› Forums › General Melanoma Community › Any info on compassionate use of dabrafenib…please
- This topic has 54 replies, 7 voices, and was last updated 11 years ago by
irinaD.
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- March 7, 2013 at 9:46 pm
Hi everyone. As I stated in a previous post, my husbands most recent Pet scan suggested multiple tiny brain mets. This was comfirmed by a brain MRI. His melanoma specialist feels that at this time, it would be too debilitating for him to have WBR, she also feels that Yervoy is not an option, since he suffers from gastrointestinal issues ( including a previous bowel perforation). A clinical trial is also off the table since traveling and time commitment would be too much for him right now. His Dr.
Hi everyone. As I stated in a previous post, my husbands most recent Pet scan suggested multiple tiny brain mets. This was comfirmed by a brain MRI. His melanoma specialist feels that at this time, it would be too debilitating for him to have WBR, she also feels that Yervoy is not an option, since he suffers from gastrointestinal issues ( including a previous bowel perforation). A clinical trial is also off the table since traveling and time commitment would be too much for him right now. His Dr. wants to put him on dabrafenib as soon as it is approved, which she says hopefully will happen within the next two months. For now, he is still taking Zel, 3 and 3, which seems to kind of keeping things in check, but for how long? I am terrified that things will progress before dabrafenib is approved. We have fought so long and so hard, I just feel like we should be doing something proactive, and not just waiting for it to be approved. So please, anyone with any info on approval time or compassionate use, respond to my post. You have all been a great source of info in the past and I thank you all.
Jo
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- March 8, 2013 at 12:02 am
I don't know if you can get compassionate use for dabrafenib. I'm not sure how much it would help, anyway, because Zelboraf and dabrafenib both work on the BRAF protein in pretty much the same way and they both have been shown to attack brain mets. But perhaps someone else here knows more about how these 2 treatments compare.
Meanwhile, have you discussed with your oncologist the possibility of intermittent dosing with Zelboraf? That means 2 or 3 weeks on Z and 1 or 2 weeks off Z. Not only does this help reduce the side effects, but there was a recent study in mice published in Nature last January that showed this intermittent dosing schedule helps to prevent melanoma becoming resistant to the Zelboraf (see LynnLuc's post http://www.melanoma.org/community/mpip-melanoma-patients-information-page/altered-dosing-vemurafenib-could-delay-or-prevent- ). This is something that you might discuss with your doctor while you are waiting for dabarfenib to be approved.
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- March 8, 2013 at 12:02 am
I don't know if you can get compassionate use for dabrafenib. I'm not sure how much it would help, anyway, because Zelboraf and dabrafenib both work on the BRAF protein in pretty much the same way and they both have been shown to attack brain mets. But perhaps someone else here knows more about how these 2 treatments compare.
Meanwhile, have you discussed with your oncologist the possibility of intermittent dosing with Zelboraf? That means 2 or 3 weeks on Z and 1 or 2 weeks off Z. Not only does this help reduce the side effects, but there was a recent study in mice published in Nature last January that showed this intermittent dosing schedule helps to prevent melanoma becoming resistant to the Zelboraf (see LynnLuc's post http://www.melanoma.org/community/mpip-melanoma-patients-information-page/altered-dosing-vemurafenib-could-delay-or-prevent- ). This is something that you might discuss with your doctor while you are waiting for dabarfenib to be approved.
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- March 8, 2013 at 12:55 am
Thanks, yes read that article, in fact printed it out and brought it to the Drs. attention, but she wasn't in favor of the intermittent dosing. From what I understand, dabrafenib is similar to Zelboraf, but works somewhat differently, so it's worth trying.
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- March 8, 2013 at 4:21 am
So Dr. Pavlik isn't in favor of intermittent dosing.
You know, melanoma is so complex and idosyncratic that nobody can really predict what will happen with any given patient. Most of us here know that all we can do is make the best decision we can with the information we have at the time. Once you've made your decision never look back. Never second-guess yourself. That way lies madness.
I completey agree with that philosophy with one exception– intermittent dosing with Zelboraf.
