How to prepare for first Nivo infusion

You're going to get a lot of answers and differing opinions.  Additionally, people respond widely to Nivo/Pembro (or the combo) or any immunotherapy drug.  Additionally, side-effects vary a lot.  I developed some mild dry skin/rash issues after months of Pembro.  Others have discussed immediate enlargement of tumors, colitis, and the other hallmark side effects.  Point is it really just depends.

One thing I've heard is to treat it like you are getting a cold/avoiding one.  Lots of fluids, balanced diet, lots of nutrients.  Just generally being healthy and giving your body and its immune system all the support it needs.  My wife responded to my treatment having both of us do as much (she got a nice side benefit).  There's lots of perhaps more wild options, but I think this is one that you won't find much disagreement on.  

You're going to get a lot of answers and differing opinions.  Additionally, people respond widely to Nivo/Pembro (or the combo) or any immunotherapy drug.  Additionally, side-effects vary a lot.  I developed some mild dry skin/rash issues after months of Pembro.  Others have discussed immediate enlargement of tumors, colitis, and the other hallmark side effects.  Point is it really just depends.

One thing I've heard is to treat it like you are getting a cold/avoiding one.  Lots of fluids, balanced diet, lots of nutrients.  Just generally being healthy and giving your body and its immune system all the support it needs.  My wife responded to my treatment having both of us do as much (she got a nice side benefit).  There's lots of perhaps more wild options, but I think this is one that you won't find much disagreement on.  

You're going to get a lot of answers and differing opinions.  Additionally, people respond widely to Nivo/Pembro (or the combo) or any immunotherapy drug.  Additionally, side-effects vary a lot.  I developed some mild dry skin/rash issues after months of Pembro.  Others have discussed immediate enlargement of tumors, colitis, and the other hallmark side effects.  Point is it really just depends.

One thing I've heard is to treat it like you are getting a cold/avoiding one.  Lots of fluids, balanced diet, lots of nutrients.  Just generally being healthy and giving your body and its immune system all the support it needs.  My wife responded to my treatment having both of us do as much (she got a nice side benefit).  There's lots of perhaps more wild options, but I think this is one that you won't find much disagreement on.  

I am on Opdivo.  I am very healthy unlike your brother (stage IIIB on a trial).  The best advice for the first day is eat a good breakfast like oat meal with fruit.  Do not drink coffee on that day at all as it can dehydrate you.  Drink lots of water before, during and after.  The IV is very small and does not add a lot of water to your system like Yervoy.  I bloat up from my Yervoy from all the water. 

Good luck to you and your brother.

Tom

I am on Opdivo.  I am very healthy unlike your brother (stage IIIB on a trial).  The best advice for the first day is eat a good breakfast like oat meal with fruit.  Do not drink coffee on that day at all as it can dehydrate you.  Drink lots of water before, during and after.  The IV is very small and does not add a lot of water to your system like Yervoy.  I bloat up from my Yervoy from all the water. 

Good luck to you and your brother.

Tom

I am on Opdivo.  I am very healthy unlike your brother (stage IIIB on a trial).  The best advice for the first day is eat a good breakfast like oat meal with fruit.  Do not drink coffee on that day at all as it can dehydrate you.  Drink lots of water before, during and after.  The IV is very small and does not add a lot of water to your system like Yervoy.  I bloat up from my Yervoy from all the water. 

Good luck to you and your brother.

Tom

Hi Maggie!  Me again.  🙂

I had probably changed my diet to all healthy about a week before treatment began.  I don't remember what I ate or drank that morning of my first treatment, but I most likely had one of my spinach shakes.  But what I did want to mention is that my treatment, Pembro/Keytruda, is frozen.  They thaw it out once my doctor signs-off that I am healthy and can have the treatment.  So when they hooked me up for my first treatment, and they started the infusion, I could feel it going up my arm.  I was so nervous…was something wrong because it felt so cold and weird?!?!  Then my mother reminded me that they had said it was frozen and thawed, so maybe it was just cold in my veins.  She was right and I instantly relaxed.  

