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Yesterday’s results
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Yesterday’s results

› Forums › General Melanoma Community › Yesterday’s results

  • Post
    • August 10, 2016 at 8:04 pm
    Aaron
    Participant

      Well it is what was suspected. My MRI was swollen and I have now been taken off my scheduled treatment plan. I meet with an endocrinologist tomorrow and will get another more detailed MRI. My blood test revealed that my ACTH, TSH, and cortisol levels are very low and I am now on prednisone. Strongly believe I am beating this and that this is all going to mean good things in the end. 

    Viewing 11 reply threads
    • Replies
        • August 11, 2016 at 5:43 am
        MoiraM
        Participant

          Hi Aaron

          I had Ipi/Yervoy and hypophyysitis.

          Good news – I am a responder – tumours shrank – one year NED.

          Bad news, my anterior pituitary function never came back. Hopefully they caught yours earlier and it will. Having an endrocrinologst involved is a good idea.

          I take a 'replacement dose' of cortisol (8mg prednisolone) and a 'replacement dose' of thyroxine (currently 82.5mg levothyroxine). I consider the lack of anteripr pituitary gland function to be a small price to pay for being one year NED.

           

           

          • August 11, 2016 at 5:43 am
          MoiraM
          Participant

            Hi Aaron

            I had Ipi/Yervoy and hypophyysitis.

            Good news – I am a responder – tumours shrank – one year NED.

            Bad news, my anterior pituitary function never came back. Hopefully they caught yours earlier and it will. Having an endrocrinologst involved is a good idea.

            I take a 'replacement dose' of cortisol (8mg prednisolone) and a 'replacement dose' of thyroxine (currently 82.5mg levothyroxine). I consider the lack of anteripr pituitary gland function to be a small price to pay for being one year NED.

             

             

            • August 11, 2016 at 5:43 am
            MoiraM
            Participant

              Hi Aaron

              I had Ipi/Yervoy and hypophyysitis.

              Good news – I am a responder – tumours shrank – one year NED.

              Bad news, my anterior pituitary function never came back. Hopefully they caught yours earlier and it will. Having an endrocrinologst involved is a good idea.

              I take a 'replacement dose' of cortisol (8mg prednisolone) and a 'replacement dose' of thyroxine (currently 82.5mg levothyroxine). I consider the lack of anteripr pituitary gland function to be a small price to pay for being one year NED.

               

               

              • August 11, 2016 at 5:43 am
              MoiraM
              Participant

                Hi Aaron

                I had Ipi/Yervoy and hypophyysitis.

                Good news – I am a responder – tumours shrank – one year NED.

                Bad news, my anterior pituitary function never came back. Hopefully they caught yours earlier and it will. Having an endrocrinologst involved is a good idea.

                I take a 'replacement dose' of cortisol (8mg prednisolone) and a 'replacement dose' of thyroxine (currently 82.5mg levothyroxine). I consider the lack of anteripr pituitary gland function to be a small price to pay for being one year NED.

                 

                 

                • August 11, 2016 at 5:43 am
                MoiraM
                Participant

                  Hi Aaron

                  I had Ipi/Yervoy and hypophyysitis.

                  Good news – I am a responder – tumours shrank – one year NED.

                  Bad news, my anterior pituitary function never came back. Hopefully they caught yours earlier and it will. Having an endrocrinologst involved is a good idea.

                  I take a 'replacement dose' of cortisol (8mg prednisolone) and a 'replacement dose' of thyroxine (currently 82.5mg levothyroxine). I consider the lack of anteripr pituitary gland function to be a small price to pay for being one year NED.

                   

                   

                  • August 11, 2016 at 5:43 am
                  MoiraM
                  Participant

                    Hi Aaron

                    I had Ipi/Yervoy and hypophyysitis.

                    Good news – I am a responder – tumours shrank – one year NED.

                    Bad news, my anterior pituitary function never came back. Hopefully they caught yours earlier and it will. Having an endrocrinologst involved is a good idea.

                    I take a 'replacement dose' of cortisol (8mg prednisolone) and a 'replacement dose' of thyroxine (currently 82.5mg levothyroxine). I consider the lack of anteripr pituitary gland function to be a small price to pay for being one year NED.

                     

                     

                    • August 11, 2016 at 1:45 pm
                    slh4448
                    Participant

                      I hope that is exactly what this means Aaron…that you're beating this!!!!!

                      Stacy

                      • August 11, 2016 at 1:45 pm
                      slh4448
                      Participant

                        I hope that is exactly what this means Aaron…that you're beating this!!!!!

                        Stacy

                        • August 11, 2016 at 1:45 pm
                        slh4448
                        Participant

                          I hope that is exactly what this means Aaron…that you're beating this!!!!!

