What does Opdivo (Nivo) treatment “look like” for the patient? What’s the “routine” for those who know?

Glad to hear you'll be getting Nivo adjuvant treatment. As far as infusion day, there is no change in activity, what you eat, or anything. You might get tired from just chilling in a comfy chair for an hour or so but the drug itself has little impact on you during or after infusion. Each infusion center is different, where I went there were two versions of infusion centers. The floor I mainly went to had multiple rooms with about 4 chairs each. No TVs there but they had tablets if you wanted to borrow one. I always brought a laptop or at least had my phone and my Kindle. The other floor I went to a few times had private rooms and TVs. I prefer the room with other people in it, got to meet a lot of interesting people and made some great friends. 

Wishing you a very happy new year!

Hi JimChief, just to add to what Jenn has already given you. First, it usually takes a while for them to make the drug up since they don't make it a head of time. It can range depending on how busy they are, so factor in at least an hour before you will start and an hour of run time with a 5 min flush at the end to make sure you get all the good stuff out. I have been driving my self now for almost 4 years to treatment and I usually head straight home about a 40 min drive. My energy level for the next couple of days is usally pretty low, kind of like a college hang over day. Then over the next week or so I start to feel more energy up until the next treatment. I am really hoping that the FDA gives approval to a 4 week schedule that has been asked for by BMS, it will mean less Oncologist visits and less appointments. Being part of a trial I have had blood draws on Tuesdays followed by Oncologist visit and exam then treatments on Friday. I am not sure if your situation will be different where they do everything on the same day. If you go without a pick or port then make sure to be hydrated so that they can find a vein easily, that is the only part that I have not enjoyed over the last 4 years. I am a bit of a suck up and ask for my favorite nurse to get my IV in. You meet some really nice people with all kinds of different situation while getting treatments. I usually bring snacks and my Ipad plus other things to read if there is no interesting people to talk to. Fatigue for me has been the biggest issue and getting winded easily, there has been some sore joints from time to time but nothing that has ever stopped me from getting treatment. All in all I would have to say it has been pretty easy to take especially when the scans keep coming back stable with no new mets or progression. Wishing you the best in your journey!!!Ed

I just finished my 5th treatment with Nivo yesterday.  I only have mild soreness and fatigue for a couple of days but this is not the case for everyone.  It is a hassle to give up 24 full days (I live 3 hours from Houston) for blood tests, doctor visits, and infusions but worth it to me because i am likely to progress at stage 3C.  Just make sure you are commited to finishing treatment before starting.  You do not want to quit treatment and progress and lose that wrench in the toolbox.  My doc stated he would manage any side effects basically like i was stage 4 and would not stop treatment unless we had to.  He expected me to put up with any side effects like i had stage 4 also.

I know you've looked at my blog…but in case you didn't get to this part…or for others…. 

Back in the olden days of 2010 when I joined my nivo trial…they drew TONS of blood work before EVERY infusion.  We had to be in bed….and we had to be monitored for 1 hour and then later for 30 minutes after the infusion to see if we grew three heads or something!!!  So the routine for me was:  Drive to Atlanta from Chattanooga (2 hour drive) to catch a flight to Tampa on Thursday evening…rent car, spent the night in a good ol La Quinta, arrive at the "butt crack of dawn" (0700) at Moffit Cancer Center on Friday for:  Lab draw and urine donation with vital signs, office visit with the Wizard Weber, hike over to the CRU (clinical research unit) where there were areas with beds in tiny rooms as well as an area with recliners, wait for meds to come up from pharmacy, get infusion, be observed, drive like a maniac to the Tampa airport, catch flight to Atlanta, drive the 2 hours back to Chattanooga, get home around midnight.  Every 2 weeks for 6 months, then every 3 months for 2 years.  Every 3 months I had a brain MRI with CT's of neck, chest, abd and pelvis the week before my visit and shipped the CD's to Moffitt so they would be available for review before my infusion.  (If you progressed…you were out!!!)  I was incredibly thrilled when I "graduated" to having my infusions in a chair and super thrilled when they gradually decreased the "observation time" post infusion.

I never had a line placed and did fine with all the lab draws and IV starts for the duration.  Some folks do get a port placed for those purposes.  There were no pre infusion meds…though toward the end I did have to take a benadryl before as I was developing urticaria during the infusion and that helped.  Others have had to do the same, but I don't think it is very common.

I worked 12 hour shifts (Mon, Tue and Wed) through my entire trial and missed only three days of work.  I don't know if I am just really lucky or incredibly stubborn.  Probably both.  Also, given the arm of my trial, I was getting Nivo at only 1mg/kg…so that may have helped keep my side effects to a minimum.  

