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update on scan result

Forums General Melanoma Community update on scan result

  • Post
    dfeng
    Participant

      Well, bad news. It grows over the limit that we set.

      Do not have many options left and, really do not want to disencourage all friends.

      But the reality is the reality I have to face. Let's see how far I can push.

      Best wishes,

    Viewing 47 reply threads
    • Replies
        Bubbles
        Participant

          Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste

          Bubbles
          Participant

            Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste

              Bubbles
              Participant

                PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste

                Bubbles
                Participant

                  PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste

                  Bubbles
                  Participant

                    PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste

                  Bubbles
                  Participant

                    Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste

                    BrianP
                    Participant

                      I'm sorry dfeng.  I can't remember your specifics but I was curious if you've talked to MSK.  It sounds like they are doing some pretty cutting edge stuff with genetic analysis and personalized treatment.  I wish you well. 

                      Brian

                       

                      BrianP
                      Participant

                        I'm sorry dfeng.  I can't remember your specifics but I was curious if you've talked to MSK.  It sounds like they are doing some pretty cutting edge stuff with genetic analysis and personalized treatment.  I wish you well. 

                        Brian

                         

                        BrianP
                        Participant

                          I'm sorry dfeng.  I can't remember your specifics but I was curious if you've talked to MSK.  It sounds like they are doing some pretty cutting edge stuff with genetic analysis and personalized treatment.  I wish you well. 

                          Brian

                           

                          _Paul_
                          Participant

                            I am truly sorry to hear this news D. Feng.

                            I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?

                            Wishing the best for you – Paul

                            _Paul_
                            Participant

                              I am truly sorry to hear this news D. Feng.

                              I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?

                              Wishing the best for you – Paul

                              _Paul_
                              Participant

                                I am truly sorry to hear this news D. Feng.

                                I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?

                                Wishing the best for you – Paul

                                Mat
                                Participant

                                  Sorry to hear.  I'll take a shot in the dark.  Having been to MSK and MDA, I believe your trial required HLA testing.  The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA.  (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL.  You can likely find the trial on MDA's website.  Again the investigator is Cassian Yee.

                                  Mat
                                  Participant

                                    Sorry to hear.  I'll take a shot in the dark.  Having been to MSK and MDA, I believe your trial required HLA testing.  The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA.  (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL.  You can likely find the trial on MDA's website.  Again the investigator is Cassian Yee.

                                    Mat
                                    Participant

                                      Sorry to hear.  I'll take a shot in the dark.  Having been to MSK and MDA, I believe your trial required HLA testing.  The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA.  (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL.  You can likely find the trial on MDA's website.  Again the investigator is Cassian Yee.

                                      Scooby123
                                      Participant

                                        So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.

                                        Remember keep pushing

                                        scooby❤️

                                        Scooby123
                                        Participant

                                          So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.

                                          Remember keep pushing

                                          scooby❤️

                                          Scooby123
                                          Participant

                                            So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.

                                            Remember keep pushing

                                            scooby❤️

                                            ed williams
                                            Participant

                                              Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed

                                              ed williams
                                              Participant

                                                Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed

                                                ed williams
                                                Participant

                                                  Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed

                                                    Squash
                                                    Participant

                                                      Thats interesting Ed.

                                                      I have had a lot of progression on Keytruda yet i always feel good after the infusion.

                                                      I wonder if i may be a late responder.

                                                      Anyway i am going on the combo shortly so we will see what happens then.

                                                      My only side effects were a bit of gastro but not real bad just constipation and gas.

                                                       

                                                       

                                                      Squash
                                                      Participant

                                                        Thats interesting Ed.

                                                        I have had a lot of progression on Keytruda yet i always feel good after the infusion.

                                                        I wonder if i may be a late responder.

                                                        Anyway i am going on the combo shortly so we will see what happens then.

                                                        My only side effects were a bit of gastro but not real bad just constipation and gas.

                                                         

                                                         

                                                        Squash
                                                        Participant

                                                          Thats interesting Ed.

                                                          I have had a lot of progression on Keytruda yet i always feel good after the infusion.

                                                          I wonder if i may be a late responder.

                                                          Anyway i am going on the combo shortly so we will see what happens then.

                                                          My only side effects were a bit of gastro but not real bad just constipation and gas.

                                                           

                                                           

                                                          eric w
                                                          Participant

                                                            oops…sorry see that is what you are doing….

                                                            eric w
                                                            Participant

                                                              oops…sorry see that is what you are doing….

                                                              eric w
                                                              Participant

                                                                oops…sorry see that is what you are doing….

                                                              jamieth29
                                                              Participant
                                                                Damn…whats it take for a guy to catch a break? Here is a link to trial at NIH

                                                                https://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2

                                                                jamieth29
                                                                Participant
                                                                  Damn…whats it take for a guy to catch a break? Here is a link to trial at NIH

                                                                  https://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2

                                                                  jamieth29
                                                                  Participant
                                                                    Damn…whats it take for a guy to catch a break? Here is a link to trial at NIH

                                                                    https://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2

                                                                    jenny22
                                                                    Participant

                                                                      D. Feng-

                                                                      Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".

                                                                      For now just sending good thoughts and hopes for some improvement,.

                                                                      keep us posted.

                                                                      best,

                                                                      jenny

                                                                      jenny22
                                                                      Participant

                                                                        D. Feng-

                                                                        Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".

                                                                        For now just sending good thoughts and hopes for some improvement,.

                                                                        keep us posted.

                                                                        best,

                                                                        jenny

                                                                        jenny22
                                                                        Participant

                                                                          D. Feng-

                                                                          Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".

                                                                          For now just sending good thoughts and hopes for some improvement,.

