› Forums › General Melanoma Community › July PET/CT Results – BRAF Combo FAIL
- This topic has 24 replies, 7 voices, and was last updated 9 years, 9 months ago by
jualonso.
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- July 18, 2014 at 8:11 pm
Hello All
Just a quick update…. newest PET /CT showed increased activity in my bones, lungs and liver
Plan now is to stop the Tafinlar and Mekinist as of today and make the switch to ;Yervoy (Ipi) within a week or so once insurance is done.
it seems like the right course of action.
Any thoughts?
Thanks
Matt
- Replies
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- July 18, 2014 at 8:54 pm
The first, sorry for fail inhibitors, I’m with the same treatment and I know it is going to happen too me as well.
Regarding ipi I heard folks that fail braf inh. Have very poor response. But you never know on which side you are. Anyway other option could be anti pd1. Do whatever you do, have a good luck. -
- July 18, 2014 at 8:54 pm
The first, sorry for fail inhibitors, I’m with the same treatment and I know it is going to happen too me as well.
Regarding ipi I heard folks that fail braf inh. Have very poor response. But you never know on which side you are. Anyway other option could be anti pd1. Do whatever you do, have a good luck. -
- July 18, 2014 at 8:54 pm
The first, sorry for fail inhibitors, I’m with the same treatment and I know it is going to happen too me as well.
Regarding ipi I heard folks that fail braf inh. Have very poor response. But you never know on which side you are. Anyway other option could be anti pd1. Do whatever you do, have a good luck. -
- July 18, 2014 at 9:14 pm
Hi Matt,
I'm so sorry to hear your news. I had the same thing happen in January. I went from NED to 30 tumors in my brain and several in my body practically overnight while taking Tafinlar and Mekinist. My oncologist, Dr. Daud at UCSF took me off both, had me do Gamma Knife radiation on my brain mets, then put me back on a double dose of Tafinlar. That helped in stabilizing my tumors. I tried one Yervoy infusion but felt horrible on it (we think it was worse for me because I was also doing the double dose of Tafinlar) so it was considered a "fail" . That turned out to be a good thing, as it enabled me to gain access to the Merck PD-1 Expanded Access Program. I had my first infusion yesterday, and I'll report my progress here.
Please let us know how you do on Yervoy. You may suggest to your doctor the double dose of Tafinlar, it did help a fair amount. ALSO, once PD1 is FDA approved, the combo of an anti-PD1 drug and Yervoy is supposed to be insanely effective. Something like 80-90% survival rate at 2 years.
Best,
laura
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- July 18, 2014 at 9:14 pm
Hi Matt,
I'm so sorry to hear your news. I had the same thing happen in January. I went from NED to 30 tumors in my brain and several in my body practically overnight while taking Tafinlar and Mekinist. My oncologist, Dr. Daud at UCSF took me off both, had me do Gamma Knife radiation on my brain mets, then put me back on a double dose of Tafinlar. That helped in stabilizing my tumors. I tried one Yervoy infusion but felt horrible on it (we think it was worse for me because I was also doing the double dose of Tafinlar) so it was considered a "fail" . That turned out to be a good thing, as it enabled me to gain access to the Merck PD-1 Expanded Access Program. I had my first infusion yesterday, and I'll report my progress here.
Please let us know how you do on Yervoy. You may suggest to your doctor the double dose of Tafinlar, it did help a fair amount. ALSO, once PD1 is FDA approved, the combo of an anti-PD1 drug and Yervoy is supposed to be insanely effective. Something like 80-90% survival rate at 2 years.
Best,
laura
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- July 18, 2014 at 9:14 pm
Hi Matt,
I'm so sorry to hear your news. I had the same thing happen in January. I went from NED to 30 tumors in my brain and several in my body practically overnight while taking Tafinlar and Mekinist. My oncologist, Dr. Daud at UCSF took me off both, had me do Gamma Knife radiation on my brain mets, then put me back on a double dose of Tafinlar. That helped in stabilizing my tumors. I tried one Yervoy infusion but felt horrible on it (we think it was worse for me because I was also doing the double dose of Tafinlar) so it was considered a "fail" . That turned out to be a good thing, as it enabled me to gain access to the Merck PD-1 Expanded Access Program. I had my first infusion yesterday, and I'll report my progress here.
Please let us know how you do on Yervoy. You may suggest to your doctor the double dose of Tafinlar, it did help a fair amount. ALSO, once PD1 is FDA approved, the combo of an anti-PD1 drug and Yervoy is supposed to be insanely effective. Something like 80-90% survival rate at 2 years.
