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Scans washout periods etc.
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Scans washout periods etc.

› Forums › General Melanoma Community › Scans washout periods etc.

  • Post
    • April 29, 2013 at 1:54 pm
    lrkg1234
    Participant

      So, now I'm on the hunt for an anti-PD1 opening for Scott, just like everyone else. 

      Of course I'm leaving lots of messages and waiting for phone calls back. I just called Chicago and Vanderbilt.  If I were lucky enough to find an opening does anyone happen to know what the washout periods are for Yervoy and Temodor?

      If you are trying to get into a trial how long will they consider your scans valid before they want another?

      So, now I'm on the hunt for an anti-PD1 opening for Scott, just like everyone else. 

      Of course I'm leaving lots of messages and waiting for phone calls back. I just called Chicago and Vanderbilt.  If I were lucky enough to find an opening does anyone happen to know what the washout periods are for Yervoy and Temodor?

      If you are trying to get into a trial how long will they consider your scans valid before they want another?

      Scott needs official scans for both the brain and the entire body in about 2 weeks and we are trying to time it right.  He had a kidney stone this past week and had an "unofficial " abdominal scan that showed the IPI to be partially effective, but not good enough.  Of course if the brain mets are not cleared up then trials are not an option.

      We are traveling to MD Anderson in a few weeks and were going to wait and get him scanned there. They may have more ideas for treatment but, if there is an Anti PD-1 trial in the area that would be a better option.  It would be much more affordable to drive than fly. 

      He has already had Dasatinib, IL-2, Yervoy and now Temodor.  I don't know what else there is.

      This whole thing is stressful, but isn't it worse between treatments?  Deciding what route to take is mind bending.  So many things to think of when you are not thinking straight anyway.

    Viewing 5 reply threads
    • Replies
        • April 29, 2013 at 2:19 pm
        Phil S
        Participant
          Lisa, How is Scott feeling, we have been thinking of you both! Call Sarah Cannon in Nashville, they have interesting trials. Usually the scans can’t be over 30 days old for a trial, sound like you are moving in the right direction. Keep us posted, God Bless, Valerie (Phil’s wife)
            • April 29, 2013 at 5:10 pm
            lrkg1234
            Participant

              Hi Valerie,

              Scott is OK.  His spirits are always good, but his poor body is tired.  Not sure of the exact cause, but one of those meds is exhausting him.  Luckily his pain is under control.   In a couple of weeks he will get a scan, probably at MD Anderson, we are going to go down there for an appointment.   It will be 4 weeks then since his last IPI and several weeks since his whole brain radiation.

              I think of how well Phil did with the WBR and it gives me hope.

              Thanks for the useful info.  I just spoke with a nurse at Vanderbilt.  I made an appointment for him on May 29th to get on the radar for one of the PD-1 trials there.  So, now I know he has to be off the Temodor for 4 weeks, have brain mets under control for 4 weeks.  You also have to show disease progression 6 weeks post IPI.  Hopefully it all works out.  It would be so wondeful for the Anti PD1 drugs to be FDA approved and everyone could have access.

              PM me and let me know what is going on with you guys.  Hope all is well and that Phil is feeling OK.   

              Thinking of you both.

              Lisa

              • April 29, 2013 at 5:10 pm
              lrkg1234
              Participant

                Hi Valerie,

                Scott is OK.  His spirits are always good, but his poor body is tired.  Not sure of the exact cause, but one of those meds is exhausting him.  Luckily his pain is under control.   In a couple of weeks he will get a scan, probably at MD Anderson, we are going to go down there for an appointment.   It will be 4 weeks then since his last IPI and several weeks since his whole brain radiation.

                I think of how well Phil did with the WBR and it gives me hope.

                Thanks for the useful info.  I just spoke with a nurse at Vanderbilt.  I made an appointment for him on May 29th to get on the radar for one of the PD-1 trials there.  So, now I know he has to be off the Temodor for 4 weeks, have brain mets under control for 4 weeks.  You also have to show disease progression 6 weeks post IPI.  Hopefully it all works out.  It would be so wondeful for the Anti PD1 drugs to be FDA approved and everyone could have access.

                PM me and let me know what is going on with you guys.  Hope all is well and that Phil is feeling OK.   

                Thinking of you both.

                Lisa

                • April 29, 2013 at 5:10 pm
                lrkg1234
                Participant

                  Hi Valerie,

                  Scott is OK.  His spirits are always good, but his poor body is tired.  Not sure of the exact cause, but one of those meds is exhausting him.  Luckily his pain is under control.   In a couple of weeks he will get a scan, probably at MD Anderson, we are going to go down there for an appointment.   It will be 4 weeks then since his last IPI and several weeks since his whole brain radiation.

                  I think of how well Phil did with the WBR and it gives me hope.

                  Thanks for the useful info.  I just spoke with a nurse at Vanderbilt.  I made an appointment for him on May 29th to get on the radar for one of the PD-1 trials there.  So, now I know he has to be off the Temodor for 4 weeks, have brain mets under control for 4 weeks.  You also have to show disease progression 6 weeks post IPI.  Hopefully it all works out.  It would be so wondeful for the Anti PD1 drugs to be FDA approved and everyone could have access.

