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PHP

› Forums › General Melanoma Community › PHP

  • Post
    • September 20, 2012 at 5:00 pm
    edamaser
    Participant

      I am at a choice point, and am considering having PHP.  I would very much appreciate it if any of you who have had this procedure would share with me:

      Where you had it, what you thought of the facility, the doc, the team.

      What was your experience–pain, discmfort, how long to recover

      Outcome–how long your liver mets remained stable, reduced, grew

      Thanks so much

      Esther

      I am at a choice point, and am considering having PHP.  I would very much appreciate it if any of you who have had this procedure would share with me:

      Where you had it, what you thought of the facility, the doc, the team.

      What was your experience–pain, discmfort, how long to recover

      Outcome–how long your liver mets remained stable, reduced, grew

      Thanks so much

      Esther

    Viewing 11 reply threads
    • Replies
        • September 23, 2012 at 6:50 pm
        margaretrogers57
        Participant

          Hey Esther,

           

          I did some research on PHP and couldn't find anywhere in the us that is doing that at present.  Did you find somewhere.  Might be interested myself for Butch.  Sounds promising.  Right now we're investigating PD-1 a will  decide soon.  I feel like we're losing the battle right now.  Good luck to you, Margaret

            • September 23, 2012 at 7:55 pm
            edamaser
            Participant

              Margaret,

              Dr. Pingpank at Pittsburgh is doing it.  I just learned that they have the system at Ohio State University.  I'm certain there are other places (is Dr. Alexander still doing it in MD?).  Look on the Delcath site to see if you can find a list of places that bought/have the Delcath machine that is used in PHP.

              Interestingly, I have not received a single response to my request for a contact from someone who has had PHP.  Has no one with OM had this procedure?

              Everything seems such a crap shoot.

              Good luck to you and Butch,

              Esther

              • September 23, 2012 at 10:52 pm
              margaretrogers57
              Participant

                Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

                • September 23, 2012 at 10:52 pm
                margaretrogers57
                Participant

                  Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

                  • September 23, 2012 at 10:52 pm
                  margaretrogers57
                  Participant

                    Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

                    • September 23, 2012 at 10:52 pm
                    margaretrogers57
                    Participant

                      Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

                      • September 23, 2012 at 10:52 pm
                      margaretrogers57
                      Participant

                        Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

                        • September 23, 2012 at 10:52 pm
                        margaretrogers57
                        Participant

                          Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

                          • September 24, 2012 at 1:36 am
                          edamaser
                          Participant

                            I'm pretty sure they do (Moffitt).  You can ask Dr. Weber when you see him.

                            Esther

                            • September 24, 2012 at 1:36 am
                            edamaser
                            Participant

                              I'm pretty sure they do (Moffitt).  You can ask Dr. Weber when you see him.

                              Esther

                              • September 24, 2012 at 1:36 am
                              edamaser
                              Participant

                                I'm pretty sure they do (Moffitt).  You can ask Dr. Weber when you see him.

                                Esther

                                • September 24, 2012 at 1:01 pm
                                ThatHomeschoolDad
                                Participant

                                  Two of us posted your request on Ocu-Mel.  I didn't see any responses either.  I know there is a guy on the list (a physician himself, I think), who had three rounds of PHP with Pingpank.  He hasn't posted lately.   Pingpank seems to be going around the country to help establish IHP at other sites.  Perhaps PHP will follow a similar course.  I'd just contanct Pittsburgh and see what they say about alternate locations.

                                   

                                  –Tom

                                  • September 24, 2012 at 1:01 pm
                                  ThatHomeschoolDad
                                  Participant

                                    Two of us posted your request on Ocu-Mel.  I didn't see any responses either.  I know there is a guy on the list (a physician himself, I think), who had three rounds of PHP with Pingpank.  He hasn't posted lately.   Pingpank seems to be going around the country to help establish IHP at other sites.  Perhaps PHP will follow a similar course.  I'd just contanct Pittsburgh and see what they say about alternate locations.

                                     

                                    –Tom

                                    • September 24, 2012 at 1:01 pm
                                    ThatHomeschoolDad
                                    Participant

                                      Two of us posted your request on Ocu-Mel.  I didn't see any responses either.  I know there is a guy on the list (a physician himself, I think), who had three rounds of PHP with Pingpank.  He hasn't posted lately.   Pingpank seems to be going around the country to help establish IHP at other sites.  Perhaps PHP will follow a similar course.  I'd just contanct Pittsburgh and see what they say about alternate locations.

