› Forums › General Melanoma Community › Christmas Wish: ANY input on combining immuno with BRAF/mek pills?
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Patina.
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- December 24, 2015 at 12:25 am
Forum – does anyone have advice on combining immunotherapy with BRAF/mek pills?
Brief background: my mom was diagnosed with brain & body mets Oct 2014. She was on the Taf/Mek combo for 6 months and Taf alone for a further 6 months. Targeted therapy was a great success, reducing tumors in body & brain significantly. The therapy was reduced to half a dose of Tafinlar, when she was put on nivolumab 6 months ago. In Nov, her onc stopped BRAF/mek and added ipilimumab to the mix, when scans showed activity in her lymphs. He has confirmed that she is essentially on the ipi/nivo combo as both immunos are in her system. Her second infusion of ipilimumab was last Thurs (Dec 17th). Since starting ipi, we have seen drastic and consistent rise in LDH.
Yesterday, my mom had pleural effusion and a trip to the ER produced a new set of CTs, which showed new tumors in brain and body. We were told by hospital doctors that the situation is serious.
Tomorrow, we meet with her onc in charge (a great melanoma specialist). As a family, we question if its too soon to call the verdict on ipi working/not working. My dad has a gut feeling that a second-go on targeted therapy can kick melanoma butt again, as the disease never progressed when mek was included in the picture.
In a perfect world, we continue with ipi treatments 3 & 4 and add in some BRAF/meks. Her onc has warned us of the toxicity of combining this many treatments…does anyone have experience with resuming targeted therapy after progression on them? And in conjunction with multiple immunotherapies in the body? ANY input, whether it's links to articles, personal experiences, would be invaluable, on evidence of combining ipi/nivo combo with BRAF/mek inhibitors.
THANK YOU (and happy holidays!)
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- December 24, 2015 at 2:00 am
Merry Christmas: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/brafi-better-when-combined-with-or.html
Hope it helps. Celeste
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- December 24, 2015 at 2:00 am
Merry Christmas: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/brafi-better-when-combined-with-or.html
Hope it helps. Celeste
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- December 24, 2015 at 2:00 am
Merry Christmas: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/brafi-better-when-combined-with-or.html
Hope it helps. Celeste
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- December 25, 2015 at 8:24 pm
Hi,
You mention brain mets, but you don't mention any treatment specifically for them. If nothing was done besides Taf/Mek or nivolumab… I wonder the treating doctor has a lot of experience. Is he or she a melanoma specialist? Did she ever see a radiation oncologist about the brain mets? – Even if the doctor is a melanoma specialist I strongly urge you to see out a second opinion right away. I don't know of a doctor would have neglected to treat the brain mets by know with with gamma knife radiation, unless there was a issue with treating them.
My Mom was diagnosed in November of 2013 with Stage IV. After a misdiagnosis was discovered, she HAD brain mets, she was treated with gamma knife radiation for the brain tumors and then started ipi/Yervoy 4 days later. She has had very good results with this. There is clinical data that shows that gamma knife radiation on brain mets and treatment with ipi/Yervoy can increase the results. My Mom is living proof of that.
For your Mom I would strongly recommend looking into gamma knife radiation while she is getting ipi/Yerovy. You should find a radiation oncologist who has extensive experience and get a second opinion from a melanoma specialist.
If you are in Southern California go to USC in Los Angeles. My Mom's oncologist (Dr. Wong) just left there, but her radiation oncologist and the rest of the team there are awesome. Her new oncologist is Dr. Hu, but her radiation oncologist is Dr. Eric Chang, and he is fantastic.
"Ipilimumab and radiation therapy for melanoma brain metastases"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
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- December 25, 2015 at 8:24 pm
Hi,
You mention brain mets, but you don't mention any treatment specifically for them. If nothing was done besides Taf/Mek or nivolumab… I wonder the treating doctor has a lot of experience. Is he or she a melanoma specialist? Did she ever see a radiation oncologist about the brain mets? – Even if the doctor is a melanoma specialist I strongly urge you to see out a second opinion right away. I don't know of a doctor would have neglected to treat the brain mets by know with with gamma knife radiation, unless there was a issue with treating them.
