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scared re: IPI scan schedule

Forums General Melanoma Community scared re: IPI scan schedule

  • Post
    Terra
    Participant

      Hi, Derek and I are at the hospital getting his blood, ECG, etc completed for the extended use ipi trial in Toronto at PMH.  He has his first injection on Friday. 

      We talked with the nurse today and she confirmed that once he starts ipi he will NOT be rescanned until he is competely finished with the 4 treatments. 

      Hi, Derek and I are at the hospital getting his blood, ECG, etc completed for the extended use ipi trial in Toronto at PMH.  He has his first injection on Friday. 

      We talked with the nurse today and she confirmed that once he starts ipi he will NOT be rescanned until he is competely finished with the 4 treatments. 

      That is 3 months away, I am really concerned about this – it seems to me many of you have had scans before the trt is finished and some people have even been taken off the trial because of new mets developing during treatment.  Any comments.

       

      Thank-you 

    Viewing 7 reply threads
    • Replies
        Jerry from Cape Cod
        Participant

          What is the treatment schedule. Usually week 1, week 4, week 7 and week 10.  with scans following shortly after the last infusion. Also a lo depends on the  patient's current stage.  Looking at your profile Derek is stage 3. 

          Jerry from Cape Cod

          Jerry from Cape Cod
          Participant

            What is the treatment schedule. Usually week 1, week 4, week 7 and week 10.  with scans following shortly after the last infusion. Also a lo depends on the  patient's current stage.  Looking at your profile Derek is stage 3. 

            Jerry from Cape Cod

            ValinMtl
            Participant

              Hi Terra

              Normally, the scans after the 4 treatments which are spread 3 weeks apart.  I did this the first time round September to early November with scan in November.

              The 2nd round was differently, simply because my lymph node grew and became infected and I HAD to have a scan to see what was causing the problem and then I was taken off the treatment.  The protocol they are offering you is the norm.   May this be the answer you and Derek are looking for.  Val, stage IV

                Terra
                Participant

                  Thank-you.  For some reason I thought people were scanned throughout like other treatments. 

                  Vermont_Donna
                  Participant

                    Dear Terra,

                    I did the Ipi treatment, starting 12/1/10 and ending in February 2011. I have written extensively here about how the treatments went and side effects but will recap briefly here:

                    Ipi is given as INFUSIONS….I had a mediport placed in my chest….why? because the veins in my arms are really difficult to access for blood draws and IV placement. The mediport was placed by a nurse practitioner in an inteventional radiology department several weeks before my Ipi treatment started.

                    The infusions are given three weeks apart, in an oncology chemo suite or floor. Blood pressure is monitored every 15 minutes (or it was for me), and labs are done first, and weight, as the dose I am guessing he will have is 3mk/kg, same as me. Previous trials had some people on 10mg/kg, but the side effects were brutal in those trials and my oncologist said that he had some patients who died from colitis which became so severe.The drug has to be prepared according to his weight, so things have to be done in order. I had an anti nausea drug and saline administered first, while waiting for the Ipi to be prepared. Nausea can be a side effect…and nausea is something I tend to experience anyways so I have two kinds of RX's here at home to take if I get hit with any bouts of nausea (and I did with this treatment). Sometimes I have had to wait up to 2 hours for the drug…..there are many reasons for the wait…the number of chemo patients being seen, if there are children receiving chemo…they go first, etc.

                    For the trial I was in I had a PET/CT combo (I almost always have the combo scans) and a brain MRI..these were done a few weeks before starting Ipi. I was NOT RESCANNED until two weeks after my fourth infusion and then 12 weeks after that. My first scans done two weeks after the fourth infusion showed ALOT of inflammation all over my right leg where we knew the melanoma was. My sub q melanomas did become visibly inflammed and certainly to palpate them on my leg they were bigger……my cutaneous tumors, grew slightly bigger, then ALL OF THEM REABSORBED and rather quickly…..by the 2 week checkup after the fourth infusion I only had purple spots where all my melanomas were, and 12 weeks after I had NO VISIBLE SIGNS of where the melanoma was.

                    As far as side effects, I have explained what I had in other posts…if you cant find those posts, let me know……Good luck and I hope your husband is a responder!

                    Vermont_Donna, stage 3a, now NED due to Yervoy (Ipi)

                    ValinMtl
                    Participant

                      Something to note. Donna mentions she had a CT/PET and MRI brain scan. I was only give a CT scan for the trial in the fall in Canada..I did get a PET scan not long after because Quebec and Alberta do  allow those and my doctor requested one. The remainder of the provinces from what I am told have to put an application into their system for approval (speak to your doctor). What I received as far as a brain scan was a CT scan..I have recently discovered that brain MRIs are more specific so once you are completed your treatment I would 'request' one of those. As I sit here anxiously waiting for that result!!   Best, Val xx

                      ValinMtl
                      Participant

                        Something to note. Donna mentions she had a CT/PET and MRI brain scan. I was only give a CT scan for the trial in the fall in Canada..I did get a PET scan not long after because Quebec and Alberta do  allow those and my doctor requested one. The remainder of the provinces from what I am told have to put an application into their system for approval (speak to your doctor). What I received as far as a brain scan was a CT scan..I have recently discovered that brain MRIs are more specific so once you are completed your treatment I would 'request' one of those. As I sit here anxiously waiting for that result!!   Best, Val xx

                        Vermont_Donna
                        Participant

                          Dear Terra,

                          I did the Ipi treatment, starting 12/1/10 and ending in February 2011. I have written extensively here about how the treatments went and side effects but will recap briefly here:

                          Ipi is given as INFUSIONS….I had a mediport placed in my chest….why? because the veins in my arms are really difficult to access for blood draws and IV placement. The mediport was placed by a nurse practitioner in an inteventional radiology department several weeks before my Ipi treatment started.