                  PM me and let me know what is going on with you guys.  Hope all is well and that Phil is feeling OK.   

                  Thinking of you both.

                  Lisa

                • April 29, 2013 at 2:19 pm
                Phil S
                Participant
                  Lisa, How is Scott feeling, we have been thinking of you both! Call Sarah Cannon in Nashville, they have interesting trials. Usually the scans can’t be over 30 days old for a trial, sound like you are moving in the right direction. Keep us posted, God Bless, Valerie (Phil’s wife)
                  • April 29, 2013 at 2:19 pm
                  Phil S
                  Participant
                    Lisa, How is Scott feeling, we have been thinking of you both! Call Sarah Cannon in Nashville, they have interesting trials. Usually the scans can’t be over 30 days old for a trial, sound like you are moving in the right direction. Keep us posted, God Bless, Valerie (Phil’s wife)
                    • April 29, 2013 at 4:03 pm
                    awillett1991
                    Participant

                      I am signing papers at Vanderbilt and finishing the testing this week hoping to get into Merck's ANTI-PD1  trial, I don't know what their status is on openings.  You are right – there are alot of timing issues.  I know there is a 28 day washout period for this – 28 days from last treatment to start of trial drug. I don't have all the exact criteria.

                      Also brain has to be stable for 4 weeks prior to submitting for the trial.  The rest of my scans will be less than 3 weeks old when submitted.  As far as other rumors about places maybe MSK, Los Angeles Clinic or somewhere in Arizona has spots but basically you must call around – clinical trials.gov is outdated as far as openings but i would believe the list of who has the trials is correct.  

                      As someone else mentioned, Catherine Poole at MIF is an excellent resource. Good Luck!

                        • April 29, 2013 at 4:57 pm
                        lrkg1234
                        Participant

                          Hi,

                          Just wanted to let you know I'm rooting for you to get into your trial in Nashville.  My husband has an appointment with Dr. Puzanov on May 29th to be "on the radar" for one of those trials. 

                          So many timing issues and hoops to jump through, sounds like you are close. 

                          Good Luck!  Lisa

                          • April 29, 2013 at 6:33 pm
                          awillett1991
                          Participant
                            Thanks – it’s all in God’s hands anyway. I’m hoping your timing works out. Dang melanoma! Hate it! Amy
                            • April 29, 2013 at 6:33 pm
                            awillett1991
                            Participant
                              Thanks – it’s all in God’s hands anyway. I’m hoping your timing works out. Dang melanoma! Hate it! Amy
                              • April 29, 2013 at 6:33 pm
                              awillett1991
                              Participant
                                Thanks – it’s all in God’s hands anyway. I’m hoping your timing works out. Dang melanoma! Hate it! Amy
                                • April 29, 2013 at 4:57 pm
                                lrkg1234
                                Participant

                                  Hi,

                                  Just wanted to let you know I'm rooting for you to get into your trial in Nashville.  My husband has an appointment with Dr. Puzanov on May 29th to be "on the radar" for one of those trials. 

                                  So many timing issues and hoops to jump through, sounds like you are close. 

                                  Good Luck!  Lisa

                                  • April 29, 2013 at 4:57 pm
                                  lrkg1234
                                  Participant

                                    Hi,

                                    Just wanted to let you know I'm rooting for you to get into your trial in Nashville.  My husband has an appointment with Dr. Puzanov on May 29th to be "on the radar" for one of those trials. 

                                    So many timing issues and hoops to jump through, sounds like you are close. 

                                    Good Luck!  Lisa

                                  • April 29, 2013 at 4:03 pm
                                  awillett1991
                                  Participant

                                    I am signing papers at Vanderbilt and finishing the testing this week hoping to get into Merck's ANTI-PD1  trial, I don't know what their status is on openings.  You are right – there are alot of timing issues.  I know there is a 28 day washout period for this – 28 days from last treatment to start of trial drug. I don't have all the exact criteria.

                                    Also brain has to be stable for 4 weeks prior to submitting for the trial.  The rest of my scans will be less than 3 weeks old when submitted.  As far as other rumors about places maybe MSK, Los Angeles Clinic or somewhere in Arizona has spots but basically you must call around – clinical trials.gov is outdated as far as openings but i would believe the list of who has the trials is correct.  

                                    As someone else mentioned, Catherine Poole at MIF is an excellent resource. Good Luck!

                                    • April 29, 2013 at 4:03 pm
                                    awillett1991
                                    Participant

                                      I am signing papers at Vanderbilt and finishing the testing this week hoping to get into Merck's ANTI-PD1  trial, I don't know what their status is on openings.  You are right – there are alot of timing issues.  I know there is a 28 day washout period for this – 28 days from last treatment to start of trial drug. I don't have all the exact criteria.

                                      Also brain has to be stable for 4 weeks prior to submitting for the trial.  The rest of my scans will be less than 3 weeks old when submitted.  As far as other rumors about places maybe MSK, Los Angeles Clinic or somewhere in Arizona has spots but basically you must call around – clinical trials.gov is outdated as far as openings but i would believe the list of who has the trials is correct.  

                                      As someone else mentioned, Catherine Poole at MIF is an excellent resource. Good Luck!

                                  Viewing 5 reply threads
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