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Here we go again ……

Forums General Melanoma Community Here we go again ……

  • Post
    lhaley
    Participant

      2 months ago I had surgery for 2 different sites.  Today I had PET/CT scan.  This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm.   Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions. 

      2 months ago I had surgery for 2 different sites.  Today I had PET/CT scan.  This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm.   Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions. 

      We looked back at previous scans and in retrospect it could be seen as a spec in Sept. of 09. I guess the good news is that it's slow growing.  Meanwhile I got back the testing on the tumor that was removed and I am B-raf positive.

      My history is a bit unique. For those of you who don't know I was originally diagonsed in 79' with my first recurrance in 06. Since then I've had 1 recurrance in breast, 2 in bladder, 1 in lymph node under clavicle, 1 in lymph node in arm and now this. Because my immune system has slowed everything down, my mel specialist is leaning towards immunitherapy at this point to give my system a boost.  I guess dicisions are being made in 3 months.

      Sure wish I could have been happy dancing tonight.

      Linda

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    • Replies
        djpayn
        Participant

          Linda,

          im so sorry that you have found new tumors. please let me know if there is anything you need.

          Stay Strong my friend!

           

          Dawna

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          djpayn
          Participant

            Linda,

            im so sorry that you have found new tumors. please let me know if there is anything you need.

            Stay Strong my friend!

             

            Dawna

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            akls
            Participant

              Linda,

               

              I'm sorry you didn't get the news you wanted with these scans.  You are one strong lady and I know you will come up with a great treatment plan.  I would say that the fact that these nodules are very slow growing is good news.  You are in my prayers.

               

              Amy S. in Michigan

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              akls
              Participant

                Linda,

                 

                I'm sorry you didn't get the news you wanted with these scans.  You are one strong lady and I know you will come up with a great treatment plan.  I would say that the fact that these nodules are very slow growing is good news.  You are in my prayers.

                 

                Amy S. in Michigan

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                Sherron
                Participant

                  Linda – I am so sorry….Keep fighting. and keep positive.  Jim was the ultimate optomist…..He still believed up to the last  day, he might get better….Can/t write much now….too hard…

                   

                  Talke Care,

                   

                  Sherron, wife to Jim FOREVER

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                  Sherron
                  Participant

                    Linda – I am so sorry….Keep fighting. and keep positive.  Jim was the ultimate optomist…..He still believed up to the last  day, he might get better….Can/t write much now….too hard…

                     

                    Talke Care,

                     

                    Sherron, wife to Jim FOREVER

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                    vivian
                    Participant

                      Linda,

                      I was hoping to hear you had good news, and I am so sorry that's not the case with your scans.  I am sending lots of Delaware positive energy and thoughts down to your South Carolina immune system. 

                      Fondly,

                      Vivian 

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                      vivian
                      Participant

                        Linda,

                        I was hoping to hear you had good news, and I am so sorry that's not the case with your scans.  I am sending lots of Delaware positive energy and thoughts down to your South Carolina immune system. 

                        Fondly,

                        Vivian 

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                        King
                        Participant

                          Hi Linda,

                           

                          Sorry to hear these scan results.  Waiting 3 months will be tough I would think.  Being BRAF positive will give you more good options.  One day at a time.  Focus on the bit of good news for now…slow growing.

                           

                          Stay Strong

                          King

                          Stage IV  7/05 Liver mets

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                          King
                          Participant

                            Hi Linda,

                             

                            Sorry to hear these scan results.  Waiting 3 months will be tough I would think.  Being BRAF positive will give you more good options.  One day at a time.  Focus on the bit of good news for now…slow growing.

                             

                            Stay Strong

                            King

                            Stage IV  7/05 Liver mets

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                            Dear Linda,

                            I am so sorry to hear your news.  Growing slowly is good though; giving you time to make your plan instead fearing that time is your enemy.  Surgery may also be a good option.  My lung tumors were removed without incidence via VATS.  When you say immunotherapy do you mean Ipi? 

                            I will keep in my prayers. 

                            Blessings to you,

                            Shelly

                             

                             

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                            Dear Linda,

                            I am so sorry to hear your news.  Growing slowly is good though; giving you time to make your plan instead fearing that time is your enemy.  Surgery may also be a good option.  My lung tumors were removed without incidence via VATS.  When you say immunotherapy do you mean Ipi? 

                            I will keep in my prayers. 

                            Blessings to you,

                            Shelly

                             

                             

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                              lhaley
                              Participant

                                Shelly,

                                Both IL2 and Ipi were discussed as possibilities. My Dr. thought that Ipi would be FDA approved in March. He said that if not he went through the compassionate care process.  I know that VATs is a possibility (although this was not brought up). He's thinking that tumors are appearing now at a regular pace in different places in the body. It's time to try and stop the randomness. He did say that if this is still the only spot in 3 months it would be discussed.  Tell you the truth, I'm not sure at what point of the discussion but both my husband and I lost track of the conversation.  I know he's taking my case to the tumor board again (I think this is the 5th or 6th time) but not sure if it's next week or waiting till my next scans. Stress will do that to you!

                                When your tumor was removed from the lungs were you then NED?

                                Linda

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                                lhaley
                                Participant

                                  Shelly,

                                  Both IL2 and Ipi were discussed as possibilities. My Dr. thought that Ipi would be FDA approved in March. He said that if not he went through the compassionate care process.  I know that VATs is a possibility (although this was not brought up). He's thinking that tumors are appearing now at a regular pace in different places in the body. It's time to try and stop the randomness. He did say that if this is still the only spot in 3 months it would be discussed.  Tell you the truth, I'm not sure at what point of the discussion but both my husband and I lost track of the conversation.  I know he's taking my case to the tumor board again (I think this is the 5th or 6th time) but not sure if it's next week or waiting till my next scans. Stress will do that to you!