My Mom was diagnosed in November of 2013 with Stage IV. After a misdiagnosis was discovered, she HAD brain mets, she was treated with gamma knife radiation for the brain tumors and then started ipi/Yervoy 4 days later. She has had very good results with this. There is clinical data that shows that gamma knife radiation on brain mets and treatment with ipi/Yervoy can increase the results. My Mom is living proof of that.
For your Mom I would strongly recommend looking into gamma knife radiation while she is getting ipi/Yerovy. You should find a radiation oncologist who has extensive experience and get a second opinion from a melanoma specialist.
If you are in Southern California go to USC in Los Angeles. My Mom's oncologist (Dr. Wong) just left there, but her radiation oncologist and the rest of the team there are awesome. Her new oncologist is Dr. Hu, but her radiation oncologist is Dr. Eric Chang, and he is fantastic.
"Ipilimumab and radiation therapy for melanoma brain metastases"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
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- December 25, 2015 at 8:24 pm
Hi,
You mention brain mets, but you don't mention any treatment specifically for them. If nothing was done besides Taf/Mek or nivolumab… I wonder the treating doctor has a lot of experience. Is he or she a melanoma specialist? Did she ever see a radiation oncologist about the brain mets? – Even if the doctor is a melanoma specialist I strongly urge you to see out a second opinion right away. I don't know of a doctor would have neglected to treat the brain mets by know with with gamma knife radiation, unless there was a issue with treating them.
My Mom was diagnosed in November of 2013 with Stage IV. After a misdiagnosis was discovered, she HAD brain mets, she was treated with gamma knife radiation for the brain tumors and then started ipi/Yervoy 4 days later. She has had very good results with this. There is clinical data that shows that gamma knife radiation on brain mets and treatment with ipi/Yervoy can increase the results. My Mom is living proof of that.
For your Mom I would strongly recommend looking into gamma knife radiation while she is getting ipi/Yerovy. You should find a radiation oncologist who has extensive experience and get a second opinion from a melanoma specialist.
If you are in Southern California go to USC in Los Angeles. My Mom's oncologist (Dr. Wong) just left there, but her radiation oncologist and the rest of the team there are awesome. Her new oncologist is Dr. Hu, but her radiation oncologist is Dr. Eric Chang, and he is fantastic.
"Ipilimumab and radiation therapy for melanoma brain metastases"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
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- December 25, 2015 at 9:02 pm
Thanks so much, Patina.
Yes, her melanoma onc & radiation onc are all under the same roof and work together. The plan has all along been for SRS w/3rd yervoy infusion (in a couple weeks). Given progression, we felt something else that worked systemically was needed to buy time for the immuno combo.
We met with her melanoma onc yesterday and our new plan is: nivo & ipi are in her system. We plan to continue with 3rd bag of ipi. Given the fast progression & onset of symptoms, we have added on low dose Tafinlar & temodar, with the knowledge that taf & temodar both work in the brain. Radiation is still on the table.
So, essentially, we are now attacking from four different angles: nivo, ipi, tafinlar, & temodar. Separetly, these things might not have the best odds, but we are hoping that some magic can occur between the combinations of multiple therapies & the synergies that occur between drugs. If anyone has expeirence or read about this, any encouraging reads would bring a much needed smile!
Tolerating ipi well. Some rash, episodes of diarrhea…right now, mood & fatigue seemt to be biggest hurdles, both of which are starting to affect her appetite (she says shes hungry but seems to have little desire to eat).
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- December 25, 2015 at 9:02 pm
Thanks so much, Patina.
Yes, her melanoma onc & radiation onc are all under the same roof and work together. The plan has all along been for SRS w/3rd yervoy infusion (in a couple weeks). Given progression, we felt something else that worked systemically was needed to buy time for the immuno combo.
We met with her melanoma onc yesterday and our new plan is: nivo & ipi are in her system. We plan to continue with 3rd bag of ipi. Given the fast progression & onset of symptoms, we have added on low dose Tafinlar & temodar, with the knowledge that taf & temodar both work in the brain. Radiation is still on the table.
So, essentially, we are now attacking from four different angles: nivo, ipi, tafinlar, & temodar. Separetly, these things might not have the best odds, but we are hoping that some magic can occur between the combinations of multiple therapies & the synergies that occur between drugs. If anyone has expeirence or read about this, any encouraging reads would bring a much needed smile!
