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KAF

› Forums › General Melanoma Community › KAF

  • Post
    • September 14, 2016 at 7:57 pm
    Aaron
    Participant

      I hope I am not calling you out but was wondering what you found out.  

    Viewing 2 reply threads
    • Replies
        • September 14, 2016 at 10:38 pm
        KAF
        Participant

          HI Aaron,

          I was going to post tomorrow but since you asked smiley. ….Did both scans (MRI & PET) yesterday.  I'm scheduled to meet with my doc tomorrow but she couldn't wait to call me yesterday afternoon as soon as she got the results.  We are on the same path again!!  Significant shrinkage (although for us gals it doesn't have the same double meaning 🙂

          So hard to believe we've had the same side affects and results the entire time (except for the rash you got during your 3rd dose).  She said the cancer does not appear in my liver or lymph nodes anymore. So hard to believe the good results after only 7 weeks of the ipi/nivo.   I do still have some visible lesions from the primary sight (which are external so didn't need a PET for that) so the converstaion tomorrow will be to discuss what the next steps are.  I guess I'll ask about radiation which I could still do while on the steroids for the pituitary for the primary lesions or do I try to get weaned off the steroids first and then continue with nivo maintenance or take meds for the BRAF mutation and hope they will continue to keep away any progression and still attack the primary.  I think both of these are all dependent on whatever the maintenance dose will end up being.

          kind of odd though…the MRI showed the pituitary back to its normal size but I still get periodic headaches and I'm still on 70mg of the prednisone. I emailed my endocrinologist to figure out whats up with that.

          At this point all I've been wanting is to hear some positiive news and yesterday's news is just starting to sink in.  I think its time to pop open a bottle of good wine tonight!

          Did you find out what your next steps are going to be yet?

          Karen

            • September 14, 2016 at 10:49 pm
            Aaron
            Participant

              Not yet. My headaches have sort of returned but they are short lived. I almost wonder if the extended time on prednisone is giving my  headaches. I have my next visit next Tuesday. I may or may not get another nivo then. It's in the air. I sincerely doubt it since I will be seeing the nurse practitioner instead of the dr but I was told to be ready for anything 

              • September 16, 2016 at 2:17 am
              KAF
              Participant

                Met with the doc today. Slowly being weaned off the predinisone.  Still weaning me slowly down on prednisone (started at 60 today and for the rest of the week).  Only getting headaches for about an hour mid afternoon/early evening.  Due to the primary location (the only spots left where there's any melanoma as of today) she doesn't want to do surgery or radiation.  She doesn't want to do any of the BRAF drugs and would rather keep that if needed for the future.  at this point I'll be going in again in about a month and we'll see whether there is any more "shrinkage" and if I can go on the Nivo maintenance which is her first choice of what to do next.  She's going to consult with other doIcs during this time to see what other option are as well.  I guess I just need to hang tight for the next month and hopefully get off this prednisone – my face looks like you can pop it like a balloon – yuck!

                • September 18, 2016 at 1:52 am
                Aaron
                Participant

                  Sounds very positive. I have not been told anything as far as size or how much shrinkage other than it is "significant shrinkage".  I go in Tuesday for a follow up. I know we are different cases but I definitely want to continue to compare or follow up with each other. My thoughts are that I will begin to be weaned as well. As far as ext treatment I really don't know. Wit the pneumonia scare I had or developed it may be delayed again. Evidently pneumonia is a possible side effect of nivo. Hoping it's sign that I am a mega responded to it as well but at same time I want to get back on track and start treatments again 

                  • September 18, 2016 at 1:52 am
                  Aaron
                  Participant

                    Sounds very positive. I have not been told anything as far as size or how much shrinkage other than it is "significant shrinkage".  I go in Tuesday for a follow up. I know we are different cases but I definitely want to continue to compare or follow up with each other. My thoughts are that I will begin to be weaned as well. As far as ext treatment I really don't know. Wit the pneumonia scare I had or developed it may be delayed again. Evidently pneumonia is a possible side effect of nivo. Hoping it's sign that I am a mega responded to it as well but at same time I want to get back on track and start treatments again 

                    • September 18, 2016 at 1:52 am
                    Aaron
                    Participant

                      Sounds very positive. I have not been told anything as far as size or how much shrinkage other than it is "significant shrinkage".  I go in Tuesday for a follow up. I know we are different cases but I definitely want to continue to compare or follow up with each other. My thoughts are that I will begin to be weaned as well. As far as ext treatment I really don't know. Wit the pneumonia scare I had or developed it may be delayed again. Evidently pneumonia is a possible side effect of nivo. Hoping it's sign that I am a mega responded to it as well but at same time I want to get back on track and start treatments again 

                      • September 16, 2016 at 2:17 am
                      KAF
                      Participant

                        Met with the doc today. Slowly being weaned off the predinisone.  Still weaning me slowly down on prednisone (started at 60 today and for the rest of the week).  Only getting headaches for about an hour mid afternoon/early evening.  Due to the primary location (the only spots left where there's any melanoma as of today) she doesn't want to do surgery or radiation.  She doesn't want to do any of the BRAF drugs and would rather keep that if needed for the future.  at this point I'll be going in again in about a month and we'll see whether there is any more "shrinkage" and if I can go on the Nivo maintenance which is her first choice of what to do next.  She's going to consult with other doIcs during this time to see what other option are as well.  I guess I just need to hang tight for the next month and hopefully get off this prednisone – my face looks like you can pop it like a balloon – yuck!

