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- This topic has 30 replies, 6 voices, and was last updated 12 years, 1 month ago by
awillett1991.
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- October 16, 2013 at 6:54 am
My mums braf test is negative and she has rheumatoid arthritis which means she can’t have immunotherapy.The oncologist has said she can only have chemotherapy which onky has a 10% chance of success.
She has mets on her liver, spleen, lungs and brain.
Where do we go from here?
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- October 16, 2013 at 11:44 am
A number of people on this forum have done very well with biochemo, which is a combination of several drugs like temodar, cisplatin and IL-2. Unfortunately, it is a difficult treatment with a lot of side effects so patients have to be relatively strong and healthy to be able to benefit from it. The other thing your mother could try is the MEK inhibitor trametinib (trade name Mekinist). It works best in combination wtih a BRAF inhibitor but it does work on its own, too. Unfortunately, even the "best" new treatments we have only work in 15-30% of the patients who take them. All one can do is ignore the stats and go for the treatmetn that seems the most promising at the time.
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- October 16, 2013 at 11:44 am
A number of people on this forum have done very well with biochemo, which is a combination of several drugs like temodar, cisplatin and IL-2. Unfortunately, it is a difficult treatment with a lot of side effects so patients have to be relatively strong and healthy to be able to benefit from it. The other thing your mother could try is the MEK inhibitor trametinib (trade name Mekinist). It works best in combination wtih a BRAF inhibitor but it does work on its own, too. Unfortunately, even the "best" new treatments we have only work in 15-30% of the patients who take them. All one can do is ignore the stats and go for the treatmetn that seems the most promising at the time.
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- October 16, 2013 at 11:44 am
A number of people on this forum have done very well with biochemo, which is a combination of several drugs like temodar, cisplatin and IL-2. Unfortunately, it is a difficult treatment with a lot of side effects so patients have to be relatively strong and healthy to be able to benefit from it. The other thing your mother could try is the MEK inhibitor trametinib (trade name Mekinist). It works best in combination wtih a BRAF inhibitor but it does work on its own, too. Unfortunately, even the "best" new treatments we have only work in 15-30% of the patients who take them. All one can do is ignore the stats and go for the treatmetn that seems the most promising at the time.
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- October 16, 2013 at 1:15 pm
Since biochemo has both IL-2 and Interferon, I'm not sure a doctor would give that to someone with an autoimmune disease. It's worth a discussion. Chemotherapy is an option. Certainly I would consider some type of treatment for the brain mets. Temodar and Lomustine (used in Australia) do have the ability to pass the blood brain barrier, but I would pursue some type of brain radiation (either targeted or whole) dependent upon how many brain mets she has. POW is right, though, no therapy has great numbers with it so chemo may be as good an option as any.
Best wishes,
Janner
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- October 16, 2013 at 3:46 pm
Janner is correct, no doc would give biochemo to your mother with her condition. You might check out the ADC trial discussion as it is available in Australia: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 Also, POW is incorrect about MEK being given. You can't get it unless you are BRAF positive.
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- October 16, 2013 at 7:13 pm
Please go back and check your facts. BRAF and MEK are two different proteins in the melanoma cell proliferation pathway. The BRAF inhibitors that are currently available only work if you have the V600E or K mutation in the BRAF protein. Tthe MEK inhibitors work on the MEK protein– no mutations are involved. Mekinist, the MEK inhibitor, is currently FDA approved for treating melanoma and it has nothing to do with BRAF.
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- October 17, 2013 at 5:34 am
FWIW awhile ago my oncologist mentioned MEK inhibitors as a possibility for patients with NRAS-mutated melanoma, which has been my case. But later he said it didn't work out. From this prescribing information sheet linked from mekinist.com, it does look like they restricted it to people with BRAF-positive tumors. -
- October 17, 2013 at 7:35 am
Thanks for the info. You are correct– even though Mekinist works on a protein other than BRAF, it is only prescribed for patients with the BRAF mutation. That is confusing to me. I'm going to have to dig back in the literature to find out what's going on here. But the bottom line is that Mekinist is only used on people with the BRAF V600E/K mutation. Now I know. Thanks for setting me straight.
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- October 19, 2013 at 12:34 am
FYI I am BRAF V600D. I've been on Zel twice and it worked for me for 11 mos before failing. Currently trying the GSK combo but on a break and dropping the Mekinist due to side effects. Restarting the dabrafenib this week. It is FDA approved for E/K but there are others of us out there using it off-label. 😉
Amy
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- October 19, 2013 at 12:34 am
FYI I am BRAF V600D. I've been on Zel twice and it worked for me for 11 mos before failing. Currently trying the GSK combo but on a break and dropping the Mekinist due to side effects. Restarting the dabrafenib this week. It is FDA approved for E/K but there are others of us out there using it off-label. 😉
Amy
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- October 19, 2013 at 12:34 am
FYI I am BRAF V600D. I've been on Zel twice and it worked for me for 11 mos before failing. Currently trying the GSK combo but on a break and dropping the Mekinist due to side effects. Restarting the dabrafenib this week. It is FDA approved for E/K but there are others of us out there using it off-label. 😉
Amy
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- October 17, 2013 at 7:35 am
Thanks for the info. You are correct– even though Mekinist works on a protein other than BRAF, it is only prescribed for patients with the BRAF mutation. That is confusing to me. I'm going to have to dig back in the literature to find out what's going on here. But the bottom line is that Mekinist is only used on people with the BRAF V600E/K mutation. Now I know. Thanks for setting me straight.