                                                                          keep us posted.

                                                                          best,

                                                                          jenny

                                                                          JuTMSY4
                                                                          Participant

                                                                            Really sorry to hear this.  Options are growing and it looks many have suggested quite a few.  I appreciate your outlook and I think you have the right spirit to handle this.

                                                                            -Justin

                                                                            JuTMSY4
                                                                            Participant

                                                                              Really sorry to hear this.  Options are growing and it looks many have suggested quite a few.  I appreciate your outlook and I think you have the right spirit to handle this.

                                                                              -Justin

                                                                              JuTMSY4
                                                                              Participant

                                                                                Really sorry to hear this.  Options are growing and it looks many have suggested quite a few.  I appreciate your outlook and I think you have the right spirit to handle this.

                                                                                -Justin

                                                                                Rita and Charles
                                                                                Participant

                                                                                  Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….

                                                                                  Rita

                                                                                  Rita and Charles
                                                                                  Participant

                                                                                    Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….

                                                                                    Rita

                                                                                    Rita and Charles
                                                                                    Participant

                                                                                      Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….

                                                                                      Rita

                                                                                        Maureen038
                                                                                        Participant

                                                                                          I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.

                                                                                          Maureen

                                                                                          Maureen038
                                                                                          Participant

                                                                                            I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.

                                                                                            Maureen

                                                                                            Maureen038
                                                                                            Participant

                                                                                              I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.

                                                                                              Maureen

                                                                                            Squash
                                                                                            Participant

                                                                                              You always have options left as long as you are breathing.

                                                                                              If mainstream medicine doesnt have anything why not try some altermative treatments.

                                                                                              Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc

                                                                                              I would try everything it doesnt really matter at this stage.

                                                                                              Good luck.

                                                                                               

                                                                                               

                                                                                               

                                                                                              Squash
                                                                                              Participant

                                                                                                You always have options left as long as you are breathing.

                                                                                                If mainstream medicine doesnt have anything why not try some altermative treatments.

                                                                                                Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc

                                                                                                I would try everything it doesnt really matter at this stage.

                                                                                                Good luck.

                                                                                                 

                                                                                                 

                                                                                                 

                                                                                                Squash
                                                                                                Participant

                                                                                                  You always have options left as long as you are breathing.

                                                                                                  If mainstream medicine doesnt have anything why not try some altermative treatments.

                                                                                                  Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc

                                                                                                  I would try everything it doesnt really matter at this stage.

                                                                                                  Good luck.

                                                                                                   

                                                                                                   

                                                                                                   

                                                                                                  Momofjake
                                                                                                  Participant

                                                                                                    Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!! 

                                                                                                    With love,

                                                                                                    Kerri–momofjake

                                                                                                    Momofjake
                                                                                                    Participant

                                                                                                      Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!! 

                                                                                                      With love,

                                                                                                      Kerri–momofjake

                                                                                                      Momofjake
                                                                                                      Participant

                                                                                                        Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!! 

                                                                                                        With love,

                                                                                                        Kerri–momofjake

                                                                                                        AshleyS
                                                                                                        Participant

                                                                                                          D. Feng,

                                                                                                          You are such a fighter. Keep going! Prayers that you find the treatment. 

                                                                                                          Ashley

                                                                                                          AshleyS
                                                                                                          Participant

                                                                                                            D. Feng,

                                                                                                            You are such a fighter. Keep going! Prayers that you find the treatment. 

                                                                                                            Ashley

                                                                                                            AshleyS
                                                                                                            Participant

                                                                                                              D. Feng,

                                                                                                              You are such a fighter. Keep going! Prayers that you find the treatment. 

                                                                                                              Ashley

                                                                                                              Rita and Charles
                                                                                                              Participant

                                                                                                                How are you Dfeng??

                                                                                                                Rita and Charles
                                                                                                                Participant

                                                                                                                  How are you Dfeng??

                                                                                                                  Rita and Charles
                                                                                                                  Participant

                                                                                                                    How are you Dfeng??

                                                                                                                    dfeng
                                                                                                                    Participant

                                                                                                                      Thank you all for kindly and warm help.

                                                                                                                      I am still waiting for next treatment to be settled, and will update you when some deceision is made.

                                                                                                                      I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.

                                                                                                                      Energy level dropps faster than I expected, weight is slowly but firmly going down too.

                                                                                                                      I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.

                                                                                                                      Best wishes to all!

                                                                                                                      dfeng
                                                                                                                      Participant

                                                                                                                        Thank you all for kindly and warm help.

                                                                                                                        I am still waiting for next treatment to be settled, and will update you when some deceision is made.

                                                                                                                        I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.

                                                                                                                        Energy level dropps faster than I expected, weight is slowly but firmly going down too.

                                                                                                                        I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.

                                                                                                                        Best wishes to all!

                                                                                                                        dfeng
                                                                                                                        Participant

                                                                                                                          Thank you all for kindly and warm help.

                                                                                                                          I am still waiting for next treatment to be settled, and will update you when some deceision is made.

                                                                                                                          I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.

                                                                                                                          Energy level dropps faster than I expected, weight is slowly but firmly going down too.

                                                                                                                          I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.

                                                                                                                          Best wishes to all!

                                                                                                                            Kare83
                                                                                                                            Participant

                                                                                                                              Thinking of you and hope there is something out there that will work for you! Keep strong!! x

                                                                                                                              Kare83
                                                                                                                              Participant

                                                                                                                                Thinking of you and hope there is something out there that will work for you! Keep strong!! x

                                                                                                                                Kare83
                                                                                                                                Participant

                                                                                                                                  Thinking of you and hope there is something out there that will work for you! Keep strong!! x

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