› Forums › General Melanoma Community › Taflinar/Mekinest Round 2
- This topic has 36 replies, 7 voices, and was last updated 7 years, 9 months ago by
Sflynn.
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- May 3, 2016 at 11:42 pm
Hello everyone
My husband was diagnosed in August 2015 stage IV melanoma with lung and brain mets, BRAF positive and can't find orgin.
He received 1 Opdivo treatment which had to be terminated due to a severe reaction. It took approximately 6-8 weeks to clear it up with high doses of steroids. In this time he also received 10 WBRT and 2 SRS treatments.
In November he started the Taflinar Mekinist combo. This made him severely lethargic, loss of appetite and dehydrated. He made it 4 weeks on the treatment before ending up admitted to the hospital on Christmas Eve with saddle pulmonary embolisms and DVTs. After multiple scans it showed that there was more brain mets, edema and hemorrhaging on his brain. They discontinued treatment and sent us home 6 days later on hospice care.
Which brings me to today.. He decided to try this treatment again and sign himself out of hospice. The latest pet scan, MRI and catscan showed significant progression and new signs of the metastic disease in both lungs (2 lesions one fairly large) and brain (15 mets-3 large that are hemorrhaging). Also in his right femoral chain. Hemorrhaging of lesions, swelling, Short term memory loss, seizures, loss of mobility are just some of the new symptoms.
I support his decision to try this treatment again but I can't help to think is it the right treatment?? I guess I just looking for some positive results or the honest truth from others that are in the same stage.
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- May 3, 2016 at 11:58 pm
Hi SFlynn, I hope it works for your husband this time!!!! Best wishes from Ottawa, Canada!!! Ed
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- May 3, 2016 at 11:58 pm
Hi SFlynn, I hope it works for your husband this time!!!! Best wishes from Ottawa, Canada!!! Ed
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- May 3, 2016 at 11:58 pm
Hi SFlynn, I hope it works for your husband this time!!!! Best wishes from Ottawa, Canada!!! Ed
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- May 4, 2016 at 3:23 am
Sorry to hear. While there haven't been trials, there is clinical evidence that you can return to BRAF-MEK for a second (or third, etc.) run. For example, I was able to get a bit of a second run with BRAF-MEK following an initial run of 18 months and then a 4 month "break" (during which I was on Keytruda). That said, it doesn't sound like your husband had much of an initial run with BRAF-MEK, so I'm not sure I follow the logic of trying again. If he is inclined to be aggressive (and there is a case for not being aggressive at some point), is chemo worth looking at (not curative, but perhaps would provide some time and stability to look for a clinical trial)?
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- May 4, 2016 at 1:40 pm
Thanks for the input Mat.. He really didn't have much of a run do to all the other complications that came about. I've looked into some clinical studies and trials around us and unfortunately my husband was not on board. I'm not understanding the logic behind the second run again myself.
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- May 4, 2016 at 1:40 pm
Thanks for the input Mat.. He really didn't have much of a run do to all the other complications that came about. I've looked into some clinical studies and trials around us and unfortunately my husband was not on board. I'm not understanding the logic behind the second run again myself.
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- May 4, 2016 at 1:40 pm
Thanks for the input Mat.. He really didn't have much of a run do to all the other complications that came about. I've looked into some clinical studies and trials around us and unfortunately my husband was not on board. I'm not understanding the logic behind the second run again myself.
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- May 4, 2016 at 3:23 am
Sorry to hear. While there haven't been trials, there is clinical evidence that you can return to BRAF-MEK for a second (or third, etc.) run. For example, I was able to get a bit of a second run with BRAF-MEK following an initial run of 18 months and then a 4 month "break" (during which I was on Keytruda). That said, it doesn't sound like your husband had much of an initial run with BRAF-MEK, so I'm not sure I follow the logic of trying again. If he is inclined to be aggressive (and there is a case for not being aggressive at some point), is chemo worth looking at (not curative, but perhaps would provide some time and stability to look for a clinical trial)?
