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Very sick after Keytruda-raging headache,no energy, constant cough, up/down fever-
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Very sick after Keytruda-raging headache,no energy, constant cough, up/down fever-

› Forums › General Melanoma Community › Very sick after Keytruda-raging headache,no energy, constant cough, up/down fever-

  • Post
    • February 27, 2017 at 2:04 am
    AB
    Participant

      Help! I used to exercise 2.5 hrs a day, now can't get out of bed most days and 30 min cycle puts me back in bed for several hours. I'm exhausted and my head constantly hurts. Any suggestions? My 14 yo twin boys are scared to be alone with me. 

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        • February 27, 2017 at 2:10 am
        BrianP
        Participant

          You might be having some adverse endocrine side effects.  The headache symptom makes me wonder if you might have hypophysitis (swelling of the pituitary gland).  Only way to know for sure is a brain MRI.  More common with Ipi then anti-PD1 but still a possibility. If you do have it the next step is high doses of prednisone.  The severe fatigue could be related to the pituitary and/or thyroid.  Suggest you contact Iyou medical team immediately and I wouldn't wait more than a day or two to be seen.  Hypophysitis can lead to permenant damage to the pituitary gland.  If that is indeed what you have you will probably need to see an endocrinologist at some point in the near future.

          Brian

            • February 27, 2017 at 2:12 am
            AB
            Participant

              Thank you- my oncologist says it is nothing so I need a new one.

              • February 27, 2017 at 2:12 am
              AB
              Participant

                Thank you- my oncologist says it is nothing so I need a new one.

              • February 27, 2017 at 3:03 am
              tschmith
              Participant

                I agree with Brian!!!

                • February 27, 2017 at 3:23 am
                tschmith
                Participant

                  Please keep us posted!  I had moderate fatigue with Keytruda and Pituitary problems with Yervoy.  My bloodwork was off and they quickly put me on steroids. I really didn't feel any symptoms such as a headache, but had it gone on for longer I think I would have. They immediately ordered an MRI to check for swelling as soon as they saw that my bloodwork was off. I didn't go home that day until I had the MRI and the results. I was referred to an edocronologist in Bethesda. Everything is fine now.

                   

                    • February 27, 2017 at 4:11 am
                    Mark_DC
                    Participant

                      PI agree with tschmith. At Georgetown i am often doing bloodwork, they monitor for side effects constantly and are concrned abiut them. An now off prdenisone and hoping my readings are ok so i can restart keytruda. i think the georgetown doctos but also dr lipson are all concerned about side effects and would want to know what is causing this

                      • February 28, 2017 at 3:32 am
                      AB
                      Participant

                        My dr couldn't care less about side effects, or how I feel

                        • February 28, 2017 at 3:31 am
                        AB
                        Participant

                          Great to hear you are fine now! I'm waiting for Dr. Jang to respond…usually takes 2-3 business days to get any response, and I'm always made to feel my call is an inconvenience. Even when I had 104 fever and couldn't breath or swallow, so I went to the ER…I put a call into another Dr for a new oncologist. 

                          • February 28, 2017 at 2:57 pm
                          JohnA
                          Participant

                            Our oncologist only agreed to work with us if we understand that all medical care for my wife would be run by him first. She gets a cold, they want to know. They ask her to check in regularly by calling the office.  I don't know how they manage it, honestly.  But, I'm just saying this b/c that standard of care is out there.  I think you're in the DC area – if so, if I were you I'd drive over to Hopkins and see Dr. Sharfman.

                          • March 1, 2017 at 2:16 am
                          tschmith
                          Participant

                            I hope whoever you decided to see helps you very very soon.  I'm sorry your side effects are so severe.  I know besides the discomfort, the fact that you can't currently be nearly as active as you once were is so frustrating. Keep fighting!!!  Prayers for you!  I'm glad you got to at least meet Dr. Atkins.  He's always been very truthful with me.  He really knows what he's doing and has years of experience. I liked the team I had at NIH too.  Looking forward to hearing you have improved! 

                            Terrie

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