Keytruda may be my last option

Steve – I am surprised to hear that you have not been tested for the BRAF mutation given the tumor load. You should verify that with your oncologist – if they have not taken the initiative to do this on their own, I would recommend finding a treatment center that specializes in melanoma as I would think that test is standard course of action.

If you are BRAF-positive, there are treatments out there that can be very effective at quickly knocking down the tumor load. These treatments tend to be shorter lived, but a reduced tumor load may increase the chances of success for Keytruda.

Key thing here is not to give up… as long as treatment options are there, keep trying them.

Kevin

Steve – I am surprised to hear that you have not been tested for the BRAF mutation given the tumor load. You should verify that with your oncologist – if they have not taken the initiative to do this on their own, I would recommend finding a treatment center that specializes in melanoma as I would think that test is standard course of action.

If you are BRAF-positive, there are treatments out there that can be very effective at quickly knocking down the tumor load. These treatments tend to be shorter lived, but a reduced tumor load may increase the chances of success for Keytruda.

Key thing here is not to give up… as long as treatment options are there, keep trying them.

Kevin

Steve – I am surprised to hear that you have not been tested for the BRAF mutation given the tumor load. You should verify that with your oncologist – if they have not taken the initiative to do this on their own, I would recommend finding a treatment center that specializes in melanoma as I would think that test is standard course of action.

If you are BRAF-positive, there are treatments out there that can be very effective at quickly knocking down the tumor load. These treatments tend to be shorter lived, but a reduced tumor load may increase the chances of success for Keytruda.

Key thing here is not to give up… as long as treatment options are there, keep trying them.

Kevin

Get on braf if you have mutation for it. While they are testing go ahead and start keytruda. If test shows braf then switch to it otherwise stay on keytruda. You gotta get moving man this disease as you know is a pain.

Hang in there man. I know how rough it can be but my tumor load doesn't seem to be as heavy as yours. I got about 30 plus tumors the largest is in my shoulder about 10 x 9 cm. 

You have to keep fighting. Others can only help. You have to dig deep and know you can beat this.

Im also stunned they did not do the braf test. You need that done right away and if positive start on the taf mek combo pills immediately. That is what braf is for is to reduce tumor load quickly. Like it usually starts within a week and they can confirm in as little as six weeks but you would already know before that because you would see it.

If braf test is negative or if it is going to take them more than two days (that's the minimum time they really need to test) then get on keytruda now. It takes awhile to work. Thus you will have to dig really deep to get to the results of it. I wouldn't bother waiting if the head looks clean or not just get on it. It and the braf can help with the brain.

Best of luck to you man. You have a hell of a battle to fight. Dig deep and keep fighting. I know if I hadn't started keytruda last May I wouldn't be here now. You can get better to you just have to fight fight fight. Believe me it can get better when they say two thirds of your tumors are shrinking and some have mild growth. It happened to me so it can happen to you too. Just hang in there and keep fighting. Never ever give up no matter how bad the pain and this crud is.

Artie

Get on braf if you have mutation for it. While they are testing go ahead and start keytruda. If test shows braf then switch to it otherwise stay on keytruda. You gotta get moving man this disease as you know is a pain.

Hang in there man. I know how rough it can be but my tumor load doesn't seem to be as heavy as yours. I got about 30 plus tumors the largest is in my shoulder about 10 x 9 cm. 

You have to keep fighting. Others can only help. You have to dig deep and know you can beat this.

Im also stunned they did not do the braf test. You need that done right away and if positive start on the taf mek combo pills immediately. That is what braf is for is to reduce tumor load quickly. Like it usually starts within a week and they can confirm in as little as six weeks but you would already know before that because you would see it.

If braf test is negative or if it is going to take them more than two days (that's the minimum time they really need to test) then get on keytruda now. It takes awhile to work. Thus you will have to dig really deep to get to the results of it. I wouldn't bother waiting if the head looks clean or not just get on it. It and the braf can help with the brain.