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- May 4, 2016 at 3:23 am
Sorry to hear. While there haven't been trials, there is clinical evidence that you can return to BRAF-MEK for a second (or third, etc.) run. For example, I was able to get a bit of a second run with BRAF-MEK following an initial run of 18 months and then a 4 month "break" (during which I was on Keytruda). That said, it doesn't sound like your husband had much of an initial run with BRAF-MEK, so I'm not sure I follow the logic of trying again. If he is inclined to be aggressive (and there is a case for not being aggressive at some point), is chemo worth looking at (not curative, but perhaps would provide some time and stability to look for a clinical trial)?
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- May 4, 2016 at 3:55 am
This is such a tough battle, we wish your husband and family the best. I'm curious whether your doctor considered Zelboraf? Based on his adverse reactions to the TAF/MEK combo, perhaps a different BRAF inhibitor could offer a different result. Personally the Zel was very effective for me in quickly reducing tumor burden, but delivered very bad side-effects. Then I switched to TAF/MEK, which was less effective, but had almost no side-effects whatsoever. Since everyone is different, and your past experience with TAF/MEK had limited value, please find out if Zelboraf (Vemurafenib) could be an option to explore.
Gary
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- May 4, 2016 at 3:55 am
This is such a tough battle, we wish your husband and family the best. I'm curious whether your doctor considered Zelboraf? Based on his adverse reactions to the TAF/MEK combo, perhaps a different BRAF inhibitor could offer a different result. Personally the Zel was very effective for me in quickly reducing tumor burden, but delivered very bad side-effects. Then I switched to TAF/MEK, which was less effective, but had almost no side-effects whatsoever. Since everyone is different, and your past experience with TAF/MEK had limited value, please find out if Zelboraf (Vemurafenib) could be an option to explore.
Gary
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- May 4, 2016 at 3:55 am
This is such a tough battle, we wish your husband and family the best. I'm curious whether your doctor considered Zelboraf? Based on his adverse reactions to the TAF/MEK combo, perhaps a different BRAF inhibitor could offer a different result. Personally the Zel was very effective for me in quickly reducing tumor burden, but delivered very bad side-effects. Then I switched to TAF/MEK, which was less effective, but had almost no side-effects whatsoever. Since everyone is different, and your past experience with TAF/MEK had limited value, please find out if Zelboraf (Vemurafenib) could be an option to explore.
Gary
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- May 4, 2016 at 11:11 am
I had a really bad reaction the the taf/mek combi when I went on it for the second time after pd1 treatment. I started really low doses and worked my way up to 5 days on 2 days off. It took about 8 months to get to that stage. I was stable for 16months. Good luck to your husband. They also have 50mg taf tablets which might be easier to tolerate.
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- May 4, 2016 at 11:11 am
I had a really bad reaction the the taf/mek combi when I went on it for the second time after pd1 treatment. I started really low doses and worked my way up to 5 days on 2 days off. It took about 8 months to get to that stage. I was stable for 16months. Good luck to your husband. They also have 50mg taf tablets which might be easier to tolerate.
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- May 4, 2016 at 11:11 am
I had a really bad reaction the the taf/mek combi when I went on it for the second time after pd1 treatment. I started really low doses and worked my way up to 5 days on 2 days off. It took about 8 months to get to that stage. I was stable for 16months. Good luck to your husband. They also have 50mg taf tablets which might be easier to tolerate.
