› Forums › General Melanoma Community › 1st scan after starting pembro/next steps
- This topic has 12 replies, 4 voices, and was last updated 8 years, 11 months ago by
Andrew1725.
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- September 22, 2016 at 10:46 pm
I'm a male, 30 yo. Diagnosed in July- stage 4 w multiple mets to bone, liver lungs and spleen. largest tumors are 2-3cm. I've been on pembro since august 4, and have my first ct/MRI coming up. If it shows progression of disease, is the next logical step ipi/nivo? Fairly certain I'm braf mutated. If I'd like to explore clinical trials/travel to MD Andersen etc, should I pause treatment to do so? Or jump right into whatever my doc here (a Midwest NCI research Hospital) recommends? Perhaps they have their reasons for doing so, but my doctor has been pretty opaque about what they will do next.
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- September 23, 2016 at 1:18 am
Sorry you are here Spl25. I'll throw out some random thoughts.
Is ipi/nivo the next logical step? It's definitely a strong consideration. It would be on my short list if I were in your shoes.
Being Braf positive is a good thing for you. As you may know Taf/Mek combo is very effective against Braf positive melanoma but usually the benefit isn't durable. Some have used the Taf/Mek as a bridge to another immunotherapy treatment when things have gotten bad.
I've always felt like it's good to have a plan B and even plan C in mind so you aren't caught off guard. I would have this conversation with your doctor. How familiar are you with clinicaltrials.org? Do you know that MRF has a free clinical trial finder service? You are starting to see several trials available to patients who have failed a anti-PD1 so you may be able to find one within driving distance to your location.
I had my first trip to MDA last month. It is an amazing place for clinical trials. They have tons of stuff going on there. I have always been a proponent to "getting on the books" at a place like MDA. It takes a lot of effort and more importantly time to get new appointments at places like that. Once you are seen there making follow up appointments is a piece of cake. In that regard I think it would be good for you to head down there but I wouldn't think it's necessary to pause your current treatment to do so.
Best of luck on your upcoming scan. Hopefully you will never need a plan B.
Brian
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- September 23, 2016 at 1:41 am
Appreciate it Brian – I'm a fan of planning for contingencies too! MDA says they can see me fairly soon. It probably makes sense to do that regardless of how scans go. I really wish someone would test tumors to see if I'm generating enough TILs that checkpoint blockade makes sense going forward.
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- September 23, 2016 at 1:41 am
Appreciate it Brian – I'm a fan of planning for contingencies too! MDA says they can see me fairly soon. It probably makes sense to do that regardless of how scans go. I really wish someone would test tumors to see if I'm generating enough TILs that checkpoint blockade makes sense going forward.
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- September 23, 2016 at 1:41 am
Appreciate it Brian – I'm a fan of planning for contingencies too! MDA says they can see me fairly soon. It probably makes sense to do that regardless of how scans go. I really wish someone would test tumors to see if I'm generating enough TILs that checkpoint blockade makes sense going forward.
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- September 23, 2016 at 1:18 am
Sorry you are here Spl25. I'll throw out some random thoughts.
Is ipi/nivo the next logical step? It's definitely a strong consideration. It would be on my short list if I were in your shoes.
Being Braf positive is a good thing for you. As you may know Taf/Mek combo is very effective against Braf positive melanoma but usually the benefit isn't durable. Some have used the Taf/Mek as a bridge to another immunotherapy treatment when things have gotten bad.
I've always felt like it's good to have a plan B and even plan C in mind so you aren't caught off guard. I would have this conversation with your doctor. How familiar are you with clinicaltrials.org? Do you know that MRF has a free clinical trial finder service? You are starting to see several trials available to patients who have failed a anti-PD1 so you may be able to find one within driving distance to your location.
I had my first trip to MDA last month. It is an amazing place for clinical trials. They have tons of stuff going on there. I have always been a proponent to "getting on the books" at a place like MDA. It takes a lot of effort and more importantly time to get new appointments at places like that. Once you are seen there making follow up appointments is a piece of cake. In that regard I think it would be good for you to head down there but I wouldn't think it's necessary to pause your current treatment to do so.
