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Phil S

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      Phil S
      Participant

        Seriously, I get offended when I see these comments!  MDAnderson was doing a lot of biochemo three years ago, when my husband started that treatment there in November 2011. We trusted the medical care and direction of our medical experts there, and I truly, truly believe biochemo saved my husband's life, since it slowed down his aggressively growing melanoma at the time, and got us into a TIL trial.  Biochemo turned the tide, and didn't wreck his immune system.  He finished Biochemo in March 2012 and got TIL in May 2012, and has been stable, needing no further treatment since then.  His doctors at MDAnderson cared about Phil and his care, and I don't believe they would ever have recommended biochemo on a strictly financial basis for the hospital.  Really, have you ever met Dr Patrick Hwu and Dr Wen Jen, they want patients to live, they care, and are dedicated physicians.  Every case is different, Phil needed chemo at the time to halt what was happening in his body.  I totally get biochemo isn't for everyone, and I also totally respect everyone's decision and course of treatment for them.  Once you have educated yourself, go with what feels right for you, and please know the majority of us support you.  A good blog is Christina Strong Enough, who did biochemo and I believe is over 4 years NED and doing great!     Valerie (Phil's wife)

        Phil S
        Participant

          Seriously, I get offended when I see these comments!  MDAnderson was doing a lot of biochemo three years ago, when my husband started that treatment there in November 2011. We trusted the medical care and direction of our medical experts there, and I truly, truly believe biochemo saved my husband's life, since it slowed down his aggressively growing melanoma at the time, and got us into a TIL trial.  Biochemo turned the tide, and didn't wreck his immune system.  He finished Biochemo in March 2012 and got TIL in May 2012, and has been stable, needing no further treatment since then.  His doctors at MDAnderson cared about Phil and his care, and I don't believe they would ever have recommended biochemo on a strictly financial basis for the hospital.  Really, have you ever met Dr Patrick Hwu and Dr Wen Jen, they want patients to live, they care, and are dedicated physicians.  Every case is different, Phil needed chemo at the time to halt what was happening in his body.  I totally get biochemo isn't for everyone, and I also totally respect everyone's decision and course of treatment for them.  Once you have educated yourself, go with what feels right for you, and please know the majority of us support you.  A good blog is Christina Strong Enough, who did biochemo and I believe is over 4 years NED and doing great!     Valerie (Phil's wife)

          Phil S
          Participant

            Seriously, I get offended when I see these comments!  MDAnderson was doing a lot of biochemo three years ago, when my husband started that treatment there in November 2011. We trusted the medical care and direction of our medical experts there, and I truly, truly believe biochemo saved my husband's life, since it slowed down his aggressively growing melanoma at the time, and got us into a TIL trial.  Biochemo turned the tide, and didn't wreck his immune system.  He finished Biochemo in March 2012 and got TIL in May 2012, and has been stable, needing no further treatment since then.  His doctors at MDAnderson cared about Phil and his care, and I don't believe they would ever have recommended biochemo on a strictly financial basis for the hospital.  Really, have you ever met Dr Patrick Hwu and Dr Wen Jen, they want patients to live, they care, and are dedicated physicians.  Every case is different, Phil needed chemo at the time to halt what was happening in his body.  I totally get biochemo isn't for everyone, and I also totally respect everyone's decision and course of treatment for them.  Once you have educated yourself, go with what feels right for you, and please know the majority of us support you.  A good blog is Christina Strong Enough, who did biochemo and I believe is over 4 years NED and doing great!     Valerie (Phil's wife)

            Phil S
            Participant

              Ronald,   My husband, Phil did six rounds of biochemo in Houston before the TIL trial.  His biochemo consisted of Cisplatin, Vinblastine, Temodar, IL2, and interferon.   To answer your question, biochemo is tough, you will most likely lose your hair, you will spend one week in the hospital, the first week home from the hospital is rough but medications help the side effects, by the third week my husband, Phil returned to work.  He could work that week, but was not doing anything extra like exercise, then the biochemo cycle started again.  I felt Cisplatin was a difficult chemo to tolerate, and my husband does have some hearing loss that they attribute to his six rounds of this chemo.  I do know at least two people who are stable/NED since doing biochemo.  No guarantees, but it happens.  The real question now is with Antipd1 approved, could they get the same effect with a much less toxic treatment, who really knows??  But Worth discussion!!! 

