› Forums › General Melanoma Community › In need of some help…. again
- This topic has 48 replies, 5 voices, and was last updated 8 years, 3 months ago by
kylez.
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- January 13, 2016 at 4:57 pm
I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search
I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding.
I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities.
The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital.
Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated
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- January 13, 2016 at 7:28 pm
Eva, I'm sad to read your news–but you obviously have the right attitude. I can tell you that I've visited with a number of institutions in recent months (MDA, Sloan, NYU). My impression is that for patients like us (having tried the existing approved treatments), the options are somewhat limited at present. A few thoughts based on my visits:
1. Consider a visit to MDA (and/or NIH) for a TIL harvest prior to changing treatments. This could provide a plan B down the road.
2. Consider a visit to the NIH just because you're young and otherwise healthy and you never know what they might be working on (not yet listed clinical trials, etc.).
3. Consider a second run on BRAF-MEK (not a long term solutions obviously).
4. Ipi/nivo as you noted.
It sounds like there will be some promising trials later this year (e.g., combining other drugs with Keytruda for those that have failed PD-1)–but there isn't much that is available right now.
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- January 13, 2016 at 7:28 pm
Eva, I'm sad to read your news–but you obviously have the right attitude. I can tell you that I've visited with a number of institutions in recent months (MDA, Sloan, NYU). My impression is that for patients like us (having tried the existing approved treatments), the options are somewhat limited at present. A few thoughts based on my visits:
1. Consider a visit to MDA (and/or NIH) for a TIL harvest prior to changing treatments. This could provide a plan B down the road.
2. Consider a visit to the NIH just because you're young and otherwise healthy and you never know what they might be working on (not yet listed clinical trials, etc.).
3. Consider a second run on BRAF-MEK (not a long term solutions obviously).
4. Ipi/nivo as you noted.
It sounds like there will be some promising trials later this year (e.g., combining other drugs with Keytruda for those that have failed PD-1)–but there isn't much that is available right now.
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- January 13, 2016 at 7:28 pm
Eva, I'm sad to read your news–but you obviously have the right attitude. I can tell you that I've visited with a number of institutions in recent months (MDA, Sloan, NYU). My impression is that for patients like us (having tried the existing approved treatments), the options are somewhat limited at present. A few thoughts based on my visits:
1. Consider a visit to MDA (and/or NIH) for a TIL harvest prior to changing treatments. This could provide a plan B down the road.
2. Consider a visit to the NIH just because you're young and otherwise healthy and you never know what they might be working on (not yet listed clinical trials, etc.).
3. Consider a second run on BRAF-MEK (not a long term solutions obviously).
4. Ipi/nivo as you noted.
It sounds like there will be some promising trials later this year (e.g., combining other drugs with Keytruda for those that have failed PD-1)–but there isn't much that is available right now.
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- January 13, 2016 at 8:31 pm
Thank you Mat. I feel bad having been away from the forum so long, but I'm feeling a bit like I'm grasping at straws here. I spent the afternoon reading the 1 report about combining PD-1/Ipi, which honestly doesn't say much- there's a higher likelyhood of grade 3-4 side effects, and it works better than Ipi by itself, but the numbers aren't that different from just the PD-1 group and they didn't follow it out to know the real long term survival. It's also done in people who had never been treated before, all of which makes me question things- for example is the extension in progression-free survival just due to the PD-1?. I also looked into the vaccine trial in Buffalo, and I would at least have to be off everything for 30 days in order to participate and I can't say that thrills me either. I like the idea of going to MDA/NIH, having some cells potentially collected and seeing what's up and coming for trials. I'll keep your ideas in mind and discuss with my husband.
Thank you
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- January 13, 2016 at 8:31 pm
Thank you Mat. I feel bad having been away from the forum so long, but I'm feeling a bit like I'm grasping at straws here. I spent the afternoon reading the 1 report about combining PD-1/Ipi, which honestly doesn't say much- there's a higher likelyhood of grade 3-4 side effects, and it works better than Ipi by itself, but the numbers aren't that different from just the PD-1 group and they didn't follow it out to know the real long term survival. It's also done in people who had never been treated before, all of which makes me question things- for example is the extension in progression-free survival just due to the PD-1?. I also looked into the vaccine trial in Buffalo, and I would at least have to be off everything for 30 days in order to participate and I can't say that thrills me either. I like the idea of going to MDA/NIH, having some cells potentially collected and seeing what's up and coming for trials. I'll keep your ideas in mind and discuss with my husband.