                        • September 16, 2016 at 2:17 am
                        KAF
                        Participant

                          Met with the doc today. Slowly being weaned off the predinisone.  Still weaning me slowly down on prednisone (started at 60 today and for the rest of the week).  Only getting headaches for about an hour mid afternoon/early evening.  Due to the primary location (the only spots left where there's any melanoma as of today) she doesn't want to do surgery or radiation.  She doesn't want to do any of the BRAF drugs and would rather keep that if needed for the future.  at this point I'll be going in again in about a month and we'll see whether there is any more "shrinkage" and if I can go on the Nivo maintenance which is her first choice of what to do next.  She's going to consult with other doIcs during this time to see what other option are as well.  I guess I just need to hang tight for the next month and hopefully get off this prednisone – my face looks like you can pop it like a balloon – yuck!

                          • September 14, 2016 at 10:49 pm
                          Aaron
                          Participant

                            Not yet. My headaches have sort of returned but they are short lived. I almost wonder if the extended time on prednisone is giving my  headaches. I have my next visit next Tuesday. I may or may not get another nivo then. It's in the air. I sincerely doubt it since I will be seeing the nurse practitioner instead of the dr but I was told to be ready for anything 

                            • September 14, 2016 at 10:49 pm
                            Aaron
                            Participant

                              Not yet. My headaches have sort of returned but they are short lived. I almost wonder if the extended time on prednisone is giving my  headaches. I have my next visit next Tuesday. I may or may not get another nivo then. It's in the air. I sincerely doubt it since I will be seeing the nurse practitioner instead of the dr but I was told to be ready for anything 

                            • September 14, 2016 at 10:38 pm
                            KAF
                            Participant

                              HI Aaron,

                              I was going to post tomorrow but since you asked smiley. ….Did both scans (MRI & PET) yesterday.  I'm scheduled to meet with my doc tomorrow but she couldn't wait to call me yesterday afternoon as soon as she got the results.  We are on the same path again!!  Significant shrinkage (although for us gals it doesn't have the same double meaning 🙂

                              So hard to believe we've had the same side affects and results the entire time (except for the rash you got during your 3rd dose).  She said the cancer does not appear in my liver or lymph nodes anymore. So hard to believe the good results after only 7 weeks of the ipi/nivo.   I do still have some visible lesions from the primary sight (which are external so didn't need a PET for that) so the converstaion tomorrow will be to discuss what the next steps are.  I guess I'll ask about radiation which I could still do while on the steroids for the pituitary for the primary lesions or do I try to get weaned off the steroids first and then continue with nivo maintenance or take meds for the BRAF mutation and hope they will continue to keep away any progression and still attack the primary.  I think both of these are all dependent on whatever the maintenance dose will end up being.

                              kind of odd though…the MRI showed the pituitary back to its normal size but I still get periodic headaches and I'm still on 70mg of the prednisone. I emailed my endocrinologist to figure out whats up with that.

                              At this point all I've been wanting is to hear some positiive news and yesterday's news is just starting to sink in.  I think its time to pop open a bottle of good wine tonight!

                              Did you find out what your next steps are going to be yet?

                              Karen

                              • September 14, 2016 at 10:38 pm
                              KAF
                              Participant

                                HI Aaron,

                                I was going to post tomorrow but since you asked smiley. ….Did both scans (MRI & PET) yesterday.  I'm scheduled to meet with my doc tomorrow but she couldn't wait to call me yesterday afternoon as soon as she got the results.  We are on the same path again!!  Significant shrinkage (although for us gals it doesn't have the same double meaning 🙂

                                So hard to believe we've had the same side affects and results the entire time (except for the rash you got during your 3rd dose).  She said the cancer does not appear in my liver or lymph nodes anymore. So hard to believe the good results after only 7 weeks of the ipi/nivo.   I do still have some visible lesions from the primary sight (which are external so didn't need a PET for that) so the converstaion tomorrow will be to discuss what the next steps are.  I guess I'll ask about radiation which I could still do while on the steroids for the pituitary for the primary lesions or do I try to get weaned off the steroids first and then continue with nivo maintenance or take meds for the BRAF mutation and hope they will continue to keep away any progression and still attack the primary.  I think both of these are all dependent on whatever the maintenance dose will end up being.

                                kind of odd though…the MRI showed the pituitary back to its normal size but I still get periodic headaches and I'm still on 70mg of the prednisone. I emailed my endocrinologist to figure out whats up with that.

                                At this point all I've been wanting is to hear some positiive news and yesterday's news is just starting to sink in.  I think its time to pop open a bottle of good wine tonight!

                                Did you find out what your next steps are going to be yet?

                                Karen

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