I just thought that little tidbit would be helpful for others.  Best of luck to you and your brother!!!!  Laurie

Hi Maggie!  Me again.  🙂

I had probably changed my diet to all healthy about a week before treatment began.  I don't remember what I ate or drank that morning of my first treatment, but I most likely had one of my spinach shakes.  But what I did want to mention is that my treatment, Pembro/Keytruda, is frozen.  They thaw it out once my doctor signs-off that I am healthy and can have the treatment.  So when they hooked me up for my first treatment, and they started the infusion, I could feel it going up my arm.  I was so nervous…was something wrong because it felt so cold and weird?!?!  Then my mother reminded me that they had said it was frozen and thawed, so maybe it was just cold in my veins.  She was right and I instantly relaxed.  

I just thought that little tidbit would be helpful for others.  Best of luck to you and your brother!!!!  Laurie

Hi Maggie!  Me again.  🙂

I had probably changed my diet to all healthy about a week before treatment began.  I don't remember what I ate or drank that morning of my first treatment, but I most likely had one of my spinach shakes.  But what I did want to mention is that my treatment, Pembro/Keytruda, is frozen.  They thaw it out once my doctor signs-off that I am healthy and can have the treatment.  So when they hooked me up for my first treatment, and they started the infusion, I could feel it going up my arm.  I was so nervous…was something wrong because it felt so cold and weird?!?!  Then my mother reminded me that they had said it was frozen and thawed, so maybe it was just cold in my veins.  She was right and I instantly relaxed.  

I just thought that little tidbit would be helpful for others.  Best of luck to you and your brother!!!!  Laurie

Hi Maggie, good work to your brother on his new treatment. I'll just mention that I did nothing special for the two years I've been on my trial of opdivo plus another drug. I drank coffee, I ate normally, I didn't try to hydrate anymore than usual.  I often ate immediately before the infusions, and sometimes even during the infusions.  The infusions really brought on the need to use the bathroom. But maybe that's all person specific. For my part I've been lucky not to have a high tumor burden. Hope it goes well for him. Again, good luck to him. – Kyle

Hi Maggie, good work to your brother on his new treatment. I'll just mention that I did nothing special for the two years I've been on my trial of opdivo plus another drug. I drank coffee, I ate normally, I didn't try to hydrate anymore than usual.  I often ate immediately before the infusions, and sometimes even during the infusions.  The infusions really brought on the need to use the bathroom. But maybe that's all person specific. For my part I've been lucky not to have a high tumor burden. Hope it goes well for him. Again, good luck to him. – Kyle

Hi Maggie, good work to your brother on his new treatment. I'll just mention that I did nothing special for the two years I've been on my trial of opdivo plus another drug. I drank coffee, I ate normally, I didn't try to hydrate anymore than usual.  I often ate immediately before the infusions, and sometimes even during the infusions.  The infusions really brought on the need to use the bathroom. But maybe that's all person specific. For my part I've been lucky not to have a high tumor burden. Hope it goes well for him. Again, good luck to him. – Kyle

Hi Maggie,

First, I'm so glad you're brother will be getting treatment so quickly – it took my husband nearly 3 months to receive systemic treatment…although this was mostly because he had a symptomatic brain met.  I'm glad your brother's brain mets are asymptomatic! 

My husband is on Keytruda, but I believe there are similar side effects with Opdivo.  He generally eats a light meal prior to treatment and takes an anti-nausea pill (Zofran) before we leave.  He gets nauseous fairly easily, and Keytruda seems to amplify this a bit for him – it's more of a precautionary measure than anything.  

My husband also drinks plenty of water the day prior and day of treatment.  He also eats very mild meals the day before as he occasionally has stomach problems after treatment.  

Other than that, there isn't much he does to prepare for his infusions.  He is pretty wiped out after treatment and rests right after and usually the next day.  He'll take Advil for his achy joints and muscles. 