My brother was doing well on Zelboraf for several months until one tumor in his lung started to grow. His doctor immediately took him off Zelboraf for 30 days to prepare for either a clinical trial or for ipi. I was nervous about this because for many patients, once the tumor becomes resistant to Zelboraf it comes back more aggressive than it was before. I tried to get my brother's oncologist to switch to intermittent dosing while we investigated clinical trials and did the pre-trial testing. He refused. He said that when one tumor progresses the patient is defined as "resistant" to Zelboraf and the patient must be taken off it. Within 30 days, all of my brother's tumors grew markedly and new tumors developed, including 4 new ones in his brain. Because of the new brain mets he was now ineligible for any clinical trials. Then his physical condition deteriorated so quickly that he was considered ineligible even for any standard chemo like Temodar. Now he is dying.
My only regret during this whole melanoma journey is that I didn't fight and fight and fight for intermittent dosing. The reason I didn't is that my brother was being treated at the VA. The VA has an absolutely iron-clad policy of ONLY using drugs according to the FDA approved guidelines, which do not include intermittent dosing. Since my brother has no money (and I mean none) he had absolutely no alternative to the VA. I decided that the stress of fighting the VA bureaurocracy would make my brother's life even more miserable than it already was. In retrospect, I was wrong.
I doubt that Dr. Pavlik actually read that paper all the way through. What it says is that in human cell lines either in culture or growing as tumors in mice, melanoma becomes dependant on Zelboraf. So at first, the Zelboraf kills the melanoma. After some time, the melanoma becomes resistant to it and actually requires the Zelboraf in order to live. So when you are on Zelboraf you kill the sensitive melanoma cells; when you go off Zelboraf you kill the resistant cells; then back and forth and back and forth. In the mouse model, intermittent dosing doubled the lifespan of melanoma-infected mice.
So if I were fighting for time until a new drug was approved and my loved one was becoming resistant to Zelboraf and no other viable options existed, I would fight like hell for intermittent dosing. I would find another doctor. Or I would demand that the whole oncology team meet with me so I could present my case. As a last resort, I might just do it on my own without the doctor's cooperation. What do you have to lose?
Zelboraf is a fairly new drug and new things are being learned all the time about how best to use it. Unless your doctor can give you a damn good reason NOT to try intermittent dosing in this case, I advise you to fight for it at least until something more promising is available.
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- March 8, 2013 at 4:21 am
So Dr. Pavlik isn't in favor of intermittent dosing.
You know, melanoma is so complex and idosyncratic that nobody can really predict what will happen with any given patient. Most of us here know that all we can do is make the best decision we can with the information we have at the time. Once you've made your decision never look back. Never second-guess yourself. That way lies madness.
I completey agree with that philosophy with one exception– intermittent dosing with Zelboraf.
My brother was doing well on Zelboraf for several months until one tumor in his lung started to grow. His doctor immediately took him off Zelboraf for 30 days to prepare for either a clinical trial or for ipi. I was nervous about this because for many patients, once the tumor becomes resistant to Zelboraf it comes back more aggressive than it was before. I tried to get my brother's oncologist to switch to intermittent dosing while we investigated clinical trials and did the pre-trial testing. He refused. He said that when one tumor progresses the patient is defined as "resistant" to Zelboraf and the patient must be taken off it. Within 30 days, all of my brother's tumors grew markedly and new tumors developed, including 4 new ones in his brain. Because of the new brain mets he was now ineligible for any clinical trials. Then his physical condition deteriorated so quickly that he was considered ineligible even for any standard chemo like Temodar. Now he is dying.
My only regret during this whole melanoma journey is that I didn't fight and fight and fight for intermittent dosing. The reason I didn't is that my brother was being treated at the VA. The VA has an absolutely iron-clad policy of ONLY using drugs according to the FDA approved guidelines, which do not include intermittent dosing. Since my brother has no money (and I mean none) he had absolutely no alternative to the VA. I decided that the stress of fighting the VA bureaurocracy would make my brother's life even more miserable than it already was. In retrospect, I was wrong.
I doubt that Dr. Pavlik actually read that paper all the way through. What it says is that in human cell lines either in culture or growing as tumors in mice, melanoma becomes dependant on Zelboraf. So at first, the Zelboraf kills the melanoma. After some time, the melanoma becomes resistant to it and actually requires the Zelboraf in order to live. So when you are on Zelboraf you kill the sensitive melanoma cells; when you go off Zelboraf you kill the resistant cells; then back and forth and back and forth. In the mouse model, intermittent dosing doubled the lifespan of melanoma-infected mice.
So if I were fighting for time until a new drug was approved and my loved one was becoming resistant to Zelboraf and no other viable options existed, I would fight like hell for intermittent dosing. I would find another doctor. Or I would demand that the whole oncology team meet with me so I could present my case. As a last resort, I might just do it on my own without the doctor's cooperation. What do you have to lose?
