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Lymph node Activity
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Lymph node Activity

› Forums › General Melanoma Community › Lymph node Activity

  • Post
    • January 18, 2017 at 6:20 pm
    blessd4x
    Participant

      So short story, hubby stage IV, did 12 opdivo treatments that ended april last year.  Scans have been clear. Today, results of scan show "Activity", the doctor calls in it, in the nodes by the pancreas and activity in the intestines.  So need tests for those.  The doctor who is usually lighthearted was very serious in her speach and body language. 

      Thoughts?  I dont know how to feel…

      R

    Viewing 5 reply threads
    • Replies
        • January 18, 2017 at 8:22 pm
        _Paul_
        Participant

          R,

          What type of scan did you just have? If not a PET then that seems to be what to do now to see if there is FDG uptake.

          I am sorry you are at this point of the roller coaster ride. Hopefully this is just a false alarm. Please keep us posted. You two are in my prayers.

          – Paul

          • January 18, 2017 at 8:22 pm
          _Paul_
          Participant

            R,

            What type of scan did you just have? If not a PET then that seems to be what to do now to see if there is FDG uptake.

            I am sorry you are at this point of the roller coaster ride. Hopefully this is just a false alarm. Please keep us posted. You two are in my prayers.

            – Paul

            • January 18, 2017 at 8:22 pm
            _Paul_
            Participant

              R,

              What type of scan did you just have? If not a PET then that seems to be what to do now to see if there is FDG uptake.

              I am sorry you are at this point of the roller coaster ride. Hopefully this is just a false alarm. Please keep us posted. You two are in my prayers.

              – Paul

                • January 18, 2017 at 8:30 pm
                blessd4x
                Participant

                  Hello Paul.  I feel like I know you after reading all your posts and replies everywhere.  I pray you are doing well.  Thank you for responding for me today.  It was a PET scan that is showing the "activity". Dr says the node has increased in size by 3cm. 

                  The internet is NOT your friend when looking up this kind of thing.   

                  • January 18, 2017 at 8:30 pm
                  blessd4x
                  Participant

                    Hello Paul.  I feel like I know you after reading all your posts and replies everywhere.  I pray you are doing well.  Thank you for responding for me today.  It was a PET scan that is showing the "activity". Dr says the node has increased in size by 3cm. 

                    The internet is NOT your friend when looking up this kind of thing.   

                    • January 18, 2017 at 8:30 pm
                    blessd4x
                    Participant

                      Hello Paul.  I feel like I know you after reading all your posts and replies everywhere.  I pray you are doing well.  Thank you for responding for me today.  It was a PET scan that is showing the "activity". Dr says the node has increased in size by 3cm. 

                      The internet is NOT your friend when looking up this kind of thing.   

                    • January 18, 2017 at 8:47 pm
                    _Paul_
                    Participant

                      Nuts. So what do they want now, a needle biopsy? The doc is a melanoma specialist I am assuming. Based on my experience this is the time to for your doc to step things up. Hopefully whatever tests are coming up next will indicate something else, but just in case, having a new plan is important. 

                      Luckilly this is still early, confined to intestines and pancreas. Also there are a lot of options open to you, from ipi-keytruda combo to promising clinical trials. Don't be afraid to advocate like hell.

                      – Paul

                      • January 18, 2017 at 8:47 pm
                      _Paul_
                      Participant

                        Nuts. So what do they want now, a needle biopsy? The doc is a melanoma specialist I am assuming. Based on my experience this is the time to for your doc to step things up. Hopefully whatever tests are coming up next will indicate something else, but just in case, having a new plan is important. 

                        Luckilly this is still early, confined to intestines and pancreas. Also there are a lot of options open to you, from ipi-keytruda combo to promising clinical trials. Don't be afraid to advocate like hell.

                        – Paul

                          • January 18, 2017 at 9:05 pm
                          blessd4x
                          Participant

                            No our onc is not a specialist but she does communicate with Moffit so thats good.  Yes, needle biopsy and colonoscopy is next.  Wants them done asap.  Even though we finished with Opdivo last April my husband is still dealing with side effects.  Im not sure he's going to be open to more.

                            • January 19, 2017 at 12:49 am
                            snow white
                            Participant

                              Hi Anon, i have to chime in here.  Honestly, if your doc doesn't specialize in Melanoma that is a problem.  A regular ono. is not trained in all that a specialist has to offer, and them just communicating  with a specialist is not enough.  Take it from someone who knows, and get another opinion.  

                              • January 19, 2017 at 5:25 am
                              Jules
                              Participant

                                I've got to second this. At the end  of the day a consult is a consult, he needs to be the specialist's patient. Trust me it's very different. I've seen it and it set my dad back when he progressed and went completely in his specialists care. Moffitt has an entire department dedicated to melanoma- Mayo Clinic in Jax and mt Sinai w dr lutzky. This is all assuming you're in FL. My apologizes if I'm incorrect. 

                                Wishing your husband all the best in his fight 

                                • January 19, 2017 at 5:25 am
                                Jules
                                Participant

                                  I've got to second this. At the end  of the day a consult is a consult, he needs to be the specialist's patient. Trust me it's very different. I've seen it and it set my dad back when he progressed and went completely in his specialists care. Moffitt has an entire department dedicated to melanoma- Mayo Clinic in Jax and mt Sinai w dr lutzky. This is all assuming you're in FL. My apologizes if I'm incorrect. 