Thank you
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- January 13, 2016 at 8:31 pm
Thank you Mat. I feel bad having been away from the forum so long, but I'm feeling a bit like I'm grasping at straws here. I spent the afternoon reading the 1 report about combining PD-1/Ipi, which honestly doesn't say much- there's a higher likelyhood of grade 3-4 side effects, and it works better than Ipi by itself, but the numbers aren't that different from just the PD-1 group and they didn't follow it out to know the real long term survival. It's also done in people who had never been treated before, all of which makes me question things- for example is the extension in progression-free survival just due to the PD-1?. I also looked into the vaccine trial in Buffalo, and I would at least have to be off everything for 30 days in order to participate and I can't say that thrills me either. I like the idea of going to MDA/NIH, having some cells potentially collected and seeing what's up and coming for trials. I'll keep your ideas in mind and discuss with my husband.
Thank you
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- January 13, 2016 at 11:02 pm
Hi Eva, I would take a look at what they are doing at the Angeles clinic as far as trials and new combinations. Dr. Omid Hamid might have some other options for you. What I have read about vacinne trials other than t-vec, is that they have not been of much benefit. Best wishes!!! Ed
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- January 13, 2016 at 11:02 pm
Hi Eva, I would take a look at what they are doing at the Angeles clinic as far as trials and new combinations. Dr. Omid Hamid might have some other options for you. What I have read about vacinne trials other than t-vec, is that they have not been of much benefit. Best wishes!!! Ed
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- January 13, 2016 at 11:02 pm
Hi Eva, I would take a look at what they are doing at the Angeles clinic as far as trials and new combinations. Dr. Omid Hamid might have some other options for you. What I have read about vacinne trials other than t-vec, is that they have not been of much benefit. Best wishes!!! Ed
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- January 14, 2016 at 12:50 am
At Ed's suggestion, I looked at the clinical trials on the Angeles website. Of the listed trials, Weber (who I met with at NYU) seemed optimistic about OX-40–keeping in mind that it is a Phase I trial. This trial should be available at NYU at some point this year.
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- January 14, 2016 at 12:50 am
At Ed's suggestion, I looked at the clinical trials on the Angeles website. Of the listed trials, Weber (who I met with at NYU) seemed optimistic about OX-40–keeping in mind that it is a Phase I trial. This trial should be available at NYU at some point this year.
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- January 14, 2016 at 12:50 am
At Ed's suggestion, I looked at the clinical trials on the Angeles website. Of the listed trials, Weber (who I met with at NYU) seemed optimistic about OX-40–keeping in mind that it is a Phase I trial. This trial should be available at NYU at some point this year.
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- January 14, 2016 at 12:32 pm
Thank you, Mat and Ed, for your suggestions. The Angel Clinic is on the other side of the country from us and I don't see how we would make that work, but interesting that some of the trials may be available in NYC, which might be a possibility. I'll have to look more into those. Thank you so much for taking the time to give me suggestions! I really do appreciate it.
-Eva
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- January 14, 2016 at 12:32 pm
Thank you, Mat and Ed, for your suggestions. The Angel Clinic is on the other side of the country from us and I don't see how we would make that work, but interesting that some of the trials may be available in NYC, which might be a possibility. I'll have to look more into those. Thank you so much for taking the time to give me suggestions! I really do appreciate it.