Tolerating ipi well. Some rash, episodes of diarrhea…right now, mood & fatigue seemt to be biggest hurdles, both of which are starting to affect her appetite (she says shes hungry but seems to have little desire to eat).
-
- December 25, 2015 at 9:02 pm
Thanks so much, Patina.
Yes, her melanoma onc & radiation onc are all under the same roof and work together. The plan has all along been for SRS w/3rd yervoy infusion (in a couple weeks). Given progression, we felt something else that worked systemically was needed to buy time for the immuno combo.
We met with her melanoma onc yesterday and our new plan is: nivo & ipi are in her system. We plan to continue with 3rd bag of ipi. Given the fast progression & onset of symptoms, we have added on low dose Tafinlar & temodar, with the knowledge that taf & temodar both work in the brain. Radiation is still on the table.
So, essentially, we are now attacking from four different angles: nivo, ipi, tafinlar, & temodar. Separetly, these things might not have the best odds, but we are hoping that some magic can occur between the combinations of multiple therapies & the synergies that occur between drugs. If anyone has expeirence or read about this, any encouraging reads would bring a much needed smile!
Tolerating ipi well. Some rash, episodes of diarrhea…right now, mood & fatigue seemt to be biggest hurdles, both of which are starting to affect her appetite (she says shes hungry but seems to have little desire to eat).
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- December 26, 2015 at 12:56 am
I'm curious as to why they want to treat the brain mets at the 3rd ipi treatment and not earlier. Did they say why? How many does your Mom have?
My Mom ended up with colitis and we had to post phone her 3rd treatment of ipi and she never got her 4th. We were lucky in that we knew that ipi was working within the first 2 weeks after treatment. My Mom had tumors on her scalp, neck and trunk, and we could see the changes on her scalp and neck quickly. – By the time she had her 2nd infusion most or all of the tumors were much smaller while I think that others were gone by then or what should have been her 3rd treatment.
Because my Mom ended up with pretty severe colitis she had CT scans about 2 months after her treatment started. We were told that the tumors in her trunk (lungs, liver, kidney an adrenal gland) were also smaller. She was lucky in that all tumors responded to ipi and the gamma knife radiation treatment seemed to rev up her immune system quickly.
What has happened with your Mom's brain mets?
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- December 26, 2015 at 12:56 am
I'm curious as to why they want to treat the brain mets at the 3rd ipi treatment and not earlier. Did they say why? How many does your Mom have?
My Mom ended up with colitis and we had to post phone her 3rd treatment of ipi and she never got her 4th. We were lucky in that we knew that ipi was working within the first 2 weeks after treatment. My Mom had tumors on her scalp, neck and trunk, and we could see the changes on her scalp and neck quickly. – By the time she had her 2nd infusion most or all of the tumors were much smaller while I think that others were gone by then or what should have been her 3rd treatment.
Because my Mom ended up with pretty severe colitis she had CT scans about 2 months after her treatment started. We were told that the tumors in her trunk (lungs, liver, kidney an adrenal gland) were also smaller. She was lucky in that all tumors responded to ipi and the gamma knife radiation treatment seemed to rev up her immune system quickly.
What has happened with your Mom's brain mets?
-
- December 26, 2015 at 12:56 am
I'm curious as to why they want to treat the brain mets at the 3rd ipi treatment and not earlier. Did they say why? How many does your Mom have?
My Mom ended up with colitis and we had to post phone her 3rd treatment of ipi and she never got her 4th. We were lucky in that we knew that ipi was working within the first 2 weeks after treatment. My Mom had tumors on her scalp, neck and trunk, and we could see the changes on her scalp and neck quickly. – By the time she had her 2nd infusion most or all of the tumors were much smaller while I think that others were gone by then or what should have been her 3rd treatment.
Because my Mom ended up with pretty severe colitis she had CT scans about 2 months after her treatment started. We were told that the tumors in her trunk (lungs, liver, kidney an adrenal gland) were also smaller. She was lucky in that all tumors responded to ipi and the gamma knife radiation treatment seemed to rev up her immune system quickly.
What has happened with your Mom's brain mets?
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