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Radiation only?

Forums General Melanoma Community Radiation only?

  • Post
    bdhf
    Participant

      Question for you all…so far the only treatment discussed with my oncologist is radiation (SRS).  We are still in the diagnostic phase, trying to determine if "nodes" in my lungs may or may not be tumors.  Brain met was removed (3 cm) on 14 Dec.  If there are no further mets I am wondering if they will do anything more than the radiation.  I have a new oncologist but she doesn't want to see me until after the biopsy on my lung.

      Question for you all…so far the only treatment discussed with my oncologist is radiation (SRS).  We are still in the diagnostic phase, trying to determine if "nodes" in my lungs may or may not be tumors.  Brain met was removed (3 cm) on 14 Dec.  If there are no further mets I am wondering if they will do anything more than the radiation.  I have a new oncologist but she doesn't want to see me until after the biopsy on my lung.  So, I am in this limbo land as I wait for the consultation appointments then the real procedures with the pulmonologist and the radiation oncologist.  

      Any thoughts or inputs would be greatly appreciated!  Thanks!  

      Brenda

    Viewing 8 reply threads
    • Replies
        lhaley
        Participant

          Brenda,

          They discovered my brain met Oct 5th. It was discussed then (melanoma specialist) and the rest of the PET continued to be clear. I had it this past week and this PET is still clear with no treatment. Right now I know of only one trial where they will treat if there isn't measurable disease with antipd1 with a vaccine and you have to have the hla0201 factor, it's offered at Moffitt.

          FDA approved drugs need to show for stage IV that you also have measurable disease to watch.   I hope you find there is nothing else.

          I have had 2 small lung nodules that have been watched for 15 months. At this point it goes up a mm and next time smaller. So far we are just imagining that it is lung junk.  

          I know that with most cancers there are drugs for preventatives, right now nothing proved.  There is a trial out there for stage 3 where  they are comparing Interfuron and Yervoy.

          Good luck that you are clear.

          Linda

          lhaley
          Participant

            Brenda,

            They discovered my brain met Oct 5th. It was discussed then (melanoma specialist) and the rest of the PET continued to be clear. I had it this past week and this PET is still clear with no treatment. Right now I know of only one trial where they will treat if there isn't measurable disease with antipd1 with a vaccine and you have to have the hla0201 factor, it's offered at Moffitt.

            FDA approved drugs need to show for stage IV that you also have measurable disease to watch.   I hope you find there is nothing else.

            I have had 2 small lung nodules that have been watched for 15 months. At this point it goes up a mm and next time smaller. So far we are just imagining that it is lung junk.  

            I know that with most cancers there are drugs for preventatives, right now nothing proved.  There is a trial out there for stage 3 where  they are comparing Interfuron and Yervoy.

            Good luck that you are clear.

            Linda

            lhaley
            Participant

              Brenda,

              They discovered my brain met Oct 5th. It was discussed then (melanoma specialist) and the rest of the PET continued to be clear. I had it this past week and this PET is still clear with no treatment. Right now I know of only one trial where they will treat if there isn't measurable disease with antipd1 with a vaccine and you have to have the hla0201 factor, it's offered at Moffitt.

              FDA approved drugs need to show for stage IV that you also have measurable disease to watch.   I hope you find there is nothing else.

              I have had 2 small lung nodules that have been watched for 15 months. At this point it goes up a mm and next time smaller. So far we are just imagining that it is lung junk.  

              I know that with most cancers there are drugs for preventatives, right now nothing proved.  There is a trial out there for stage 3 where  they are comparing Interfuron and Yervoy.

              Good luck that you are clear.

              Linda

                bdhf
                Participant

                  Linda,

                  Thanks!  I am so hoping that there is no other disease to treat as well and that the SRS they want to do is all I will have to do for now!  I am pretty hopeful that the stuff in the lungs is just scar tissue or junk as I have reason to believe it is just that and not more mets.  But, I will do the diagnostics and see what they say.  Just reading all the posts with the different meds and treatments made me curious if they will suggest another treatment other than the radiation if there aren't any other mets.  I appreciate your inputs very much!