Zelboraf is a fairly new drug and new things are being learned all the time about how best to use it. Unless your doctor can give you a damn good reason NOT to try intermittent dosing in this case, I advise you to fight for it at least until something more promising is available.
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- March 8, 2013 at 7:49 pm
POW, I agree, the article on intermittent dosing made a lot of sense to me, and I will continue questioning the Drs. about it, but as far as doing it without the Drs. approval, I don't think I could take that responsibility. If I were the patient, and I was doing it for myself, then yes, I probably would, but since it's my husband, if something went wrong, I would never forgive myself. Of course I want to explore anything possible, but with the Drs. approval. Hope you understand how I feel.
I have another question for you. I'm confused, because in a previous post (9/7/2012), you said that Zelboraf and Dabrafenib are not the same, but chemically different, but in your first reply you said it doesn't matter, because they are the same. I understand that they both work on BRAF, but perhaps in a slightly different way, at least that's what I'm hoping.
Again thanks for your response, and I'm so sorry about your brother, I wish things could be better for both of you. My husband goes to the VA too, but his oncologist there has been great. She speaks with Dr. Pavlick on a regular basis, so everyone is on the same team.
Thanks,
Jo
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- March 8, 2013 at 7:49 pm
POW, I agree, the article on intermittent dosing made a lot of sense to me, and I will continue questioning the Drs. about it, but as far as doing it without the Drs. approval, I don't think I could take that responsibility. If I were the patient, and I was doing it for myself, then yes, I probably would, but since it's my husband, if something went wrong, I would never forgive myself. Of course I want to explore anything possible, but with the Drs. approval. Hope you understand how I feel.
I have another question for you. I'm confused, because in a previous post (9/7/2012), you said that Zelboraf and Dabrafenib are not the same, but chemically different, but in your first reply you said it doesn't matter, because they are the same. I understand that they both work on BRAF, but perhaps in a slightly different way, at least that's what I'm hoping.
Again thanks for your response, and I'm so sorry about your brother, I wish things could be better for both of you. My husband goes to the VA too, but his oncologist there has been great. She speaks with Dr. Pavlick on a regular basis, so everyone is on the same team.
Thanks,
Jo
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- March 8, 2013 at 7:49 pm
POW, I agree, the article on intermittent dosing made a lot of sense to me, and I will continue questioning the Drs. about it, but as far as doing it without the Drs. approval, I don't think I could take that responsibility. If I were the patient, and I was doing it for myself, then yes, I probably would, but since it's my husband, if something went wrong, I would never forgive myself. Of course I want to explore anything possible, but with the Drs. approval. Hope you understand how I feel.
I have another question for you. I'm confused, because in a previous post (9/7/2012), you said that Zelboraf and Dabrafenib are not the same, but chemically different, but in your first reply you said it doesn't matter, because they are the same. I understand that they both work on BRAF, but perhaps in a slightly different way, at least that's what I'm hoping.
Again thanks for your response, and I'm so sorry about your brother, I wish things could be better for both of you. My husband goes to the VA too, but his oncologist there has been great. She speaks with Dr. Pavlick on a regular basis, so everyone is on the same team.
Thanks,
Jo
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- March 8, 2013 at 8:49 pm
Jo, I am not really advocating anyone using any chemotherapy drugs without the advice and consent of their oncologist. I was just so frustrated by the VA's "no off-label use of anything EVER" policy that I seriously considered just doing it myself. The oncologist my brother saw actually worked at Moffitt 4 days a week and at the VA one day a week. However, when treating VA patients at the VA, the oncologist had to follow the VA rules. If my brother could have afforded to see this oncologist at Moffitt, or gone to an oncologist in private practice, we would have. But that was not an option for him.
As for Zelboraf vs dabrafenib, they both bind to a pocket in the BRAF protein. Normally, this pocket contains the amino acid valine at position 600 (hence V600). If amino acid 600 is mutated to something other than valine (V600E, V600K, etc), the drug will bind to the pocket, inhibit the BRAF protein, and kill the melanoma cell.
Patent laws being what they are, two companies could not patent exactly the same chemical structure. So the GSK BRAF inhibitor (dabrafenib) has a slightly different chemical structure than does Hoffman-LaRoche's BRAF inhibitor (Zelboraf). That way both companies could patent their inventions. But both drugs do pretty much the same thing and there have been no clinical trials to determine if someone who becomes resistant to one BRAF inhibitor will still respond to the other. Maybe, maybe not.
