› Forums › General Melanoma Community › Anti-PD1 Trial at Sloan
- This topic has 18 replies, 4 voices, and was last updated 13 years, 1 month ago by
Josh.
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- January 7, 2013 at 4:13 pm
I've been a patient at Sloan for over 2 years. Tomorrow I meet with one of the trial doctors to find out about starting the anti-pd1 trial. I finished my last dose of ipi Nov 27th. Scans Dec 18th showed a lymph node still growing (I had surgery Oct 4th to remove part of my small intestine but they couldn't get this node).
I've been a patient at Sloan for over 2 years. Tomorrow I meet with one of the trial doctors to find out about starting the anti-pd1 trial. I finished my last dose of ipi Nov 27th. Scans Dec 18th showed a lymph node still growing (I had surgery Oct 4th to remove part of my small intestine but they couldn't get this node).
I did Zelboraf May-Sept and Ipi Sept-Nov. Just wondering what questions I should be asking when I go in? How soon do you think they would start the trial? I know there is generally paperwork to fill out and blood work and scans. I did just have a Brain MRI Dec 7th (which was clear) and CT scans Dec 18th – so hopefully those are within the window and I don't have to have them again so quickly!
Also, anyone out there currently in Sloan's trial? Thoughts/Comments?
Thanks,
Erin
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- January 7, 2013 at 9:22 pm
Hey Erin,
I'm currently on Sloan's Merck anti pd-1 trial. My recollection is that starting the trial was a fairly quick process. I know you need 30 days "clean" from your last drug treatment, which it sounds like you already have. I could definitely be off on this one, but I think the scans need to be done within 28 days of starting the drug (which will probably mean that, once all is said and done, you'll have to be re-scanned , though again, I could be off on this). Unfortunately, Merck also requires a biopsy (though the results of biopsy have no relevance to whether or not you get into the trial). They'll just identify the easiest tumor to biopsy, and then will do it. For me, it was a needle biopsy in my groin, which is almost exactly as awesome as it sounds. Actually, it wasn't all that bad – didn't need to be knocked out or anything, only took a half hour (a half hour of me sweating quite a bit).
I'm not sure what questions you should be asking, though feel free to let me know if you have any questions. I go in for my 4th infusion later this week, and I really have no idea yet whether the drug is working. No side effect of note thus far. This seems like the best drug out there, so let's hope it works for us both.
Best of luck!
Josh
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- January 7, 2013 at 9:22 pm
Hey Erin,
I'm currently on Sloan's Merck anti pd-1 trial. My recollection is that starting the trial was a fairly quick process. I know you need 30 days "clean" from your last drug treatment, which it sounds like you already have. I could definitely be off on this one, but I think the scans need to be done within 28 days of starting the drug (which will probably mean that, once all is said and done, you'll have to be re-scanned , though again, I could be off on this). Unfortunately, Merck also requires a biopsy (though the results of biopsy have no relevance to whether or not you get into the trial). They'll just identify the easiest tumor to biopsy, and then will do it. For me, it was a needle biopsy in my groin, which is almost exactly as awesome as it sounds. Actually, it wasn't all that bad – didn't need to be knocked out or anything, only took a half hour (a half hour of me sweating quite a bit).
I'm not sure what questions you should be asking, though feel free to let me know if you have any questions. I go in for my 4th infusion later this week, and I really have no idea yet whether the drug is working. No side effect of note thus far. This seems like the best drug out there, so let's hope it works for us both.
Best of luck!
Josh
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- January 7, 2013 at 10:21 pm
How often do you get the PD-1 infusions? Do you need to have current mets to get into the trial? If not, would the previous biopsy done with a surgery in July work? What stage trial is it and are there different arms? You apparently know you are getting PD-1? Thanks, Josh. And success to you!!!
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- January 7, 2013 at 10:21 pm
How often do you get the PD-1 infusions? Do you need to have current mets to get into the trial? If not, would the previous biopsy done with a surgery in July work? What stage trial is it and are there different arms? You apparently know you are getting PD-1? Thanks, Josh. And success to you!!!