                  Brenda

                  bdhf
                  Participant

                    Linda,

                    Thanks!  I am so hoping that there is no other disease to treat as well and that the SRS they want to do is all I will have to do for now!  I am pretty hopeful that the stuff in the lungs is just scar tissue or junk as I have reason to believe it is just that and not more mets.  But, I will do the diagnostics and see what they say.  Just reading all the posts with the different meds and treatments made me curious if they will suggest another treatment other than the radiation if there aren't any other mets.  I appreciate your inputs very much!

                    Brenda

                    bdhf
                    Participant

                      Linda,

                      Thanks!  I am so hoping that there is no other disease to treat as well and that the SRS they want to do is all I will have to do for now!  I am pretty hopeful that the stuff in the lungs is just scar tissue or junk as I have reason to believe it is just that and not more mets.  But, I will do the diagnostics and see what they say.  Just reading all the posts with the different meds and treatments made me curious if they will suggest another treatment other than the radiation if there aren't any other mets.  I appreciate your inputs very much!

                      Brenda

                    Charlie S
                    Participant

                      SRS (Sterotactic Radio Surgery), which is a shaped beam through a linear accelerator, is, if not surgically removed is probably what you had to address your original brain met.

                      Lung thingies can be confsuing.via scans and are usually (if large enough) confirmed through a CT guided needle biopsy.

                      It is unclear to me what radiological (radiation) solution is being proposed and why.

                      Cheers,

                      Charlie S

                      Charlie S
                      Participant

                        SRS (Sterotactic Radio Surgery), which is a shaped beam through a linear accelerator, is, if not surgically removed is probably what you had to address your original brain met.

                        Lung thingies can be confsuing.via scans and are usually (if large enough) confirmed through a CT guided needle biopsy.

                        It is unclear to me what radiological (radiation) solution is being proposed and why.

                        Cheers,

                        Charlie S

                        Charlie S
                        Participant

                          SRS (Sterotactic Radio Surgery), which is a shaped beam through a linear accelerator, is, if not surgically removed is probably what you had to address your original brain met.

                          Lung thingies can be confsuing.via scans and are usually (if large enough) confirmed through a CT guided needle biopsy.

                          It is unclear to me what radiological (radiation) solution is being proposed and why.

                          Cheers,

                          Charlie S

                            bdhf
                            Participant

                              Charlie,

                              I had a craniotomy to remove the brain met (3 cm).  They want to do SRS to ensure that any lingering cells get destroyed so no further brain mets develop.  I am consulting with a pulmonologist this week for the lung biopsy but I am hoping it is just a usual, run of the mill nodule or scar tissue and doesn't turn out to be more melanoma.  They also did a thyroid ultrasound today…awaiting results.  So, the only treatment discussed thus far is the SRS.  WBR was discussed but I don't want that at this point.  

                              Just looking to see if others had any thoughts on what treatments are recommended if there are no other mets to be found…

                              Thanks!

                              Brenda

                              bdhf
                              Participant

                                Charlie,

                                I had a craniotomy to remove the brain met (3 cm).  They want to do SRS to ensure that any lingering cells get destroyed so no further brain mets develop.  I am consulting with a pulmonologist this week for the lung biopsy but I am hoping it is just a usual, run of the mill nodule or scar tissue and doesn't turn out to be more melanoma.  They also did a thyroid ultrasound today…awaiting results.  So, the only treatment discussed thus far is the SRS.  WBR was discussed but I don't want that at this point.  

                                Just looking to see if others had any thoughts on what treatments are recommended if there are no other mets to be found…

                                Thanks!

                                Brenda

                                bdhf
                                Participant

                                  Charlie,

                                  I had a craniotomy to remove the brain met (3 cm).  They want to do SRS to ensure that any lingering cells get destroyed so no further brain mets develop.  I am consulting with a pulmonologist this week for the lung biopsy but I am hoping it is just a usual, run of the mill nodule or scar tissue and doesn't turn out to be more melanoma.  They also did a thyroid ultrasound today…awaiting results.  So, the only treatment discussed thus far is the SRS.  WBR was discussed but I don't want that at this point.  

                                  Just looking to see if others had any thoughts on what treatments are recommended if there are no other mets to be found…

                                  Thanks!

