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Update after speaking with doctor-Stage IV brain mets
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Update after speaking with doctor-Stage IV brain mets

› Forums › General Melanoma Community › Update after speaking with doctor-Stage IV brain mets

  • Post
    • August 1, 2016 at 4:34 pm
    keepthefaith11
    Participant
      I feel good about having the chance to speak with my father’s melanoma specialist face-to-face while visiting in Europe. The conversation went pretty well I thought.

      A bit of a background. My father was diagnosed with Stage 3C back in January. He had seizures few weeks ago and they found 13 brain Mets ranging from 2 millimeters to 13 millimeters in size.

      He finished two weeks of WBR and is feeling pretty well as of now. He is still on steroids and anti-seizure medication.

      After talking to the doctor and telling her my opinion it seems her plan of action is to do a CT with contrast
      to see how the tumors reacted to the radiation. She said if he had a good response they might consider doing stereo active radiation if there are spots left, followed by immunotherapy. If the response was not so great she prefers to start him on the BRAF inhibitors.

      Seems she would preferred to keep the Inhibitors in our back pocket should we need them later. She feels if he is stable to get going with immunotherapy since it takes a while to kick in. If he progresses she would switch to the inhibitors.

      I feel pretty good about this plan. What do you guys think? Any and all opinions, criticisms, agreements are welcome!

      Thank you!!

      Annie

      Ps. I went to the dermatologist today and had my first ever skin check. I seriously thought I was going to have a panic attack right there in the office. They took one mole off my back, the doctor said the worst it would be is atypical. I feel very fortunate.

    Viewing 2 reply threads
    • Replies
        • August 1, 2016 at 7:42 pm
        ed williams
        Participant

          Hi Annie, if you don't mind me asking where is he being treated? As far as the plan that you have described, it seems pretty reasonable! Are they talking about giving him the combination of ipi and nivo if the scans come back good? I usually get a Mri for my brain scans since they need to do a special series to prepare for the cyberknife if needed!!!! Not sure why they would do a Ct with contrast scan!!! Best Wishes!!! Ed

            • August 2, 2016 at 4:02 pm
            keepthefaith11
            Participant
              Ed, my father is being treated in Sweden. His doctor is the melanoma specialist and on the board for melanoma in Europe I believe. I do feel they are a bit more passive over there, or more careful maybe. Also, there are no adjuvant treatments available.

              They do not do the combo treatment, so it would be Opdivo.

              What is the difference between gamma knife and stereotactic radiation? They do not have gamma knife at the hospital but they do the stereotactic treatments.
              Also, since he had a grade 3 reaction to yervoy, does that mean that he cannot use that specific medication again?

              I asked why they wouldn’t do another MRI and the doctor responded a CT is faster and easier, and with contrast they can see things really well.

              I know things are never going to be 100 % the way I might want it, but it does seem like they at least know what they’re talking about. And at this point him being treated there is our only option. I am not sure they would do anything much differently had he been here, at least not at this stage.

              Thanks!! Annie

              • August 2, 2016 at 5:12 pm
              ed williams
              Participant

                Hi Annie, gamma knife is just a brand name for a specific type of machine. There are several different stereotatic type treatments. I had a machine called the  cyber knife when I had three small mets treated in the fall of 2013. Opdivo (nivo) is a pd-1 inhibitor from Bristol Myer Squibb and has a very good record of success along with another pd-1 called Keytruda (pembro) from Merk. The reason I asked about a Ct with contrast for a brain scan was if they were planning on using stereotatic brain treatments they would have to order a Mri before hand. At least that has been my experience over the last 3 years. Best Wishes!!! Ed 

                • August 2, 2016 at 5:12 pm
                ed williams
                Participant

                  Hi Annie, gamma knife is just a brand name for a specific type of machine. There are several different stereotatic type treatments. I had a machine called the  cyber knife when I had three small mets treated in the fall of 2013. Opdivo (nivo) is a pd-1 inhibitor from Bristol Myer Squibb and has a very good record of success along with another pd-1 called Keytruda (pembro) from Merk. The reason I asked about a Ct with contrast for a brain scan was if they were planning on using stereotatic brain treatments they would have to order a Mri before hand. At least that has been my experience over the last 3 years. Best Wishes!!! Ed 

                  • August 2, 2016 at 5:12 pm
                  ed williams
                  Participant

                    Hi Annie, gamma knife is just a brand name for a specific type of machine. There are several different stereotatic type treatments. I had a machine called the  cyber knife when I had three small mets treated in the fall of 2013. Opdivo (nivo) is a pd-1 inhibitor from Bristol Myer Squibb and has a very good record of success along with another pd-1 called Keytruda (pembro) from Merk. The reason I asked about a Ct with contrast for a brain scan was if they were planning on using stereotatic brain treatments they would have to order a Mri before hand. At least that has been my experience over the last 3 years. Best Wishes!!! Ed 

                    • August 2, 2016 at 4:02 pm
                    keepthefaith11
                    Participant
                      Ed, my father is being treated in Sweden. His doctor is the melanoma specialist and on the board for melanoma in Europe I believe. I do feel they are a bit more passive over there, or more careful maybe. Also, there are no adjuvant treatments available.

                      They do not do the combo treatment, so it would be Opdivo.

                      What is the difference between gamma knife and stereotactic radiation? They do not have gamma knife at the hospital but they do the stereotactic treatments.
                      Also, since he had a grade 3 reaction to yervoy, does that mean that he cannot use that specific medication again?

                      I asked why they wouldn’t do another MRI and the doctor responded a CT is faster and easier, and with contrast they can see things really well.

                      I know things are never going to be 100 % the way I might want it, but it does seem like they at least know what they’re talking about. And at this point him being treated there is our only option. I am not sure they would do anything much differently had he been here, at least not at this stage.

                      Thanks!! Annie

                      • August 2, 2016 at 4:02 pm
                      keepthefaith11
                      Participant
                        Ed, my father is being treated in Sweden. His doctor is the melanoma specialist and on the board for melanoma in Europe I believe. I do feel they are a bit more passive over there, or more careful maybe. Also, there are no adjuvant treatments available.

                        They do not do the combo treatment, so it would be Opdivo.

                        What is the difference between gamma knife and stereotactic radiation? They do not have gamma knife at the hospital but they do the stereotactic treatments.
                        Also, since he had a grade 3 reaction to yervoy, does that mean that he cannot use that specific medication again?

                        I asked why they wouldn’t do another MRI and the doctor responded a CT is faster and easier, and with contrast they can see things really well.

                        I know things are never going to be 100 % the way I might want it, but it does seem like they at least know what they’re talking about. And at this point him being treated there is our only option. I am not sure they would do anything much differently had he been here, at least not at this stage.

                        Thanks!! Annie

                      • August 1, 2016 at 7:42 pm
                      ed williams
                      Participant

                        Hi Annie, if you don't mind me asking where is he being treated? As far as the plan that you have described, it seems pretty reasonable! Are they talking about giving him the combination of ipi and nivo if the scans come back good? I usually get a Mri for my brain scans since they need to do a special series to prepare for the cyberknife if needed!!!! Not sure why they would do a Ct with contrast scan!!! Best Wishes!!! Ed

                        • August 1, 2016 at 7:42 pm
                        ed williams
                        Participant

                          Hi Annie, if you don't mind me asking where is he being treated? As far as the plan that you have described, it seems pretty reasonable! Are they talking about giving him the combination of ipi and nivo if the scans come back good? I usually get a Mri for my brain scans since they need to do a special series to prepare for the cyberknife if needed!!!! Not sure why they would do a Ct with contrast scan!!! Best Wishes!!! Ed

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