More promising are the recent reports about combining a BRAF inhibitor with a MEK inhibitor (see "Dabrafenib-Trametinib Combination Therapy in Melanoma" http://www.targetedhc.com/publications/targeted-therapies-cancer/2012/November-2012/Dabrafenib-Trametinib-Combination-Therapy-in-Melanoma-ESMO-Phase-II-Results ).
GSK is ahead in the FDA approval race and their BRAF inhibitor (dabrafenib) and their MEK inhibitor (trametinib) are nearing approval. I'm sure that Hoffman-LaRoche will be along soon with their BRAF/MEK combo. But be forewarned that if the FDA does not approve combining the 2 drugs, the VA will probably not allow their doctors to prescribe the combination.
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- March 8, 2013 at 8:49 pm
Jo, I am not really advocating anyone using any chemotherapy drugs without the advice and consent of their oncologist. I was just so frustrated by the VA's "no off-label use of anything EVER" policy that I seriously considered just doing it myself. The oncologist my brother saw actually worked at Moffitt 4 days a week and at the VA one day a week. However, when treating VA patients at the VA, the oncologist had to follow the VA rules. If my brother could have afforded to see this oncologist at Moffitt, or gone to an oncologist in private practice, we would have. But that was not an option for him.
As for Zelboraf vs dabrafenib, they both bind to a pocket in the BRAF protein. Normally, this pocket contains the amino acid valine at position 600 (hence V600). If amino acid 600 is mutated to something other than valine (V600E, V600K, etc), the drug will bind to the pocket, inhibit the BRAF protein, and kill the melanoma cell.
Patent laws being what they are, two companies could not patent exactly the same chemical structure. So the GSK BRAF inhibitor (dabrafenib) has a slightly different chemical structure than does Hoffman-LaRoche's BRAF inhibitor (Zelboraf). That way both companies could patent their inventions. But both drugs do pretty much the same thing and there have been no clinical trials to determine if someone who becomes resistant to one BRAF inhibitor will still respond to the other. Maybe, maybe not.
More promising are the recent reports about combining a BRAF inhibitor with a MEK inhibitor (see "Dabrafenib-Trametinib Combination Therapy in Melanoma" http://www.targetedhc.com/publications/targeted-therapies-cancer/2012/November-2012/Dabrafenib-Trametinib-Combination-Therapy-in-Melanoma-ESMO-Phase-II-Results ).
GSK is ahead in the FDA approval race and their BRAF inhibitor (dabrafenib) and their MEK inhibitor (trametinib) are nearing approval. I'm sure that Hoffman-LaRoche will be along soon with their BRAF/MEK combo. But be forewarned that if the FDA does not approve combining the 2 drugs, the VA will probably not allow their doctors to prescribe the combination.
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- March 8, 2013 at 8:49 pm
Jo, I am not really advocating anyone using any chemotherapy drugs without the advice and consent of their oncologist. I was just so frustrated by the VA's "no off-label use of anything EVER" policy that I seriously considered just doing it myself. The oncologist my brother saw actually worked at Moffitt 4 days a week and at the VA one day a week. However, when treating VA patients at the VA, the oncologist had to follow the VA rules. If my brother could have afforded to see this oncologist at Moffitt, or gone to an oncologist in private practice, we would have. But that was not an option for him.
As for Zelboraf vs dabrafenib, they both bind to a pocket in the BRAF protein. Normally, this pocket contains the amino acid valine at position 600 (hence V600). If amino acid 600 is mutated to something other than valine (V600E, V600K, etc), the drug will bind to the pocket, inhibit the BRAF protein, and kill the melanoma cell.
Patent laws being what they are, two companies could not patent exactly the same chemical structure. So the GSK BRAF inhibitor (dabrafenib) has a slightly different chemical structure than does Hoffman-LaRoche's BRAF inhibitor (Zelboraf). That way both companies could patent their inventions. But both drugs do pretty much the same thing and there have been no clinical trials to determine if someone who becomes resistant to one BRAF inhibitor will still respond to the other. Maybe, maybe not.
More promising are the recent reports about combining a BRAF inhibitor with a MEK inhibitor (see "Dabrafenib-Trametinib Combination Therapy in Melanoma" http://www.targetedhc.com/publications/targeted-therapies-cancer/2012/November-2012/Dabrafenib-Trametinib-Combination-Therapy-in-Melanoma-ESMO-Phase-II-Results ).
