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4th Opdivo Infusion 480 – Non stop HEADACHE
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4th Opdivo Infusion 480 – Non stop HEADACHE

› Forums › General Melanoma Community › 4th Opdivo Infusion 480 – Non stop HEADACHE

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    • August 27, 2018 at 8:13 pm
    Foothillfoundling
    Participant

      Hi All, Fiance had his 4th Opdivo infusion on 8/3/2018.  After this last infusion: typical fatigue, face a bit puffy but this time his headache has been ongoing.  He has been taking Tylenol, Advil, Aleve (I know…..not good) and they are not helping.  Oncologist had scheduled him for “an infusion” for the headache…..no idea what this “infusion” may be?  Today Onc decided she wants his MRI done first (this is his first scan since he began treatment.). MRI is now scheduled for tomorrow morning with the “mystery” headache infusion to follow at 1pm.  His monthly 480 Opdivo infusion is scheduled for this Friday ( this will be number 5 of 12.)  Any one else experienced the constant headache?  If so, what did you do?  Is this normal?  Thanks so much for sharing your experiences.  I check in often for updates and truly value all the information.

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        • August 27, 2018 at 9:31 pm
        MovingOn
        Participant

          MRI is to check if the pituitary has swelled (or any other swelling in brain). Infusion will be a steroid I would guess.

          My pituitary swelled from Ipilimumab, and this condition is not as likely with Opdivo. 

          Don’t let them try to tell you it is merely sinusitis. That happened to me and less than an hour later my MRI showed that my pituitary had doubled in size (since the previous scale 3 months earlier) and all my pituitary output was near zero (TSH, Cortisol, Testosterone). But after seeing an Endocrinologist for 12 months things are much better. 

           

          Wishing you all the best

          • August 28, 2018 at 12:31 am
          Edwin
          Participant

            I have had headache off and on ( mostly on ), since I began receiving Opdivo infusions on April 1, 2016.   My headaches are not severe enough to take pain medication.  I just ignore them.  My oncologist ordered 3 brain MRIs, because of my headaches.  Those MRIs did not show brain cancer.    My headaches are usually a little worse following an Opdivo infusion.

            • August 29, 2018 at 2:37 am
            miaka618
            Participant
              I had a 2 week long headache and ended up in the ER for an emergency MRI. My pituitary gland was definitely swollen. Almost non-existent cortisol and thyroid hormones. I take pills for that now.
              • September 2, 2018 at 7:51 pm
              ve heard it both ways
              Participant

                Sorry your fiancé is experiencing these headaches. I too had terrible headaches after my first few Opdivo treatments. Mine eventually went away on their own. 

                  • September 30, 2018 at 4:17 am
                  Foothillfoundling
                  Participant

                    Thank you all for responding and my apologies for not updating sooner.  This month has been the worst yet.  I am so scared for him my heart is breaking. He had his MRI, then PET and CAT.  Nothing detected.  The mystery infusion was Morphine.  He felt better.  I picked up his Norco on Thursday.  He had to defer his 6th Opdivo 480 infusion yesterday as he is not feeling well at all.  The Drs have not given us a clear concise or definitive diagnosis on the lump under his right ear.  Today his steroids were picked up.  He has not started them yet.  I hope he starts feeling better.  I am so scared for him.  His appetite is not good,  he is still sleeping most days.  How do we know the Opdivo is working?  Is it just making him sicker?  We meet with the main Oncologist and his surgeon on Nov 12th at the Melanoma Clinic in San Francisco.  Dr. Kashani and Dr. Leong have been amazing.  His treatment Onc in Sac is very good too.  I just feel like we are missing something?  Hoping the Pred helps….. we shall see.  We will be 1/2 way through the one year regimen with infusion 6 as soon as he is healthy enough to do it.  How would we know if this working?   I see significant quality of life issues.  Extreme fatigue, we got the rash under control with steroid creams, nausea, body aches, headaches.  I am trying so hard to be strong but I am so scared for him.  Pr  I hate this stupid nightmare disease.  Since he was staged 3C after initial surgery with the axillary node 2 lit, is it progressing?   I know he was sick long before diagnosis, I felt it and he was fatigued since last year.  How else could the tumor be 5.5 mm HUGe! So many questions.  Sending hugs and prayers to all. 

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