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VATS surgery is done! Right lung is clear!
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VATS surgery is done! Right lung is clear!

› Forums › General Melanoma Community › VATS surgery is done! Right lung is clear!

  • Post
    • January 20, 2015 at 6:22 pm
    Maureen038
    Participant

      My husband compled his second VATS surgery this morning. His first VATS surgery was in October 2013. They removed a 4 cm nodule and a very tiny one. The right lung is cancer free for now and hopefully ever. He is at NIH and they are taking the tissue and making TIL cells to freeze in case he needs them.

      There are a few very tiny nodules in the left lung and hopefully when he restarts Opdivo they will vanish!! We are feeling cautiously optimistic!! After so many ups and downs, it feels great to be in this place!! Best wishes to everyone!!

      Maureen

    Viewing 11 reply threads
    • Replies
        • January 20, 2015 at 8:00 pm
        BrianP
        Participant

          Awesome news Maureen. Happy for you two. Where are you doing the Opdivo?

          Brian

          • January 20, 2015 at 8:00 pm
          BrianP
          Participant

            Awesome news Maureen. Happy for you two. Where are you doing the Opdivo?

            Brian

              • January 20, 2015 at 11:31 pm
              Maureen038
              Participant

                Thanks Brian! He will hopefully be able to have the Opdivo in Md with his oncologist. We are thrilled about the right lung being clear, but we are not sure yet if he can restart the Opdivo after four weeks because there is no measurable disease now. If anyone knows the answer to this, that would be great. Right now, we are just enjoying his status and praying it stays this way. I hope things are still well with you Brian!

                Maureen

                • January 20, 2015 at 11:31 pm
                Maureen038
                Participant

                  Thanks Brian! He will hopefully be able to have the Opdivo in Md with his oncologist. We are thrilled about the right lung being clear, but we are not sure yet if he can restart the Opdivo after four weeks because there is no measurable disease now. If anyone knows the answer to this, that would be great. Right now, we are just enjoying his status and praying it stays this way. I hope things are still well with you Brian!

                  Maureen

                  • January 20, 2015 at 11:31 pm
                  Maureen038
                  Participant

                    Thanks Brian! He will hopefully be able to have the Opdivo in Md with his oncologist. We are thrilled about the right lung being clear, but we are not sure yet if he can restart the Opdivo after four weeks because there is no measurable disease now. If anyone knows the answer to this, that would be great. Right now, we are just enjoying his status and praying it stays this way. I hope things are still well with you Brian!

                    Maureen

                  • January 20, 2015 at 8:00 pm
                  BrianP
                  Participant

                    Awesome news Maureen. Happy for you two. Where are you doing the Opdivo?

                    Brian

                    • January 20, 2015 at 8:20 pm
                    JoshF
                    Participant

                      This is great news….and I'm praying it's only good news to come for years!!!

                      Josh

                        • January 20, 2015 at 11:34 pm
                        Maureen038
                        Participant

                          Thanks Josh!! I very much appreciate that! 

                          Maureen

                          • January 20, 2015 at 11:34 pm
                          Maureen038
                          Participant

                            Thanks Josh!! I very much appreciate that! 

                            Maureen

                            • January 20, 2015 at 11:34 pm
                            Maureen038
                            Participant

                              Thanks Josh!! I very much appreciate that! 

                              Maureen

                            • January 20, 2015 at 8:20 pm
                            JoshF
                            Participant

                              This is great news….and I'm praying it's only good news to come for years!!!

                              Josh

                              • January 20, 2015 at 8:20 pm
                              JoshF
                              Participant

                                This is great news….and I'm praying it's only good news to come for years!!!

                                Josh

                                • January 20, 2015 at 9:44 pm
                                Mat
                                Participant

                                  Maureen, congratulations.  Interesting to hear that the NIH was willing to grow and freeze your husband's cells knowing that he is going back to PD-1.  

                                    • January 20, 2015 at 10:51 pm
                                    Cooper
                                    Participant

                                      Wow, you've been through so much with your husband.  But didn't he do the TIL/ACT already and have tumors come back?  Will they do it again?

                                      • January 20, 2015 at 10:51 pm
                                      Cooper
                                      Participant

                                        Wow, you've been through so much with your husband.  But didn't he do the TIL/ACT already and have tumors come back?  Will they do it again?

                                        • January 20, 2015 at 10:51 pm
                                        Cooper
                                        Participant

                                          Wow, you've been through so much with your husband.  But didn't he do the TIL/ACT already and have tumors come back?  Will they do it again?