Best of luck to you man. You have a hell of a battle to fight. Dig deep and keep fighting. I know if I hadn't started keytruda last May I wouldn't be here now. You can get better to you just have to fight fight fight. Believe me it can get better when they say two thirds of your tumors are shrinking and some have mild growth. It happened to me so it can happen to you too. Just hang in there and keep fighting. Never ever give up no matter how bad the pain and this crud is.

Artie

Get on braf if you have mutation for it. While they are testing go ahead and start keytruda. If test shows braf then switch to it otherwise stay on keytruda. You gotta get moving man this disease as you know is a pain.

Hang in there man. I know how rough it can be but my tumor load doesn't seem to be as heavy as yours. I got about 30 plus tumors the largest is in my shoulder about 10 x 9 cm. 

You have to keep fighting. Others can only help. You have to dig deep and know you can beat this.

Im also stunned they did not do the braf test. You need that done right away and if positive start on the taf mek combo pills immediately. That is what braf is for is to reduce tumor load quickly. Like it usually starts within a week and they can confirm in as little as six weeks but you would already know before that because you would see it.

If braf test is negative or if it is going to take them more than two days (that's the minimum time they really need to test) then get on keytruda now. It takes awhile to work. Thus you will have to dig really deep to get to the results of it. I wouldn't bother waiting if the head looks clean or not just get on it. It and the braf can help with the brain.

Best of luck to you man. You have a hell of a battle to fight. Dig deep and keep fighting. I know if I hadn't started keytruda last May I wouldn't be here now. You can get better to you just have to fight fight fight. Believe me it can get better when they say two thirds of your tumors are shrinking and some have mild growth. It happened to me so it can happen to you too. Just hang in there and keep fighting. Never ever give up no matter how bad the pain and this crud is.

Artie

Steve, I read your sentence as saying you did not test positive for the BRAF mutation, and I see in a previous post here, that that's what happened for you. So as you indicate, BRAF treatment is not an option. 

Have you done a full course of Yervoy? How many infusions have you been able to get in? 

I can't think of any reason not to try a new treatment, especially Keytruda, if the current treatment with Yervoy has run its course, and if you can tolerate infusions every 3 weeks, Keytruda is easily tolerated for most people. That's been the case for me, I should get infusion #22 of Nivolumab next week. 

I understand a clinical trial might be difficult. Between the probable wash out periods, and the typical rigaramole to get from application to the first treatment, and the risk of getting rejected at the last minute, trials might be tough. Although for all I know, you might apply for one and get right in. One promising one for wild type patients is the LEE011/MEK162 trial someone reported here. Don't know if it has activity in the brain though.

But, my thinking would be, if you can get a promision treatment like Keytruda without all those hoops, seems like that is a pretty worthy plan. Also, since Keytruda is approved, is there any reason they're giving not to try it even if something in the brain doesn't look totally clean? (it's incredibly frustrated that the brain is somehow often viewed differently than getting disease anywhere else in the body). Especially as immune therapy with Keytruda might very well reach the brain too.

Good luck on what I hope is your next treatment plan.

Kyle

Steve, I read your sentence as saying you did not test positive for the BRAF mutation, and I see in a previous post here, that that's what happened for you. So as you indicate, BRAF treatment is not an option. 

Have you done a full course of Yervoy? How many infusions have you been able to get in? 

I can't think of any reason not to try a new treatment, especially Keytruda, if the current treatment with Yervoy has run its course, and if you can tolerate infusions every 3 weeks, Keytruda is easily tolerated for most people. That's been the case for me, I should get infusion #22 of Nivolumab next week. 

I understand a clinical trial might be difficult. Between the probable wash out periods, and the typical rigaramole to get from application to the first treatment, and the risk of getting rejected at the last minute, trials might be tough. Although for all I know, you might apply for one and get right in. One promising one for wild type patients is the LEE011/MEK162 trial someone reported here. Don't know if it has activity in the brain though.