                                       

                                      –Tom

                                      • September 26, 2012 at 4:22 pm
                                      cpopp
                                      Participant

                                        This article seems to indicate that chemoembolization is just as effective, safer, and less expensive.  Is chemoebolization not an option for you?

                                        Connie

                                        http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid+Tumors&d_id=148&i=January+2012&i_id=808&a_id=20060

                                        • September 26, 2012 at 4:22 pm
                                        cpopp
                                        Participant

                                          This article seems to indicate that chemoembolization is just as effective, safer, and less expensive.  Is chemoebolization not an option for you?

                                          Connie

                                          http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid+Tumors&d_id=148&i=January+2012&i_id=808&a_id=20060

                                          • September 26, 2012 at 4:22 pm
                                          cpopp
                                          Participant

                                            This article seems to indicate that chemoembolization is just as effective, safer, and less expensive.  Is chemoebolization not an option for you?

                                            Connie

                                            http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid+Tumors&d_id=148&i=January+2012&i_id=808&a_id=20060

                                            • September 27, 2012 at 12:30 am
                                            ThatHomeschoolDad
                                            Participant

                                              The article does not seem to take into account the new Stage II filter Delcath just released this spring.  It removes more than 90% of the melphalan, thus lowering systemic toxicity.   I'd check with Pingpank on that one.  Having had IHP, I can see why the article mentioned that this might be better suited to younger patients.  I was 46 at the time and in ok shape, had IHP really kicked my ass.

                                               

                                              –Tom

                                              • September 27, 2012 at 12:30 am
                                              ThatHomeschoolDad
                                              Participant

                                                The article does not seem to take into account the new Stage II filter Delcath just released this spring.  It removes more than 90% of the melphalan, thus lowering systemic toxicity.   I'd check with Pingpank on that one.  Having had IHP, I can see why the article mentioned that this might be better suited to younger patients.  I was 46 at the time and in ok shape, had IHP really kicked my ass.

                                                 

                                                –Tom

                                                • September 27, 2012 at 12:30 am
                                                ThatHomeschoolDad
                                                Participant

                                                  The article does not seem to take into account the new Stage II filter Delcath just released this spring.  It removes more than 90% of the melphalan, thus lowering systemic toxicity.   I'd check with Pingpank on that one.  Having had IHP, I can see why the article mentioned that this might be better suited to younger patients.  I was 46 at the time and in ok shape, had IHP really kicked my ass.

                                                   

                                                  –Tom

                                                  • September 23, 2012 at 7:55 pm
                                                  edamaser
                                                  Participant

                                                    Margaret,

                                                    Dr. Pingpank at Pittsburgh is doing it.  I just learned that they have the system at Ohio State University.  I'm certain there are other places (is Dr. Alexander still doing it in MD?).  Look on the Delcath site to see if you can find a list of places that bought/have the Delcath machine that is used in PHP.

                                                    Interestingly, I have not received a single response to my request for a contact from someone who has had PHP.  Has no one with OM had this procedure?

                                                    Everything seems such a crap shoot.

                                                    Good luck to you and Butch,

                                                    Esther

                                                    • September 23, 2012 at 7:55 pm
                                                    edamaser
                                                    Participant

                                                      Margaret,

                                                      Dr. Pingpank at Pittsburgh is doing it.  I just learned that they have the system at Ohio State University.  I'm certain there are other places (is Dr. Alexander still doing it in MD?).  Look on the Delcath site to see if you can find a list of places that bought/have the Delcath machine that is used in PHP.

                                                      Interestingly, I have not received a single response to my request for a contact from someone who has had PHP.  Has no one with OM had this procedure?

                                                      Everything seems such a crap shoot.

