› Forums › General Melanoma Community › Failed IPI, Keytruda, now on BRAF+Mek. Are there any more options once the combo stops working? (Stage IV: lungs)
- This topic has 18 replies, 4 voices, and was last updated 7 years, 7 months ago by
Bubbles.
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- September 29, 2016 at 8:31 pm
Hey, so I did IPI, but it came back in my lungs. Started Keytruda but two months later ended up in the hospital unable to breathe.
Dr. switched me immediately to debrafenib + mekinist combo, which relieved the pain immediately, but I know this is only a temporary bandaid.
Are there any options for long-term results after failing IPI and PD-1? Are there any promissing new trials in the pipeline?
Any long-term lung survivors after failing immune therapy?
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- September 29, 2016 at 9:20 pm
I too failed on the ipi. Was given opdivo and had some response but after 8 mos stopped responding. I'm now in a genetic trial in Dallas. This study has about 29 different drugs that you could possibly be matched up with based on the genetics of your tumor. Based on my tumor biopsy, I've been matched with Palbociclib. Was approved for breast cancer but now they are testing it with melanoma. I've had 3 cycles (3wks on, 1wk off) and so far have noticed tumors shrinking. I know I still have a ways to go but at least it's giving me hope. Might be a trial you want to check out. Hope this helps and good luck!
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- September 29, 2016 at 9:20 pm
I too failed on the ipi. Was given opdivo and had some response but after 8 mos stopped responding. I'm now in a genetic trial in Dallas. This study has about 29 different drugs that you could possibly be matched up with based on the genetics of your tumor. Based on my tumor biopsy, I've been matched with Palbociclib. Was approved for breast cancer but now they are testing it with melanoma. I've had 3 cycles (3wks on, 1wk off) and so far have noticed tumors shrinking. I know I still have a ways to go but at least it's giving me hope. Might be a trial you want to check out. Hope this helps and good luck!
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- September 30, 2016 at 1:24 am
Anonymous, are you on the NCI Match trial?
https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1
Sounds like a pretty cool program. Glad to hear you seen to be having success.
Brian
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- September 30, 2016 at 1:50 pm
I'm in a different study than the NCI Match trial, but it's pretty much the same. Study I'm in is sponsored by Stand Up To Cancer and Yale University. They do have several states involved in this study. I believe they call it a Genomic Study (which basically is the same as the NCI Match). Should have scans at the end of Oct. Keeping fingers crossed it's working!!
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- September 30, 2016 at 1:50 pm
I'm in a different study than the NCI Match trial, but it's pretty much the same. Study I'm in is sponsored by Stand Up To Cancer and Yale University. They do have several states involved in this study. I believe they call it a Genomic Study (which basically is the same as the NCI Match). Should have scans at the end of Oct. Keeping fingers crossed it's working!!
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- September 30, 2016 at 1:50 pm
I'm in a different study than the NCI Match trial, but it's pretty much the same. Study I'm in is sponsored by Stand Up To Cancer and Yale University. They do have several states involved in this study. I believe they call it a Genomic Study (which basically is the same as the NCI Match). Should have scans at the end of Oct. Keeping fingers crossed it's working!!
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- September 30, 2016 at 1:24 am
Anonymous, are you on the NCI Match trial?
https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1
Sounds like a pretty cool program. Glad to hear you seen to be having success.
Brian
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- September 30, 2016 at 1:24 am
Anonymous, are you on the NCI Match trial?
https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match&rank=1
Sounds like a pretty cool program. Glad to hear you seen to be having success.
Brian
-
- September 29, 2016 at 9:20 pm
I too failed on the ipi. Was given opdivo and had some response but after 8 mos stopped responding. I'm now in a genetic trial in Dallas. This study has about 29 different drugs that you could possibly be matched up with based on the genetics of your tumor. Based on my tumor biopsy, I've been matched with Palbociclib. Was approved for breast cancer but now they are testing it with melanoma. I've had 3 cycles (3wks on, 1wk off) and so far have noticed tumors shrinking. I know I still have a ways to go but at least it's giving me hope. Might be a trial you want to check out. Hope this helps and good luck!
