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- This topic has 9 replies, 2 voices, and was last updated 11 years, 3 months ago by
Owl.
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- January 25, 2013 at 5:43 am
So, my boyfriend has been trying to get into the Merk Pd-1 trial at UCLA , and were told once his scans were done, that the radiologist found something in the brain,and it needed to be compared to his previous mri's to make sure it wasn't something new. It took two weeks to get them the disk and for them to compare.
The doctor sent back an email saying the scans were compared and that if we could meet with him because ''We need to discuss the results and decide how to proceed.''
I'm very upset, since i was hoping for an all clear to start the drug…now it sounds like (to me) that it's not going to happen based on new brain lesions. any opinions on the wording of his email? Or are we probably disqualified?
I replied to the email asking straight out if we were disqualified, and i'm waiting on a response…
thanks- Amanda
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- January 25, 2013 at 10:10 am
Dear Amanda,
It is always hard to interpret or read between the lines of such words. I can so much understand your worries about the latest scan. But I learned never to make myself mad before I do not have the facts, easy to say, hard to realize. Please try to stay calm and if nothing works try to talk to the doctor on the phone, annoying often helps. Do you already have an appointment?
I can only talk for me and my husband, but the time of waiting is the worst. We always try to fill this time with nice things, go somewhere new and do some sightseeing, meet friends and families and do no not talk about melanoma too much. We did this during Yervoy treatment, and off course before any scan or date in the clinic.
My thaughts are with you,
Jenny
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- January 25, 2013 at 10:35 am
Thanks for the reply. Yes we have an appointment, and are meeting the dr. on monday. I've been trying for a while to get him into this trial, so it's just dissapointing the time we spent not being on any treatment in hopes of this trial. Yervoy was the first and only other drug my boyfriend had. It kept his mets stable for a few months, but nothing shrunk.
I'm hoping the dr. will have some options for us regardless, because his tumors are progressing. I always try to keep a positive attitude, and keep hope that we will find something that will shrink these little F-ers. My boyfriend was diagnosed straight to stage IV, no primary. His mother passed of the same disease. So sad.
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- January 25, 2013 at 7:28 pm
It would really be disappointing not to get into the trial. I keep my fingers crossed for you on monday because anti-pd1 is really more than a good option to get as a treatment.
I remember your story because our "boys" had Ipi treatment at almost the same time. For my husband Ipi worked partially very well, many mets, even in lung and testicle, have disappeared, but unfortunately some stayed stable and than increased after a while. We fought for a reinduction of Ipi but no chance at this point. Now he is on Zelboraf and we do not have any results if it works, he is struggling with side effects. The first Anti-PD1 trials (comparison with chemo) only start in Feb/Mar in Germany. It is only an option if Z fails and then there is still the Chemo arm he might end up in. Therefore I can really understand what your are going through.
Please keep us updated,
Jenny
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- January 25, 2013 at 7:28 pm
It would really be disappointing not to get into the trial. I keep my fingers crossed for you on monday because anti-pd1 is really more than a good option to get as a treatment.
I remember your story because our "boys" had Ipi treatment at almost the same time. For my husband Ipi worked partially very well, many mets, even in lung and testicle, have disappeared, but unfortunately some stayed stable and than increased after a while. We fought for a reinduction of Ipi but no chance at this point. Now he is on Zelboraf and we do not have any results if it works, he is struggling with side effects. The first Anti-PD1 trials (comparison with chemo) only start in Feb/Mar in Germany. It is only an option if Z fails and then there is still the Chemo arm he might end up in. Therefore I can really understand what your are going through.
Please keep us updated,
Jenny
-
- January 25, 2013 at 7:28 pm
It would really be disappointing not to get into the trial. I keep my fingers crossed for you on monday because anti-pd1 is really more than a good option to get as a treatment.
I remember your story because our "boys" had Ipi treatment at almost the same time. For my husband Ipi worked partially very well, many mets, even in lung and testicle, have disappeared, but unfortunately some stayed stable and than increased after a while. We fought for a reinduction of Ipi but no chance at this point. Now he is on Zelboraf and we do not have any results if it works, he is struggling with side effects. The first Anti-PD1 trials (comparison with chemo) only start in Feb/Mar in Germany. It is only an option if Z fails and then there is still the Chemo arm he might end up in. Therefore I can really understand what your are going through.
Please keep us updated,
Jenny
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- January 25, 2013 at 10:35 am
Thanks for the reply. Yes we have an appointment, and are meeting the dr. on monday. I've been trying for a while to get him into this trial, so it's just dissapointing the time we spent not being on any treatment in hopes of this trial. Yervoy was the first and only other drug my boyfriend had. It kept his mets stable for a few months, but nothing shrunk.
I'm hoping the dr. will have some options for us regardless, because his tumors are progressing. I always try to keep a positive attitude, and keep hope that we will find something that will shrink these little F-ers. My boyfriend was diagnosed straight to stage IV, no primary. His mother passed of the same disease. So sad.
-
- January 25, 2013 at 10:35 am
Thanks for the reply. Yes we have an appointment, and are meeting the dr. on monday. I've been trying for a while to get him into this trial, so it's just dissapointing the time we spent not being on any treatment in hopes of this trial. Yervoy was the first and only other drug my boyfriend had. It kept his mets stable for a few months, but nothing shrunk.
I'm hoping the dr. will have some options for us regardless, because his tumors are progressing. I always try to keep a positive attitude, and keep hope that we will find something that will shrink these little F-ers. My boyfriend was diagnosed straight to stage IV, no primary. His mother passed of the same disease. So sad.
-
- January 25, 2013 at 10:10 am
Dear Amanda,
It is always hard to interpret or read between the lines of such words. I can so much understand your worries about the latest scan. But I learned never to make myself mad before I do not have the facts, easy to say, hard to realize. Please try to stay calm and if nothing works try to talk to the doctor on the phone, annoying often helps. Do you already have an appointment?
I can only talk for me and my husband, but the time of waiting is the worst. We always try to fill this time with nice things, go somewhere new and do some sightseeing, meet friends and families and do no not talk about melanoma too much. We did this during Yervoy treatment, and off course before any scan or date in the clinic.
My thaughts are with you,
Jenny
-
- January 25, 2013 at 10:10 am
Dear Amanda,
It is always hard to interpret or read between the lines of such words. I can so much understand your worries about the latest scan. But I learned never to make myself mad before I do not have the facts, easy to say, hard to realize. Please try to stay calm and if nothing works try to talk to the doctor on the phone, annoying often helps. Do you already have an appointment?
I can only talk for me and my husband, but the time of waiting is the worst. We always try to fill this time with nice things, go somewhere new and do some sightseeing, meet friends and families and do no not talk about melanoma too much. We did this during Yervoy treatment, and off course before any scan or date in the clinic.
My thaughts are with you,
Jenny
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