GSK is ahead in the FDA approval race and their BRAF inhibitor (dabrafenib) and their MEK inhibitor (trametinib) are nearing approval. I'm sure that Hoffman-LaRoche will be along soon with their BRAF/MEK combo. But be forewarned that if the FDA does not approve combining the 2 drugs, the VA will probably not allow their doctors to prescribe the combination.
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- March 9, 2013 at 12:44 am
POW, thanks for the info. Although my husband goes to the VA, we are lucky to have private health insurance also, that is why he is able to see Dr. Pavlick at NYU.
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- March 9, 2013 at 12:44 am
POW, thanks for the info. Although my husband goes to the VA, we are lucky to have private health insurance also, that is why he is able to see Dr. Pavlick at NYU.
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- March 9, 2013 at 12:44 am
POW, thanks for the info. Although my husband goes to the VA, we are lucky to have private health insurance also, that is why he is able to see Dr. Pavlick at NYU.
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- March 8, 2013 at 4:21 am
So Dr. Pavlik isn't in favor of intermittent dosing.
You know, melanoma is so complex and idosyncratic that nobody can really predict what will happen with any given patient. Most of us here know that all we can do is make the best decision we can with the information we have at the time. Once you've made your decision never look back. Never second-guess yourself. That way lies madness.
I completey agree with that philosophy with one exception– intermittent dosing with Zelboraf.
My brother was doing well on Zelboraf for several months until one tumor in his lung started to grow. His doctor immediately took him off Zelboraf for 30 days to prepare for either a clinical trial or for ipi. I was nervous about this because for many patients, once the tumor becomes resistant to Zelboraf it comes back more aggressive than it was before. I tried to get my brother's oncologist to switch to intermittent dosing while we investigated clinical trials and did the pre-trial testing. He refused. He said that when one tumor progresses the patient is defined as "resistant" to Zelboraf and the patient must be taken off it. Within 30 days, all of my brother's tumors grew markedly and new tumors developed, including 4 new ones in his brain. Because of the new brain mets he was now ineligible for any clinical trials. Then his physical condition deteriorated so quickly that he was considered ineligible even for any standard chemo like Temodar. Now he is dying.
My only regret during this whole melanoma journey is that I didn't fight and fight and fight for intermittent dosing. The reason I didn't is that my brother was being treated at the VA. The VA has an absolutely iron-clad policy of ONLY using drugs according to the FDA approved guidelines, which do not include intermittent dosing. Since my brother has no money (and I mean none) he had absolutely no alternative to the VA. I decided that the stress of fighting the VA bureaurocracy would make my brother's life even more miserable than it already was. In retrospect, I was wrong.
I doubt that Dr. Pavlik actually read that paper all the way through. What it says is that in human cell lines either in culture or growing as tumors in mice, melanoma becomes dependant on Zelboraf. So at first, the Zelboraf kills the melanoma. After some time, the melanoma becomes resistant to it and actually requires the Zelboraf in order to live. So when you are on Zelboraf you kill the sensitive melanoma cells; when you go off Zelboraf you kill the resistant cells; then back and forth and back and forth. In the mouse model, intermittent dosing doubled the lifespan of melanoma-infected mice.
So if I were fighting for time until a new drug was approved and my loved one was becoming resistant to Zelboraf and no other viable options existed, I would fight like hell for intermittent dosing. I would find another doctor. Or I would demand that the whole oncology team meet with me so I could present my case. As a last resort, I might just do it on my own without the doctor's cooperation. What do you have to lose?
Zelboraf is a fairly new drug and new things are being learned all the time about how best to use it. Unless your doctor can give you a damn good reason NOT to try intermittent dosing in this case, I advise you to fight for it at least until something more promising is available.
-
- March 8, 2013 at 12:55 am
Thanks, yes read that article, in fact printed it out and brought it to the Drs. attention, but she wasn't in favor of the intermittent dosing. From what I understand, dabrafenib is similar to Zelboraf, but works somewhat differently, so it's worth trying.
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- March 8, 2013 at 12:55 am
Thanks, yes read that article, in fact printed it out and brought it to the Drs. attention, but she wasn't in favor of the intermittent dosing. From what I understand, dabrafenib is similar to Zelboraf, but works somewhat differently, so it's worth trying.