                                          • January 21, 2015 at 12:16 am
                                          Maureen038
                                          Participant

                                            Hopefully, my husband will never have the TIL therapy again, But it's an important back-up plan for him just in case.  Since he has had the TIL therapy NOTHING new has appeared. The only big concern was the lymph nodes were getting bigger during theTIL therapy and the Ipi/nivolumbab trial, but the nodes are all stable or have shrunk.

                                            Maureen

                                            • January 21, 2015 at 12:16 am
                                            Maureen038
                                            Participant

                                              Hopefully, my husband will never have the TIL therapy again, But it's an important back-up plan for him just in case.  Since he has had the TIL therapy NOTHING new has appeared. The only big concern was the lymph nodes were getting bigger during theTIL therapy and the Ipi/nivolumbab trial, but the nodes are all stable or have shrunk.

                                              Maureen

                                              • January 21, 2015 at 12:16 am
                                              Maureen038
                                              Participant

                                                Hopefully, my husband will never have the TIL therapy again, But it's an important back-up plan for him just in case.  Since he has had the TIL therapy NOTHING new has appeared. The only big concern was the lymph nodes were getting bigger during theTIL therapy and the Ipi/nivolumbab trial, but the nodes are all stable or have shrunk.

                                                Maureen

                                                • January 21, 2015 at 12:11 am
                                                Maureen038
                                                Participant

                                                  Thanks Mat! I think the whole process has changed since we were there in the summer of 2014. My husband's roommate is having surgery tomorrow for the TIL therapy and I believe he will be back in 7-10 days to start the trial. It use to be at least three weeks to grow the cells for  TIL therapy. The roommate was on the yervoy/nivolumbab trial and it hadn't worked. I hope this works for him.

                                                  There will be a PBS special on cancer the last days of March and the beginning of April. One part is on Dr. Rosenberg's work.

                                                  Maureen

                                                  • January 21, 2015 at 12:11 am
                                                  Maureen038
                                                  Participant

                                                    Thanks Mat! I think the whole process has changed since we were there in the summer of 2014. My husband's roommate is having surgery tomorrow for the TIL therapy and I believe he will be back in 7-10 days to start the trial. It use to be at least three weeks to grow the cells for  TIL therapy. The roommate was on the yervoy/nivolumbab trial and it hadn't worked. I hope this works for him.

                                                    There will be a PBS special on cancer the last days of March and the beginning of April. One part is on Dr. Rosenberg's work.

                                                    Maureen

                                                    • January 21, 2015 at 12:11 am
                                                    Maureen038
                                                    Participant

                                                      Thanks Mat! I think the whole process has changed since we were there in the summer of 2014. My husband's roommate is having surgery tomorrow for the TIL therapy and I believe he will be back in 7-10 days to start the trial. It use to be at least three weeks to grow the cells for  TIL therapy. The roommate was on the yervoy/nivolumbab trial and it hadn't worked. I hope this works for him.

                                                      There will be a PBS special on cancer the last days of March and the beginning of April. One part is on Dr. Rosenberg's work.

                                                      Maureen

                                                      • January 21, 2015 at 3:09 am
                                                      JoshF
                                                      Participant

                                                        How do you qualify for TIL…is NIH only place doing it? The little bit I've read about it is that it can be real effective. What qualifies you fo it?

                                                        Josh

                                                        • January 21, 2015 at 3:09 am
                                                        JoshF
                                                        Participant

                                                          How do you qualify for TIL…is NIH only place doing it? The little bit I've read about it is that it can be real effective. What qualifies you fo it?

                                                          Josh

                                                          • January 21, 2015 at 3:09 am
                                                          JoshF
                                                          Participant

                                                            How do you qualify for TIL…is NIH only place doing it? The little bit I've read about it is that it can be real effective. What qualifies you fo it?

                                                            Josh

                                                            • January 21, 2015 at 10:53 am
                                                            Mat
                                                            Participant

                                                              Josh, the NIH is the leading institution for TIL, though they are known to be selective.  That said, younger and otherwise healthy patients should qualify.  You need to have a resectable tumor that they can use to grow cells.  I think that it needs to be in the range of 2 cm or greater.  TIL is also available at MDA, Moffitt and Seattle, but they have less experience with the treatment.  Much like with other treatments, there are both home runs and sad stories.