Best,
laura
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- July 18, 2014 at 9:21 pm
Sorry to hear about the progression on the BRAF/MEK combination Matt. I saw from your profile that it looks like you started it back in December? Curious if you experienced an initial response at some point during the time you were on it?
Regardless, I'd agree that ipi would be the next logical course of action in almost anyone's book. Have they mentioned any "washout period" after finishing the combination before starting? I've heard others mention it as a precaution to prevent any interactions, but don't know how much there is to it — maybe worth a question to your doctor, though.
Some might suggest a PD-1 trial or EAP, which would be reasonable, too, but with the EAP's and even Merck's likely October approval of pembro, prior ipi treatment is and will be a prerequisite, so if it were me, I'd take the same approach as you with ipi and then be positioned to try anti-PD-1 if needed later.
Kind regards, Joe
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- July 19, 2014 at 1:26 am
Matt, did you read the post from Tim on 7/10/2014 about the expanded access to the ipi and Nivo phase 3 trial. I was able to get on the trial Jan 2014 and have been stage 4 since July 2013 with lung and brain mets- ( stable after cyberknife treatment). I have been doing great on the trial so far!!! I think it would be worth looking into. The results were talked about a lot at the 2014 ASCO conference. The one and two year survival # are really positive with #'s in the 80% range for 1 year and in the mid 70 % range over 2 years. Best of luck!!! Ed
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- July 19, 2014 at 1:26 am
Matt, did you read the post from Tim on 7/10/2014 about the expanded access to the ipi and Nivo phase 3 trial. I was able to get on the trial Jan 2014 and have been stage 4 since July 2013 with lung and brain mets- ( stable after cyberknife treatment). I have been doing great on the trial so far!!! I think it would be worth looking into. The results were talked about a lot at the 2014 ASCO conference. The one and two year survival # are really positive with #'s in the 80% range for 1 year and in the mid 70 % range over 2 years. Best of luck!!! Ed
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- July 19, 2014 at 1:26 am
Matt, did you read the post from Tim on 7/10/2014 about the expanded access to the ipi and Nivo phase 3 trial. I was able to get on the trial Jan 2014 and have been stage 4 since July 2013 with lung and brain mets- ( stable after cyberknife treatment). I have been doing great on the trial so far!!! I think it would be worth looking into. The results were talked about a lot at the 2014 ASCO conference. The one and two year survival # are really positive with #'s in the 80% range for 1 year and in the mid 70 % range over 2 years. Best of luck!!! Ed
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- July 18, 2014 at 9:21 pm
Sorry to hear about the progression on the BRAF/MEK combination Matt. I saw from your profile that it looks like you started it back in December? Curious if you experienced an initial response at some point during the time you were on it?
Regardless, I'd agree that ipi would be the next logical course of action in almost anyone's book. Have they mentioned any "washout period" after finishing the combination before starting? I've heard others mention it as a precaution to prevent any interactions, but don't know how much there is to it — maybe worth a question to your doctor, though.
Some might suggest a PD-1 trial or EAP, which would be reasonable, too, but with the EAP's and even Merck's likely October approval of pembro, prior ipi treatment is and will be a prerequisite, so if it were me, I'd take the same approach as you with ipi and then be positioned to try anti-PD-1 if needed later.
Kind regards, Joe
-
- July 18, 2014 at 9:21 pm
Sorry to hear about the progression on the BRAF/MEK combination Matt. I saw from your profile that it looks like you started it back in December? Curious if you experienced an initial response at some point during the time you were on it?
Regardless, I'd agree that ipi would be the next logical course of action in almost anyone's book. Have they mentioned any "washout period" after finishing the combination before starting? I've heard others mention it as a precaution to prevent any interactions, but don't know how much there is to it — maybe worth a question to your doctor, though.
Some might suggest a PD-1 trial or EAP, which would be reasonable, too, but with the EAP's and even Merck's likely October approval of pembro, prior ipi treatment is and will be a prerequisite, so if it were me, I'd take the same approach as you with ipi and then be positioned to try anti-PD-1 if needed later.
Kind regards, Joe
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- July 19, 2014 at 2:16 am
Matt,
I was going to make the same suggestion as Ed. It's probably a long shot because of the timing but definitely worth looking into. I just found out from my clinical trial coordinator at UVA that they could have their first two patients actually getting an infusion within the next couple weeks. He said UVA is the first location in the country to combo EAP available. Maybe others won't be far behind.
Having said that, I don't think the Ipi is a bad option either, just think the combo is the best option out there right now.