                                  Brenda

                                  Karen M H
                                  Participant

                                    I would ask for the tissue sample from your lung to be checked for the BRAF mutation V600E so you could have available to you the vemurafenib that is currently being used for those of us with that mutation.  It is extending OS but is not a cure.  I probably wouldn't be writing this right now if it weren't for the drug. Of course, I also had WBRT for the brain mets.  That has also given me more time. Yervoy is also a new drug that has had good results. Both were approved early this year.  I currently have not been offered the Yervoy as part of my treatment plan.  I do expect that at some point.  But every scan determines the next direction of your treatment plan.  I hope all goes well with your biopsy. 

                                    Karen M H
                                    Participant

                                      I would ask for the tissue sample from your lung to be checked for the BRAF mutation V600E so you could have available to you the vemurafenib that is currently being used for those of us with that mutation.  It is extending OS but is not a cure.  I probably wouldn't be writing this right now if it weren't for the drug. Of course, I also had WBRT for the brain mets.  That has also given me more time. Yervoy is also a new drug that has had good results. Both were approved early this year.  I currently have not been offered the Yervoy as part of my treatment plan.  I do expect that at some point.  But every scan determines the next direction of your treatment plan.  I hope all goes well with your biopsy. 

                                      Karen M H
                                      Participant

                                        I would ask for the tissue sample from your lung to be checked for the BRAF mutation V600E so you could have available to you the vemurafenib that is currently being used for those of us with that mutation.  It is extending OS but is not a cure.  I probably wouldn't be writing this right now if it weren't for the drug. Of course, I also had WBRT for the brain mets.  That has also given me more time. Yervoy is also a new drug that has had good results. Both were approved early this year.  I currently have not been offered the Yervoy as part of my treatment plan.  I do expect that at some point.  But every scan determines the next direction of your treatment plan.  I hope all goes well with your biopsy. 

                                      zaccarin
                                      Participant

                                        My husband had a significant tumor burden in his lungs prior to beginning Yervoy. I believe that reducing the tumor burden with radiation might be considered a good first step prior to the initiation of Yervoy because that drug, which stimulates the immunity in 15-20%, might lead to an increase in tumor size, a situation to be avoided — when tumors are already in a dangerous location. Additionally, I have been told that radiation, which  results in broken pieces of melanoma, can stimulate a greater immune response from Yervoy. The eosinophils attack these broken pieces of melanoma, and there could be a significant immune response. I believe that now there are clinical trials with radiation and Yervoy.

                                        I hope this information is helpful, and I would appreciate any comments that shed light on this possible link between radiation, reduction of tumor load and activation of immune response with Yervoy.

                                        zaccarin
                                        Participant

                                          My husband had a significant tumor burden in his lungs prior to beginning Yervoy. I believe that reducing the tumor burden with radiation might be considered a good first step prior to the initiation of Yervoy because that drug, which stimulates the immunity in 15-20%, might lead to an increase in tumor size, a situation to be avoided — when tumors are already in a dangerous location. Additionally, I have been told that radiation, which  results in broken pieces of melanoma, can stimulate a greater immune response from Yervoy. The eosinophils attack these broken pieces of melanoma, and there could be a significant immune response. I believe that now there are clinical trials with radiation and Yervoy.

                                          I hope this information is helpful, and I would appreciate any comments that shed light on this possible link between radiation, reduction of tumor load and activation of immune response with Yervoy.

                                          zaccarin
                                          Participant

                                            My husband had a significant tumor burden in his lungs prior to beginning Yervoy. I believe that reducing the tumor burden with radiation might be considered a good first step prior to the initiation of Yervoy because that drug, which stimulates the immunity in 15-20%, might lead to an increase in tumor size, a situation to be avoided — when tumors are already in a dangerous location. Additionally, I have been told that radiation, which  results in broken pieces of melanoma, can stimulate a greater immune response from Yervoy. The eosinophils attack these broken pieces of melanoma, and there could be a significant immune response. I believe that now there are clinical trials with radiation and Yervoy.

                                            I hope this information is helpful, and I would appreciate any comments that shed light on this possible link between radiation, reduction of tumor load and activation of immune response with Yervoy.

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