Wishing you and your brother the best!  
 

Katie 

Hi Maggie,

First, I'm so glad you're brother will be getting treatment so quickly – it took my husband nearly 3 months to receive systemic treatment…although this was mostly because he had a symptomatic brain met.  I'm glad your brother's brain mets are asymptomatic! 

My husband is on Keytruda, but I believe there are similar side effects with Opdivo.  He generally eats a light meal prior to treatment and takes an anti-nausea pill (Zofran) before we leave.  He gets nauseous fairly easily, and Keytruda seems to amplify this a bit for him – it's more of a precautionary measure than anything.  

My husband also drinks plenty of water the day prior and day of treatment.  He also eats very mild meals the day before as he occasionally has stomach problems after treatment.  

Other than that, there isn't much he does to prepare for his infusions.  He is pretty wiped out after treatment and rests right after and usually the next day.  He'll take Advil for his achy joints and muscles. 

Wishing you and your brother the best!  
 

Katie 

Hi Maggie,

First, I'm so glad you're brother will be getting treatment so quickly – it took my husband nearly 3 months to receive systemic treatment…although this was mostly because he had a symptomatic brain met.  I'm glad your brother's brain mets are asymptomatic! 

My husband is on Keytruda, but I believe there are similar side effects with Opdivo.  He generally eats a light meal prior to treatment and takes an anti-nausea pill (Zofran) before we leave.  He gets nauseous fairly easily, and Keytruda seems to amplify this a bit for him – it's more of a precautionary measure than anything.  

My husband also drinks plenty of water the day prior and day of treatment.  He also eats very mild meals the day before as he occasionally has stomach problems after treatment.  

Other than that, there isn't much he does to prepare for his infusions.  He is pretty wiped out after treatment and rests right after and usually the next day.  He'll take Advil for his achy joints and muscles. 

Wishing you and your brother the best!  
 

Katie 

Have to agree with Kyle on this one!  There was no zen, meditative, hydration process!!!  (Not that I am against those things….love my water and my yoga!!!)  However, my nivo infusions were completed with an attitude of "Let's get this done and have fun if we can!" while sandwiched directly between mayhem and madness.  All of my infusions, over 2 1/2 years, began with a made dash to the aiport while driving 2 hours like a maniac to and through Atlanta (There IS no other way to drive in Atlanta!) in order to catch a flight to Tampa.  There were car wrecks (Not us…just those we observed and dodged!) and ice storms (Don't ask!), crazy car rental and insane TSA security!  Out of the airport in Atlanta…straight to car rental, an often unhealthy restaurant meal (Depsite being a runner and eating healthy all my life….when you eat out….What 'cha gonna do?) with wine and crashing at the LaQuita!  Up at the butt crack of dawn, there was coffee and the LaQuinta breakfast!  If I was with B…there was a "delicious" (hmmmmm!?) waffle…if with my sister…likely to be fruit loops and a boiled egg!  Then: a mad dash to lab, an office visit and infusion at Moffitt.  Then a rush of madness to reach car rental and the nightmare that is the TSA in Tampa, to board our flight back to Atlanta.  Then the 2 hour drive back home, usually by midnight!!!!  Not a routine I necessasarily recommend….but….oddly enough….we had a lot of fun…and I have been NED since 2010!  I wish your brother my best.  Celeste