                                                              • January 21, 2015 at 10:53 am
                                                              Mat
                                                              Participant

                                                                Josh, the NIH is the leading institution for TIL, though they are known to be selective.  That said, younger and otherwise healthy patients should qualify.  You need to have a resectable tumor that they can use to grow cells.  I think that it needs to be in the range of 2 cm or greater.  TIL is also available at MDA, Moffitt and Seattle, but they have less experience with the treatment.  Much like with other treatments, there are both home runs and sad stories.

                                                                • January 21, 2015 at 10:53 am
                                                                Mat
                                                                Participant

                                                                  Josh, the NIH is the leading institution for TIL, though they are known to be selective.  That said, younger and otherwise healthy patients should qualify.  You need to have a resectable tumor that they can use to grow cells.  I think that it needs to be in the range of 2 cm or greater.  TIL is also available at MDA, Moffitt and Seattle, but they have less experience with the treatment.  Much like with other treatments, there are both home runs and sad stories.

                                                                  • January 21, 2015 at 2:26 pm
                                                                  Maureen038
                                                                  Participant

                                                                    Josh,

                                                                       I would highly recommend NIH!! If you go on their website, look for clinical trials just at NIH for metastatic melanoma. You can personally write Dr. Rosenberg at [email protected] or Linda Williams at [email protected] or call 1-866-820-4505. I know you can't have more than three brain metastasis less than 1 cm. Also, they need a respectable lesion. My husband skin nodule was just 1 cm.

                                                                    My husbands surgery was yesterday. Everyone there was so kind and professional!! Twice, the head nurse called me during the surgery to let me know that they started and when they were finished. We have never been treated as well anywhere else and the level of caution and safety is very high! I wish you the very best Josh!

                                                                    Maureen

                                                                    • January 21, 2015 at 2:26 pm
                                                                    Maureen038
                                                                    Participant

                                                                      Josh,

                                                                         I would highly recommend NIH!! If you go on their website, look for clinical trials just at NIH for metastatic melanoma. You can personally write Dr. Rosenberg at [email protected] or Linda Williams at [email protected] or call 1-866-820-4505. I know you can't have more than three brain metastasis less than 1 cm. Also, they need a respectable lesion. My husband skin nodule was just 1 cm.

                                                                      My husbands surgery was yesterday. Everyone there was so kind and professional!! Twice, the head nurse called me during the surgery to let me know that they started and when they were finished. We have never been treated as well anywhere else and the level of caution and safety is very high! I wish you the very best Josh!

                                                                      Maureen

                                                                      • January 21, 2015 at 2:26 pm
                                                                      Maureen038
                                                                      Participant

                                                                        Josh,

                                                                           I would highly recommend NIH!! If you go on their website, look for clinical trials just at NIH for metastatic melanoma. You can personally write Dr. Rosenberg at [email protected] or Linda Williams at [email protected] or call 1-866-820-4505. I know you can't have more than three brain metastasis less than 1 cm. Also, they need a respectable lesion. My husband skin nodule was just 1 cm.

                                                                        My husbands surgery was yesterday. Everyone there was so kind and professional!! Twice, the head nurse called me during the surgery to let me know that they started and when they were finished. We have never been treated as well anywhere else and the level of caution and safety is very high! I wish you the very best Josh!

                                                                        Maureen

                                                                      • January 20, 2015 at 9:44 pm
                                                                      Mat
                                                                      Participant

                                                                        Maureen, congratulations.  Interesting to hear that the NIH was willing to grow and freeze your husband's cells knowing that he is going back to PD-1.  

                                                                        • January 20, 2015 at 9:44 pm
                                                                        Mat
                                                                        Participant

                                                                          Maureen, congratulations.  Interesting to hear that the NIH was willing to grow and freeze your husband's cells knowing that he is going back to PD-1.  

                                                                          • January 21, 2015 at 1:27 pm
                                                                          Bubbles
                                                                          Participant

                                                                            Congrats!  Hope this marks a turn-around that you and your husband certainly deserve!!!  c

                                                                            • January 21, 2015 at 1:27 pm
                                                                            Bubbles
                                                                            Participant

                                                                              Congrats!  Hope this marks a turn-around that you and your husband certainly deserve!!!  c

                                                                              • January 21, 2015 at 1:27 pm
                                                                              Bubbles
                                                                              Participant

                                                                                Congrats!  Hope this marks a turn-around that you and your husband certainly deserve!!!  c

                                                                                  • January 21, 2015 at 2:32 pm
                                                                                  Maureen038
                                                                                  Participant

                                                                                    Thank you so much Celeste!! Thank you too for your blog post on my complaint about patients rights for clinical trials!! You have done so much to inform people and I'm tremendously grateful to you and many others!!

