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A little bummed
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A little bummed

› Forums › General Melanoma Community › A little bummed

  • Post
    • September 21, 2016 at 6:17 pm
    Aaron
    Participant

      So I met with my dr's nurse practitioner and am now in the process of weaning off of prednisone and getting revved up to resume nivo treatment after my pituitary issues.  I wanted to get more details about my shrinkage and told her I never got my email giving me all of my results. She read most of my results and all of my tumors have shrunk by 1/2 roughly. There is one tumors though that was never mentioned and has never been mentioned before that has grown. I would not have known about this tumor if I had not read my exam results in my email. I have an enlargement of the porta carval lymph nodes that is over 2 cm in size that the  results state concerning for metastasis. I am keeping faith that I was not told about this for a reason as it is undetermined or maybe some underlying factors I do not know about. Just a little bummed that I was all go and realize that there are still many obstacles in the way on this bumpy road. Part of me just had the inclination that I'll take the meds, get better, and move on and I still have that basic belief. Just worn down a little. 

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        • September 21, 2016 at 9:32 pm
        Polymath
        Participant

          Hi Aaron,

          Yes, a bumpy road indeed.  Mel is such a bad-boy, who refuses to play by the rules.  I have had the same thing happen.  Mets that are present and doctors sort of brushing them off, even though close examination of radiology reports reveal them.  I could speculate that our doctors may be treating us as best they can already and adding to anxiety serve no productive purpose.  What's important is you seem to have the right attitude about beating this back.  Stay positive and keep living life.  Best to you in the battle.

          Gary

          • September 21, 2016 at 9:32 pm
          Polymath
          Participant

            Hi Aaron,

            Yes, a bumpy road indeed.  Mel is such a bad-boy, who refuses to play by the rules.  I have had the same thing happen.  Mets that are present and doctors sort of brushing them off, even though close examination of radiology reports reveal them.  I could speculate that our doctors may be treating us as best they can already and adding to anxiety serve no productive purpose.  What's important is you seem to have the right attitude about beating this back.  Stay positive and keep living life.  Best to you in the battle.

            Gary

            • September 21, 2016 at 9:32 pm
            Polymath
            Participant

              Hi Aaron,

              Yes, a bumpy road indeed.  Mel is such a bad-boy, who refuses to play by the rules.  I have had the same thing happen.  Mets that are present and doctors sort of brushing them off, even though close examination of radiology reports reveal them.  I could speculate that our doctors may be treating us as best they can already and adding to anxiety serve no productive purpose.  What's important is you seem to have the right attitude about beating this back.  Stay positive and keep living life.  Best to you in the battle.

              Gary

              • September 22, 2016 at 2:42 pm
              Gene_S
              Participant

                I found it helpful to request copies of all reports:  radiology, blood and surgery.  I kept these in a file so if I ever went for a second opinion I had them handy and ready to take with me.

                • September 22, 2016 at 2:42 pm
                Gene_S
                Participant

                  I found it helpful to request copies of all reports:  radiology, blood and surgery.  I kept these in a file so if I ever went for a second opinion I had them handy and ready to take with me.

                  • September 22, 2016 at 2:42 pm
                  Gene_S
                  Participant

                    I found it helpful to request copies of all reports:  radiology, blood and surgery.  I kept these in a file so if I ever went for a second opinion I had them handy and ready to take with me.

                    • September 22, 2016 at 3:25 pm
                    WithinMySkin
                    Participant
                      Hey Aaron I’m so sorry you’re still on the up and down of the roller coaster. I agree with Gary that many times docs want to be be positive about results. Decrease by 1/2 is GREAT news!! Lymph nodes can enlarge for many reasons, not just metastasis, so they possibly didn’t mention this before due to the uncertainty of what is causing it to grow. Don’t let this gray news overshadow the good news. Your treatment is clearly working, and even if it’s only a partial response, that’s still a response. Hopefully you can wean from the prednisone easily and the Nivo will take care of the rest.