For those of you who are interested (or really, really bored) here is a link to the side effects I developed via a time line that reviewing my own blog posts at the time provided:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html  

As the incredible peeps on this forum prove daily:  The human spirit is amazing and folks can manage the unimaginable when they must.  You got this.  Keep us posted.  I wish you well.  C

I agree with the above posts, at Kaiser it was a long room with recliners.  There were several private rooms for more severe treatments, most in there were having chemo and not immunotherapy. You could tell by the no hair and ports.  I often wanted to stand up and ask out loud, how many here are also having immunotherapy?  I start my first Opdivo maintenance next Friday 1mg to see how my body handles it.  Been having blood work either once or twice weekly to get off of Prednisone due to high liver panel. Had 3 treatments of Opdivo/Yervoy and canceled 4th due to toxicity to liver last August. 3rd scan Dec 6th showed previous tumors still shrank, two new small nolules. If bloodwork is good today then thiis is my last prednisone pill hooray!   Reading this forum gives me hope. Thank you all. Sharon

Hello Jimchief,

I am new here but wanted to reply since I just had my 7th Opdivo treatment yesterday. I have my treatments every other Friday and the plan is to receive treatment for one year in order to prevent recurrence. I was staged at 3C in August of this year. Three recurring tumors removed from my ankle in July. Began treatment with Opdivo in September following 5 heavy doses of radiation to the area. My experience has been relatively easy. I am put in a room with hospital bed and a chair. I usually have one person with me and they are able to go back with me for treatment. Once the drug is delivered to the transfusion unit, it takes 30 minutes to drip and then there is a 5 minute saline flush making sure you get your money's worth! Then we get back on the road for the 4 hour drive from Houston. The one thing I do experience is a slight dizziness during the infusion and also right after.  Nothing terrible but I just notice it.  I have felt fatigue in the few days after treatments but my thyroid has also been affected. I had hypothyroidism for years prior to treatment so I fully expected the thyroid to be my issue, if I had any. I have maintained workouts with my trainer, only cancelling one week's worth of them when my thyroid levels first went haywire. We are still working on getting my levels back to normal. I recently made a visit to the ER and was diagnosed with pleurisy. I am not sure if this would be considered a form of pneumonitis that is so talked about as a side effect. Also, I am nauseous every single day.  It's like morning sickness. I am a person who only gets out of the bed in the morning to get my cup of coffee…I must have it but since I've been taking Opdivo, coffee makes me sick to my stomach. I will have a sprite or coke zero instead. Later in the morning I will have a cup of coffee if I want. Also, it helps to get something in my stomach. Toast or crackers. Some foods I used to eat just don't sound good to me now. I don't even drink wine in the evenings anymore. It doesn't sound good either except for maybe every once in a while. You would think I would have lost a few pounds but no such luck. Maybe that is due to the thyroid issue.  

Honestly for the first 3 – 4 treatments, I felt better than I have felt in a long time. Then the thyroid levels got off track and I can't say that anymore. I have experienced the muscle and joint aches and also some weakness. These side effects come and go kind of randomly. It does help to work out even if I am not up to my full potential that day. I just do what I can do and I feel better when it is done. In the last few weeks I have not slept well at all which could be due to thyroid levels being off.  

So, I hope my account helps somewhat. Good luck with your treatment and I look forward to hearing about it over the weeks to come! 

I go to Dana Farber for nivo infusions.  They have everyone on the 6th floor for infusion so it's one huge floor which is subdivided into some smaller private rooms with beds and some alcoves with recliners.  The sicker folks usually get the beds and those of us who are feeling pretty well get the recliners.  They make it as private as they can for each of us.  Sound carries so I bring headphones.  Everyone has a TV and they have tablets on loan if you want one.  They also have free wifi.  I usually bring a book and my laptop and do a combo of work, reading and napping during the waiting and infusion.  I'm usually tired from all the sitting around as I have bloodwork then dr appointment and then it's an hour while they thaw the drug and an hour infusion followed by a flush.  It's a long day but really not that bad.  No dietary restrictions or issues other than trying to ensure I'm hydrated to make the IV placement a little easier.  The infusion nurses are all amazing.  They are very kind and caring.  Good wishes to you.  Hopefully your experience will be a good one.

Jennifer

I go to Dana Farber for nivo infusions.  They have everyone on the 6th floor for infusion so it's one huge floor which is subdivided into some smaller private rooms with beds and some alcoves with recliners.  The sicker folks usually get the beds and those of us who are feeling pretty well get the recliners.  They make it as private as they can for each of us.  Sound carries so I bring headphones.  Everyone has a TV and they have tablets on loan if you want one.  They also have free wifi.  I usually bring a book and my laptop and do a combo of work, reading and napping during the waiting and infusion.  I'm usually tired from all the sitting around as I have bloodwork then dr appointment and then it's an hour while they thaw the drug and an hour infusion followed by a flush.  It's a long day but really not that bad.  No dietary restrictions or issues other than trying to ensure I'm hydrated to make the IV placement a little easier.  The infusion nurses are all amazing.  They are very kind and caring.  Good wishes to you.  Hopefully your experience will be a good one.

Jennifer