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- March 8, 2013 at 12:02 am
I don't know if you can get compassionate use for dabrafenib. I'm not sure how much it would help, anyway, because Zelboraf and dabrafenib both work on the BRAF protein in pretty much the same way and they both have been shown to attack brain mets. But perhaps someone else here knows more about how these 2 treatments compare.
Meanwhile, have you discussed with your oncologist the possibility of intermittent dosing with Zelboraf? That means 2 or 3 weeks on Z and 1 or 2 weeks off Z. Not only does this help reduce the side effects, but there was a recent study in mice published in Nature last January that showed this intermittent dosing schedule helps to prevent melanoma becoming resistant to the Zelboraf (see LynnLuc's post http://www.melanoma.org/community/mpip-melanoma-patients-information-page/altered-dosing-vemurafenib-could-delay-or-prevent- ). This is something that you might discuss with your doctor while you are waiting for dabarfenib to be approved.
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- March 8, 2013 at 2:42 am
Was Gamma Knife discussed by your oncologist/team for the multiple small brain mets? In many cases that situation is something Gamma Knife can be very good for.
My radiation oncologist strongly prefers Gamma Knife to WBR in the cases where use of Gamma Knife is indicated. I had Gamma Knife to two small brain mets and two resected brain tumor beds in 2011.
– Kyle
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- March 8, 2013 at 2:57 am
Here's a couple of MPIP posts from AllyNTAus where she was granted compassionate use of Dabrafenib:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/dabrafenib-working
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/another-asco-update
… and I mention Gamma Knife because is usually doesn't have the impact on quality of life afterwards that WBR sometimes does.
– Kyle
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- March 8, 2013 at 3:08 am
Another post from Ally (who's in Australia) on MPIP here:
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- March 8, 2013 at 3:08 am
Another post from Ally (who's in Australia) on MPIP here:
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- March 8, 2013 at 3:08 am
Another post from Ally (who's in Australia) on MPIP here:
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- March 8, 2013 at 2:57 am
Here's a couple of MPIP posts from AllyNTAus where she was granted compassionate use of Dabrafenib:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/dabrafenib-working
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/another-asco-update
… and I mention Gamma Knife because is usually doesn't have the impact on quality of life afterwards that WBR sometimes does.
– Kyle
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- March 8, 2013 at 2:57 am
Here's a couple of MPIP posts from AllyNTAus where she was granted compassionate use of Dabrafenib:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/dabrafenib-working
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/another-asco-update
… and I mention Gamma Knife because is usually doesn't have the impact on quality of life afterwards that WBR sometimes does.
– Kyle
-
- March 8, 2013 at 2:42 am
Was Gamma Knife discussed by your oncologist/team for the multiple small brain mets? In many cases that situation is something Gamma Knife can be very good for.
My radiation oncologist strongly prefers Gamma Knife to WBR in the cases where use of Gamma Knife is indicated. I had Gamma Knife to two small brain mets and two resected brain tumor beds in 2011.
– Kyle
-
- March 8, 2013 at 2:42 am
Was Gamma Knife discussed by your oncologist/team for the multiple small brain mets? In many cases that situation is something Gamma Knife can be very good for.
My radiation oncologist strongly prefers Gamma Knife to WBR in the cases where use of Gamma Knife is indicated. I had Gamma Knife to two small brain mets and two resected brain tumor beds in 2011.
– Kyle
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- March 8, 2013 at 3:14 am
Jo – please email Tim at MRF. He posted last wk about knowing a contact but didn’t mention which BRAF inhibitor it was. Does your Dr think Dabrafenib will work better in the brain? I worry about more brain mets of course.Amy
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- March 8, 2013 at 3:14 am
Jo – please email Tim at MRF. He posted last wk about knowing a contact but didn’t mention which BRAF inhibitor it was. Does your Dr think Dabrafenib will work better in the brain? I worry about more brain mets of course.Amy
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- March 8, 2013 at 3:31 am
He knew a contact for compassionate use I mean, hope that helps. Sorry y’all are going thru this.I am 3×3, 2 wks on/1 wk off and it’s shrinking my cardiac met, but i did Ipi too. Full scans in a month.
Hope for peace and help for you.
Amy
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- March 8, 2013 at 3:31 am
He knew a contact for compassionate use I mean, hope that helps. Sorry y’all are going thru this.I am 3×3, 2 wks on/1 wk off and it’s shrinking my cardiac met, but i did Ipi too. Full scans in a month.
Hope for peace and help for you.
