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Wondering how rbruce is doing?
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Wondering how rbruce is doing?

› Forums › General Melanoma Community › Wondering how rbruce is doing?

  • Post
    • August 16, 2011 at 1:19 pm
    Phil S
    Participant
      Robert posted back the first week of June that he was going to do the biochemo treatment in California. I was following his posts during his decision making, and have been hoping he had good response. If you get a chance let us know how you are doing? Valerie (Phil’s wife)

      Robert posted back the first week of June that he was going to do the biochemo treatment in California. I was following his posts during his decision making, and have been hoping he had good response. If you get a chance let us know how you are doing? Valerie (Phil’s wife)

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        • August 19, 2011 at 10:51 pm
        rbruce
        Participant

          Haven't logged in lately and just saw your post asking how I was doing.  I just finished 4 rounds of biochemotherapy at California Pacific Medical Center with Dr.s Minor and Wang.  1 week in ICU with IL-2, Interferon, + 3 chemo drugs, then 2 weeks off, then again for a total of 4.  After round 3 had new scans.  Results: basically the same as scans prior to treatment.  The good news is that tumors didn't grow or show up anywhere new, but I was hoping for better.  So now they want me to do IPI.  I'm reading IPI stories today to help determine what I do. 

          The biochemo kicked my ass!.  Nausea, fatigue, itching, neuropathy in my upper leg, insomnia and more usually lasted til about 3 days prior to going in for next round.  I lost 40 pounds, now 170.  I really thought for going through this hell I would've had better results but as I'm reminded daily, nothing grew!   

          Other than a bit of pain in my rib, I 'm felling pretty good after getting out of the hospital last friday.  I'm eating again (with the help of cooking shows which was good advice on this board).  Still can't sleep well, I'm tired and wound up at the same time.  After reading some of the other posts here today, I realize just how lucky I am to be stable. 

          Thanks for caring.

          Robert

          • August 19, 2011 at 10:51 pm
          rbruce
          Participant

            Haven't logged in lately and just saw your post asking how I was doing.  I just finished 4 rounds of biochemotherapy at California Pacific Medical Center with Dr.s Minor and Wang.  1 week in ICU with IL-2, Interferon, + 3 chemo drugs, then 2 weeks off, then again for a total of 4.  After round 3 had new scans.  Results: basically the same as scans prior to treatment.  The good news is that tumors didn't grow or show up anywhere new, but I was hoping for better.  So now they want me to do IPI.  I'm reading IPI stories today to help determine what I do. 

            The biochemo kicked my ass!.  Nausea, fatigue, itching, neuropathy in my upper leg, insomnia and more usually lasted til about 3 days prior to going in for next round.  I lost 40 pounds, now 170.  I really thought for going through this hell I would've had better results but as I'm reminded daily, nothing grew!   

            Other than a bit of pain in my rib, I 'm felling pretty good after getting out of the hospital last friday.  I'm eating again (with the help of cooking shows which was good advice on this board).  Still can't sleep well, I'm tired and wound up at the same time.  After reading some of the other posts here today, I realize just how lucky I am to be stable. 

            Thanks for caring.

            Robert

              • August 20, 2011 at 1:16 am
              Phil S
              Participant
                Robert. Thank for the update, I follow some others who have done biochemotherapy and was so hoping this would be your magic bullet. But stable is good, and now maybe your system is totally ready to respond to IPI. Also, would look into anti-pd1 trials, seems promising with fewer side effects. Decisions on treatment are so difficult and although education sure helps, sometimes being one’s own advocate is so tiring. Try to get some rest, and take care! Keep us posted, Valerie (phil’s wife)
                • August 20, 2011 at 1:16 am
                Phil S
                Participant
                  Robert. Thank for the update, I follow some others who have done biochemotherapy and was so hoping this would be your magic bullet. But stable is good, and now maybe your system is totally ready to respond to IPI. Also, would look into anti-pd1 trials, seems promising with fewer side effects. Decisions on treatment are so difficult and although education sure helps, sometimes being one’s own advocate is so tiring. Try to get some rest, and take care! Keep us posted, Valerie (phil’s wife)
                  • September 4, 2011 at 6:16 pm
                  rbruce
                  Participant

                    Valerie and Phil,

                    Thanks for mentioning the anti-PD1 trials as I had assumed taht they were for Braf + patients only, but after some research it sounds like that is not the case and I may be eleigible.  I went back to UCSF Oncologist that I started with before the biochemo treatment at CPMC and in a phone conversation he mentioned PD-1 trials an an option for me.  Wow, am I grateful as after reading about it, it seems so much better than IPI.  UCSF Onc called it the "son of Yervoy"  with fewer side effects.  Just knowing I have an option is awesome.  How is Phil doing?  Message me when you can.

                    Thanks!

                    Robert

                    • September 6, 2011 at 7:56 pm
                    Phil S
                    Participant
                      Robert. So glad you are exploring anti-PD1 trials, please keep us posted on your progress. Phil is stable right now, and taking leukine shots. He gets scanned again the end of september, and we hope he is still NED after his lung surgery in July. Phil is also braf negative, so I have anti-PD1 in my list of future treatments if/when needed. Take care and wishing you good response on your next treatment. Valerie and Phil
                      • September 6, 2011 at 7:56 pm
                      Phil S
                      Participant
                        Robert. So glad you are exploring anti-PD1 trials, please keep us posted on your progress. Phil is stable right now, and taking leukine shots. He gets scanned again the end of september, and we hope he is still NED after his lung surgery in July. Phil is also braf negative, so I have anti-PD1 in my list of future treatments if/when needed. Take care and wishing you good response on your next treatment. Valerie and Phil
                        • September 4, 2011 at 6:16 pm
                        rbruce
                        Participant

                          Valerie and Phil,

                          Thanks for mentioning the anti-PD1 trials as I had assumed taht they were for Braf + patients only, but after some research it sounds like that is not the case and I may be eleigible.  I went back to UCSF Oncologist that I started with before the biochemo treatment at CPMC and in a phone conversation he mentioned PD-1 trials an an option for me.  Wow, am I grateful as after reading about it, it seems so much better than IPI.  UCSF Onc called it the "son of Yervoy"  with fewer side effects.  Just knowing I have an option is awesome.  How is Phil doing?  Message me when you can.

                          Thanks!

                          Robert

                          • August 22, 2011 at 6:54 pm
                          Gene_S
                          Participant

                            Hello Robert,

                            Here is a story of a young mother who did bio treatment, now on ippi.

                            see: http://strongenough-christina.blogspot.com/

                            Best wishes to you.    Gene

                            • August 22, 2011 at 6:54 pm
                            Gene_S
                            Participant

                              Hello Robert,

                              Here is a story of a young mother who did bio treatment, now on ippi.

                              see: http://strongenough-christina.blogspot.com/

                              Best wishes to you.    Gene

                            • September 5, 2011 at 5:12 am
                            JerryfromFauq
                            Participant

                              Stable is much better than what I was told 4 1/2 years ago I would be wihin 6 months then.  I sure would like reduction, but like that life goes on.  I am also very interested i n the future of PD-1.

                              • September 5, 2011 at 5:12 am
                              JerryfromFauq
                              Participant

                                Stable is much better than what I was told 4 1/2 years ago I would be wihin 6 months then.  I sure would like reduction, but like that life goes on.  I am also very interested i n the future of PD-1.

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