                                                      Good luck to you and Butch,

                                                      Esther

                                                    • September 23, 2012 at 6:50 pm
                                                    margaretrogers57
                                                    Participant

                                                      Hey Esther,

                                                       

                                                      I did some research on PHP and couldn't find anywhere in the us that is doing that at present.  Did you find somewhere.  Might be interested myself for Butch.  Sounds promising.  Right now we're investigating PD-1 a will  decide soon.  I feel like we're losing the battle right now.  Good luck to you, Margaret

                                                      • September 23, 2012 at 6:50 pm
                                                      margaretrogers57
                                                      Participant

                                                        Hey Esther,

                                                         

                                                        I did some research on PHP and couldn't find anywhere in the us that is doing that at present.  Did you find somewhere.  Might be interested myself for Butch.  Sounds promising.  Right now we're investigating PD-1 a will  decide soon.  I feel like we're losing the battle right now.  Good luck to you, Margaret

                                                        • September 30, 2012 at 1:49 am
                                                        edamaser
                                                        Participant

                                                          Hi All,

                                                          Well I found out that PHP is not readily available.  Apparently it has not yet been approved by the FDA, and Delcath has removed its application for approval (don't know why).  The only source for it is Dr. Pingpank in Pittsburgh who has a special dispensation for compassionate use.

                                                          One person with OM who has had it, was kind enough to describe in depth his experiences.  It was not easy for him.  He had 3 rounds of it. 

                                                          I met with a liver surgeon who was able to clarify for me just how "bad" my liver really is.  The verdict is "not that bad."  Many of my liver lesions are stable, some are shrinking, and only a few are growing.  Even though one of the growing ones is pretty big now (6.1 cm), he explained to me that it is not growing into anything that would compromise the functioning of the liver (e.g. a major blood vessle, or the bile duct).  The liver is hugely redundant–we have far more liver tissue than we need to get along, thus no need for me to panic about some growth.  My LFTs are quite good, indicating that my liver is, at the moment doing just fine.

                                                          As a result, and with a better understanding of the PHP procedure, I have decided against it, at least at this time.  I plan to have immuno-embos, followed by another round of ipi (if the insurance gods will allow).

                                                          I am so relieved just to have decided on a plan.

                                                          I wish all of you relief from anxiety, and good scan results.

                                                          Esther

                                                          • September 30, 2012 at 1:49 am
                                                          edamaser
                                                          Participant

                                                            Hi All,

                                                            Well I found out that PHP is not readily available.  Apparently it has not yet been approved by the FDA, and Delcath has removed its application for approval (don't know why).  The only source for it is Dr. Pingpank in Pittsburgh who has a special dispensation for compassionate use.

                                                            One person with OM who has had it, was kind enough to describe in depth his experiences.  It was not easy for him.  He had 3 rounds of it. 

                                                            I met with a liver surgeon who was able to clarify for me just how "bad" my liver really is.  The verdict is "not that bad."  Many of my liver lesions are stable, some are shrinking, and only a few are growing.  Even though one of the growing ones is pretty big now (6.1 cm), he explained to me that it is not growing into anything that would compromise the functioning of the liver (e.g. a major blood vessle, or the bile duct).  The liver is hugely redundant–we have far more liver tissue than we need to get along, thus no need for me to panic about some growth.  My LFTs are quite good, indicating that my liver is, at the moment doing just fine.

                                                            As a result, and with a better understanding of the PHP procedure, I have decided against it, at least at this time.  I plan to have immuno-embos, followed by another round of ipi (if the insurance gods will allow).

                                                            I am so relieved just to have decided on a plan.

                                                            I wish all of you relief from anxiety, and good scan results.

                                                            Esther

                                                            • September 30, 2012 at 1:49 am
                                                            edamaser
                                                            Participant

                                                              Hi All,

                                                              Well I found out that PHP is not readily available.  Apparently it has not yet been approved by the FDA, and Delcath has removed its application for approval (don't know why).  The only source for it is Dr. Pingpank in Pittsburgh who has a special dispensation for compassionate use.

                                                              One person with OM who has had it, was kind enough to describe in depth his experiences.  It was not easy for him.  He had 3 rounds of it. 

                                                              I met with a liver surgeon who was able to clarify for me just how "bad" my liver really is.  The verdict is "not that bad."  Many of my liver lesions are stable, some are shrinking, and only a few are growing.  Even though one of the growing ones is pretty big now (6.1 cm), he explained to me that it is not growing into anything that would compromise the functioning of the liver (e.g. a major blood vessle, or the bile duct).  The liver is hugely redundant–we have far more liver tissue than we need to get along, thus no need for me to panic about some growth.  My LFTs are quite good, indicating that my liver is, at the moment doing just fine.

                                                              As a result, and with a better understanding of the PHP procedure, I have decided against it, at least at this time.  I plan to have immuno-embos, followed by another round of ipi (if the insurance gods will allow).

                                                              I am so relieved just to have decided on a plan.

