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back from MD also responding to trial

Forums General Melanoma Community back from MD also responding to trial

  • Post
    ipi in DC
    Participant

      Hey Everybody,

      Just got back into town from my scheduled scans during Ipi/ temador trial. As Jim I was enrolled in the trial in August, we are on the same weeks. The scans showed an  aprox. 25% decrease in all lung nodules and the nodule on lower back has decreased by atleast  half.

      I also feel so lucky to be responding to the treatment, but yet guilty because so many others are still working so hard to find something that works for them or the same trial and not responding. It makes me very humble to be so lucky, (why do I get to respond and not everyone else).

      Hey Everybody,

      Just got back into town from my scheduled scans during Ipi/ temador trial. As Jim I was enrolled in the trial in August, we are on the same weeks. The scans showed an  aprox. 25% decrease in all lung nodules and the nodule on lower back has decreased by atleast  half.

      I also feel so lucky to be responding to the treatment, but yet guilty because so many others are still working so hard to find something that works for them or the same trial and not responding. It makes me very humble to be so lucky, (why do I get to respond and not everyone else).

      I agree with Jim that we are not out of the woods yet, but it was so nice to have the staff come in smiling with good news. There is still a long way to go and a possibility of more side effects that can be very nasty. I do have a major rash that started the first infusion but has increased each infusion. The rash went nuts the 4th infusion and a constant itch over my intire body that just seems to walk from one spot to the next. It really seems to go nuts in the middle of the night. Unfortunately Benadryl doesnt work for me and never has. The Hydroxyzine seems to take the edge off, and I have found that Green labeled Gold Bond lotion and powder seems to be the best for me. The lotion makes you feel like your freezing cold until it dries.

      David

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    • Replies
        Jerry from Cape Cod
        Participant

          Hi David,

          You'll go through "responder" guilt and it's natural and found across all diseases. The thing to remember is that in a trial it's the responders  that show that things work for others.

          In the world of cancer only 3% of all patients participate in trials.  In the world of melanoma almost all stage IV's are in or have been in trials.  We are a rare breed and as time goes on perhaps with some of the treatments going down the stages there will be fewer that even face Stage IV.

          Congratualtions on the good scans and wishes that it continues. 

          The happy rash will drive you crazy.  It did start tapering down for me around the 24th week.  Now in week 91 it's actually getting a bit stronger.  I did find the gold bond just as good as any of the other lotions that were recommended.  I swapped out some of the heavy meds during the first year and started on the benedryl and it's been okay.

          Jerry from Cape Cod

           

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          Jerry from Cape Cod
          Participant

            Hi David,

            You'll go through "responder" guilt and it's natural and found across all diseases. The thing to remember is that in a trial it's the responders  that show that things work for others.

            In the world of cancer only 3% of all patients participate in trials.  In the world of melanoma almost all stage IV's are in or have been in trials.  We are a rare breed and as time goes on perhaps with some of the treatments going down the stages there will be fewer that even face Stage IV.

            Congratualtions on the good scans and wishes that it continues. 

            The happy rash will drive you crazy.  It did start tapering down for me around the 24th week.  Now in week 91 it's actually getting a bit stronger.  I did find the gold bond just as good as any of the other lotions that were recommended.  I swapped out some of the heavy meds during the first year and started on the benedryl and it's been okay.

            Jerry from Cape Cod

             

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              ChristineL
              Participant

                Well put, Jerry!

                ChristineL

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                ChristineL
                Participant

                  Well put, Jerry!

                  ChristineL

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                stillhopeful
                Participant

                  Congratulations!  Be happy not guilty!

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                  stillhopeful
                  Participant

                    Congratulations!  Be happy not guilty!

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                    jim Breitfeller
                    Participant

                      Congrats!!!!

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                      jim Breitfeller
                      Participant

                        Congrats!!!!

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                        JuleFL
                        Participant

                          I am so happy to hear of your success.  Please don't feel guilty – the trial did not work for my husband, but I am truly comforted to hear that others may be on their way to getting rid of this beast.  Keep up the good work!

                          Jule

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                          JuleFL
                          Participant

                            I am so happy to hear of your success.  Please don't feel guilty – the trial did not work for my husband, but I am truly comforted to hear that others may be on their way to getting rid of this beast.  Keep up the good work!

                            Jule

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                            ValinMtl
                            Participant

                              Absolutely delighted that you are responding to treatment.  It's wonderful to hear that both you and Jim are responding to treatment and puts a smile on my face…that you are winning the war against the beast.  I'm praying that I will be a responder to compassionate ipi but if not, well I will just have to keep on trying…knowing that there are responders to different drugs gives so much hope and encouragement to those looking for the right solution, don't feel guilty, celebrate. I love hearing from responders whether it be ipi, IL-2, B-RAF, temodar or whatever..it  keeps us informed. Val

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                              ValinMtl
                              Participant

                                Absolutely delighted that you are responding to treatment.  It's wonderful to hear that both you and Jim are responding to treatment and puts a smile on my face…that you are winning the war against the beast.  I'm praying that I will be a responder to compassionate ipi but if not, well I will just have to keep on trying…knowing that there are responders to different drugs gives so much hope and encouragement to those looking for the right solution, don't feel guilty, celebrate. I love hearing from responders whether it be ipi, IL-2, B-RAF, temodar or whatever..it  keeps us informed. Val

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                                Jim in Denver
                                Participant

                                  Hi David,

                                  Thanks for posting – I have been wondering how your scans went this week.  The results are very encouraging!  To have significant decrease in tumor size measured at 12 weeks shows a fairly rapid response, and bodes well fo you.  My rash and itch did not really come on strong until after the 4th infusion, but has been ferocious ever since.I am still looking for the right combination of lotion(s) to reduce the itch andf help me sleep at night, but benadryl seems to help.