                                  Wishing your husband all the best in his fight 

                                  • January 19, 2017 at 5:25 am
                                  Jules
                                  Participant

                                    I've got to second this. At the end  of the day a consult is a consult, he needs to be the specialist's patient. Trust me it's very different. I've seen it and it set my dad back when he progressed and went completely in his specialists care. Moffitt has an entire department dedicated to melanoma- Mayo Clinic in Jax and mt Sinai w dr lutzky. This is all assuming you're in FL. My apologizes if I'm incorrect. 

                                    Wishing your husband all the best in his fight 

                                    • January 19, 2017 at 2:20 pm
                                    blessd4x
                                    Participant

                                      I agree with you. But my husband likes this Onc.  Wont see a specialist in Moffitt.  We've been seeing her on this for 18 months now.  Theres been times i dont think shes done enough etc.  But he wont change now.  She said the lymph node activity is causing his fatigue.  Does that sound right?

                                      Thank you everyone!

                                      R

                                      • January 19, 2017 at 2:20 pm
                                      blessd4x
                                      Participant

                                        I agree with you. But my husband likes this Onc.  Wont see a specialist in Moffitt.  We've been seeing her on this for 18 months now.  Theres been times i dont think shes done enough etc.  But he wont change now.  She said the lymph node activity is causing his fatigue.  Does that sound right?

                                        Thank you everyone!

                                        R

                                        • January 19, 2017 at 10:52 pm
                                        snow white
                                        Participant

                                          I understand that he likes his current Onc., we had a VERY similar situation.  But, not seeing a Melanoma Specialist is cutting yourself short. This cancer is not one to be messed with. I wouldn't see a lung doctor to treat breast cancer, so is the same with melanoma.  Just my opinion.  I am really hoping things work out for the best for him 🙂

                                          • January 19, 2017 at 10:52 pm
                                          snow white
                                          Participant

                                            I understand that he likes his current Onc., we had a VERY similar situation.  But, not seeing a Melanoma Specialist is cutting yourself short. This cancer is not one to be messed with. I wouldn't see a lung doctor to treat breast cancer, so is the same with melanoma.  Just my opinion.  I am really hoping things work out for the best for him 🙂

                                            • January 23, 2017 at 1:29 pm
                                            blessd4x
                                            Participant

                                              I agree. I talk on deaf ears with him.  Selling himself short and cutting his life short I fear. 

                                              • January 23, 2017 at 1:29 pm
                                              blessd4x
                                              Participant

                                                I agree. I talk on deaf ears with him.  Selling himself short and cutting his life short I fear. 

                                                • January 23, 2017 at 1:29 pm
                                                blessd4x
                                                Participant

                                                  I agree. I talk on deaf ears with him.  Selling himself short and cutting his life short I fear. 

                                                  • January 19, 2017 at 10:52 pm
                                                  snow white
                                                  Participant

                                                    I understand that he likes his current Onc., we had a VERY similar situation.  But, not seeing a Melanoma Specialist is cutting yourself short. This cancer is not one to be messed with. I wouldn't see a lung doctor to treat breast cancer, so is the same with melanoma.  Just my opinion.  I am really hoping things work out for the best for him 🙂

                                                    • January 19, 2017 at 2:20 pm
                                                    blessd4x
                                                    Participant

                                                      I agree with you. But my husband likes this Onc.  Wont see a specialist in Moffitt.  We've been seeing her on this for 18 months now.  Theres been times i dont think shes done enough etc.  But he wont change now.  She said the lymph node activity is causing his fatigue.  Does that sound right?

                                                      Thank you everyone!

                                                      R

                                                      • January 19, 2017 at 12:49 am
                                                      snow white
                                                      Participant

                                                        Hi Anon, i have to chime in here.  Honestly, if your doc doesn't specialize in Melanoma that is a problem.  A regular ono. is not trained in all that a specialist has to offer, and them just communicating  with a specialist is not enough.  Take it from someone who knows, and get another opinion.  

                                                        • January 19, 2017 at 12:49 am
                                                        snow white
                                                        Participant

                                                          Hi Anon, i have to chime in here.  Honestly, if your doc doesn't specialize in Melanoma that is a problem.  A regular ono. is not trained in all that a specialist has to offer, and them just communicating  with a specialist is not enough.  Take it from someone who knows, and get another opinion.  

                                                          • January 18, 2017 at 9:05 pm
                                                          blessd4x
                                                          Participant

                                                            No our onc is not a specialist but she does communicate with Moffit so thats good.  Yes, needle biopsy and colonoscopy is next.  Wants them done asap.  Even though we finished with Opdivo last April my husband is still dealing with side effects.  Im not sure he's going to be open to more.

                                                            • January 18, 2017 at 9:05 pm
                                                            blessd4x
                                                            Participant

                                                              No our onc is not a specialist but she does communicate with Moffit so thats good.  Yes, needle biopsy and colonoscopy is next.  Wants them done asap.  Even though we finished with Opdivo last April my husband is still dealing with side effects.  Im not sure he's going to be open to more.

                                                            • January 18, 2017 at 8:47 pm
                                                            _Paul_
                                                            Participant

                                                              Nuts. So what do they want now, a needle biopsy? The doc is a melanoma specialist I am assuming. Based on my experience this is the time to for your doc to step things up. Hopefully whatever tests are coming up next will indicate something else, but just in case, having a new plan is important. 

                                                              Luckilly this is still early, confined to intestines and pancreas. Also there are a lot of options open to you, from ipi-keytruda combo to promising clinical trials. Don't be afraid to advocate like hell.

                                                              – Paul

                                                          Viewing 5 reply threads
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