                                                              I wish all of you relief from anxiety, and good scan results.

                                                              Esther

                                                                • September 30, 2012 at 2:13 am
                                                                tommonoli
                                                                Participant

                                                                  Wishing you well with it Esther, it is good to have a direction and plan.

                                                                  • September 30, 2012 at 2:13 am
                                                                  tommonoli
                                                                  Participant

                                                                    Wishing you well with it Esther, it is good to have a direction and plan.

                                                                    • September 30, 2012 at 2:13 am
                                                                    tommonoli
                                                                    Participant

                                                                      Wishing you well with it Esther, it is good to have a direction and plan.

                                                                      • October 3, 2012 at 6:34 am
                                                                      Dennis
                                                                      Participant

                                                                        Hi Esther,

                                                                        I just wanted to let you know how glad I am to hear that your liver is in pretty good condition and you have a plan!

                                                                        Wishing you the best,

                                                                        -Dennis in CA

                                                                        • October 3, 2012 at 6:34 am
                                                                        Dennis
                                                                        Participant

                                                                          Hi Esther,

                                                                          I just wanted to let you know how glad I am to hear that your liver is in pretty good condition and you have a plan!

                                                                          Wishing you the best,

                                                                          -Dennis in CA

                                                                          • October 3, 2012 at 6:34 am
                                                                          Dennis
                                                                          Participant

                                                                            Hi Esther,

                                                                            I just wanted to let you know how glad I am to hear that your liver is in pretty good condition and you have a plan!

                                                                            Wishing you the best,

                                                                            -Dennis in CA

                                                                            • October 6, 2012 at 4:01 pm
                                                                            cgranger
                                                                            Participant

                                                                              Hi Esther,

                                                                              "Not so bad" and stable sounds pretty good.

                                                                              Thinking of you, Carol

                                                                               

                                                                              BTW, re the PHP: I'm sure you remember Bill Darker – he had a pretty rough time of it with 2 or 3 of those treatments.  And I'm pretty sure Delcath pulled it off the mkt for quite a while.  Good luck with your other plan…

                                                                              • October 6, 2012 at 4:01 pm
                                                                              cgranger
                                                                              Participant

                                                                                Hi Esther,

                                                                                "Not so bad" and stable sounds pretty good.

                                                                                Thinking of you, Carol

                                                                                 

                                                                                BTW, re the PHP: I'm sure you remember Bill Darker – he had a pretty rough time of it with 2 or 3 of those treatments.  And I'm pretty sure Delcath pulled it off the mkt for quite a while.  Good luck with your other plan…

                                                                                • October 6, 2012 at 4:01 pm
                                                                                cgranger
                                                                                Participant

                                                                                  Hi Esther,

                                                                                  "Not so bad" and stable sounds pretty good.

                                                                                  Thinking of you, Carol

                                                                                   

                                                                                  BTW, re the PHP: I'm sure you remember Bill Darker – he had a pretty rough time of it with 2 or 3 of those treatments.  And I'm pretty sure Delcath pulled it off the mkt for quite a while.  Good luck with your other plan…

                                                                                • October 3, 2012 at 3:51 pm
                                                                                edamaser
                                                                                Participant

                                                                                  Thanks Dennis & others,

                                                                                  One of my docs just told me that Delcath has (re)submitted its machine/procedure to the FDA, and that approval is expected soon.  If this is true, and it really happens, then PHP will probably be available in a lot of places.  There are so many more options for us now than there were when I first started to drag myself down this road.

                                                                                  Esther

                                                                                  • October 3, 2012 at 3:51 pm
                                                                                  edamaser
                                                                                  Participant

                                                                                    Thanks Dennis & others,

                                                                                    One of my docs just told me that Delcath has (re)submitted its machine/procedure to the FDA, and that approval is expected soon.  If this is true, and it really happens, then PHP will probably be available in a lot of places.  There are so many more options for us now than there were when I first started to drag myself down this road.

                                                                                    Esther

                                                                                    • October 3, 2012 at 3:51 pm
                                                                                    edamaser
                                                                                    Participant

                                                                                      Thanks Dennis & others,

                                                                                      One of my docs just told me that Delcath has (re)submitted its machine/procedure to the FDA, and that approval is expected soon.  If this is true, and it really happens, then PHP will probably be available in a lot of places.  There are so many more options for us now than there were when I first started to drag myself down this road.

