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Lbelle78

Opdivo infusions- Please Share Your Symptoms

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Hi guys, can any of you who have been on Opdivo infusions short term share your early symptoms? I'm supposed to start the first full week in June and am nervous about this! My doctor has of course shared all of the potential issues I might face such as thyroid issues, colitis, pneumonitis, but I would like to hear from actual patients. Thanks so much!!

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Hi Lbelle78,

I have had Opdivo's twin, Keytruda for melanoma.  I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!).  Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war).  But I digress...

I had a fairly easy time with Keytruda.  I was a little tired and achy (flu like symptoms) a day or two after the infusion.  Sometimes I had a headache, and my joints would hurt.  But after a few days I was back to my regular normal self.  I was able to work and if I timed it right, travel.  

The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were  a wealth of information and help in dealing with the treatment.  The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt.  Be patient with the patient is what I've heard.  So prepare yourself for the long game, and not necessarily the short game.  

In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug.  But they've had complete response.  May you too have a complete response with minimal side effects.

Hoping Opdivo kicks your LC to the curb!

Shalom,

Julie

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Thanks so much Julie, that's a great help!! I actually got a call back yesterday from the Dr. and he said that I've been approved for Keytruda rather than Opdivo, so we will meet with him tomorrow and start up next week. I'm nervous about it because before this diagnosis I rarely put anything but natural products into my body, and so the uncertainty of it all is crazy. But. it is a necessary evil and I am ready to get it done. 

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