-Eva
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- January 14, 2016 at 4:12 pm
Hi Eva, I was thinking that the top specialist seem to kind of connected, for example Dr. Michael Postow from Memorial Sloan Kettering was a guest speaker at one of the Angeles clinic presentations about New check point pathways. I was thinking that you might get some information from The Angeles Clinic and who in your area that they would recommend. Wishing the best!!! Ed
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- January 14, 2016 at 4:12 pm
Hi Eva, I was thinking that the top specialist seem to kind of connected, for example Dr. Michael Postow from Memorial Sloan Kettering was a guest speaker at one of the Angeles clinic presentations about New check point pathways. I was thinking that you might get some information from The Angeles Clinic and who in your area that they would recommend. Wishing the best!!! Ed
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- January 14, 2016 at 4:12 pm
Hi Eva, I was thinking that the top specialist seem to kind of connected, for example Dr. Michael Postow from Memorial Sloan Kettering was a guest speaker at one of the Angeles clinic presentations about New check point pathways. I was thinking that you might get some information from The Angeles Clinic and who in your area that they would recommend. Wishing the best!!! Ed
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- January 14, 2016 at 12:32 pm
Thank you, Mat and Ed, for your suggestions. The Angel Clinic is on the other side of the country from us and I don't see how we would make that work, but interesting that some of the trials may be available in NYC, which might be a possibility. I'll have to look more into those. Thank you so much for taking the time to give me suggestions! I really do appreciate it.
-Eva
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- January 14, 2016 at 10:29 pm
In the current round of Til trials at NIH is one specifically for those who have failed the PD-1. ( I believe it's opens to 64 people– not sure where they are today) There are many hurdles—from the initial blood sample (sent fedex), through to the actual cell infusion—any of which can disqualify you. There is also a washout period– which is scary in itself. It's a good option regardless if your mel cooperates, and might be worth starting the ball rolling–at least until you've had your consultation and get a sense of how good a candidate they feel you are.
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- January 15, 2016 at 11:44 am
Thank you- that's very interesting. We'll see if we can get down there soon to check things out. There's always a lot of hurdles with trials and yes, a washout period is very scarry, but until you have all the info, you just don't know. Thanks for the info.
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- January 15, 2016 at 11:44 am
Thank you- that's very interesting. We'll see if we can get down there soon to check things out. There's always a lot of hurdles with trials and yes, a washout period is very scarry, but until you have all the info, you just don't know. Thanks for the info.
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- January 15, 2016 at 11:44 am
Thank you- that's very interesting. We'll see if we can get down there soon to check things out. There's always a lot of hurdles with trials and yes, a washout period is very scarry, but until you have all the info, you just don't know. Thanks for the info.
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- January 14, 2016 at 10:29 pm
In the current round of Til trials at NIH is one specifically for those who have failed the PD-1. ( I believe it's opens to 64 people– not sure where they are today) There are many hurdles—from the initial blood sample (sent fedex), through to the actual cell infusion—any of which can disqualify you. There is also a washout period– which is scary in itself. It's a good option regardless if your mel cooperates, and might be worth starting the ball rolling–at least until you've had your consultation and get a sense of how good a candidate they feel you are.
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- January 14, 2016 at 10:29 pm
In the current round of Til trials at NIH is one specifically for those who have failed the PD-1. ( I believe it's opens to 64 people– not sure where they are today) There are many hurdles—from the initial blood sample (sent fedex), through to the actual cell infusion—any of which can disqualify you. There is also a washout period– which is scary in itself. It's a good option regardless if your mel cooperates, and might be worth starting the ball rolling–at least until you've had your consultation and get a sense of how good a candidate they feel you are.
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- January 16, 2016 at 5:55 am
Hi Eva,
If you are looking for clinical trials taking patients with brain mets that may be active, did any of your docs mention Abemaciclib which is a CDK4/CDK6 inhibitor? Whatever that means. The clinical trial NCT02308020 is specifically for patients w/brain mets.
Another trial taking melanoma patients w/brain mets is NCT02038218, the drug is '4-Demethyl-4-cholestryloxycarbonylpenclomedine'.
I hope the Gamma Knife did its job.
– Kyle
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- January 16, 2016 at 5:55 am
Hi Eva,
If you are looking for clinical trials taking patients with brain mets that may be active, did any of your docs mention Abemaciclib which is a CDK4/CDK6 inhibitor? Whatever that means. The clinical trial NCT02308020 is specifically for patients w/brain mets.
