Newly Stage IV

Well….I think I would go with your oncologist's plan of ipi/nivo. I participated in a gene therapy treatment at NIH called MAGE TCR.  I wasn't a responder. (It's similar in protocol to TIL…doable but not the easiest.  You could do TIL later if you qualify.)  I then started Keytruda and was an immediate responder.  My doctor felt the combination of the T Cells and Keytruda was why I responded so quickly.

Maybe a second opinion would help you decide.   

Best Wishes!

Terrie

Well….I think I would go with your oncologist's plan of ipi/nivo. I participated in a gene therapy treatment at NIH called MAGE TCR.  I wasn't a responder. (It's similar in protocol to TIL…doable but not the easiest.  You could do TIL later if you qualify.)  I then started Keytruda and was an immediate responder.  My doctor felt the combination of the T Cells and Keytruda was why I responded so quickly.

Maybe a second opinion would help you decide.   

Best Wishes!

Terrie

Well….I think I would go with your oncologist's plan of ipi/nivo. I participated in a gene therapy treatment at NIH called MAGE TCR.  I wasn't a responder. (It's similar in protocol to TIL…doable but not the easiest.  You could do TIL later if you qualify.)  I then started Keytruda and was an immediate responder.  My doctor felt the combination of the T Cells and Keytruda was why I responded so quickly.

Maybe a second opinion would help you decide.   

Best Wishes!

Terrie

I had great results from ipi, but did not take nivo – I took and am still taking dabrafenib and tremetinib, but my melanoma was BRAF positive.  The problem with getting a second opinion is that it may be completely different than the first opinion, then what?  Who is right?  I am a bit jaded from dealing with so many doctors telling me different things;  I underwent radiation at one hospital then was told at the current hospital where I am treating that they never do radiation for melanoma. And it didn't work, the melanoma metastasized.  I am currently in complete remission from stage IV, so it can be done.  I would recommend you follow the doctor's recommendation as you can always try something different later if you don't respond.  Good luck to you.

I had great results from ipi, but did not take nivo – I took and am still taking dabrafenib and tremetinib, but my melanoma was BRAF positive.  The problem with getting a second opinion is that it may be completely different than the first opinion, then what?  Who is right?  I am a bit jaded from dealing with so many doctors telling me different things;  I underwent radiation at one hospital then was told at the current hospital where I am treating that they never do radiation for melanoma. And it didn't work, the melanoma metastasized.  I am currently in complete remission from stage IV, so it can be done.  I would recommend you follow the doctor's recommendation as you can always try something different later if you don't respond.  Good luck to you.

I had great results from ipi, but did not take nivo – I took and am still taking dabrafenib and tremetinib, but my melanoma was BRAF positive.  The problem with getting a second opinion is that it may be completely different than the first opinion, then what?  Who is right?  I am a bit jaded from dealing with so many doctors telling me different things;  I underwent radiation at one hospital then was told at the current hospital where I am treating that they never do radiation for melanoma. And it didn't work, the melanoma metastasized.  I am currently in complete remission from stage IV, so it can be done.  I would recommend you follow the doctor's recommendation as you can always try something different later if you don't respond.  Good luck to you.

I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it. 

TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working. 

You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!

I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it. 

TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working. 

You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!

I agree with your oncologist – if you're BRAF negative (or wild type), I think the combination ipi/nivo is probably one of the best treatments out there right now! It actually has some of the best response rates that you'll see from systemic therapy for melanoma. It is possible that toxicity (autoimmune side effects – diarrhea, itching most commonly, but potentially severe) could be a problem, however. It is also POSSIBLY (still being studied) important to try ipilimumab + the PD1 inhibitor together from the start instead of one after another or a combo AFTER trying something else, so for this reason as well, I think ipi/nivo is a good way to start. As a doc myself, I've reviewed a lot of the literature and I felt strongly about making sure my dad has access to this. He is actually flying to a different state for this treatment, which the melanoma specialist agreed may be worth it. 

TIL is really cool – I think the studies are still more preliminary. One thing to keep in mind also is whether the treatment you're choosing excludes you from future possible treatments/clinical trials. So you could try one if you want and jump to the other if it's not working. 

You're way too young for this (though everyone pretty much is in the end) – I'm sorry and I wish you the best!