But, my thinking would be, if you can get a promision treatment like Keytruda without all those hoops, seems like that is a pretty worthy plan. Also, since Keytruda is approved, is there any reason they're giving not to try it even if something in the brain doesn't look totally clean? (it's incredibly frustrated that the brain is somehow often viewed differently than getting disease anywhere else in the body). Especially as immune therapy with Keytruda might very well reach the brain too.

Good luck on what I hope is your next treatment plan.

Kyle

Steve, I read your sentence as saying you did not test positive for the BRAF mutation, and I see in a previous post here, that that's what happened for you. So as you indicate, BRAF treatment is not an option. 

Have you done a full course of Yervoy? How many infusions have you been able to get in? 

I can't think of any reason not to try a new treatment, especially Keytruda, if the current treatment with Yervoy has run its course, and if you can tolerate infusions every 3 weeks, Keytruda is easily tolerated for most people. That's been the case for me, I should get infusion #22 of Nivolumab next week. 

I understand a clinical trial might be difficult. Between the probable wash out periods, and the typical rigaramole to get from application to the first treatment, and the risk of getting rejected at the last minute, trials might be tough. Although for all I know, you might apply for one and get right in. One promising one for wild type patients is the LEE011/MEK162 trial someone reported here. Don't know if it has activity in the brain though.

But, my thinking would be, if you can get a promision treatment like Keytruda without all those hoops, seems like that is a pretty worthy plan. Also, since Keytruda is approved, is there any reason they're giving not to try it even if something in the brain doesn't look totally clean? (it's incredibly frustrated that the brain is somehow often viewed differently than getting disease anywhere else in the body). Especially as immune therapy with Keytruda might very well reach the brain too.

Good luck on what I hope is your next treatment plan.

Kyle

Steve, moving right into Keytruda seems like the best available option given your tumor load and BRAF status.  Hopefully you'll get a synergistic effect with ipi.

Steve, moving right into Keytruda seems like the best available option given your tumor load and BRAF status.  Hopefully you'll get a synergistic effect with ipi.

Steve, moving right into Keytruda seems like the best available option given your tumor load and BRAF status.  Hopefully you'll get a synergistic effect with ipi.

Steve,

i agree wholeheartedly with kyle and others.  Keytruda is a great option and although there could be a better trial option any delay would not be good. Any idea when your first infusion might be possible?  As a nivolumab responder I'm a huge fan of the anti-PD1 drugs. I wish you well. 

Brian

Steve,

i agree wholeheartedly with kyle and others.  Keytruda is a great option and although there could be a better trial option any delay would not be good. Any idea when your first infusion might be possible?  As a nivolumab responder I'm a huge fan of the anti-PD1 drugs. I wish you well. 

Brian

Steve,

i agree wholeheartedly with kyle and others.  Keytruda is a great option and although there could be a better trial option any delay would not be good. Any idea when your first infusion might be possible?  As a nivolumab responder I'm a huge fan of the anti-PD1 drugs. I wish you well. 

Brian

How about intralesional injection of an immunogenic drug like Imiquimod? Rose bengal has also been used for this. Yervoy and Keytruda are great, but they are not very specific, and this could help your immune system target the correct antigens.

I could post some studies, but it's almost pointless as there are numerous studies of both substances that can be readily found in Google and Google Scholar.

How about intralesional injection of an immunogenic drug like Imiquimod? Rose bengal has also been used for this. Yervoy and Keytruda are great, but they are not very specific, and this could help your immune system target the correct antigens.

I could post some studies, but it's almost pointless as there are numerous studies of both substances that can be readily found in Google and Google Scholar.

How about intralesional injection of an immunogenic drug like Imiquimod? Rose bengal has also been used for this. Yervoy and Keytruda are great, but they are not very specific, and this could help your immune system target the correct antigens.

I could post some studies, but it's almost pointless as there are numerous studies of both substances that can be readily found in Google and Google Scholar.