              With biochemo you usually get scanned after two rounds, and can stop the treatment if it isn't working. If you are already NED, there is no visible gauge, so decisions before harder. It's always good to get a second opinion, and to make sure you are dealing with a melanoma specialist. We don't regret doing biochemo, for Phil it was his bridge treatment while his T cells grew and then we waited our turn for the TIL trial.  And, maybe it set Phil up to be a success at TIL, I believe each treatment has some value.  Heck, my husband had also completed one year of interferon, which some people thought was crazy at the time.  All I know for certain is Phil is still here, living life almost 5 years from diagnosis, and so far all his treatments helped us get to the next step.  Whatever you decide, talk to a melanoma doctor, hear the options, go with your gut, and don't look back!  I truly wish you all the best on whatever treatment you decide to do.   Valerie (Phil's wife)

               

              Phil S
              Participant

                Ronald,   My husband, Phil did six rounds of biochemo in Houston before the TIL trial.  His biochemo consisted of Cisplatin, Vinblastine, Temodar, IL2, and interferon.   To answer your question, biochemo is tough, you will most likely lose your hair, you will spend one week in the hospital, the first week home from the hospital is rough but medications help the side effects, by the third week my husband, Phil returned to work.  He could work that week, but was not doing anything extra like exercise, then the biochemo cycle started again.  I felt Cisplatin was a difficult chemo to tolerate, and my husband does have some hearing loss that they attribute to his six rounds of this chemo.  I do know at least two people who are stable/NED since doing biochemo.  No guarantees, but it happens.  The real question now is with Antipd1 approved, could they get the same effect with a much less toxic treatment, who really knows??  But Worth discussion!!! 

                With biochemo you usually get scanned after two rounds, and can stop the treatment if it isn't working. If you are already NED, there is no visible gauge, so decisions before harder. It's always good to get a second opinion, and to make sure you are dealing with a melanoma specialist. We don't regret doing biochemo, for Phil it was his bridge treatment while his T cells grew and then we waited our turn for the TIL trial.  And, maybe it set Phil up to be a success at TIL, I believe each treatment has some value.  Heck, my husband had also completed one year of interferon, which some people thought was crazy at the time.  All I know for certain is Phil is still here, living life almost 5 years from diagnosis, and so far all his treatments helped us get to the next step.  Whatever you decide, talk to a melanoma doctor, hear the options, go with your gut, and don't look back!  I truly wish you all the best on whatever treatment you decide to do.   Valerie (Phil's wife)

                 

                Phil S
                Participant

                  Ronald,   My husband, Phil did six rounds of biochemo in Houston before the TIL trial.  His biochemo consisted of Cisplatin, Vinblastine, Temodar, IL2, and interferon.   To answer your question, biochemo is tough, you will most likely lose your hair, you will spend one week in the hospital, the first week home from the hospital is rough but medications help the side effects, by the third week my husband, Phil returned to work.  He could work that week, but was not doing anything extra like exercise, then the biochemo cycle started again.  I felt Cisplatin was a difficult chemo to tolerate, and my husband does have some hearing loss that they attribute to his six rounds of this chemo.  I do know at least two people who are stable/NED since doing biochemo.  No guarantees, but it happens.  The real question now is with Antipd1 approved, could they get the same effect with a much less toxic treatment, who really knows??  But Worth discussion!!! 

                  With biochemo you usually get scanned after two rounds, and can stop the treatment if it isn't working. If you are already NED, there is no visible gauge, so decisions before harder. It's always good to get a second opinion, and to make sure you are dealing with a melanoma specialist. We don't regret doing biochemo, for Phil it was his bridge treatment while his T cells grew and then we waited our turn for the TIL trial.  And, maybe it set Phil up to be a success at TIL, I believe each treatment has some value.  Heck, my husband had also completed one year of interferon, which some people thought was crazy at the time.  All I know for certain is Phil is still here, living life almost 5 years from diagnosis, and so far all his treatments helped us get to the next step.  Whatever you decide, talk to a melanoma doctor, hear the options, go with your gut, and don't look back!  I truly wish you all the best on whatever treatment you decide to do.   Valerie (Phil's wife)

                   

                  Phil S
                  Participant

                    Artie,  My husband, Phil had TIL in Houston in May 2012, and was scanned 6 weeks after T cell infusion, then again 6 weeks later.  Both initial scans showed tumor shrinkage.  He is now on scans every 4 to 5 months, and his tumors have been stable for the past 2 years.  He is doing great!!  Wishing you all the best,  Valerie 

                    Phil S
                    Participant

                      Artie,  My husband, Phil had TIL in Houston in May 2012, and was scanned 6 weeks after T cell infusion, then again 6 weeks later.  Both initial scans showed tumor shrinkage.  He is now on scans every 4 to 5 months, and his tumors have been stable for the past 2 years.  He is doing great!!  Wishing you all the best,  Valerie 

                      Phil S
                      Participant

                        Artie,  My husband, Phil had TIL in Houston in May 2012, and was scanned 6 weeks after T cell infusion, then again 6 weeks later.  Both initial scans showed tumor shrinkage.  He is now on scans every 4 to 5 months, and his tumors have been stable for the past 2 years.  He is doing great!!  Wishing you all the best,  Valerie 