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- January 9, 2013 at 4:24 am
Hey buffcody,
The infusions are given every 3 weeks. I believe one must have current mets to get into the trial, although I'm not actually certain. I don't believe a bipsy done in July would suffice, although again, this is just me guessing. And yes, you definitely know you're getting the drug. I think this is a phase 1 study, although in what is very clearly becomming a pattern, I don't fully know. Any other questions that I won't know the answer to? 🙂
Best of luck!
Josh
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- January 9, 2013 at 4:24 am
Hey buffcody,
The infusions are given every 3 weeks. I believe one must have current mets to get into the trial, although I'm not actually certain. I don't believe a bipsy done in July would suffice, although again, this is just me guessing. And yes, you definitely know you're getting the drug. I think this is a phase 1 study, although in what is very clearly becomming a pattern, I don't fully know. Any other questions that I won't know the answer to? 🙂
Best of luck!
Josh
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- January 9, 2013 at 4:24 am
Hey buffcody,
The infusions are given every 3 weeks. I believe one must have current mets to get into the trial, although I'm not actually certain. I don't believe a bipsy done in July would suffice, although again, this is just me guessing. And yes, you definitely know you're getting the drug. I think this is a phase 1 study, although in what is very clearly becomming a pattern, I don't fully know. Any other questions that I won't know the answer to? 🙂
Best of luck!
Josh
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- January 7, 2013 at 10:21 pm
How often do you get the PD-1 infusions? Do you need to have current mets to get into the trial? If not, would the previous biopsy done with a surgery in July work? What stage trial is it and are there different arms? You apparently know you are getting PD-1? Thanks, Josh. And success to you!!!
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- January 8, 2013 at 1:44 am
Hey Josh – thanks for the note! I've been a patient at sloan for 2 years now…. and the last 2 times I tried to get in trials there things went pretty fast. I was thinking I might be 3 or 4 day past the mark for the brain MRI… bummer! But hopefully they get it all schedule quickly.
I've heard about the biopsy part but not sure they can get a biopsy? I was told originally the lymph node was too deep to biopsy without invasive surgery (and they still couldn't remove it when they took out part of my intestine). So not sure how they are going to get it? yikes! and yes um grown biopsy sounds totally awesome! lol! oh the things we go thru, right?
I'll let you know if I have more questions! I'm sure I will! I hear there are even less side effects than ipi. and yes here's hoping it works for both of us!!!
On a different note – have you tried any of the services at the integrated medicine center? I'm trying acupuncture there tomorrow afternoon! In hopes that it helps with my anxiety! I also downloaded their mind-body podcasts but haven't listened to them yet. I may also meet with them about nitration… just curious if anyone has used their services there?
Keep me posted on how things go!
Erin
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- January 8, 2013 at 1:44 am
Hey Josh – thanks for the note! I've been a patient at sloan for 2 years now…. and the last 2 times I tried to get in trials there things went pretty fast. I was thinking I might be 3 or 4 day past the mark for the brain MRI… bummer! But hopefully they get it all schedule quickly.
I've heard about the biopsy part but not sure they can get a biopsy? I was told originally the lymph node was too deep to biopsy without invasive surgery (and they still couldn't remove it when they took out part of my intestine). So not sure how they are going to get it? yikes! and yes um grown biopsy sounds totally awesome! lol! oh the things we go thru, right?
I'll let you know if I have more questions! I'm sure I will! I hear there are even less side effects than ipi. and yes here's hoping it works for both of us!!!
On a different note – have you tried any of the services at the integrated medicine center? I'm trying acupuncture there tomorrow afternoon! In hopes that it helps with my anxiety! I also downloaded their mind-body podcasts but haven't listened to them yet. I may also meet with them about nitration… just curious if anyone has used their services there?
Keep me posted on how things go!
