› Forums › General Melanoma Community › Desperate need of a melanoma center
- This topic has 21 replies, 5 voices, and was last updated 12 years, 3 months ago by
kylez.
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- May 28, 2013 at 1:49 am
My mom has melanoma. It started in her nail bed 15 years ago. She was clean, then 2 yrs ago it showed in her lymph nodes. Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules. They were high dose radiated and gone. Then it showed in her lung 3 nodules. As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.
My mom has melanoma. It started in her nail bed 15 years ago. She was clean, then 2 yrs ago it showed in her lymph nodes. Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules. They were high dose radiated and gone. Then it showed in her lung 3 nodules. As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up. She went for her scans last week and we found out she has another two in her brain that are soo small, but now she has 3 lesions on her liver that are maybe 1 cm in size. She wants to get on anti pd 1 badly. At this time we are being treated at the melanoma center at Yale in Ct. If she can clean up the tumors in her brain and keep it clean for another eight weeks that would be good, although the only trial that is being offered is a randomized Anti Pd 1 trail with basic chemo. She wants nothing to do with general chemo. We are wondering if anyone knows or can suggest and Melanoma centers that we can research and maybe seek treatment. We are willing to travel and really would like to find a non randomized study. Any suggestions would be greatful.
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- May 28, 2013 at 2:02 am
Have you done a basic search at clinicaltrials.gov? There are also places you can call to help you find trials. However, it might not be as easy to find a trial with no randomized arm unless you get a phase 1 or phase 2 trial. Phase III will always have at least one other arm to assess efficacy against a known agent. The anti-pd1 stuff is being fast tracked and will hopefully be approved some time this year, but that doesn't help your mom now. You can start looking at a clinical trial finder on this site, too. http://www.melanoma.org/learn-more/melanoma-clinical-trials
Good luck on finding something!
Janner
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- May 28, 2013 at 3:28 am
No FDA approval looks likely until 2015 for BMS nivolumab/anti-PD1. I've seen this in multiple postings and articles, e.g. over at MIF. Here's a fairly current article saying the same thing, http://www.medscape.com/viewarticle/782105.
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- May 28, 2013 at 3:28 am
No FDA approval looks likely until 2015 for BMS nivolumab/anti-PD1. I've seen this in multiple postings and articles, e.g. over at MIF. Here's a fairly current article saying the same thing, http://www.medscape.com/viewarticle/782105.
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- May 28, 2013 at 3:28 am
No FDA approval looks likely until 2015 for BMS nivolumab/anti-PD1. I've seen this in multiple postings and articles, e.g. over at MIF. Here's a fairly current article saying the same thing, http://www.medscape.com/viewarticle/782105.
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- May 28, 2013 at 2:02 am
Have you done a basic search at clinicaltrials.gov? There are also places you can call to help you find trials. However, it might not be as easy to find a trial with no randomized arm unless you get a phase 1 or phase 2 trial. Phase III will always have at least one other arm to assess efficacy against a known agent. The anti-pd1 stuff is being fast tracked and will hopefully be approved some time this year, but that doesn't help your mom now. You can start looking at a clinical trial finder on this site, too. http://www.melanoma.org/learn-more/melanoma-clinical-trials
Good luck on finding something!
Janner
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- May 28, 2013 at 2:02 am
Have you done a basic search at clinicaltrials.gov? There are also places you can call to help you find trials. However, it might not be as easy to find a trial with no randomized arm unless you get a phase 1 or phase 2 trial. Phase III will always have at least one other arm to assess efficacy against a known agent. The anti-pd1 stuff is being fast tracked and will hopefully be approved some time this year, but that doesn't help your mom now. You can start looking at a clinical trial finder on this site, too. http://www.melanoma.org/learn-more/melanoma-clinical-trials
Good luck on finding something!
Janner
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- May 28, 2013 at 3:24 am
Hi. I'm sorry to hear about what your Mom and you are going through.
The MRF's clinical trial finder service is not a bad option and can be pretty thorough.
On your own you can search http://www.clinicaltrials.gov. There's, for example, a phase I trial combining BMS anti-PD1 with Yervoy — http://clinicaltrials.gov/ct2/show/NCT01024231. Do a search for "Search Term" nivolumab and "Condition" melanoma. I believe at least 2 of them (including the one above) do not have chemo arms.