                        Phil S
                        Participant

                          My husband, Phil has anal mucosal melanoma and has been in the battle for over 4 1/2 years now.  He is Braf and CKit negative, so has no definable mutations to date.  Most of the mucosal patients we stay in contact with via email/facebook, etc. are also negative on Braf and Ckit mutations (except for Jerry with is CKit and takes Gleevec). I know it's scary and aggressive, but we have been able to put together a good fight over the years.  I would take one exception to Tim's comment, "immunotherapy has had mixed results in mucosal melanoma", I believe it has mixed results in all types of melanoma.  There are NO guarantees or valid predictions yet with any melanoma treatment, including the emerging immuno therapies.  And, quite frankly, there are too few studies, with too few mucosal patients to have much valid scientific data available.  

                          With that said, I will tell you my husband has done one year of interferon, lung and brain surgery, brain radiation, six rounds of Biochemo (including temodar and cisplatin) and finally TIL.  So, Phil has been stable for two years and 4 months after TIL in Houston, and hasn't needed any further treatment in that time.  Clearly, his body had an immune response to the T cells, and we hope it continues.  If and when, he needs treatment in the future, we would try Ipi or AntiPD1 with the hope we could again recharge his immune system.  We don't regret any treatment decision along the way, all laid the groundwork for his current status.

                           So, you have to research, get opinions from melanoma specialists, be your own advocate, and then finally Go With your Gut.  In our experience, Temodar and Cisplatin were our bridge treatments to hold his cancer at bay, while we awaited our TIL spot.  Cisplatin is a tough chemo, and in our experience did not provide long term durable response. But, we would do chemo again in a heartbeat, if we needed to get a short term response while waiting for an opportunity at immuno therapy.  I guess what I am saying is no one really knows yet, who will respond and who won't, so have multiple plans lined up and fight!!  Think ahead and always remember it only takes one treatment to turn the tide!  All the best,  Valerie (Phil's wife)

                           

                          Phil S
                          Participant

                            My husband, Phil has anal mucosal melanoma and has been in the battle for over 4 1/2 years now.  He is Braf and CKit negative, so has no definable mutations to date.  Most of the mucosal patients we stay in contact with via email/facebook, etc. are also negative on Braf and Ckit mutations (except for Jerry with is CKit and takes Gleevec). I know it's scary and aggressive, but we have been able to put together a good fight over the years.  I would take one exception to Tim's comment, "immunotherapy has had mixed results in mucosal melanoma", I believe it has mixed results in all types of melanoma.  There are NO guarantees or valid predictions yet with any melanoma treatment, including the emerging immuno therapies.  And, quite frankly, there are too few studies, with too few mucosal patients to have much valid scientific data available.  

                            With that said, I will tell you my husband has done one year of interferon, lung and brain surgery, brain radiation, six rounds of Biochemo (including temodar and cisplatin) and finally TIL.  So, Phil has been stable for two years and 4 months after TIL in Houston, and hasn't needed any further treatment in that time.  Clearly, his body had an immune response to the T cells, and we hope it continues.  If and when, he needs treatment in the future, we would try Ipi or AntiPD1 with the hope we could again recharge his immune system.  We don't regret any treatment decision along the way, all laid the groundwork for his current status.

                             So, you have to research, get opinions from melanoma specialists, be your own advocate, and then finally Go With your Gut.  In our experience, Temodar and Cisplatin were our bridge treatments to hold his cancer at bay, while we awaited our TIL spot.  Cisplatin is a tough chemo, and in our experience did not provide long term durable response. But, we would do chemo again in a heartbeat, if we needed to get a short term response while waiting for an opportunity at immuno therapy.  I guess what I am saying is no one really knows yet, who will respond and who won't, so have multiple plans lined up and fight!!  Think ahead and always remember it only takes one treatment to turn the tide!  All the best,  Valerie (Phil's wife)

                             

                            Phil S
                            Participant

                              My husband, Phil has anal mucosal melanoma and has been in the battle for over 4 1/2 years now.  He is Braf and CKit negative, so has no definable mutations to date.  Most of the mucosal patients we stay in contact with via email/facebook, etc. are also negative on Braf and Ckit mutations (except for Jerry with is CKit and takes Gleevec). I know it's scary and aggressive, but we have been able to put together a good fight over the years.  I would take one exception to Tim's comment, "immunotherapy has had mixed results in mucosal melanoma", I believe it has mixed results in all types of melanoma.  There are NO guarantees or valid predictions yet with any melanoma treatment, including the emerging immuno therapies.  And, quite frankly, there are too few studies, with too few mucosal patients to have much valid scientific data available.  

