› Forums › General Melanoma Community › tafinlar/mekinist resistance
- This topic has 18 replies, 5 voices, and was last updated 8 years, 10 months ago by
LindaSR.
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- February 8, 2017 at 3:55 pm
My husband has been on the combination targeted therapy for nine months. His October PET scan showed all mets gone except for two and those two significantly reduced. His most recent PET scan last week showed a new hotspot in T9 with a score of 18.5 (in addition to 10 mets in brain found on MRI after a fall). Our onco wants to stay on the combination and wait 3 months for another PET scan as he "does not want to give up on the targeted therapy yet." I do not think this is wise and want to start him on combo. Ipi/Nivo immunotherapy immediately if not sooner. If immunotherapy works it will also work on the brain mets (he is currently on day eight of wbr – i pushed for srs but onco said too many mets) Thoughts on if resistance is gradual or not and does it make sense to continue targeted therapy and wait and see. I don't think melanoma is a wait and see cancer, it is a more aggressive cancer. As far as having an oncologist who specializes in melanoma, I wish. We live in BF west virginia and as it is travel 2.5 hours to Roanoke, VA to see oncologist. No husband can no longer drive due to small seizure that occurred after his recent fall. Any thoughts on resistance will be helpful. I think I am going to have our onco. consult with Dr. Tarhini at UPMC at the Hillman Cancer Center for advice.
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- February 8, 2017 at 4:10 pm
So ssorry for what you are dealing with. There are folks that can be maintained on BRAF/MEK for years. However, they are execptions with most folks develping resistance exactly as your husband did at 6-9 months. You are absolutely right. He needs a new therapy (and yes! ipi/nivo has the best odds going!!!) yesterday, but today is good too!!!! He needn't be SEEN by a melanoma specialist…but your onc certainly needs to be guided by one or you MUST seek care elsewhere!! If Tarhini will speak with your onc (and your onc will listen) that is great. But if not, please….seek additional support. I know that is not easy… I traveled from Chattanooga to Tampa for my care, but it can be done. Hang in there. celeste
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- February 8, 2017 at 4:32 pm
Here's a link to an article…that may help you bolster your argument with the onc…that indeed, if BRAF positive, patients will see a dramatic reduction in tumors with targeted therapy, esp when BRAFi is combined with MEKi….BUT….most folks develop resistance. Something melanoma Big Dogs recognize and are actively working to solve: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html
You can use the search bubble on my blog to find many more such articles if you think it will help. I wish you my best. Celeste
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- February 8, 2017 at 4:32 pm
Here's a link to an article…that may help you bolster your argument with the onc…that indeed, if BRAF positive, patients will see a dramatic reduction in tumors with targeted therapy, esp when BRAFi is combined with MEKi….BUT….most folks develop resistance. Something melanoma Big Dogs recognize and are actively working to solve: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html
You can use the search bubble on my blog to find many more such articles if you think it will help. I wish you my best. Celeste
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- February 8, 2017 at 4:32 pm
Here's a link to an article…that may help you bolster your argument with the onc…that indeed, if BRAF positive, patients will see a dramatic reduction in tumors with targeted therapy, esp when BRAFi is combined with MEKi….BUT….most folks develop resistance. Something melanoma Big Dogs recognize and are actively working to solve: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html
You can use the search bubble on my blog to find many more such articles if you think it will help. I wish you my best. Celeste
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- February 8, 2017 at 4:10 pm
So ssorry for what you are dealing with. There are folks that can be maintained on BRAF/MEK for years. However, they are execptions with most folks develping resistance exactly as your husband did at 6-9 months. You are absolutely right. He needs a new therapy (and yes! ipi/nivo has the best odds going!!!) yesterday, but today is good too!!!! He needn't be SEEN by a melanoma specialist…but your onc certainly needs to be guided by one or you MUST seek care elsewhere!! If Tarhini will speak with your onc (and your onc will listen) that is great. But if not, please….seek additional support. I know that is not easy… I traveled from Chattanooga to Tampa for my care, but it can be done. Hang in there. celeste
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- February 8, 2017 at 4:10 pm
So ssorry for what you are dealing with. There are folks that can be maintained on BRAF/MEK for years. However, they are execptions with most folks develping resistance exactly as your husband did at 6-9 months. You are absolutely right. He needs a new therapy (and yes! ipi/nivo has the best odds going!!!) yesterday, but today is good too!!!! He needn't be SEEN by a melanoma specialist…but your onc certainly needs to be guided by one or you MUST seek care elsewhere!! If Tarhini will speak with your onc (and your onc will listen) that is great. But if not, please….seek additional support. I know that is not easy… I traveled from Chattanooga to Tampa for my care, but it can be done. Hang in there. celeste
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- February 10, 2017 at 1:48 am
Go see Dr Davar at Hillman. Dr Kirkwood is the melanoma head guy but it is difficult to get in with him as he is winding down his career. Dr Davar is an amazing physician. Just finished his fellowship in July so can take on new patients but was hand picked for the job by Kirkwood. My husband's one interaction with Tarhini was not good. Davar was caring, thoughtful, knowledgeable and explained things so my husband understood.