Have to agree with Kyle on this one!  There was no zen, meditative, hydration process!!!  (Not that I am against those things….love my water and my yoga!!!)  However, my nivo infusions were completed with an attitude of "Let's get this done and have fun if we can!" while sandwiched directly between mayhem and madness.  All of my infusions, over 2 1/2 years, began with a made dash to the aiport while driving 2 hours like a maniac to and through Atlanta (There IS no other way to drive in Atlanta!) in order to catch a flight to Tampa.  There were car wrecks (Not us…just those we observed and dodged!) and ice storms (Don't ask!), crazy car rental and insane TSA security!  Out of the airport in Atlanta…straight to car rental, an often unhealthy restaurant meal (Depsite being a runner and eating healthy all my life….when you eat out….What 'cha gonna do?) with wine and crashing at the LaQuita!  Up at the butt crack of dawn, there was coffee and the LaQuinta breakfast!  If I was with B…there was a "delicious" (hmmmmm!?) waffle…if with my sister…likely to be fruit loops and a boiled egg!  Then: a mad dash to lab, an office visit and infusion at Moffitt.  Then a rush of madness to reach car rental and the nightmare that is the TSA in Tampa, to board our flight back to Atlanta.  Then the 2 hour drive back home, usually by midnight!!!!  Not a routine I necessasarily recommend….but….oddly enough….we had a lot of fun…and I have been NED since 2010!  I wish your brother my best.  Celeste

Have to agree with Kyle on this one!  There was no zen, meditative, hydration process!!!  (Not that I am against those things….love my water and my yoga!!!)  However, my nivo infusions were completed with an attitude of "Let's get this done and have fun if we can!" while sandwiched directly between mayhem and madness.  All of my infusions, over 2 1/2 years, began with a made dash to the aiport while driving 2 hours like a maniac to and through Atlanta (There IS no other way to drive in Atlanta!) in order to catch a flight to Tampa.  There were car wrecks (Not us…just those we observed and dodged!) and ice storms (Don't ask!), crazy car rental and insane TSA security!  Out of the airport in Atlanta…straight to car rental, an often unhealthy restaurant meal (Depsite being a runner and eating healthy all my life….when you eat out….What 'cha gonna do?) with wine and crashing at the LaQuita!  Up at the butt crack of dawn, there was coffee and the LaQuinta breakfast!  If I was with B…there was a "delicious" (hmmmmm!?) waffle…if with my sister…likely to be fruit loops and a boiled egg!  Then: a mad dash to lab, an office visit and infusion at Moffitt.  Then a rush of madness to reach car rental and the nightmare that is the TSA in Tampa, to board our flight back to Atlanta.  Then the 2 hour drive back home, usually by midnight!!!!  Not a routine I necessasarily recommend….but….oddly enough….we had a lot of fun…and I have been NED since 2010!  I wish your brother my best.  Celeste

I'm stage 4a about to have my third infusion of Keytruda on Monday. I didn't prepare in any way for my first infusion, in fact I continued with my normal routine of spin class in the morning and an hour's brisk walk in the afternoon. However 10 days after my first infusion I got hit with headaches, fatigue, tingling hands and feet plus prostitis. This lasted for 5 days during which time I rested. My oncologist told me that I was overdoing things and to take things easier. I now do one or two spin classes a week plus the walks and have had no side effects since. My subcutaneous mets initially got bigger but are now shrinking. Good luck with the treatment. Mel J.

I'm stage 4a about to have my third infusion of Keytruda on Monday. I didn't prepare in any way for my first infusion, in fact I continued with my normal routine of spin class in the morning and an hour's brisk walk in the afternoon. However 10 days after my first infusion I got hit with headaches, fatigue, tingling hands and feet plus prostitis. This lasted for 5 days during which time I rested. My oncologist told me that I was overdoing things and to take things easier. I now do one or two spin classes a week plus the walks and have had no side effects since. My subcutaneous mets initially got bigger but are now shrinking. Good luck with the treatment. Mel J.

I'm stage 4a about to have my third infusion of Keytruda on Monday. I didn't prepare in any way for my first infusion, in fact I continued with my normal routine of spin class in the morning and an hour's brisk walk in the afternoon. However 10 days after my first infusion I got hit with headaches, fatigue, tingling hands and feet plus prostitis. This lasted for 5 days during which time I rested. My oncologist told me that I was overdoing things and to take things easier. I now do one or two spin classes a week plus the walks and have had no side effects since. My subcutaneous mets initially got bigger but are now shrinking. Good luck with the treatment. Mel J.