                          Stacy

                          • August 11, 2016 at 7:50 pm
                          KAF
                          Participant

                            Hi Aaron – its karen again (your former schedule buddy)

                            not sure if you saw my post from your previous posting last week.  Some others chimed in with their experiences and a youtube link with some interesting info.  One person posted that even on the low-dose predinsone they were able to discontinue the yervoy and continue with the Opdivo.

                            I'm off also, on prednisone and being weaned down (currently on 10mg/day and going to 5mg/day starting tomorrow).  endo thinks is most likely permanent but if i can beat this cancer its a small price to pay I guess. 

                            • August 11, 2016 at 7:50 pm
                            KAF
                            Participant

                              Hi Aaron – its karen again (your former schedule buddy)

                              not sure if you saw my post from your previous posting last week.  Some others chimed in with their experiences and a youtube link with some interesting info.  One person posted that even on the low-dose predinsone they were able to discontinue the yervoy and continue with the Opdivo.

                              I'm off also, on prednisone and being weaned down (currently on 10mg/day and going to 5mg/day starting tomorrow).  endo thinks is most likely permanent but if i can beat this cancer its a small price to pay I guess. 

                              • August 11, 2016 at 7:50 pm
                              KAF
                              Participant

                                Hi Aaron – its karen again (your former schedule buddy)

                                not sure if you saw my post from your previous posting last week.  Some others chimed in with their experiences and a youtube link with some interesting info.  One person posted that even on the low-dose predinsone they were able to discontinue the yervoy and continue with the Opdivo.

                                I'm off also, on prednisone and being weaned down (currently on 10mg/day and going to 5mg/day starting tomorrow).  endo thinks is most likely permanent but if i can beat this cancer its a small price to pay I guess. 

                                  • August 12, 2016 at 2:32 am
                                  Aaron
                                  Participant

                                    Karen. They started me on 40 mg a day. I am low hormones across the board. The endocrinologist said I have Addison's disease  and the male version of menopause. 

                                    • August 12, 2016 at 2:32 am
                                    Aaron
                                    Participant

                                      Karen. They started me on 40 mg a day. I am low hormones across the board. The endocrinologist said I have Addison's disease  and the male version of menopause. 

                                      • August 13, 2016 at 2:34 am
                                      KAF
                                      Participant

                                        Aaron – They had me on 70 the first week (yeah. Super high dose) then 50. Earlier this week at 30 and now at 10.  Dropping to 5 hopefully by next week.  Personally I think it's too early to say you have addisons when it's so early and you are just starting the prednisone.  I would think they need to check your numbers again in a week or two after you've been on the prednisone a little while and things have settled down a bit.  Oddly enough, the lymph node, which was almost the size of a golf ball in June is barely detectable this week. Doc is hoping that it's doing the same to the melanoma on my liver.  I'm just trying to enjoy life, back to school shopping with my daughter and keeping calm until the next set of scans.  I'm keeping positive that my body had its fill of the drug and  that if prednisone and synthroid are part of my long term future – i'll take it!!!

                                         

                                        • August 13, 2016 at 2:34 am
                                        KAF
                                        Participant

                                          Aaron – They had me on 70 the first week (yeah. Super high dose) then 50. Earlier this week at 30 and now at 10.  Dropping to 5 hopefully by next week.  Personally I think it's too early to say you have addisons when it's so early and you are just starting the prednisone.  I would think they need to check your numbers again in a week or two after you've been on the prednisone a little while and things have settled down a bit.  Oddly enough, the lymph node, which was almost the size of a golf ball in June is barely detectable this week. Doc is hoping that it's doing the same to the melanoma on my liver.  I'm just trying to enjoy life, back to school shopping with my daughter and keeping calm until the next set of scans.  I'm keeping positive that my body had its fill of the drug and  that if prednisone and synthroid are part of my long term future – i'll take it!!!

                                           

                                          • August 13, 2016 at 2:34 am
                                          KAF
                                          Participant

                                            Aaron – They had me on 70 the first week (yeah. Super high dose) then 50. Earlier this week at 30 and now at 10.  Dropping to 5 hopefully by next week.  Personally I think it's too early to say you have addisons when it's so early and you are just starting the prednisone.  I would think they need to check your numbers again in a week or two after you've been on the prednisone a little while and things have settled down a bit.  Oddly enough, the lymph node, which was almost the size of a golf ball in June is barely detectable this week. Doc is hoping that it's doing the same to the melanoma on my liver.  I'm just trying to enjoy life, back to school shopping with my daughter and keeping calm until the next set of scans.  I'm keeping positive that my body had its fill of the drug and  that if prednisone and synthroid are part of my long term future – i'll take it!!!

                                             

                                            • August 12, 2016 at 2:32 am
                                            Aaron
                                            Participant

                                              Karen. They started me on 40 mg a day. I am low hormones across the board. The endocrinologist said I have Addison's disease  and the male version of menopause. 

                                        Viewing 11 reply threads
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