Erin
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- January 9, 2013 at 4:59 am
Hey Erin,
For this particular trial, since nothing is contingent upon the biopsy, they seem pretty good about going after the very easiest biopsy, so if you have any other smaller mets in easier-to-reach places, hopefully they'll go for those. If not, then that's probably good as well since who the hell wants to have any mets even if they are small and easy to reach?
I've personally had no side effects other than feeling tired the night after each of the infusions. Maybe a little itchy skin as well, but nothing compared to the ippy-itch.
I've never checked out their integrated medicine center. Didn't even know they had one. Good luck with the acupuncture, and even better luck with the drug!
Josh
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- January 9, 2013 at 4:59 am
Hey Erin,
For this particular trial, since nothing is contingent upon the biopsy, they seem pretty good about going after the very easiest biopsy, so if you have any other smaller mets in easier-to-reach places, hopefully they'll go for those. If not, then that's probably good as well since who the hell wants to have any mets even if they are small and easy to reach?
I've personally had no side effects other than feeling tired the night after each of the infusions. Maybe a little itchy skin as well, but nothing compared to the ippy-itch.
I've never checked out their integrated medicine center. Didn't even know they had one. Good luck with the acupuncture, and even better luck with the drug!
Josh
-
- January 9, 2013 at 4:59 am
Hey Erin,
For this particular trial, since nothing is contingent upon the biopsy, they seem pretty good about going after the very easiest biopsy, so if you have any other smaller mets in easier-to-reach places, hopefully they'll go for those. If not, then that's probably good as well since who the hell wants to have any mets even if they are small and easy to reach?
I've personally had no side effects other than feeling tired the night after each of the infusions. Maybe a little itchy skin as well, but nothing compared to the ippy-itch.
I've never checked out their integrated medicine center. Didn't even know they had one. Good luck with the acupuncture, and even better luck with the drug!
Josh
-
- January 8, 2013 at 1:44 am
Hey Josh – thanks for the note! I've been a patient at sloan for 2 years now…. and the last 2 times I tried to get in trials there things went pretty fast. I was thinking I might be 3 or 4 day past the mark for the brain MRI… bummer! But hopefully they get it all schedule quickly.
I've heard about the biopsy part but not sure they can get a biopsy? I was told originally the lymph node was too deep to biopsy without invasive surgery (and they still couldn't remove it when they took out part of my intestine). So not sure how they are going to get it? yikes! and yes um grown biopsy sounds totally awesome! lol! oh the things we go thru, right?
I'll let you know if I have more questions! I'm sure I will! I hear there are even less side effects than ipi. and yes here's hoping it works for both of us!!!
On a different note – have you tried any of the services at the integrated medicine center? I'm trying acupuncture there tomorrow afternoon! In hopes that it helps with my anxiety! I also downloaded their mind-body podcasts but haven't listened to them yet. I may also meet with them about nitration… just curious if anyone has used their services there?
Keep me posted on how things go!
Erin
-
- January 7, 2013 at 9:22 pm
Hey Erin,
I'm currently on Sloan's Merck anti pd-1 trial. My recollection is that starting the trial was a fairly quick process. I know you need 30 days "clean" from your last drug treatment, which it sounds like you already have. I could definitely be off on this one, but I think the scans need to be done within 28 days of starting the drug (which will probably mean that, once all is said and done, you'll have to be re-scanned , though again, I could be off on this). Unfortunately, Merck also requires a biopsy (though the results of biopsy have no relevance to whether or not you get into the trial). They'll just identify the easiest tumor to biopsy, and then will do it. For me, it was a needle biopsy in my groin, which is almost exactly as awesome as it sounds. Actually, it wasn't all that bad – didn't need to be knocked out or anything, only took a half hour (a half hour of me sweating quite a bit).
I'm not sure what questions you should be asking, though feel free to let me know if you have any questions. I go in for my 4th infusion later this week, and I really have no idea yet whether the drug is working. No side effect of note thus far. This seems like the best drug out there, so let's hope it works for us both.
Best of luck!
Josh
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