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- May 4, 2016 at 1:01 pm
Sorry for all that you and your husband are dealing with. But, yes! Some folks can REgain a response to BRAFi….http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/brafi-after-braf-inhibitorscan-you.html
Hopefully he can use BRAFi to at least diminish his tumor burden so he can move to another treatment option. Given your situation, it is hard to think what that might be. Perhaps this will help…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/hope-after-standard-melanoma.html
I wish you and your husband my best. Celeste
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- May 4, 2016 at 1:01 pm
Sorry for all that you and your husband are dealing with. But, yes! Some folks can REgain a response to BRAFi….http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/brafi-after-braf-inhibitorscan-you.html
Hopefully he can use BRAFi to at least diminish his tumor burden so he can move to another treatment option. Given your situation, it is hard to think what that might be. Perhaps this will help…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/hope-after-standard-melanoma.html
I wish you and your husband my best. Celeste
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- May 4, 2016 at 1:01 pm
Sorry for all that you and your husband are dealing with. But, yes! Some folks can REgain a response to BRAFi….http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/brafi-after-braf-inhibitorscan-you.html
Hopefully he can use BRAFi to at least diminish his tumor burden so he can move to another treatment option. Given your situation, it is hard to think what that might be. Perhaps this will help…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/hope-after-standard-melanoma.html
I wish you and your husband my best. Celeste
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- May 4, 2016 at 3:13 pm
YES, you can return for a second time on the BRAF /MEK. My brother was on the initial trial got a good 16 months on this until progression. Went off did some immunotherapy and then went back on with ANOTHER good 16 months. Now he is on a different treatment. The idea is hopefully with some time off you can go back on. My brother suggested this to his doctor and he said lets give it a try even though there was not a lot of data. But this is now an option.
Praying for the best for you.
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- May 4, 2016 at 3:13 pm
YES, you can return for a second time on the BRAF /MEK. My brother was on the initial trial got a good 16 months on this until progression. Went off did some immunotherapy and then went back on with ANOTHER good 16 months. Now he is on a different treatment. The idea is hopefully with some time off you can go back on. My brother suggested this to his doctor and he said lets give it a try even though there was not a lot of data. But this is now an option.
Praying for the best for you.
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- May 4, 2016 at 3:13 pm
YES, you can return for a second time on the BRAF /MEK. My brother was on the initial trial got a good 16 months on this until progression. Went off did some immunotherapy and then went back on with ANOTHER good 16 months. Now he is on a different treatment. The idea is hopefully with some time off you can go back on. My brother suggested this to his doctor and he said lets give it a try even though there was not a lot of data. But this is now an option.
Praying for the best for you.
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- August 2, 2016 at 9:28 am
Well.. My update to my last post is not how I thought it would be.. My husband tried a second round of Taf/Mek after it failing the 1st time. He made it 12 weeks this time. He had a repeat MRI and catscan After having to take him to the e.r. For severe head and ear pain. He was admitted due to complications to the progression of the disease. Even on treatment he developed new brain mets, total of 18 now. Ranging in size 10mm all the way up to 3x3cm and is starting to invade the dura on his right temporal lobe..All mets now have started all to hemorrhage. An increase in steroids and anti seizure meds seem to be doing nothing!! Docs are not hopeful being that he is almost 1 year diagnosed. This disease is horrible!!!
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- August 2, 2016 at 9:28 am
Well.. My update to my last post is not how I thought it would be.. My husband tried a second round of Taf/Mek after it failing the 1st time. He made it 12 weeks this time. He had a repeat MRI and catscan After having to take him to the e.r. For severe head and ear pain. He was admitted due to complications to the progression of the disease. Even on treatment he developed new brain mets, total of 18 now. Ranging in size 10mm all the way up to 3x3cm and is starting to invade the dura on his right temporal lobe..All mets now have started all to hemorrhage. An increase in steroids and anti seizure meds seem to be doing nothing!! Docs are not hopeful being that he is almost 1 year diagnosed. This disease is horrible!!!
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- August 2, 2016 at 9:28 am
Well.. My update to my last post is not how I thought it would be.. My husband tried a second round of Taf/Mek after it failing the 1st time. He made it 12 weeks this time. He had a repeat MRI and catscan After having to take him to the e.r. For severe head and ear pain. He was admitted due to complications to the progression of the disease. Even on treatment he developed new brain mets, total of 18 now. Ranging in size 10mm all the way up to 3x3cm and is starting to invade the dura on his right temporal lobe..All mets now have started all to hemorrhage. An increase in steroids and anti seizure meds seem to be doing nothing!! Docs are not hopeful being that he is almost 1 year diagnosed. This disease is horrible!!!
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