Best of luck on your upcoming scan. Hopefully you will never need a plan B.
Brian
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- September 23, 2016 at 1:18 am
Sorry you are here Spl25. I'll throw out some random thoughts.
Is ipi/nivo the next logical step? It's definitely a strong consideration. It would be on my short list if I were in your shoes.
Being Braf positive is a good thing for you. As you may know Taf/Mek combo is very effective against Braf positive melanoma but usually the benefit isn't durable. Some have used the Taf/Mek as a bridge to another immunotherapy treatment when things have gotten bad.
I've always felt like it's good to have a plan B and even plan C in mind so you aren't caught off guard. I would have this conversation with your doctor. How familiar are you with clinicaltrials.org? Do you know that MRF has a free clinical trial finder service? You are starting to see several trials available to patients who have failed a anti-PD1 so you may be able to find one within driving distance to your location.
I had my first trip to MDA last month. It is an amazing place for clinical trials. They have tons of stuff going on there. I have always been a proponent to "getting on the books" at a place like MDA. It takes a lot of effort and more importantly time to get new appointments at places like that. Once you are seen there making follow up appointments is a piece of cake. In that regard I think it would be good for you to head down there but I wouldn't think it's necessary to pause your current treatment to do so.
Best of luck on your upcoming scan. Hopefully you will never need a plan B.
Brian
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- September 23, 2016 at 9:18 am
I get that you want to have a plan in case pembro doesn't work, but hey, who says it won't?
I am a believer in pembro, my father has had great results with it ( as have many others), so maybe you will have them too!
Best of luck to you!
Love,
Patrisa
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- September 23, 2016 at 9:18 am
I get that you want to have a plan in case pembro doesn't work, but hey, who says it won't?
I am a believer in pembro, my father has had great results with it ( as have many others), so maybe you will have them too!
Best of luck to you!
Love,
Patrisa
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- September 23, 2016 at 9:18 am
I get that you want to have a plan in case pembro doesn't work, but hey, who says it won't?
I am a believer in pembro, my father has had great results with it ( as have many others), so maybe you will have them too!
Best of luck to you!
Love,
Patrisa
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- September 23, 2016 at 3:57 pm
I'd be very careful about giving the current treatment enough time to work before considering a change to a trial (but no harm in looking at next steps ahead of time, I will be doing the same). I'm doing Ipi/Nivo combo and my understanding from the data that came out of that trial is that you need about 3 months to really start assessing responses, responses also are seen later and I don't think there are many rapid responses with pembro. I would really try to nail down with your docs what is their plan is for assessment of your response. Lots of things have to be considered of course including symptoms, tumor burden, braf status as you mentioned, but I'd hate to see you jumping ship on Pembro too soon for uncertain trial drugs.
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- September 23, 2016 at 3:57 pm
I'd be very careful about giving the current treatment enough time to work before considering a change to a trial (but no harm in looking at next steps ahead of time, I will be doing the same). I'm doing Ipi/Nivo combo and my understanding from the data that came out of that trial is that you need about 3 months to really start assessing responses, responses also are seen later and I don't think there are many rapid responses with pembro. I would really try to nail down with your docs what is their plan is for assessment of your response. Lots of things have to be considered of course including symptoms, tumor burden, braf status as you mentioned, but I'd hate to see you jumping ship on Pembro too soon for uncertain trial drugs.
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- September 23, 2016 at 3:57 pm
I'd be very careful about giving the current treatment enough time to work before considering a change to a trial (but no harm in looking at next steps ahead of time, I will be doing the same). I'm doing Ipi/Nivo combo and my understanding from the data that came out of that trial is that you need about 3 months to really start assessing responses, responses also are seen later and I don't think there are many rapid responses with pembro. I would really try to nail down with your docs what is their plan is for assessment of your response. Lots of things have to be considered of course including symptoms, tumor burden, braf status as you mentioned, but I'd hate to see you jumping ship on Pembro too soon for uncertain trial drugs.
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