Judy
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- February 10, 2017 at 1:48 am
Go see Dr Davar at Hillman. Dr Kirkwood is the melanoma head guy but it is difficult to get in with him as he is winding down his career. Dr Davar is an amazing physician. Just finished his fellowship in July so can take on new patients but was hand picked for the job by Kirkwood. My husband's one interaction with Tarhini was not good. Davar was caring, thoughtful, knowledgeable and explained things so my husband understood.
Judy
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- February 10, 2017 at 1:48 am
Go see Dr Davar at Hillman. Dr Kirkwood is the melanoma head guy but it is difficult to get in with him as he is winding down his career. Dr Davar is an amazing physician. Just finished his fellowship in July so can take on new patients but was hand picked for the job by Kirkwood. My husband's one interaction with Tarhini was not good. Davar was caring, thoughtful, knowledgeable and explained things so my husband understood.
Judy
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- February 13, 2017 at 7:51 am
Perhaps I'm a bit late in answering, but my wife is in the same boat – EXCEPT she's being treated at Melanoma speciality clinic. As soon as my wife's onco saw that she developed resistance to targeted therapy (new brain mets, already zapped with Gamma Knife), she switched her to Keytruda – we're talking within two weeks. First Keytruda session is today, in fact. Moreover, she's not stopping targeted therapy, but maintaining it at half-dosage for a transitional period. So, yea – I'd say don't take the wait and see approach if you can avoid it. Good luck!
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- February 13, 2017 at 7:51 am
Perhaps I'm a bit late in answering, but my wife is in the same boat – EXCEPT she's being treated at Melanoma speciality clinic. As soon as my wife's onco saw that she developed resistance to targeted therapy (new brain mets, already zapped with Gamma Knife), she switched her to Keytruda – we're talking within two weeks. First Keytruda session is today, in fact. Moreover, she's not stopping targeted therapy, but maintaining it at half-dosage for a transitional period. So, yea – I'd say don't take the wait and see approach if you can avoid it. Good luck!
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- February 14, 2017 at 6:12 pm
Thanks all for your comments. Doc still doesn't want to move to another treatment until he sees progression. I don't know why he doesn't see brain mets and T9 mets as progression. Driving me crazy and I hate to start over with another Dr. as we are looking at 4 hours away. He says he has a call in to Tarhini and waiting for a call back. If I don't hear from him in 48 hours I am going to another oncologist. Prob. UPMC Cancer Institute.
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- February 14, 2017 at 6:12 pm
Thanks all for your comments. Doc still doesn't want to move to another treatment until he sees progression. I don't know why he doesn't see brain mets and T9 mets as progression. Driving me crazy and I hate to start over with another Dr. as we are looking at 4 hours away. He says he has a call in to Tarhini and waiting for a call back. If I don't hear from him in 48 hours I am going to another oncologist. Prob. UPMC Cancer Institute.
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- February 14, 2017 at 6:12 pm
Thanks all for your comments. Doc still doesn't want to move to another treatment until he sees progression. I don't know why he doesn't see brain mets and T9 mets as progression. Driving me crazy and I hate to start over with another Dr. as we are looking at 4 hours away. He says he has a call in to Tarhini and waiting for a call back. If I don't hear from him in 48 hours I am going to another oncologist. Prob. UPMC Cancer Institute.
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- February 13, 2017 at 7:51 am
Perhaps I'm a bit late in answering, but my wife is in the same boat – EXCEPT she's being treated at Melanoma speciality clinic. As soon as my wife's onco saw that she developed resistance to targeted therapy (new brain mets, already zapped with Gamma Knife), she switched her to Keytruda – we're talking within two weeks. First Keytruda session is today, in fact. Moreover, she's not stopping targeted therapy, but maintaining it at half-dosage for a transitional period. So, yea – I'd say don't take the wait and see approach if you can avoid it. Good luck!
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