                                  The combination of Ipi and Temador looks promising – a one/two punch.  Further research will doubtless team Ipi with other drugs, the obvious one being an Ipi/BRAF inhibitor combo.  There are regulatory and economic reasons why there are obstacles to putting together combination trials.  Lets hope that MRF puts sustained effort into facilitating more trials of combinations, like multiple targeted commbinations and systemic + targeted combinations.  Many leading researchers believe that drug combinations ("cocktails") hold great promise in fighting melanoma.

                                  Best Wishes,

                                  Jim

                                   

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                                  Jim in Denver
                                  Participant

                                    Hi David,

                                    Thanks for posting – I have been wondering how your scans went this week.  The results are very encouraging!  To have significant decrease in tumor size measured at 12 weeks shows a fairly rapid response, and bodes well fo you.  My rash and itch did not really come on strong until after the 4th infusion, but has been ferocious ever since.I am still looking for the right combination of lotion(s) to reduce the itch andf help me sleep at night, but benadryl seems to help.

                                    The combination of Ipi and Temador looks promising – a one/two punch.  Further research will doubtless team Ipi with other drugs, the obvious one being an Ipi/BRAF inhibitor combo.  There are regulatory and economic reasons why there are obstacles to putting together combination trials.  Lets hope that MRF puts sustained effort into facilitating more trials of combinations, like multiple targeted commbinations and systemic + targeted combinations.  Many leading researchers believe that drug combinations ("cocktails") hold great promise in fighting melanoma.

                                    Best Wishes,

                                    Jim

                                     

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                                    bill58
                                    Participant

                                      Contrats on the encouraging news.

                                      We all want to hear about stories like yours.

                                      I hear that the rash is a good sing that your body is responding to Ipi.

                                      Don't feel regret for those who have not been responding lately.  We need stories like yours to help us make it through our temporary setbacks until we can get a few encouraging words of good news that things are shrinking and looking better.

                                      Enjoy the day.  It is your special day.  May you continue to have many, many, many more.

                                      Bill

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                                      bill58
                                      Participant

                                        Contrats on the encouraging news.

                                        We all want to hear about stories like yours.

                                        I hear that the rash is a good sing that your body is responding to Ipi.

                                        Don't feel regret for those who have not been responding lately.  We need stories like yours to help us make it through our temporary setbacks until we can get a few encouraging words of good news that things are shrinking and looking better.

                                        Enjoy the day.  It is your special day.  May you continue to have many, many, many more.

                                        Bill

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                                        skysar
                                        Participant

                                          David:

                                          Congratulations!  I am also enrolled in the ipi/temodar trail at MDA.  I have a treatment scheduled for 11/10 and then scans scheduled at the end of the month.

                                          I am also having a lot of itching.  The zyrtec seems to help somewhat and it seems to get bad at night.  Mostly arms, legs, and groin area.  I use Sarna Original and that seems to help.  

                                          I indicated in one of my replies to Jim in Denver that my Eosinophils are really high.  Dr. Patrick Hwu said it might be a good thing due to the fact the body might be attacking.  Do you keep track of your lab results?

                                          Again, great news!

                                           

                                          Sue

                                          Hotlanta

                                           

                                           

                                           

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                                          skysar
                                          Participant

                                            David:

                                            Congratulations!  I am also enrolled in the ipi/temodar trail at MDA.  I have a treatment scheduled for 11/10 and then scans scheduled at the end of the month.

                                            I am also having a lot of itching.  The zyrtec seems to help somewhat and it seems to get bad at night.  Mostly arms, legs, and groin area.  I use Sarna Original and that seems to help.  

                                            I indicated in one of my replies to Jim in Denver that my Eosinophils are really high.  Dr. Patrick Hwu said it might be a good thing due to the fact the body might be attacking.  Do you keep track of your lab results?

                                            Again, great news!

                                             

                                            Sue

                                            Hotlanta

                                             

                                             

                                             

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                                            Sharyn
                                            Participant

                                              Great news, David! And be proud of your response! I'm on compassionate use ipi, and will have my 3rd infusion on Thurs. I have had no side effects yet, no itching, no rash, no diarrhea (except what was brought on by what I ate). I'm wondering if my lack of side effects means I'm not responding. I have a 3cm tumor on my back that shows no change whatsoever, or maybe I'm expecting too much too soon. Scans are in early Dec, so we'll see then.

                                              Congratulations on your wonderful report! Keep it up!

                                              Hugs

                                              Sharyn, Stage IV

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                                              Sharyn
                                              Participant

                                                Great news, David! And be proud of your response! I'm on compassionate use ipi, and will have my 3rd infusion on Thurs. I have had no side effects yet, no itching, no rash, no diarrhea (except what was brought on by what I ate). I'm wondering if my lack of side effects means I'm not responding. I have a 3cm tumor on my back that shows no change whatsoever, or maybe I'm expecting too much too soon. Scans are in early Dec, so we'll see then.

                                                Congratulations on your wonderful report! Keep it up!

                                                Hugs

                                                Sharyn, Stage IV

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                                                Jim M.
                                                Participant

                                                  David,

                                                   That is awesome that you are a responder. It's wonderful to read because we all need hope to keep going. Keep it up and God bless,

                                                   Jim M.

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                                                  Jim M.
                                                  Participant

                                                    David,

                                                     That is awesome that you are a responder. It's wonderful to read because we all need hope to keep going. Keep it up and God bless,

                                                     Jim M.

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