› Forums › General Melanoma Community › Quick question.
- This topic has 30 replies, 6 voices, and was last updated 11 years, 9 months ago by
Harry in Fair Oaks.
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- July 27, 2012 at 6:24 pm
Just wondering if anyone here of has had, or heard of substantial benefit from doing IL2 a second time, or being on temodar, or trying whole brain radiation?
These are a few things, up in the air, that I may trying that I haven't yet..
Sometimes just a single story of success is enough to get that spark, that optimism, and make these times of waiting easier.
Thanks, -Kevin
Just wondering if anyone here of has had, or heard of substantial benefit from doing IL2 a second time, or being on temodar, or trying whole brain radiation?
These are a few things, up in the air, that I may trying that I haven't yet..
Sometimes just a single story of success is enough to get that spark, that optimism, and make these times of waiting easier.
Thanks, -Kevin
- Replies
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- July 27, 2012 at 8:35 pm
Kevin, have you done any research on Dabrafenib?
http://medicalxpress.com/news/2012-05-dabrafenib-melanoma-brain-metastases-phase.html
Seems like a promising drug for someone with brain mets. It's not FDA approved but maybe you could get into a trial?
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- July 27, 2012 at 8:35 pm
Kevin, have you done any research on Dabrafenib?
http://medicalxpress.com/news/2012-05-dabrafenib-melanoma-brain-metastases-phase.html
Seems like a promising drug for someone with brain mets. It's not FDA approved but maybe you could get into a trial?
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- July 27, 2012 at 10:38 pm
I've looked into this, so far I could only find three trials and they need the tumors to be stable for 12 weeks before starting. :/
But maybe it 12 weeks I can get in? Hope so. Thanks for the link.
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- July 28, 2012 at 1:43 am
kevin,
I it they diffult type. E-mail me and I will send you email phone numun. I is a phase 2 trial, you must be braf 600 E. [email protected]
Linda
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- July 28, 2012 at 1:43 am
kevin,
I it they diffult type. E-mail me and I will send you email phone numun. I is a phase 2 trial, you must be braf 600 E. [email protected]
Linda
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- July 28, 2012 at 1:43 am
kevin,
I it they diffult type. E-mail me and I will send you email phone numun. I is a phase 2 trial, you must be braf 600 E. [email protected]
Linda
-
- July 27, 2012 at 10:38 pm
I've looked into this, so far I could only find three trials and they need the tumors to be stable for 12 weeks before starting. :/
But maybe it 12 weeks I can get in? Hope so. Thanks for the link.
-
- July 27, 2012 at 10:38 pm
I've looked into this, so far I could only find three trials and they need the tumors to be stable for 12 weeks before starting. :/
But maybe it 12 weeks I can get in? Hope so. Thanks for the link.
-
- July 27, 2012 at 8:35 pm
Kevin, have you done any research on Dabrafenib?
http://medicalxpress.com/news/2012-05-dabrafenib-melanoma-brain-metastases-phase.html
Seems like a promising drug for someone with brain mets. It's not FDA approved but maybe you could get into a trial?
-
- July 27, 2012 at 11:24 pm
Hi Kevin,
I have been doing temador for 8 months and it kept me stable.. Mild side effects…very duable considering the side effcts you have been deeling with.
I recommend you do a search on "temador" & see if it worked on others. I guess temador is like every other drug….it is a crap shoot…some drugs with for some and not for others.
I know this weekend will be long for you waiting for your scans. This is a terrible time for you and I hope you get good news next week. At the very least, you will be zapping your brain mets so that will be behind you.
You are so young considering for all the treatment you have gone through in such a short time. I hope that you will finally find a treatment that works for you. I only wish that you stop getting brain mets because that puts you in a different scenario for treatments.
Good Luck, you are in my prayers.
Joyce
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- July 27, 2012 at 11:24 pm
Hi Kevin,
I have been doing temador for 8 months and it kept me stable.. Mild side effects…very duable considering the side effcts you have been deeling with.
I recommend you do a search on "temador" & see if it worked on others. I guess temador is like every other drug….it is a crap shoot…some drugs with for some and not for others.
I know this weekend will be long for you waiting for your scans. This is a terrible time for you and I hope you get good news next week. At the very least, you will be zapping your brain mets so that will be behind you.
You are so young considering for all the treatment you have gone through in such a short time. I hope that you will finally find a treatment that works for you. I only wish that you stop getting brain mets because that puts you in a different scenario for treatments.