                      All the best,
                      Lauren

                      • September 22, 2016 at 3:25 pm
                      WithinMySkin
                      Participant
                        Hey Aaron I’m so sorry you’re still on the up and down of the roller coaster. I agree with Gary that many times docs want to be be positive about results. Decrease by 1/2 is GREAT news!! Lymph nodes can enlarge for many reasons, not just metastasis, so they possibly didn’t mention this before due to the uncertainty of what is causing it to grow. Don’t let this gray news overshadow the good news. Your treatment is clearly working, and even if it’s only a partial response, that’s still a response. Hopefully you can wean from the prednisone easily and the Nivo will take care of the rest.

                        All the best,
                        Lauren

                        • September 22, 2016 at 3:25 pm
                        WithinMySkin
                        Participant
                          Hey Aaron I’m so sorry you’re still on the up and down of the roller coaster. I agree with Gary that many times docs want to be be positive about results. Decrease by 1/2 is GREAT news!! Lymph nodes can enlarge for many reasons, not just metastasis, so they possibly didn’t mention this before due to the uncertainty of what is causing it to grow. Don’t let this gray news overshadow the good news. Your treatment is clearly working, and even if it’s only a partial response, that’s still a response. Hopefully you can wean from the prednisone easily and the Nivo will take care of the rest.

                          All the best,
                          Lauren

                          • September 22, 2016 at 3:35 pm
                          KAF
                          Participant

                            Hi Aaron –

                            Karen here.  Sorry to hear about the updated not being what you hoped.  I do know that my scans were done at 8 weeks after my 3rd dose and 7 weeks after I had gone on the steroids for the pituitary inflamation.  You didn't go on the steroids until a week after I did and you had your scans a week before mine so if i'm correct you only had the scans done 6 weeks after you started the steroids.  My doc said that she has seen many responses in the 10-12 week range after the ipi/nivo treatment so she had forewarned me that if the scans didn't come out as well as we had wanted, we would rescan in the 12 week range.  Have you discussed that with your doc?  I meet with my doc in 1 month and hopefully the external melanoma will have shrunk enough to maybe remove by surgery and hopefully i'll be weaned down enough on the steroids to start up on the nivo maintenance. Doesn't sound like your doc is very forthcoming with information so be sure to have all your questions/concerns in writing so you can have him/her answer them directly

                            • September 22, 2016 at 3:35 pm
                            KAF
                            Participant

                              Hi Aaron –

                              Karen here.  Sorry to hear about the updated not being what you hoped.  I do know that my scans were done at 8 weeks after my 3rd dose and 7 weeks after I had gone on the steroids for the pituitary inflamation.  You didn't go on the steroids until a week after I did and you had your scans a week before mine so if i'm correct you only had the scans done 6 weeks after you started the steroids.  My doc said that she has seen many responses in the 10-12 week range after the ipi/nivo treatment so she had forewarned me that if the scans didn't come out as well as we had wanted, we would rescan in the 12 week range.  Have you discussed that with your doc?  I meet with my doc in 1 month and hopefully the external melanoma will have shrunk enough to maybe remove by surgery and hopefully i'll be weaned down enough on the steroids to start up on the nivo maintenance. Doesn't sound like your doc is very forthcoming with information so be sure to have all your questions/concerns in writing so you can have him/her answer them directly

                              • September 22, 2016 at 3:35 pm
                              KAF
                              Participant

                                Hi Aaron –

                                Karen here.  Sorry to hear about the updated not being what you hoped.  I do know that my scans were done at 8 weeks after my 3rd dose and 7 weeks after I had gone on the steroids for the pituitary inflamation.  You didn't go on the steroids until a week after I did and you had your scans a week before mine so if i'm correct you only had the scans done 6 weeks after you started the steroids.  My doc said that she has seen many responses in the 10-12 week range after the ipi/nivo treatment so she had forewarned me that if the scans didn't come out as well as we had wanted, we would rescan in the 12 week range.  Have you discussed that with your doc?  I meet with my doc in 1 month and hopefully the external melanoma will have shrunk enough to maybe remove by surgery and hopefully i'll be weaned down enough on the steroids to start up on the nivo maintenance. Doesn't sound like your doc is very forthcoming with information so be sure to have all your questions/concerns in writing so you can have him/her answer them directly

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