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- October 17, 2013 at 7:35 am
Thanks for the info. You are correct– even though Mekinist works on a protein other than BRAF, it is only prescribed for patients with the BRAF mutation. That is confusing to me. I'm going to have to dig back in the literature to find out what's going on here. But the bottom line is that Mekinist is only used on people with the BRAF V600E/K mutation. Now I know. Thanks for setting me straight.
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- October 17, 2013 at 5:34 am
FWIW awhile ago my oncologist mentioned MEK inhibitors as a possibility for patients with NRAS-mutated melanoma, which has been my case. But later he said it didn't work out. From this prescribing information sheet linked from mekinist.com, it does look like they restricted it to people with BRAF-positive tumors. -
- October 17, 2013 at 5:34 am
FWIW awhile ago my oncologist mentioned MEK inhibitors as a possibility for patients with NRAS-mutated melanoma, which has been my case. But later he said it didn't work out. From this prescribing information sheet linked from mekinist.com, it does look like they restricted it to people with BRAF-positive tumors. -
- October 16, 2013 at 7:13 pm
Please go back and check your facts. BRAF and MEK are two different proteins in the melanoma cell proliferation pathway. The BRAF inhibitors that are currently available only work if you have the V600E or K mutation in the BRAF protein. Tthe MEK inhibitors work on the MEK protein– no mutations are involved. Mekinist, the MEK inhibitor, is currently FDA approved for treating melanoma and it has nothing to do with BRAF.
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- October 16, 2013 at 7:13 pm
Please go back and check your facts. BRAF and MEK are two different proteins in the melanoma cell proliferation pathway. The BRAF inhibitors that are currently available only work if you have the V600E or K mutation in the BRAF protein. Tthe MEK inhibitors work on the MEK protein– no mutations are involved. Mekinist, the MEK inhibitor, is currently FDA approved for treating melanoma and it has nothing to do with BRAF.
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- October 16, 2013 at 3:46 pm
Janner is correct, no doc would give biochemo to your mother with her condition. You might check out the ADC trial discussion as it is available in Australia: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 Also, POW is incorrect about MEK being given. You can't get it unless you are BRAF positive.
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- October 16, 2013 at 3:46 pm
Janner is correct, no doc would give biochemo to your mother with her condition. You might check out the ADC trial discussion as it is available in Australia: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 Also, POW is incorrect about MEK being given. You can't get it unless you are BRAF positive.
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- October 16, 2013 at 1:15 pm
Since biochemo has both IL-2 and Interferon, I'm not sure a doctor would give that to someone with an autoimmune disease. It's worth a discussion. Chemotherapy is an option. Certainly I would consider some type of treatment for the brain mets. Temodar and Lomustine (used in Australia) do have the ability to pass the blood brain barrier, but I would pursue some type of brain radiation (either targeted or whole) dependent upon how many brain mets she has. POW is right, though, no therapy has great numbers with it so chemo may be as good an option as any.
Best wishes,
Janner
-
- October 16, 2013 at 1:15 pm
Since biochemo has both IL-2 and Interferon, I'm not sure a doctor would give that to someone with an autoimmune disease. It's worth a discussion. Chemotherapy is an option. Certainly I would consider some type of treatment for the brain mets. Temodar and Lomustine (used in Australia) do have the ability to pass the blood brain barrier, but I would pursue some type of brain radiation (either targeted or whole) dependent upon how many brain mets she has. POW is right, though, no therapy has great numbers with it so chemo may be as good an option as any.
Best wishes,
Janner
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- October 17, 2013 at 5:52 am
The ADC trial mentioned above seems like it could be a good choice — depending on geography.
On that other board mentioned (http://melanomainternational.org), you can ask the for help finding a trial, and the person who leads it has a lot of connections with clinical trials and could be able to give you some options. Especially since you're in Austraiia, she (Catherine Poole) also keeps up with many clinical trials overseas.
Not discounting that chemo (DTIC/dacarbazine?) might help a small percentage of people — I chose and was able to be given two non-chemo treatments.
I hope your Mum will get a treatment option she feel good about.
-Kyle
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- October 17, 2013 at 5:52 am
The ADC trial mentioned above seems like it could be a good choice — depending on geography.
On that other board mentioned (http://melanomainternational.org), you can ask the for help finding a trial, and the person who leads it has a lot of connections with clinical trials and could be able to give you some options. Especially since you're in Austraiia, she (Catherine Poole) also keeps up with many clinical trials overseas.
Not discounting that chemo (DTIC/dacarbazine?) might help a small percentage of people — I chose and was able to be given two non-chemo treatments.
I hope your Mum will get a treatment option she feel good about.
-Kyle
-
- October 17, 2013 at 5:52 am
The ADC trial mentioned above seems like it could be a good choice — depending on geography.
On that other board mentioned (http://melanomainternational.org), you can ask the for help finding a trial, and the person who leads it has a lot of connections with clinical trials and could be able to give you some options. Especially since you're in Austraiia, she (Catherine Poole) also keeps up with many clinical trials overseas.
Not discounting that chemo (DTIC/dacarbazine?) might help a small percentage of people — I chose and was able to be given two non-chemo treatments.
I hope your Mum will get a treatment option she feel good about.
-Kyle
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