› Forums › General Melanoma Community › Anyone on Novartis BRAF/MEK inhibitor trial?
- This topic has 21 replies, 4 voices, and was last updated 11 years, 9 months ago by
jamfahey.
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- February 26, 2013 at 9:41 am
Hi everyone,
Looks like my time on Dabrafenib monotherapy might be coming to an end, my recent gallbladder met has now been closely followed by a small met behind my left eye (hopefully starting a short course of radiotherapy later this week to try and deal with this).My doctor has advised me that there is a slot opening up in the Novartis combi trial that he would like to try and get me into, I am very keen as I think adding the MEK inhibitor might help with the apparent resistance issue and give me some more time. I am aware the study is pretty intense in its time demands but I am ok with dealing with that.
I am interested in knowing how anyone is finding the drugs in terms of any side effects and effectiveness, and how long people have been on the treatment without progression in their disease.
Thanks,
Ally
- Replies
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- February 26, 2013 at 2:02 pm
Ally,I Don’t have any advice for you but just wanted to say I’m sorry to hear this news. Hang in there and keep fighting!!
Amy
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- February 26, 2013 at 2:02 pm
Ally,I Don’t have any advice for you but just wanted to say I’m sorry to hear this news. Hang in there and keep fighting!!
Amy
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- February 26, 2013 at 2:02 pm
Ally,I Don’t have any advice for you but just wanted to say I’m sorry to hear this news. Hang in there and keep fighting!!
Amy
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- February 27, 2013 at 1:06 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:06 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:06 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:08 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:08 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:08 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:11 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:11 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:11 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:13 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:13 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 1:13 am
Hi Ally
Try not to be discouraged and please try to get on the trial that includes the MEK. I am on the GSK BRAF/MEK trial and doing great. The MEK inhibitor will help you, as it has done for me and so many others. I have been on a year with very few side effects. Others have been on so far for three years and doing well! I started this process with stage 4 and have tumor shrinkage close to70% or more. There is a lot of hope out there…so keep the faith. Please try to eliminate sugar, white flour and preservatives from your diet and eat lots of organic fruits and vegetables, especially kale. Use lots of spices such as turmeric, garlic, ginger. Cinnamon, carrot juice are also so good for you. PLEASE keep us informed and PLEASE try to get on that trial. YOU will be in our prayers. -
- February 27, 2013 at 11:53 am
Thanks for your thoughts and information. I feel like I am in pretty scary place right now, but I know there is hope out there. Just today I noticed what seems to be a small subq met in my upper thigh, and I am getting some funny twinges in other places which I keep thinking will be more mets.My doctors have been great though, and I will be travelling to my specialist melanoma treatment centre on Sunday, and going through all the screening tests over the week, then hopefully starting the combination drugs on Monday 11 March. At the same time I am going to be having some radiotherapy for the met behind the eye, thankfully the drug company was ok with this being done concurrently.
The worst thing will be being separated from my wonderful husband and darling little boy, who is only 2.5years, for the next 5 weeks or so. Thank heavens we have things like Skype these days, and they will probably travel to spend Easter with me. I am lucky too that my parents live in Sydney which is where my treatment centre is, so I have family support, although it is hard to see your parents in distress.
I am trying to eat healthy, and we do use quite a lot of herbs and spices in our cooking but will have to look at even more improvements.
I will keep you all posted on my progress, it is great to have this forum.
Ally -
- February 27, 2013 at 11:53 am
Thanks for your thoughts and information. I feel like I am in pretty scary place right now, but I know there is hope out there. Just today I noticed what seems to be a small subq met in my upper thigh, and I am getting some funny twinges in other places which I keep thinking will be more mets.My doctors have been great though, and I will be travelling to my specialist melanoma treatment centre on Sunday, and going through all the screening tests over the week, then hopefully starting the combination drugs on Monday 11 March. At the same time I am going to be having some radiotherapy for the met behind the eye, thankfully the drug company was ok with this being done concurrently.