                                                                                    By the way, here's GREAT NEWS!!!! My husbands 4 cm tumour that kept growing since last spring with a very high SUV of 19.5 was MOSTLY DEAD, but there are SO many lymphocytes that they are having no trouble making TIL cells.

                                                                                    WOW!!!

                                                                                    Maureen

                                                                                    • January 21, 2015 at 6:33 pm
                                                                                    Brendan
                                                                                    Participant

                                                                                      Great news!!!!  Glad to hear it.  

                                                                                      Good luck to you both.

                                                                                      Brendan

                                                                                      • January 21, 2015 at 6:33 pm
                                                                                      Brendan
                                                                                      Participant

                                                                                        Great news!!!!  Glad to hear it.  

                                                                                        Good luck to you both.

                                                                                        Brendan

                                                                                        • January 21, 2015 at 6:33 pm
                                                                                        Brendan
                                                                                        Participant

                                                                                          Great news!!!!  Glad to hear it.  

                                                                                          Good luck to you both.

                                                                                          Brendan

                                                                                          • January 21, 2015 at 7:46 pm
                                                                                          Bubbles
                                                                                          Participant

                                                                                            Maureen,

                                                                                            That is GREAT news!!!!  I am so happy!!!! c

                                                                                            • January 21, 2015 at 11:40 pm
                                                                                            Maureen038
                                                                                            Participant

                                                                                              Thank you Brendan and Celeste!!! Even though we feel it's such fantastic news, we also feel guilty too. It sucks that all these news drugs don't work on everyone. I remember you wrote about survivor's guilt on your blog Celeste. It's definitely a day of mixed emotions, but mostly joy. 

                                                                                              Maureen 

                                                                                              • January 21, 2015 at 11:40 pm
                                                                                              Maureen038
                                                                                              Participant

                                                                                                Thank you Brendan and Celeste!!! Even though we feel it's such fantastic news, we also feel guilty too. It sucks that all these news drugs don't work on everyone. I remember you wrote about survivor's guilt on your blog Celeste. It's definitely a day of mixed emotions, but mostly joy. 

                                                                                                Maureen 

                                                                                                • January 21, 2015 at 11:40 pm
                                                                                                Maureen038
                                                                                                Participant

                                                                                                  Thank you Brendan and Celeste!!! Even though we feel it's such fantastic news, we also feel guilty too. It sucks that all these news drugs don't work on everyone. I remember you wrote about survivor's guilt on your blog Celeste. It's definitely a day of mixed emotions, but mostly joy. 

                                                                                                  Maureen 

                                                                                                  • January 21, 2015 at 7:46 pm
                                                                                                  Bubbles
                                                                                                  Participant

                                                                                                    Maureen,

                                                                                                    That is GREAT news!!!!  I am so happy!!!! c

                                                                                                    • January 21, 2015 at 7:46 pm
                                                                                                    Bubbles
                                                                                                    Participant

                                                                                                      Maureen,

                                                                                                      That is GREAT news!!!!  I am so happy!!!! c

                                                                                                      • January 21, 2015 at 2:32 pm
                                                                                                      Maureen038
                                                                                                      Participant

                                                                                                        Thank you so much Celeste!! Thank you too for your blog post on my complaint about patients rights for clinical trials!! You have done so much to inform people and I'm tremendously grateful to you and many others!!

                                                                                                        By the way, here's GREAT NEWS!!!! My husbands 4 cm tumour that kept growing since last spring with a very high SUV of 19.5 was MOSTLY DEAD, but there are SO many lymphocytes that they are having no trouble making TIL cells.

                                                                                                        WOW!!!

                                                                                                        Maureen

                                                                                                        • January 21, 2015 at 2:32 pm
                                                                                                        Maureen038
                                                                                                        Participant

                                                                                                          Thank you so much Celeste!! Thank you too for your blog post on my complaint about patients rights for clinical trials!! You have done so much to inform people and I'm tremendously grateful to you and many others!!

                                                                                                          By the way, here's GREAT NEWS!!!! My husbands 4 cm tumour that kept growing since last spring with a very high SUV of 19.5 was MOSTLY DEAD, but there are SO many lymphocytes that they are having no trouble making TIL cells.

                                                                                                          WOW!!!

                                                                                                          Maureen

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