Another trial taking melanoma patients w/brain mets is NCT02038218, the drug is '4-Demethyl-4-cholestryloxycarbonylpenclomedine'.
I hope the Gamma Knife did its job.
– Kyle
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- January 16, 2016 at 5:55 am
Hi Eva,
If you are looking for clinical trials taking patients with brain mets that may be active, did any of your docs mention Abemaciclib which is a CDK4/CDK6 inhibitor? Whatever that means. The clinical trial NCT02308020 is specifically for patients w/brain mets.
Another trial taking melanoma patients w/brain mets is NCT02038218, the drug is '4-Demethyl-4-cholestryloxycarbonylpenclomedine'.
I hope the Gamma Knife did its job.
– Kyle
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- January 16, 2016 at 12:39 pm
Thanks Kyle!
I took a look at both of these- the second one looks like it would be prohibitive from a travel standpoint, but I can't tell where the first is offered. It looks like something that could be useful to me, but only if I can figure out where it's being offered. Do you know?
I hope the gamma knife did it's job as well. It's not the most plesant experience but has always worked well for me in the past.
-Eva
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- January 16, 2016 at 12:39 pm
Thanks Kyle!
I took a look at both of these- the second one looks like it would be prohibitive from a travel standpoint, but I can't tell where the first is offered. It looks like something that could be useful to me, but only if I can figure out where it's being offered. Do you know?
I hope the gamma knife did it's job as well. It's not the most plesant experience but has always worked well for me in the past.
-Eva
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- January 16, 2016 at 12:39 pm
Thanks Kyle!
I took a look at both of these- the second one looks like it would be prohibitive from a travel standpoint, but I can't tell where the first is offered. It looks like something that could be useful to me, but only if I can figure out where it's being offered. Do you know?
I hope the gamma knife did it's job as well. It's not the most plesant experience but has always worked well for me in the past.
-Eva
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- January 16, 2016 at 2:50 pm
Click on the link that Kyle gave you then scroll down near the bottom left side of page it states " 44 trail locations" click on that and it will list out all the hospitals and phone #'s. It shows 2 new york locations one being memorial sloan kettering. Hope you get in!!!! Ed
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- January 16, 2016 at 2:50 pm
Click on the link that Kyle gave you then scroll down near the bottom left side of page it states " 44 trail locations" click on that and it will list out all the hospitals and phone #'s. It shows 2 new york locations one being memorial sloan kettering. Hope you get in!!!! Ed
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- January 16, 2016 at 2:50 pm
Click on the link that Kyle gave you then scroll down near the bottom left side of page it states " 44 trail locations" click on that and it will list out all the hospitals and phone #'s. It shows 2 new york locations one being memorial sloan kettering. Hope you get in!!!! Ed
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- January 16, 2016 at 5:48 pm
Eva,
This might be another one, for a drug called WP1066, but it is geographically distant, at MDA. https://clinicaltrials.gov/ct2/show/study/NCT01904123
I tried the MPIP clinical trial finder a few years ago when I couldn't find anything I qualified for. A nurse does legwork trying to find qualifying trials. The results they returned had some stuff I would not have found otherwise. The trial finder page is here, https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial
– Kyle
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- January 16, 2016 at 5:48 pm
Eva,
This might be another one, for a drug called WP1066, but it is geographically distant, at MDA. https://clinicaltrials.gov/ct2/show/study/NCT01904123
I tried the MPIP clinical trial finder a few years ago when I couldn't find anything I qualified for. A nurse does legwork trying to find qualifying trials. The results they returned had some stuff I would not have found otherwise. The trial finder page is here, https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial
– Kyle
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- January 16, 2016 at 5:48 pm
Eva,
This might be another one, for a drug called WP1066, but it is geographically distant, at MDA. https://clinicaltrials.gov/ct2/show/study/NCT01904123
I tried the MPIP clinical trial finder a few years ago when I couldn't find anything I qualified for. A nurse does legwork trying to find qualifying trials. The results they returned had some stuff I would not have found otherwise. The trial finder page is here, https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial
– Kyle
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