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Husband stage IV

Forums Cutaneous Melanoma Community Husband stage IV

  • Post
    jenniperry
    Participant
      Husband taken off trial and off chemo. It worked to reduce all tumors and remove the small lung tumors and all subcutaneous are gone. Still has 2 in the liver, one 3.1cm and one 1.8cm. Dr. said we will wait until January and re-scan because he is no longer a candidate for any trial nor chemo. He said waiting 3 months was within guidelines and since they haven’t grown or shrunk in two months he feels safe doing so. I feel like I’m going nuts.

      Husband taken off trial and off chemo. It worked to reduce all tumors and remove the small lung tumors and all subcutaneous are gone. Still has 2 in the liver, one 3.1cm and one 1.8cm. Dr. said we will wait until January and re-scan because he is no longer a candidate for any trial nor chemo. He said waiting 3 months was within guidelines and since they haven’t grown or shrunk in two months he feels safe doing so. I feel like I’m going nuts.

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        Linda/Kentucky
        Participant

          What type chemo and trial did he have? sounds like it must have been fairly successful…. Good luck during the next 3 months I know this will be hard.  At least you may be able to enjoy the holidays~~~

           

          Linda/Kentucky

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            jenniperry
            Participant
              It was pretty successful, Decitabane infusions with Temodar pills. It just seems crazy to sit now that we got down to two tumors and see what happens in three months. I know that chemo is not an option for him right now, so that is what I’m trying to do, just wait and enjoy every day he feels good. Thanks

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              jenniperry
              Participant
                It was pretty successful, Decitabane infusions with Temodar pills. It just seems crazy to sit now that we got down to two tumors and see what happens in three months. I know that chemo is not an option for him right now, so that is what I’m trying to do, just wait and enjoy every day he feels good. Thanks

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              Linda/Kentucky
              Participant

                What type chemo and trial did he have? sounds like it must have been fairly successful…. Good luck during the next 3 months I know this will be hard.  At least you may be able to enjoy the holidays~~~

                 

                Linda/Kentucky

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                jag
                Participant

                  I would strongly reccomend you get a 2nd opinion.  I am of the same mindset as you in terms of reducing tumor burden as much as possible until you are finally disease free.  I would ask about the compassionate use ipilimumab trial and see if he is elegible for that.

                  Best

                  John 

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                  jag
                  Participant

                    I would strongly reccomend you get a 2nd opinion.  I am of the same mindset as you in terms of reducing tumor burden as much as possible until you are finally disease free.  I would ask about the compassionate use ipilimumab trial and see if he is elegible for that.

                    Best

                    John 

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                    BethA in VA
                    Participant

                      Good luck.  Have a good holiday season and then face whatever you have to.  Enjoy each and every day.  Beth

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                      BethA in VA
                      Participant

                        Good luck.  Have a good holiday season and then face whatever you have to.  Enjoy each and every day.  Beth

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                        Rocklove
                        Participant

                          Jennyperry what about trials available @ other cancer centers? Hopefully the doctor is right. 

                          But that is a pressure cooker wait.

                          You need to be prepared if the tumors become active in the January scan, what is the plan of action. If this doctor does not have one, I encourage you to reach out and find a treatment trial available.

                          Wishing you and family strength, courage and wisdom.

                          Rocky (Stage IV Liver Mets)

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                          Rocklove
                          Participant

                            Jennyperry what about trials available @ other cancer centers? Hopefully the doctor is right. 

                            But that is a pressure cooker wait.

                            You need to be prepared if the tumors become active in the January scan, what is the plan of action. If this doctor does not have one, I encourage you to reach out and find a treatment trial available.

                            Wishing you and family strength, courage and wisdom.

                            Rocky (Stage IV Liver Mets)

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                              jenniperry
                              Participant

                                They called from the Hillman cancer center today and scheduled his scans for two weeks earlier at Jan 3rd.  Still 2 months away though.  He isn't elligible for any trial right now due to his bloodwork and that's why chemo is out as well.  Just really feeling terrified that this nightmare that we have already been through this year has just started.  Trying to live in the moment when I'm with him. 

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                                jenniperry
                                Participant

                                  They called from the Hillman cancer center today and scheduled his scans for two weeks earlier at Jan 3rd.  Still 2 months away though.  He isn't elligible for any trial right now due to his bloodwork and that's why chemo is out as well.  Just really feeling terrified that this nightmare that we have already been through this year has just started.  Trying to live in the moment when I'm with him. 

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                                  EricNJill
                                  Participant

                                    I understand completely how you feel.  It's terrifying waiting in between treatments just not doing anything.  We also go to Hillman and love Dr. Kirkwood and his staff.  We were 1 week away from beginning a BRAF trail in Tennessee because Hillman didn't have anymore trials for us and we found out Eric's cancer spread to the brain.  Now we have to wait for 2 months of tumor free brain scans and that's terrifying.

                                    Good luck to you and your husband.  We will be praying for you.

                                    JillNEric in OH

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                                    EricNJill
                                    Participant

                                      I understand completely how you feel.  It's terrifying waiting in between treatments just not doing anything.  We also go to Hillman and love Dr. Kirkwood and his staff.  We were 1 week away from beginning a BRAF trail in Tennessee because Hillman didn't have anymore trials for us and we found out Eric's cancer spread to the brain.  Now we have to wait for 2 months of tumor free brain scans and that's terrifying.

                                      Good luck to you and your husband.  We will be praying for you.

                                      JillNEric in OH

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                                      jenniperry
                                      Participant
                                        I’m so sorry for you, it’s horrible waiting. I spoke with Laura, Moschos’s PA, and we are doing a biopsy of his new spots. He started getting these spots that look kind of like chicken pox or mosquito bites. I have a friend who is a surgeon locally so he is going to do the biopsy tomorrow for us. We also found a new subcutaneous spot this morning so it looks like we may not even get to wait. Now I wish we were just waiting and nothing new going on. I hate this disease. I’m so afraid it’s going to take my husband from us. We will be praying for you and Eric.

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                                        jenniperry
                                        Participant
                                          I’m so sorry for you, it’s horrible waiting. I spoke with Laura, Moschos’s PA, and we are doing a biopsy of his new spots. He started getting these spots that look kind of like chicken pox or mosquito bites. I have a friend who is a surgeon locally so he is going to do the biopsy tomorrow for us. We also found a new subcutaneous spot this morning so it looks like we may not even get to wait. Now I wish we were just waiting and nothing new going on. I hate this disease. I’m so afraid it’s going to take my husband from us. We will be praying for you and Eric.

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