Good Luck, you are in my prayers.
Joyce
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- July 27, 2012 at 11:24 pm
Hi Kevin,
I have been doing temador for 8 months and it kept me stable.. Mild side effects…very duable considering the side effcts you have been deeling with.
I recommend you do a search on "temador" & see if it worked on others. I guess temador is like every other drug….it is a crap shoot…some drugs with for some and not for others.
I know this weekend will be long for you waiting for your scans. This is a terrible time for you and I hope you get good news next week. At the very least, you will be zapping your brain mets so that will be behind you.
You are so young considering for all the treatment you have gone through in such a short time. I hope that you will finally find a treatment that works for you. I only wish that you stop getting brain mets because that puts you in a different scenario for treatments.
Good Luck, you are in my prayers.
Joyce
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- July 29, 2012 at 7:53 am
Temodar usually does not give a durable response and in many cases its the last drug they use…It held me stable for about 5 months before it stopped working. My doc at Mayo Clinic said it was about right and that after 5-7 months melanoma outwits it and begins to spread….
A Study Comparing Trametinib and Dabrafenib Combination Therapy to Dabrafenib Monotherapy in Subjects With BRAF-mutant Melanoma
http://www.cancer.gov/clinicaltrials/search/view?cdrid=732691&version=HealthProfessional
Info from ASCO on Dabrafenib http://chicago2012.asco.org/ASCODailyNews/LBA8500.aspx
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- July 29, 2012 at 7:53 am
Temodar usually does not give a durable response and in many cases its the last drug they use…It held me stable for about 5 months before it stopped working. My doc at Mayo Clinic said it was about right and that after 5-7 months melanoma outwits it and begins to spread….
A Study Comparing Trametinib and Dabrafenib Combination Therapy to Dabrafenib Monotherapy in Subjects With BRAF-mutant Melanoma
http://www.cancer.gov/clinicaltrials/search/view?cdrid=732691&version=HealthProfessional
Info from ASCO on Dabrafenib http://chicago2012.asco.org/ASCODailyNews/LBA8500.aspx
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- July 29, 2012 at 10:00 pm
Thanks for the reply and the links. So Trametinib is just a name for the MEK inhibitor I always hear about?
Also I just found out that Zelboraf and Dabrafenib are the same thing just a different name. This is correct? So if Zelboraf has stopped working, Dabrafenib is useless?
Eitherway, it looks like my first step to getting in any trial seems to be brain stability for 12 weeks. That's too bad, they had just been stable for 15 weeks, then a scan shows progression.. :/
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- July 29, 2012 at 10:00 pm
Thanks for the reply and the links. So Trametinib is just a name for the MEK inhibitor I always hear about?
Also I just found out that Zelboraf and Dabrafenib are the same thing just a different name. This is correct? So if Zelboraf has stopped working, Dabrafenib is useless?
Eitherway, it looks like my first step to getting in any trial seems to be brain stability for 12 weeks. That's too bad, they had just been stable for 15 weeks, then a scan shows progression.. :/
-
- July 29, 2012 at 10:00 pm
Thanks for the reply and the links. So Trametinib is just a name for the MEK inhibitor I always hear about?
Also I just found out that Zelboraf and Dabrafenib are the same thing just a different name. This is correct? So if Zelboraf has stopped working, Dabrafenib is useless?
Eitherway, it looks like my first step to getting in any trial seems to be brain stability for 12 weeks. That's too bad, they had just been stable for 15 weeks, then a scan shows progression.. :/
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- July 29, 2012 at 11:51 pm
Dabrafenib is GlaxoSmithKline's (GSK) proprietary BRAF inhibitor. I understand that GSK will submit this drug to the FDA for approval later this year. Since it's a BRAF inhibitor, it must work on the same general principle as Zelboraf, but it's not the same drug.
Trametinib is GSK's proprietary MEK inhibitor (I believe it's under license from the original developer, Japan Tobacco). The makers of Zelboraf also have an MEK inhibitor, which they have just begun to use in a clinical trial in combination with Zelboraf. There is a poster named Eileen who recently started this trial. I have been on GSK's BRAF/MEK trial for the last 14 months.
Best wishes,
Harry
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- July 29, 2012 at 11:51 pm
Dabrafenib is GlaxoSmithKline's (GSK) proprietary BRAF inhibitor. I understand that GSK will submit this drug to the FDA for approval later this year. Since it's a BRAF inhibitor, it must work on the same general principle as Zelboraf, but it's not the same drug.