The worst thing will be being separated from my wonderful husband and darling little boy, who is only 2.5years, for the next 5 weeks or so. Thank heavens we have things like Skype these days, and they will probably travel to spend Easter with me. I am lucky too that my parents live in Sydney which is where my treatment centre is, so I have family support, although it is hard to see your parents in distress.
I am trying to eat healthy, and we do use quite a lot of herbs and spices in our cooking but will have to look at even more improvements.
I will keep you all posted on my progress, it is great to have this forum.
Ally-
- March 3, 2013 at 2:20 am
Ally,
I celebrated my 2 year anniversary on Feb 22 on the GSK BRAF/MEK trial out of MGH here in Boston. All of the tumors in my lungs are gone except for a piece of one, shrunk by 80% already. BRAF (alone) trials have been out there for some time with good results, but not as durable, and often with some tough side effects. The MEK has been shown to mitigate the side effects of the BRAF inhibitors. In our study, the combination is more durable. I had a few fevers and chills early on in the first 6 months, nothing since then. A very normal life!! The Novartis study uses a BRAF inhibitor which is a bit more stronger than others. I believe it was designed to bind better and thus be more effective. I know patients who had the Novartis BRAF alone and it was pretty strong, but effective. The combination with MEK should be a good one. I heard the MEK also mitigates the side effects of the Novartis BRAF inhibitors as well.
Jim
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- March 3, 2013 at 2:20 am
Ally,
I celebrated my 2 year anniversary on Feb 22 on the GSK BRAF/MEK trial out of MGH here in Boston. All of the tumors in my lungs are gone except for a piece of one, shrunk by 80% already. BRAF (alone) trials have been out there for some time with good results, but not as durable, and often with some tough side effects. The MEK has been shown to mitigate the side effects of the BRAF inhibitors. In our study, the combination is more durable. I had a few fevers and chills early on in the first 6 months, nothing since then. A very normal life!! The Novartis study uses a BRAF inhibitor which is a bit more stronger than others. I believe it was designed to bind better and thus be more effective. I know patients who had the Novartis BRAF alone and it was pretty strong, but effective. The combination with MEK should be a good one. I heard the MEK also mitigates the side effects of the Novartis BRAF inhibitors as well.
Jim
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- March 3, 2013 at 2:20 am
Ally,
I celebrated my 2 year anniversary on Feb 22 on the GSK BRAF/MEK trial out of MGH here in Boston. All of the tumors in my lungs are gone except for a piece of one, shrunk by 80% already. BRAF (alone) trials have been out there for some time with good results, but not as durable, and often with some tough side effects. The MEK has been shown to mitigate the side effects of the BRAF inhibitors. In our study, the combination is more durable. I had a few fevers and chills early on in the first 6 months, nothing since then. A very normal life!! The Novartis study uses a BRAF inhibitor which is a bit more stronger than others. I believe it was designed to bind better and thus be more effective. I know patients who had the Novartis BRAF alone and it was pretty strong, but effective. The combination with MEK should be a good one. I heard the MEK also mitigates the side effects of the Novartis BRAF inhibitors as well.
Jim
-
- February 27, 2013 at 11:53 am
Thanks for your thoughts and information. I feel like I am in pretty scary place right now, but I know there is hope out there. Just today I noticed what seems to be a small subq met in my upper thigh, and I am getting some funny twinges in other places which I keep thinking will be more mets.My doctors have been great though, and I will be travelling to my specialist melanoma treatment centre on Sunday, and going through all the screening tests over the week, then hopefully starting the combination drugs on Monday 11 March. At the same time I am going to be having some radiotherapy for the met behind the eye, thankfully the drug company was ok with this being done concurrently.
The worst thing will be being separated from my wonderful husband and darling little boy, who is only 2.5years, for the next 5 weeks or so. Thank heavens we have things like Skype these days, and they will probably travel to spend Easter with me. I am lucky too that my parents live in Sydney which is where my treatment centre is, so I have family support, although it is hard to see your parents in distress.
I am trying to eat healthy, and we do use quite a lot of herbs and spices in our cooking but will have to look at even more improvements.
I will keep you all posted on my progress, it is great to have this forum.
Ally
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