                          The infusions are given three weeks apart, in an oncology chemo suite or floor. Blood pressure is monitored every 15 minutes (or it was for me), and labs are done first, and weight, as the dose I am guessing he will have is 3mk/kg, same as me. Previous trials had some people on 10mg/kg, but the side effects were brutal in those trials and my oncologist said that he had some patients who died from colitis which became so severe.The drug has to be prepared according to his weight, so things have to be done in order. I had an anti nausea drug and saline administered first, while waiting for the Ipi to be prepared. Nausea can be a side effect…and nausea is something I tend to experience anyways so I have two kinds of RX's here at home to take if I get hit with any bouts of nausea (and I did with this treatment). Sometimes I have had to wait up to 2 hours for the drug…..there are many reasons for the wait…the number of chemo patients being seen, if there are children receiving chemo…they go first, etc.

                          For the trial I was in I had a PET/CT combo (I almost always have the combo scans) and a brain MRI..these were done a few weeks before starting Ipi. I was NOT RESCANNED until two weeks after my fourth infusion and then 12 weeks after that. My first scans done two weeks after the fourth infusion showed ALOT of inflammation all over my right leg where we knew the melanoma was. My sub q melanomas did become visibly inflammed and certainly to palpate them on my leg they were bigger……my cutaneous tumors, grew slightly bigger, then ALL OF THEM REABSORBED and rather quickly…..by the 2 week checkup after the fourth infusion I only had purple spots where all my melanomas were, and 12 weeks after I had NO VISIBLE SIGNS of where the melanoma was.

                          As far as side effects, I have explained what I had in other posts…if you cant find those posts, let me know……Good luck and I hope your husband is a responder!

                          Vermont_Donna, stage 3a, now NED due to Yervoy (Ipi)

                          Terra
                          Participant

                            Thank-you.  For some reason I thought people were scanned throughout like other treatments. 

                          ValinMtl
                          Participant

                            Hi Terra

                            Normally, the scans after the 4 treatments which are spread 3 weeks apart.  I did this the first time round September to early November with scan in November.

                            The 2nd round was differently, simply because my lymph node grew and became infected and I HAD to have a scan to see what was causing the problem and then I was taken off the treatment.  The protocol they are offering you is the norm.   May this be the answer you and Derek are looking for.  Val, stage IV

                            FormerCaregiver
                            Participant

                              I am not sure why Derek won't be rescanned until he is finished with 4 treatments, but it
                              is probably just due to the way that the company has designed the trial. However, if new
                              symptoms appear they will need to be evaluated. Therefore, it is best to be aware of
                              anything that doesn't seem right and then discussing your concerns with Derek's
                              oncologist.

                              Best wishes

                              Frank from Australia

                                Terra
                                Participant

                                  Thank-you for all your responses to my questions.  I am full of them.  First ipi IV on Friday.  WIsh us luck.

                                  FormerCaregiver
                                  Participant

                                    Terra, I would just like to wish you and Derek the best of luck for Friday. I encourage
                                    you to keep asking questions, and to demand good answers. I will try to help if I can.

                                    Please don't hesitate to ask for prayers if you feel that they might be helpful.

                                    Frank from Australia

                                    FormerCaregiver
                                    Participant

                                      Terra, I would just like to wish you and Derek the best of luck for Friday. I encourage
                                      you to keep asking questions, and to demand good answers. I will try to help if I can.

                                      Please don't hesitate to ask for prayers if you feel that they might be helpful.

                                      Frank from Australia

                                      Terra
                                      Participant

                                        Thank-you for all your responses to my questions.  I am full of them.  First ipi IV on Friday.  WIsh us luck.

                                      FormerCaregiver
                                      Participant

                                        I am not sure why Derek won't be rescanned until he is finished with 4 treatments, but it
                                        is probably just due to the way that the company has designed the trial. However, if new
                                        symptoms appear they will need to be evaluated. Therefore, it is best to be aware of
                                        anything that doesn't seem right and then discussing your concerns with Derek's
                                        oncologist.

                                        Best wishes

                                        Frank from Australia

                                        emilypen
                                        Participant

                                          Hey Terra,

                                          Good Luck today! We were at PMH yesterday and signed the consents to start the IPI trial,

                                          Hopefully Jay will be able to start next week!

                                          Let me know how it goes. We'll be back in Toronto full time as of next weekend, so maybe we can meet for coffee next time you're in town.

                                           

                                          Hope all goes well.

                                           

                                          Emily

                                           

                                          emilypen
                                          Participant

                                            Hey Terra,

                                            Good Luck today! We were at PMH yesterday and signed the consents to start the IPI trial,

                                            Hopefully Jay will be able to start next week!

                                            Let me know how it goes. We'll be back in Toronto full time as of next weekend, so maybe we can meet for coffee next time you're in town.

                                             

                                            Hope all goes well.

                                             

                                            Emily

                                             

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