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- September 30, 2016 at 7:44 am
Sorry for what you have gone through. There are many promising combinations you and your doc could look at if needed (though some folks do really well on BRAFi by using alternate dosing schedules and slight med adjustments for YEARS…Richard K is just one on this board). Many trials are combining immunotherapy with JAK inhibitors or IDO inhibitors. That may or may not be an option for you given your respiratory issues on Keytruda. However, resp problems are more frequent when folks have lung mets…so if BRAFi takes care of those…perhaps the inflammation from before would not occur. However, that is something you would have to really talk to your doc about. Of course there is TIL…which can work well…when it works. Additionally, I think it is super important for melanoma patients who have failed multiple therapies to attain additional tumor testing. As the prior posted mentioned, sometimes surprising mutations are found that are responsive to products more typically used for other cancers. One on this forum has been doing really well now that he is being treated with meds for the HER mutation more commonly found in breast cancer. I wish you well…celeste
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- September 30, 2016 at 8:30 pm
Here's an old report on the topic: http://chaoticallypreciselifeloveandmelanoma.blogspot.fr/2013/01/better-ways-to-use-braf-inhibitors-for.html
It is pretty much the accepted regimen now. Wishing you my best! C
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- September 30, 2016 at 8:30 pm
Here's an old report on the topic: http://chaoticallypreciselifeloveandmelanoma.blogspot.fr/2013/01/better-ways-to-use-braf-inhibitors-for.html
It is pretty much the accepted regimen now. Wishing you my best! C
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- September 30, 2016 at 8:30 pm
Here's an old report on the topic: http://chaoticallypreciselifeloveandmelanoma.blogspot.fr/2013/01/better-ways-to-use-braf-inhibitors-for.html
It is pretty much the accepted regimen now. Wishing you my best! C
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- September 30, 2016 at 7:44 am
Sorry for what you have gone through. There are many promising combinations you and your doc could look at if needed (though some folks do really well on BRAFi by using alternate dosing schedules and slight med adjustments for YEARS…Richard K is just one on this board). Many trials are combining immunotherapy with JAK inhibitors or IDO inhibitors. That may or may not be an option for you given your respiratory issues on Keytruda. However, resp problems are more frequent when folks have lung mets…so if BRAFi takes care of those…perhaps the inflammation from before would not occur. However, that is something you would have to really talk to your doc about. Of course there is TIL…which can work well…when it works. Additionally, I think it is super important for melanoma patients who have failed multiple therapies to attain additional tumor testing. As the prior posted mentioned, sometimes surprising mutations are found that are responsive to products more typically used for other cancers. One on this forum has been doing really well now that he is being treated with meds for the HER mutation more commonly found in breast cancer. I wish you well…celeste
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- September 30, 2016 at 7:44 am
Sorry for what you have gone through. There are many promising combinations you and your doc could look at if needed (though some folks do really well on BRAFi by using alternate dosing schedules and slight med adjustments for YEARS…Richard K is just one on this board). Many trials are combining immunotherapy with JAK inhibitors or IDO inhibitors. That may or may not be an option for you given your respiratory issues on Keytruda. However, resp problems are more frequent when folks have lung mets…so if BRAFi takes care of those…perhaps the inflammation from before would not occur. However, that is something you would have to really talk to your doc about. Of course there is TIL…which can work well…when it works. Additionally, I think it is super important for melanoma patients who have failed multiple therapies to attain additional tumor testing. As the prior posted mentioned, sometimes surprising mutations are found that are responsive to products more typically used for other cancers. One on this forum has been doing really well now that he is being treated with meds for the HER mutation more commonly found in breast cancer. I wish you well…celeste
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