                              With that said, I will tell you my husband has done one year of interferon, lung and brain surgery, brain radiation, six rounds of Biochemo (including temodar and cisplatin) and finally TIL.  So, Phil has been stable for two years and 4 months after TIL in Houston, and hasn't needed any further treatment in that time.  Clearly, his body had an immune response to the T cells, and we hope it continues.  If and when, he needs treatment in the future, we would try Ipi or AntiPD1 with the hope we could again recharge his immune system.  We don't regret any treatment decision along the way, all laid the groundwork for his current status.

                               So, you have to research, get opinions from melanoma specialists, be your own advocate, and then finally Go With your Gut.  In our experience, Temodar and Cisplatin were our bridge treatments to hold his cancer at bay, while we awaited our TIL spot.  Cisplatin is a tough chemo, and in our experience did not provide long term durable response. But, we would do chemo again in a heartbeat, if we needed to get a short term response while waiting for an opportunity at immuno therapy.  I guess what I am saying is no one really knows yet, who will respond and who won't, so have multiple plans lined up and fight!!  Think ahead and always remember it only takes one treatment to turn the tide!  All the best,  Valerie (Phil's wife)

                               

                              Phil S
                              Participant

                                First let me say that your baby is absolutely adorable!!!     I am so sorry you are going thru this difficult diagnosis, pediatric melanoma is so rare. I am sure you feel isolated and scared.  I think it's hard to get a definite answer with some forms of melanoma, my husband's mucosal melanoma is very hard to understand since it didn't originate in a mole and he has no known mutations to date.  For awhile, my husband kept asking the doctors why he got this very rare form of melanoma, and I remember one doctor just saying to him, Phil I have no current explanation, "it's just like getting hit by lightning", you have to accept that some cancer can be random.   We liked that answer, because we knew there wasn't anything we could have done differently.  My husband had never smoked, had an extremely healthy diet, exercised regularly, etc..  But, now for whatever reason, we needed to change his immune system, which was failing him, and Fight!  It's a long story, but we have done treatment to improve Phil's immune system and he is staying stable, his body is able to hold things back.  I have read very encouraging things regarding young children's immune systems, and you are doing great by getting treatment at a top rated melanoma center.  Dr Ross removed Phil's tumor for TIL.  So, I truly wish you all the best and many, many years watching your beautiful son grow up.   Valerie (Phil's wife)

                                Phil S
                                Participant

                                  First let me say that your baby is absolutely adorable!!!     I am so sorry you are going thru this difficult diagnosis, pediatric melanoma is so rare. I am sure you feel isolated and scared.  I think it's hard to get a definite answer with some forms of melanoma, my husband's mucosal melanoma is very hard to understand since it didn't originate in a mole and he has no known mutations to date.  For awhile, my husband kept asking the doctors why he got this very rare form of melanoma, and I remember one doctor just saying to him, Phil I have no current explanation, "it's just like getting hit by lightning", you have to accept that some cancer can be random.   We liked that answer, because we knew there wasn't anything we could have done differently.  My husband had never smoked, had an extremely healthy diet, exercised regularly, etc..  But, now for whatever reason, we needed to change his immune system, which was failing him, and Fight!  It's a long story, but we have done treatment to improve Phil's immune system and he is staying stable, his body is able to hold things back.  I have read very encouraging things regarding young children's immune systems, and you are doing great by getting treatment at a top rated melanoma center.  Dr Ross removed Phil's tumor for TIL.  So, I truly wish you all the best and many, many years watching your beautiful son grow up.   Valerie (Phil's wife)

                                  Phil S
                                  Participant

                                    First let me say that your baby is absolutely adorable!!!     I am so sorry you are going thru this difficult diagnosis, pediatric melanoma is so rare. I am sure you feel isolated and scared.  I think it's hard to get a definite answer with some forms of melanoma, my husband's mucosal melanoma is very hard to understand since it didn't originate in a mole and he has no known mutations to date.  For awhile, my husband kept asking the doctors why he got this very rare form of melanoma, and I remember one doctor just saying to him, Phil I have no current explanation, "it's just like getting hit by lightning", you have to accept that some cancer can be random.   We liked that answer, because we knew there wasn't anything we could have done differently.  My husband had never smoked, had an extremely healthy diet, exercised regularly, etc..  But, now for whatever reason, we needed to change his immune system, which was failing him, and Fight!  It's a long story, but we have done treatment to improve Phil's immune system and he is staying stable, his body is able to hold things back.  I have read very encouraging things regarding young children's immune systems, and you are doing great by getting treatment at a top rated melanoma center.  Dr Ross removed Phil's tumor for TIL.  So, I truly wish you all the best and many, many years watching your beautiful son grow up.   Valerie (Phil's wife)

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