Please post what you feel like after Opdivo or Keytruda treatments

I am currently on Keytruda. Had my 3rd dose last week.  I was on Opdivo back in 2015 but was taken off  after 6mos because I stopped responding.  I tolerated both well with few side effects.  Both caused fatigue, itchiness, minor rash and soreness at site of tumor (upper right maxillary).  I know everyone is different, but in my experiences with both, I can't complain.  I just hope that I respond better with the Keytruda.  Good luck!

I've only had to infusion treatments so far (6-19 & 7-10-2017).  I felt somewhat tired on the day after, but being 69, I'm a little tired anyway.  I go to fitness center 4 times a week for 2 hours each and workout fairly hard on the treadmill and elipticals.  Can't say that I've seen any slow down since starting on Keytruda.  There is a short burning sensation in my jaw area at night, but it doesn't last very long…….so far.

I did keytruda for 10 months 2014/15. Lost my thyroid function so I'm on a small pill each day which is no problem. I had some tiredness. But after about 6 months I started to get very stiff and sore / had a short break on prednisone which helped a bit and had to stop at 10 months due to ankylospondylitis and arthritis type symptoms which were severe. 

Just had my 12th infusion of Keytruda on Tuesday.  Easy-peasy for me.  They always start with the saline flush which I find to be a bit icy.  The Keytruda itself goes in really easy.  I'm barely aware that they are infusing anything at all (unlike a potassium infusion – feels like acid in my veins).  I have no adverse side effects at all from Keytruda that I can tell.  Not sure if I'm a responder yet (tumors shrank and disappeared but I'm also on the Tafinlar/Mekenist combo which gives me fevers and chills which are managed well with low dose prednisone).  So far, Keytruda as an experience has been easier than saline.

Cheers!

Maggie

I have been on Keytruda since the 1st of January. I have had no side effects at all. I have my infusion early in the day and take it easy the rest of the day. I go to the work the next day feeling fine.

Hope it goes as well for you.

Nick

My husband has been on Keytruda for ~4.5 months. He has fatigue, itching, some joint pain, and brain fog. Nothing too severe. He's functioning well for the most part. 

Hi.  I had two infusions of Yervoy/Opdivo combo and then took a three month break.  I then restarted Opdivo only.  I've had 7 infusions and have tolerated them well.  I feel fatigued most of the time but not out of comission.  I am more fatigued the day after infusion and then go back to baseline.  I have some itchiness but it's not too bad.  Bloodwork did show high TSH and low T4 levels so I'm on thyroid medication however I never had any real side effect from it.

Good wishes to you and I wish you well making your decision.

Jennifer

Hello there.

I have been on Keytruda ( Pembrolizumab Epacadostat/Pecibo Trial ) since Nov 2016 and received 13 infusions so far.

As with most of the other contributors, fatigue, itchiness, slight rash, aching joints, shortness of breath seem to be the main issues. 

I must however add that these side effects are not debilitating, I still work long hours full time. The only thing I can't do is my normal exersise regime, but that would be considered extreme for a lot of people. That said a break has been good, I still can do 8 km walk run a few times a week and will look to stepping it up as I feel okay to do so.

The results have been very encouraging so far, all small toumours have disappeared, and the big guy has reduced by 60%, (In the Lung). In my case, I feel the minimal side effects are well worth the results. In fact I cant believe how lucky I am…..

I wish you all the best and hope that you get some positive results from whatever treatment you choose.

I was on Keytruda from early Nov 2014 to early July 2016. Infusions were a very easy and painless 30 minutes. I had a bit of fatigue two days post infusion, but not enough to keep me on the couch or away from work… just skipped my daily workouts those afternoons. I also had a change in #2 function… not diarrhea, but things certainly softened up and still remain that way. It is my new normal. My thyroid was kicked in the shorts and I'm on synthroid for life, but that has made no difference in my life. I was a complete responder, and NED for quite a while, but since the drug was still new to "wide release", docs had no definitive idea on when to stop infusions. Mild pancreatitis and some pretty wicked inflammatory arthritis decided that for us. I've been off Keytruda for just over a year, and scans still remain clear. Arthritis is under control with sulfasalazine, which gives me no side effects. We're hoping the arthritis will not be a permanent thing and I'll be able to come off of the sulfasalazine, but I've been a little uneasy about giving that a go yet.

Best of luck to you for complete response and a smooth side effect free treatment road!

HHN, 

Generally nivo (Opdivo) and pembro (Keytruda) have a similar side effect profile…though there is considerable difference between individuals.  If one is on the ipi/nivo combo (or on ipi/pembro in a trial) ipi is the bad boy of side effects.  Here is a post I put together about anti-PD-1 side effects generally:

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

I was in a nivo trial for 2 1/2 years from Dec 2010 to June of 2013.  Because of questions like yours I went back through all the blog posts I made during that time and created this post regarding side effects relative to time frame of treatment and side effects.  So….if you are seriously bored…here it is:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

I wish you my best.  Celeste

I received Keytruda for almost a year and a half. At the beginning I was quite itchy, and had a mild rash. It was never bad, nothing close to what I had with ipi, and eventually it went away without needing steroids. The main side effects other than that were fatigue, which was really not that bad most of the time, and my feet and legs seemed to ache in the mornings.

Now I'm in a trial and getting Opdivo in combination with an experimental drug and I'm getting similar side effects to Keytruda. They're not bad at all.

 My best wishes to you for success with whatever you choose.

-Bill