in some way?) Are there particular exercises or activities that you've found especially useful (yoga, mediation, cardio, weight lifting, whatever)? 

Does listening to music during infusions help? Obviously drinking water beforehand helps them find veins, but any other tips to make the process go smoother? I assume comfortable clothes are a must. Do you tend to get cold during infusions? Are you allowed to drink or eat anything while you're being infused? 

Is there anything you know now that you wish you'd known before you started ipi/nivo?

Thanks for any help you can give. ^_^

"Be who you are and be that well." - Saint Frances de Sales

I went through a year of ipi/nivo infusions.  Sometimes I would snack, sometimes I would read, sometimes I played games on my phone, and sometimes I napped.  It's really pretty relaxed.  I didn't do anything different as far as what I ate.  I wish I had kept up an exercise routine to help offset some of the fatigue from the medicine.  It's really wasn't as daunting as I expected it to be.

Socks - (3/13/2019 - 9:36pm)

[adds "definitely exercise" to list] Thank you!

"Be who you are and be that well." - Saint Frances de Sales

Hukill - (3/13/2019 - 2:05pm)

Did you get a port implanted? If not they will do an IV. The ipi is 1 1/2 hour infusion, then they made me wait 30 minutes before the nivo which was an hour infusion. I think before the ipi they gave me tylenol, couldn't say I needed it. For the first one they had a bag of drugs next to me in case I had an allergic reaction to the drugs and after the first time they made me hang around for 30 minutes or so to ensure I was ok. They had little tvs at our chairs but I always napped or watched the many shows going on around me(had mine at the VA). I had a 2 1/2 hour drive afterwards and while on the combo usually let my wife drive while I slept. The fatiuge is worse while on the combo but it was also one of my side effects that after 2 years I still have. I still worked full time, I had my treatments on Friday so I had a couple of days to recover. Once on just ipi things were better, I had a total of 57 doses. They will tell you to drink lots of water, they had warm blankets and if you were there during lunch they would provide a sack lunch so as long as your stomach is ok you can eat and drink during it unless they have rules. This was the VA so wherever you go it may be different. I was able to get up and role my IV stand to the restroom or take a short walk around the room.

Socks - (3/13/2019 - 9:41pm)

No port; there's usually no trouble finding a vein for me (unless you're that one idiot I had last time). I've had so many CTs and MRIs and blood draws by now that I know my left arm is where the good vein is. My oncologist says that he goes by the nurse's suggestions on whether or not to have a port put in; he figures they're the ones who have to try to find my veins. 

My husband and I are actually moving to Ann Arbor (I'm getting treatment at U of M) so that we won't have to make the 2.5 hour drive (one way) every time I have an infusion. My oncologist sees infusion patients on Wednesdays and Fridays, so maybe I'll shoot for Friday infusions, to have the weekend to recover, per your advice. Thank you!

"Be who you are and be that well." - Saint Frances de Sales

They always say it's different for everyone, so speaking just for myself, it was not a big deal.  They did said I had slightly difficult veins, just in that they (the nurses) usually started out saying: oh, we'll have no problem with you, and then three attempts later, they'd say that it's tougher than it looks.  I started to get good at telling them where was an easy place to try, and where was not.  I'd try to read, but I'd get so relaxed, I'd be fighting to keep my eyes open. They'd check my pulse after every infusion, and - even though I always have a low pulse - one time it was 32.  Normally, they'd pull the IV and I'd be out the door in 20 seconds, but time they wanted me to sit there for a second.

Socks - (3/13/2019 - 9:42pm)

I hope I have as easy a time of it as you seemed to have! I'm glad it went smoothly for you! :) 

"Be who you are and be that well." - Saint Frances de Sales

Edwin - (3/13/2019 - 5:12pm)

I read a book while receiving an infusion of Opdivo.   If I receive immunotherapy around noon, I accept a lunch.  At other times I usually decline offers of snacks.  

After I received my first Yervoy + Opdivo immunotherapy, I should have, but did not, weigh myself every day.  I lost too much weight. I should have stocked my refrigerator with high calorie food.  I had skim milk in my refrigerator; I needed to switch to whole milk.

Socks - (3/13/2019 - 9:43pm)

Heh, stocking my fridge & pantry with high-calorie food is definitely not a problem for me. >_> But I'll keep an eye on my weight; thanks for that!

"Be who you are and be that well." - Saint Frances de Sales