Amy
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- March 8, 2013 at 7:56 pm
Amy, once again I thank you for being there for us with info and encouragement. Hope your scans in a month come back with great news!
Thanks,
Jo
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- March 8, 2013 at 7:56 pm
Amy, once again I thank you for being there for us with info and encouragement. Hope your scans in a month come back with great news!
Thanks,
Jo
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- March 8, 2013 at 7:56 pm
Amy, once again I thank you for being there for us with info and encouragement. Hope your scans in a month come back with great news!
Thanks,
Jo
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- March 9, 2013 at 12:53 am
Amy, took your advice and emailed Tim about our situation. He got back to me and said he sent a note to someone he knows at GSK to ask about compassionate use of dabrafenib. He said he knows they give it for rare mutations, but not sure about V600E. He will let me know.
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- March 9, 2013 at 12:53 am
Amy, took your advice and emailed Tim about our situation. He got back to me and said he sent a note to someone he knows at GSK to ask about compassionate use of dabrafenib. He said he knows they give it for rare mutations, but not sure about V600E. He will let me know.
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- March 9, 2013 at 12:53 am
Amy, took your advice and emailed Tim about our situation. He got back to me and said he sent a note to someone he knows at GSK to ask about compassionate use of dabrafenib. He said he knows they give it for rare mutations, but not sure about V600E. He will let me know.
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- March 8, 2013 at 3:31 am
He knew a contact for compassionate use I mean, hope that helps. Sorry y’all are going thru this.I am 3×3, 2 wks on/1 wk off and it’s shrinking my cardiac met, but i did Ipi too. Full scans in a month.
Hope for peace and help for you.
Amy
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- March 8, 2013 at 3:41 am
Thank you all for your replies. Gamma knife had been discussed originally, but after the brain MRI, Dr. Pavlick feels that the best approach is to wait for the dabrafenib. As far as brain mets, Zel works on those too. If he wasn't on Zel chances are the mets might have been much larger, but I think that dabrafenib works even better. (At least I hope and pray it does).
Amy, I will email Tim at MRF, that's a good idea. I remember seeing his email address in a previous post.
Thanks again,
Jo
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- March 8, 2013 at 3:41 am
Thank you all for your replies. Gamma knife had been discussed originally, but after the brain MRI, Dr. Pavlick feels that the best approach is to wait for the dabrafenib. As far as brain mets, Zel works on those too. If he wasn't on Zel chances are the mets might have been much larger, but I think that dabrafenib works even better. (At least I hope and pray it does).
Amy, I will email Tim at MRF, that's a good idea. I remember seeing his email address in a previous post.
Thanks again,
Jo
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- March 8, 2013 at 3:41 am
Thank you all for your replies. Gamma knife had been discussed originally, but after the brain MRI, Dr. Pavlick feels that the best approach is to wait for the dabrafenib. As far as brain mets, Zel works on those too. If he wasn't on Zel chances are the mets might have been much larger, but I think that dabrafenib works even better. (At least I hope and pray it does).
Amy, I will email Tim at MRF, that's a good idea. I remember seeing his email address in a previous post.
Thanks again,
Jo
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- March 8, 2013 at 3:14 am
Jo – please email Tim at MRF. He posted last wk about knowing a contact but didn’t mention which BRAF inhibitor it was. Does your Dr think Dabrafenib will work better in the brain? I worry about more brain mets of course.Amy
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- April 1, 2013 at 3:53 pm
Hello-just read your story- and my brother is in the same position as your husband. He had multiple brain mets – not a candidate for targeted radiation, and had WBR. Now he is on Zelboraf – 2x a day. He was in ICU for 33 days and made it out – and is resting at home. One large tumor right in between two ventricles and was bleeding. They didn't expect him to make it out of Mayo, Jacksonville.
We are going to do the 30 day scan- and probably get him over to Moffitt, Tampa- and see what his oncologist says about intermittent dosing – and also await dabrafenib. We too have had a great battle for 11 years – and then moved to his brain – and he has declined mentally and physically. I too feel he is too weak to get into clinical trial for the travel. Please let me know if you hear something about dabrafanib — but I too don't know if it is really a different drug or just a similar drug by a different drug company.
Does anyone know if he would be a candidate for targeted radiation after wbr? I think he is too weak for that – and hoping the Zelboraf is holding the mel down.
It was great to hear your story – and I wish you the best.
