scared re: IPI scan schedule

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)

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)

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

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

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, 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