Brian
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- July 19, 2014 at 2:16 am
Matt,
I was going to make the same suggestion as Ed. It's probably a long shot because of the timing but definitely worth looking into. I just found out from my clinical trial coordinator at UVA that they could have their first two patients actually getting an infusion within the next couple weeks. He said UVA is the first location in the country to combo EAP available. Maybe others won't be far behind.
Having said that, I don't think the Ipi is a bad option either, just think the combo is the best option out there right now.
Brian
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- July 19, 2014 at 2:16 am
Matt,
I was going to make the same suggestion as Ed. It's probably a long shot because of the timing but definitely worth looking into. I just found out from my clinical trial coordinator at UVA that they could have their first two patients actually getting an infusion within the next couple weeks. He said UVA is the first location in the country to combo EAP available. Maybe others won't be far behind.
Having said that, I don't think the Ipi is a bad option either, just think the combo is the best option out there right now.
Brian
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- July 24, 2014 at 10:44 pm
Oh Matt…. I'm so sorry to hear that news! It seems appropriate that the next treatment would be ipi or pd1 if possible. My husband has a petscan tomorrow morning so having some scanxiety… but expecting more great results despite the fact that he's actually been off of the combo more than on because of intermittent dosing for the past 3 months.
The one thing that he has been taking consistently almost since he was diagnosed a year and a half ago is hemp oil…. Please look into it with an open mind knowing that you won't get much support from the medical community in the states. There is more and more supporting information that is coming out that it is curing various cancers, melanoma being one of them. I know another melanoma survivor (stage 4) who is NED due to hemp oil. He opted against traditional treatments and took only hemp oil. I don't want to give anyone false hope as I'm sure it isn't the answer for everyone however it works forever some.
There is the issues of it being illegal and not available on any open market that I'm aware of but you can make it yourself… One must wonder why is it illegal? You cannot overdose on it and you don't get high from taking it… It's safer than any treatments currently available….there are no side effects at all. I take a risk every time I talk about here but I feel that it's worth it if it saves lives. If you any questions my husband and I would be happy to answer them via private message and that is true for whomever else reads this message. My email is [email protected]. You are in my prayers!
Blessings and love to you and yours,
Gina
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- July 24, 2014 at 10:44 pm
Oh Matt…. I'm so sorry to hear that news! It seems appropriate that the next treatment would be ipi or pd1 if possible. My husband has a petscan tomorrow morning so having some scanxiety… but expecting more great results despite the fact that he's actually been off of the combo more than on because of intermittent dosing for the past 3 months.
The one thing that he has been taking consistently almost since he was diagnosed a year and a half ago is hemp oil…. Please look into it with an open mind knowing that you won't get much support from the medical community in the states. There is more and more supporting information that is coming out that it is curing various cancers, melanoma being one of them. I know another melanoma survivor (stage 4) who is NED due to hemp oil. He opted against traditional treatments and took only hemp oil. I don't want to give anyone false hope as I'm sure it isn't the answer for everyone however it works forever some.
There is the issues of it being illegal and not available on any open market that I'm aware of but you can make it yourself… One must wonder why is it illegal? You cannot overdose on it and you don't get high from taking it… It's safer than any treatments currently available….there are no side effects at all. I take a risk every time I talk about here but I feel that it's worth it if it saves lives. If you any questions my husband and I would be happy to answer them via private message and that is true for whomever else reads this message. My email is [email protected]. You are in my prayers!
Blessings and love to you and yours,
Gina
-
- July 24, 2014 at 10:44 pm
Oh Matt…. I'm so sorry to hear that news! It seems appropriate that the next treatment would be ipi or pd1 if possible. My husband has a petscan tomorrow morning so having some scanxiety… but expecting more great results despite the fact that he's actually been off of the combo more than on because of intermittent dosing for the past 3 months.
The one thing that he has been taking consistently almost since he was diagnosed a year and a half ago is hemp oil…. Please look into it with an open mind knowing that you won't get much support from the medical community in the states. There is more and more supporting information that is coming out that it is curing various cancers, melanoma being one of them. I know another melanoma survivor (stage 4) who is NED due to hemp oil. He opted against traditional treatments and took only hemp oil. I don't want to give anyone false hope as I'm sure it isn't the answer for everyone however it works forever some.
There is the issues of it being illegal and not available on any open market that I'm aware of but you can make it yourself… One must wonder why is it illegal? You cannot overdose on it and you don't get high from taking it… It's safer than any treatments currently available….there are no side effects at all. I take a risk every time I talk about here but I feel that it's worth it if it saves lives. If you any questions my husband and I would be happy to answer them via private message and that is true for whomever else reads this message. My email is [email protected]. You are in my prayers!
Blessings and love to you and yours,
Gina
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