Trametinib is GSK's proprietary MEK inhibitor (I believe it's under license from the original developer, Japan Tobacco). The makers of Zelboraf also have an MEK inhibitor, which they have just begun to use in a clinical trial in combination with Zelboraf. There is a poster named Eileen who recently started this trial. I have been on GSK's BRAF/MEK trial for the last 14 months.
Best wishes,
Harry
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- July 30, 2012 at 1:32 am
Thanks for clearing these things up Harry, knowledge is power. I took a look at your profile, congrats on the 14 month shrinkage and stability. So happy for you. May it continue indefinitely. It's those stories that make it a little easier to sleep at night. Hope.
-Kevin
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- July 30, 2012 at 1:32 am
Thanks for clearing these things up Harry, knowledge is power. I took a look at your profile, congrats on the 14 month shrinkage and stability. So happy for you. May it continue indefinitely. It's those stories that make it a little easier to sleep at night. Hope.
-Kevin
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- July 30, 2012 at 1:32 am
Thanks for clearing these things up Harry, knowledge is power. I took a look at your profile, congrats on the 14 month shrinkage and stability. So happy for you. May it continue indefinitely. It's those stories that make it a little easier to sleep at night. Hope.
-Kevin
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- July 30, 2012 at 1:46 am
Harry,
Was braf/mek use for brain mets? I was believe I was told that MEK doesn't across the brain barrier. Every trial I found excisioning acting brain mets. Please let me know. I had will take about 25 days before my trial is being and having panick attacks!
Linda
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- July 30, 2012 at 1:46 am
Harry,
Was braf/mek use for brain mets? I was believe I was told that MEK doesn't across the brain barrier. Every trial I found excisioning acting brain mets. Please let me know. I had will take about 25 days before my trial is being and having panick attacks!
Linda
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- July 30, 2012 at 4:23 am
Sorry I can't help with your brain met question. I'm fortunate in that I haven't had to face that issue (had lung, bone, and sub-q mets). I think somewhere on the MRF site there's a link to all current trials, which included requirements and disqualifications.
Best wishes,
Harry
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- July 30, 2012 at 4:23 am
Sorry I can't help with your brain met question. I'm fortunate in that I haven't had to face that issue (had lung, bone, and sub-q mets). I think somewhere on the MRF site there's a link to all current trials, which included requirements and disqualifications.
Best wishes,
Harry
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- July 30, 2012 at 4:23 am
Sorry I can't help with your brain met question. I'm fortunate in that I haven't had to face that issue (had lung, bone, and sub-q mets). I think somewhere on the MRF site there's a link to all current trials, which included requirements and disqualifications.
Best wishes,
Harry
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- July 30, 2012 at 1:46 am
Harry,
Was braf/mek use for brain mets? I was believe I was told that MEK doesn't across the brain barrier. Every trial I found excisioning acting brain mets. Please let me know. I had will take about 25 days before my trial is being and having panick attacks!
Linda
-
- July 29, 2012 at 11:51 pm
Dabrafenib is GlaxoSmithKline's (GSK) proprietary BRAF inhibitor. I understand that GSK will submit this drug to the FDA for approval later this year. Since it's a BRAF inhibitor, it must work on the same general principle as Zelboraf, but it's not the same drug.
Trametinib is GSK's proprietary MEK inhibitor (I believe it's under license from the original developer, Japan Tobacco). The makers of Zelboraf also have an MEK inhibitor, which they have just begun to use in a clinical trial in combination with Zelboraf. There is a poster named Eileen who recently started this trial. I have been on GSK's BRAF/MEK trial for the last 14 months.
Best wishes,
Harry
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- July 29, 2012 at 7:53 am
Temodar usually does not give a durable response and in many cases its the last drug they use…It held me stable for about 5 months before it stopped working. My doc at Mayo Clinic said it was about right and that after 5-7 months melanoma outwits it and begins to spread….
A Study Comparing Trametinib and Dabrafenib Combination Therapy to Dabrafenib Monotherapy in Subjects With BRAF-mutant Melanoma
http://www.cancer.gov/clinicaltrials/search/view?cdrid=732691&version=HealthProfessional
Info from ASCO on Dabrafenib http://chicago2012.asco.org/ASCODailyNews/LBA8500.aspx
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