Wishing you lots of luck and love
Mrs Marilyn
Sister of Gary (Stage IV) FOR 11 YEARS
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- April 1, 2013 at 3:53 pm
Hello-just read your story- and my brother is in the same position as your husband. He had multiple brain mets – not a candidate for targeted radiation, and had WBR. Now he is on Zelboraf – 2x a day. He was in ICU for 33 days and made it out – and is resting at home. One large tumor right in between two ventricles and was bleeding. They didn't expect him to make it out of Mayo, Jacksonville.
We are going to do the 30 day scan- and probably get him over to Moffitt, Tampa- and see what his oncologist says about intermittent dosing – and also await dabrafenib. We too have had a great battle for 11 years – and then moved to his brain – and he has declined mentally and physically. I too feel he is too weak to get into clinical trial for the travel. Please let me know if you hear something about dabrafanib — but I too don't know if it is really a different drug or just a similar drug by a different drug company.
Does anyone know if he would be a candidate for targeted radiation after wbr? I think he is too weak for that – and hoping the Zelboraf is holding the mel down.
It was great to hear your story – and I wish you the best.
Wishing you lots of luck and love
Mrs Marilyn
Sister of Gary (Stage IV) FOR 11 YEARS
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- April 1, 2013 at 3:53 pm
Hello-just read your story- and my brother is in the same position as your husband. He had multiple brain mets – not a candidate for targeted radiation, and had WBR. Now he is on Zelboraf – 2x a day. He was in ICU for 33 days and made it out – and is resting at home. One large tumor right in between two ventricles and was bleeding. They didn't expect him to make it out of Mayo, Jacksonville.
We are going to do the 30 day scan- and probably get him over to Moffitt, Tampa- and see what his oncologist says about intermittent dosing – and also await dabrafenib. We too have had a great battle for 11 years – and then moved to his brain – and he has declined mentally and physically. I too feel he is too weak to get into clinical trial for the travel. Please let me know if you hear something about dabrafanib — but I too don't know if it is really a different drug or just a similar drug by a different drug company.
Does anyone know if he would be a candidate for targeted radiation after wbr? I think he is too weak for that – and hoping the Zelboraf is holding the mel down.
It was great to hear your story – and I wish you the best.
Wishing you lots of luck and love
Mrs Marilyn
Sister of Gary (Stage IV) FOR 11 YEARS
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- April 13, 2013 at 12:42 pm
Problems with brain metastases arise because zelboraf, does not pass the blood-brain barer. Ask your doctor drug administration directly into the brain or spinal fluid. As for dabrafeniba, he's better than zelboraf penetrates barer, but also in small quantities. try to get into clinical investigate, there it is free. Also use tramatenib, he also passes through barer.
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- April 13, 2013 at 12:42 pm
Problems with brain metastases arise because zelboraf, does not pass the blood-brain barer. Ask your doctor drug administration directly into the brain or spinal fluid. As for dabrafeniba, he's better than zelboraf penetrates barer, but also in small quantities. try to get into clinical investigate, there it is free. Also use tramatenib, he also passes through barer.
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- April 13, 2013 at 12:42 pm
Problems with brain metastases arise because zelboraf, does not pass the blood-brain barer. Ask your doctor drug administration directly into the brain or spinal fluid. As for dabrafeniba, he's better than zelboraf penetrates barer, but also in small quantities. try to get into clinical investigate, there it is free. Also use tramatenib, he also passes through barer.
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- April 13, 2013 at 12:43 pm
Problems with brain metastases arise because zelboraf, does not pass the blood-brain barer. Ask your doctor drug administration directly into the brain or spinal fluid. As for dabrafeniba, he's better than zelboraf penetrates barer, but also in small quantities. try to get into clinical investigate, there it is free. Also use tramatenib, he also passes through barer.
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- April 13, 2013 at 12:43 pm
Problems with brain metastases arise because zelboraf, does not pass the blood-brain barer. Ask your doctor drug administration directly into the brain or spinal fluid. As for dabrafeniba, he's better than zelboraf penetrates barer, but also in small quantities. try to get into clinical investigate, there it is free. Also use tramatenib, he also passes through barer.
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- April 13, 2013 at 12:43 pm
Problems with brain metastases arise because zelboraf, does not pass the blood-brain barer. Ask your doctor drug administration directly into the brain or spinal fluid. As for dabrafeniba, he's better than zelboraf penetrates barer, but also in small quantities. try to get into clinical investigate, there it is free. Also use tramatenib, he also passes through barer.
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