You can search for another anti-PD1 drug from Merck, MK-3475. Change the "Search Term" from nivolumab to MK-3475. 2 trials should come up. One of them (phase 2) has a chemo arm but I believe it has a crossover from chemo to the anti-PD1 drug if chemo doesn't do anything. I also believe the anti-PD1 arm is twice as big as the chemo arm. Where do I get this info from? At the MIF board, see this post, http://www.z2systems.com/mif/viewtopic.php?f=54&t=34214&p=39799 … the poster, Catherine Poole, stays very well informed about current penings in various anti-PD1 trials, and welcomes email queries.
Hope this gives you a start or a next step.
– Kyle-
- May 28, 2013 at 4:52 am
Yes, Kyle is right. Catherine Poole at the Melanoma International Foundation keeps close tabs on anti-PD-1 trials. Email her at [email protected]
Last week, Dr. Keith Flaherty at Mass General in Boston told a friend of mine that they have a lot of anti-PD-1 trials going. You might check their web site or call the clinical trial coordinator.
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- May 28, 2013 at 4:52 am
Yes, Kyle is right. Catherine Poole at the Melanoma International Foundation keeps close tabs on anti-PD-1 trials. Email her at [email protected]
Last week, Dr. Keith Flaherty at Mass General in Boston told a friend of mine that they have a lot of anti-PD-1 trials going. You might check their web site or call the clinical trial coordinator.
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- May 28, 2013 at 4:52 am
Yes, Kyle is right. Catherine Poole at the Melanoma International Foundation keeps close tabs on anti-PD-1 trials. Email her at [email protected]
Last week, Dr. Keith Flaherty at Mass General in Boston told a friend of mine that they have a lot of anti-PD-1 trials going. You might check their web site or call the clinical trial coordinator.
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- May 28, 2013 at 3:24 am
Hi. I'm sorry to hear about what your Mom and you are going through.
The MRF's clinical trial finder service is not a bad option and can be pretty thorough.
On your own you can search http://www.clinicaltrials.gov. There's, for example, a phase I trial combining BMS anti-PD1 with Yervoy — http://clinicaltrials.gov/ct2/show/NCT01024231. Do a search for "Search Term" nivolumab and "Condition" melanoma. I believe at least 2 of them (including the one above) do not have chemo arms.
You can search for another anti-PD1 drug from Merck, MK-3475. Change the "Search Term" from nivolumab to MK-3475. 2 trials should come up. One of them (phase 2) has a chemo arm but I believe it has a crossover from chemo to the anti-PD1 drug if chemo doesn't do anything. I also believe the anti-PD1 arm is twice as big as the chemo arm. Where do I get this info from? At the MIF board, see this post, http://www.z2systems.com/mif/viewtopic.php?f=54&t=34214&p=39799 … the poster, Catherine Poole, stays very well informed about current penings in various anti-PD1 trials, and welcomes email queries.
Hope this gives you a start or a next step.
– Kyle -
- May 28, 2013 at 3:24 am
Hi. I'm sorry to hear about what your Mom and you are going through.
The MRF's clinical trial finder service is not a bad option and can be pretty thorough.
On your own you can search http://www.clinicaltrials.gov. There's, for example, a phase I trial combining BMS anti-PD1 with Yervoy — http://clinicaltrials.gov/ct2/show/NCT01024231. Do a search for "Search Term" nivolumab and "Condition" melanoma. I believe at least 2 of them (including the one above) do not have chemo arms.
You can search for another anti-PD1 drug from Merck, MK-3475. Change the "Search Term" from nivolumab to MK-3475. 2 trials should come up. One of them (phase 2) has a chemo arm but I believe it has a crossover from chemo to the anti-PD1 drug if chemo doesn't do anything. I also believe the anti-PD1 arm is twice as big as the chemo arm. Where do I get this info from? At the MIF board, see this post, http://www.z2systems.com/mif/viewtopic.php?f=54&t=34214&p=39799 … the poster, Catherine Poole, stays very well informed about current penings in various anti-PD1 trials, and welcomes email queries.
Hope this gives you a start or a next step.
