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Second Opinion

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  • This topic has 6 replies, 2 voices, and was last updated 7 years ago by Jdc.
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    • August 23, 2017 at 9:03 pm
    Jdc
    Participant

      Hi all, I finally got in to  melanoma specialist for my second opinion. unnfortunatley it was after i started 1 round of ipi, the specialist advised me that a pdl1 test should have been done as was not. He sent for the test and it was positive pdl-1 and also braf positive. he advised that i not resume ipi and start on keytruda along with radiation on another spot on lung that grew from 6 to over 9mm in 3 months. I had some pituitary swelling about 4-5 weeks after ipi infusion causing severe headaches and some vision changes.Wondering if anyone knows if keytruda will effect this also? i see the doc this friday ill update more then. Thank You all!!

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        • August 24, 2017 at 1:40 am
        BrianP
        Participant

          Joe,

          I think it's quite possible you may be fine on PD-1 despite the side effects from Ipi.  In Aug 2013 I was in a trial of sequential Ipi and Nivo.  Did 12 weeks of nivo with no issues and good benefit. Next was 12 weeks of Ipi (4 infusions) but I only made it through 3 because of the same side effects you are experiencing.  After going through the prednisone cycle I returned to Nivo for 18 months with no side effects.  

          Glad you are with a melanoma expert.  Sounds like he's giving you sound advice.

          Brian

            • August 24, 2017 at 1:49 am
            Jdc
            Participant
              Thanks Brian, I hope your doing well, the headaches from the ipi are no joke! Had for 6 days before starting steroids now 2 days on steroids and they ease up but come back in evening. Hope all is well Brian thanks for the info
              • August 25, 2017 at 2:23 am
              BrianP
              Participant

                You're not kidding about those headaches.  I was pretty fortuante that once I started the prednisone almost within an hour I was feeling dramatically better.  What dosage are you on now?  I started at 60mg daily for about a week and then started the taper over the next two weeks.  I now take 5mg daily and probably will for the rest of my life.

                • August 29, 2017 at 2:29 pm
                Jdc
                Participant
                  Hi Brian, I’m still on the steroids 100 MG til this Thursday, then down 20mg every 3 days.still having the headaches, they ease up like you said about an hour after taking steroids. But typically are back in the evenings and have been waking up with headache. Dr wants me to be off for about 4 days before they do labs. I have noticed my eyesight is not right, did you experience that? Hope all is well!
                  • August 29, 2017 at 8:48 pm
                  BrianP
                  Participant

                    Sorry you are still having the discomfort.  Have you talked to your doc about timing of the doses.  Maybe you are already doing this but instead of 100mg in the morning do 50mg in the morning and 50mg in the early afternoon or some variation like 60/40 or 80/20.  On a much lesser degree early on when I was just on 5mg a day I had to move from 5mg to 7.5mg because in the afternoons I would start to get a headache. I would take 5mg in the morning and 2.5mg in the early afternoon.  I imagine you are finding it pretty difficult to sleep at night.

                    I didn't have any of the eye discomforts you are speaking of.  My understanding is the discomfort comes from the pituitary gland swelling putting pressure on the optic nerve.  I found a few medical articles but one's that seemed most worthwhile were pay for view like this one:

                    http://www.tandfonline.com/doi/full/10.3109/09273948.2014.1001858?scroll=top&needAccess=true

                    I saw a endocrinologist when my episode went down.  You might want to consider seeing one but you need to get a varsity level one because most aren't used to seeing this kind of thing.  

                    Brian

                    • August 30, 2017 at 3:22 am
                    Jdc
                    Participant
                      Thank you for the link Brian, Yeah I have spoke with doc and have split dosage up, seem to help ease headaches, but usually by bedtime the are back if not they are there by the time I wake up. Sleeping has been so so, doc prescribed me Trazadone, but I haven’t taken, had new ct and mri friday, so hopefully get some info from doc in net couple of days. He did not say anything about seeing an endocrinologist but I will ask, thanks again for the info, the information and more importantly the people on this site are great! Thank you again Brian and I hope all is well!
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