                                                                                      Esther

                                                                                        • October 3, 2012 at 4:40 pm
                                                                                        tommonoli
                                                                                        Participant

                                                                                          🙂  for you Esther.

                                                                                           

                                                                                           

                                                                                          Richard

                                                                                          • October 3, 2012 at 4:40 pm
                                                                                          tommonoli
                                                                                          Participant

                                                                                            🙂  for you Esther.

                                                                                             

                                                                                             

                                                                                            Richard

                                                                                            • October 22, 2012 at 11:17 am
                                                                                            lukecruz
                                                                                            Participant

                                                                                              It would be Nice if you provide some more information about PHP.

                                                                                               

                                                                                              learn English

                                                                                              • October 22, 2012 at 11:17 am
                                                                                              lukecruz
                                                                                              Participant

                                                                                                It would be Nice if you provide some more information about PHP.

                                                                                                 

                                                                                                learn English

                                                                                                • October 22, 2012 at 11:17 am
                                                                                                lukecruz
                                                                                                Participant

                                                                                                  It would be Nice if you provide some more information about PHP.

                                                                                                   

                                                                                                  learn English

                                                                                                  • October 3, 2012 at 4:40 pm
                                                                                                  tommonoli
                                                                                                  Participant

                                                                                                    🙂  for you Esther.

                                                                                                     

                                                                                                     

                                                                                                    Richard

                                                                                                  • November 21, 2012 at 7:05 am
                                                                                                  lak
                                                                                                  Participant

                                                                                                    I have known 2 people who had PHP in Southampton England. The same interventionist who did my SIRT is doing it.

                                                                                                     

                                                                                                    One compared it to other treatments and said it was harder than SIRT ( I would say that about ablation too) . The other patient was having their first treatment.

                                                                                                     

                                                                                                    Dr Stedman is the radiologist

                                                                                                    http://www.bbc.co.uk/news/world-20270400

                                                                                                     

                                                                                                    i will ask if one or both will post here.

                                                                                                     

                                                                                                    Lesley

                                                                                                      • November 22, 2012 at 7:13 am
                                                                                                      lak
                                                                                                      Participant

                                                                                                        Dr Nutting has just posted on Ocumel that he too is now doing PHP on compassionate use prior to FDA aproval.

                                                                                                         

                                                                                                        Of Sky ridge medical center Co.

                                                                                                         

                                                                                                        Lesley

                                                                                                        • November 22, 2012 at 7:13 am
                                                                                                        lak
                                                                                                        Participant

                                                                                                          Dr Nutting has just posted on Ocumel that he too is now doing PHP on compassionate use prior to FDA aproval.

                                                                                                           

                                                                                                          Of Sky ridge medical center Co.

                                                                                                           

                                                                                                          Lesley

                                                                                                          • November 22, 2012 at 7:13 am
                                                                                                          lak
                                                                                                          Participant

                                                                                                            Dr Nutting has just posted on Ocumel that he too is now doing PHP on compassionate use prior to FDA aproval.

                                                                                                             

                                                                                                            Of Sky ridge medical center Co.

                                                                                                             

                                                                                                            Lesley

                                                                                                          • November 21, 2012 at 7:05 am
                                                                                                          lak
                                                                                                          Participant

                                                                                                            I have known 2 people who had PHP in Southampton England. The same interventionist who did my SIRT is doing it.

                                                                                                             

                                                                                                            One compared it to other treatments and said it was harder than SIRT ( I would say that about ablation too) . The other patient was having their first treatment.

                                                                                                             

                                                                                                            Dr Stedman is the radiologist

                                                                                                            http://www.bbc.co.uk/news/world-20270400

                                                                                                             

                                                                                                            i will ask if one or both will post here.

                                                                                                             

                                                                                                            Lesley

                                                                                                            • November 21, 2012 at 7:05 am
                                                                                                            lak
                                                                                                            Participant

                                                                                                              I have known 2 people who had PHP in Southampton England. The same interventionist who did my SIRT is doing it.

                                                                                                               

                                                                                                              One compared it to other treatments and said it was harder than SIRT ( I would say that about ablation too) . The other patient was having their first treatment.

                                                                                                               

                                                                                                              Dr Stedman is the radiologist

                                                                                                              http://www.bbc.co.uk/news/world-20270400

                                                                                                               

                                                                                                              i will ask if one or both will post here.

                                                                                                               

                                                                                                              Lesley

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