                                  When your tumor was removed from the lungs were you then NED?

                                  Linda

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                                jag
                                Participant

                                  Linda, any idea of the scanner resolution?(if it is 1cm slices, they may have missed it last scan) I had my left lung removed the whole time I had what could have been a met in my right lung, it just didn't change for so long that they didn't believe it was melanoma.  Do you know the SUV score?  Not trying to get your hopes up, just hoping they are actually benign.  

                                  Best

                                  John

                                  If they are real, I would definitely look into surgical options with a repeat scan soon.

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                                  jag
                                  Participant

                                    Linda, any idea of the scanner resolution?(if it is 1cm slices, they may have missed it last scan) I had my left lung removed the whole time I had what could have been a met in my right lung, it just didn't change for so long that they didn't believe it was melanoma.  Do you know the SUV score?  Not trying to get your hopes up, just hoping they are actually benign.  

                                    Best

                                    John

                                    If they are real, I would definitely look into surgical options with a repeat scan soon.

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                                      lhaley
                                      Participant

                                        John,

                                        With moving I've had my scans done this past year at 3 different places!  Wilm. NC did not have you drink contrast, Greenville Sc had me drink a thin contrast, now I'm having them done in Charlotte with my melanoma specialist. They had me drink a thick contrast and the protocal was different.  I'll have to call and ask the resolutions.  It was spotted this time and they only saw it when they went backwards on the scans.  Thanks for the idea!!

                                        I am also going to e-mail the Dr. and try to negotiate a 2 month scan or possibly an mri instead.

                                        Linda

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                                        lhaley
                                        Participant

                                          John,

                                          With moving I've had my scans done this past year at 3 different places!  Wilm. NC did not have you drink contrast, Greenville Sc had me drink a thin contrast, now I'm having them done in Charlotte with my melanoma specialist. They had me drink a thick contrast and the protocal was different.  I'll have to call and ask the resolutions.  It was spotted this time and they only saw it when they went backwards on the scans.  Thanks for the idea!!

                                          I am also going to e-mail the Dr. and try to negotiate a 2 month scan or possibly an mri instead.

                                          Linda

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                                        ValinMtl
                                        Participant

                                          Hi Linda, I read this earlier..didn't know what to say…so I am back reading it again…so sad for you.  But you're a fighter and you can do this again…we're in your court and praying for good decisions to be made by doctors.  Val, Stage IV, currently on compassionate ipi.

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                                          ValinMtl
                                          Participant

                                            Hi Linda, I read this earlier..didn't know what to say…so I am back reading it again…so sad for you.  But you're a fighter and you can do this again…we're in your court and praying for good decisions to be made by doctors.  Val, Stage IV, currently on compassionate ipi.

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                                            dian in spokane
                                            Participant

                                              You are my hero!

                                              Maybe in three months it will have SHRUNK! I can't tell you how many times my lungs have shown something that someone thought was likely melanoma (going clear back to 2003) and then changed their minds. Heck, I've even had some of those 'nodules' that have continued to look worse on one or two scans before being  almost gone on the next.

                                              I hope that for you, that they will be 'almost gone' on the next scan!

                                              good luck to you linda.

                                              dian

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                                              dian in spokane
                                              Participant

                                                You are my hero!

                                                Maybe in three months it will have SHRUNK! I can't tell you how many times my lungs have shown something that someone thought was likely melanoma (going clear back to 2003) and then changed their minds. Heck, I've even had some of those 'nodules' that have continued to look worse on one or two scans before being  almost gone on the next.

                                                I hope that for you, that they will be 'almost gone' on the next scan!

                                                good luck to you linda.

                                                dian

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                                                  lhaley
                                                  Participant

                                                    Dian,

                                                    Thanks for the encouragement! I do remember when they made you wait for the next scan. I do wish that the Dr. hadn't been able to see it back on a scan over a year ago. But, that would mean that it is slow growing if it is indeed mel.  I read your post to my husband (he will not read the board) and it made him smile. First one I've seen since the results. I told him how similar our histories have been.

                                                    Linda

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                                                    lhaley
                                                    Participant

                                                      Dian,

                                                      Thanks for the encouragement! I do remember when they made you wait for the next scan. I do wish that the Dr. hadn't been able to see it back on a scan over a year ago. But, that would mean that it is slow growing if it is indeed mel.  I read your post to my husband (he will not read the board) and it made him smile. First one I've seen since the results. I told him how similar our histories have been.

                                                      Linda

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                                                      Nancy
                                                      Participant

                                                        Hi Linda, 

                                                        Keeping you in prayer each day…

                                                        Nancy

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                                                        Nancy
                                                        Participant

                                                          Hi Linda, 

                                                          Keeping you in prayer each day…

                                                          Nancy

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                                                        JuleFL
                                                        Participant
                                                          Best wishes, Linda. I hope the immunotherapy will get rid of it once and for all!
                                                          Jule

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                                                          JuleFL
                                                          Participant
                                                            Best wishes, Linda. I hope the immunotherapy will get rid of it once and for all!
                                                            Jule

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                                                            Rebecca and Bob
                                                            Participant

                                                              Hi Linda,

                                                               

                                                              I"m with John on pushing your scans up to two months. My husband gets scans every two months and I feel better if they did have to do something they will be on top of it. I'm sorry you got this news but hope you feel you have good doctors on your team.

                                                               

                                                              Rebecca

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                                                              Rebecca and Bob
                                                              Participant

                                                                Hi Linda,

                                                                 

                                                                I"m with John on pushing your scans up to two months. My husband gets scans every two months and I feel better if they did have to do something they will be on top of it. I'm sorry you got this news but hope you feel you have good doctors on your team.

                                                                 

                                                                Rebecca

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