– Kyle -
- May 28, 2013 at 11:43 am
I’m sorry to hear about your mom…UCLA (and a few others) just opened a PD-1 trial with no chemo arm…they are looking at a high dose vs. low dose, but everyone gets PD-1. They have 200 slots (i’ve heard), but as you know, the brain mets have to be stable. I’m assuming she’s not b-RAF+? Have they considered Temador? I know a few people with brain mets have tried it…it’s an “easy” treatment, but I haven’t hear how effective it is on melanoma…it’s a chemo drug that passes the blood-brain barrier.-
- May 28, 2013 at 12:58 pm
I am a sloan patient but had il2 @ Yale. Dr. Sznol is terrific & has been involved W/PD1 for several years. He has a close relationship w/docs @ Sloan, & I know sloan has the Merck trial w/only the two doses of PD 1. Sorry for typing, on the train!
All the best,
Karen -
- May 28, 2013 at 12:58 pm
I am a sloan patient but had il2 @ Yale. Dr. Sznol is terrific & has been involved W/PD1 for several years. He has a close relationship w/docs @ Sloan, & I know sloan has the Merck trial w/only the two doses of PD 1. Sorry for typing, on the train!
All the best,
Karen -
- May 28, 2013 at 5:07 pm
NYKaren has posted a lot about her experiences w/ Sloan, maybe as much as anyone here, she knows Sloan and Yale.If your Mom’s brain mets are being zapped at Yale. is she seeing Dr. Veronica Chiang of Yale for radiation? There’s a one hour webinar with Dr. Chiang at the MIF site that might be good backround either way. I cant remember if she mentions is a bit about doing IPI at about the same time as radiation, I tbink she might. Anyway if you have time see http://www.melanomainternational.org/news/brain_metastases1.html.
I know what a challenge brain mets are, may she get them stable as soon as possible.
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- May 28, 2013 at 5:07 pm
NYKaren has posted a lot about her experiences w/ Sloan, maybe as much as anyone here, she knows Sloan and Yale.If your Mom’s brain mets are being zapped at Yale. is she seeing Dr. Veronica Chiang of Yale for radiation? There’s a one hour webinar with Dr. Chiang at the MIF site that might be good backround either way. I cant remember if she mentions is a bit about doing IPI at about the same time as radiation, I tbink she might. Anyway if you have time see http://www.melanomainternational.org/news/brain_metastases1.html.
I know what a challenge brain mets are, may she get them stable as soon as possible.
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- May 28, 2013 at 5:07 pm
NYKaren has posted a lot about her experiences w/ Sloan, maybe as much as anyone here, she knows Sloan and Yale.If your Mom’s brain mets are being zapped at Yale. is she seeing Dr. Veronica Chiang of Yale for radiation? There’s a one hour webinar with Dr. Chiang at the MIF site that might be good backround either way. I cant remember if she mentions is a bit about doing IPI at about the same time as radiation, I tbink she might. Anyway if you have time see http://www.melanomainternational.org/news/brain_metastases1.html.
I know what a challenge brain mets are, may she get them stable as soon as possible.
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- May 28, 2013 at 12:58 pm
I am a sloan patient but had il2 @ Yale. Dr. Sznol is terrific & has been involved W/PD1 for several years. He has a close relationship w/docs @ Sloan, & I know sloan has the Merck trial w/only the two doses of PD 1. Sorry for typing, on the train!
All the best,
Karen
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- May 28, 2013 at 11:43 am
I’m sorry to hear about your mom…UCLA (and a few others) just opened a PD-1 trial with no chemo arm…they are looking at a high dose vs. low dose, but everyone gets PD-1. They have 200 slots (i’ve heard), but as you know, the brain mets have to be stable. I’m assuming she’s not b-RAF+? Have they considered Temador? I know a few people with brain mets have tried it…it’s an “easy” treatment, but I haven’t hear how effective it is on melanoma…it’s a chemo drug that passes the blood-brain barrier. -
- May 28, 2013 at 11:43 am
I’m sorry to hear about your mom…UCLA (and a few others) just opened a PD-1 trial with no chemo arm…they are looking at a high dose vs. low dose, but everyone gets PD-1. They have 200 slots (i’ve heard), but as you know, the brain mets have to be stable. I’m assuming she’s not b-RAF+? Have they considered Temador? I know a few people with brain mets have tried it…it’s an “easy” treatment, but I haven’t hear how effective it is on melanoma…it’s a chemo drug that passes the blood-brain barrier.
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