YERVOY OR ZELBORAF

Im so sorry what you are going through.

Is very difficult decision, just what i can give you is a piece of advice.

If dont have a high burden tumor i would choose yervoy, is slower but you can get longer response (im not agree 20% curative). There are around 20% respose and an small percentage very long responses. No data about curative effect.

In the other case i would choose Tanfilar/mekinist instead of zelboraf, is more effective and less side effects. You have to know that there are aound 20% of people taking this combo i recommended you are also long survivors, they are 3,4 years and kick in. And no one knows how long the can be on this drugs.

Good luck, take a decision and not look back

Juan

Im so sorry what you are going through.

Is very difficult decision, just what i can give you is a piece of advice.

If dont have a high burden tumor i would choose yervoy, is slower but you can get longer response (im not agree 20% curative). There are around 20% respose and an small percentage very long responses. No data about curative effect.

In the other case i would choose Tanfilar/mekinist instead of zelboraf, is more effective and less side effects. You have to know that there are aound 20% of people taking this combo i recommended you are also long survivors, they are 3,4 years and kick in. And no one knows how long the can be on this drugs.

Good luck, take a decision and not look back

Juan

Im so sorry what you are going through.

Is very difficult decision, just what i can give you is a piece of advice.

If dont have a high burden tumor i would choose yervoy, is slower but you can get longer response (im not agree 20% curative). There are around 20% respose and an small percentage very long responses. No data about curative effect.

In the other case i would choose Tanfilar/mekinist instead of zelboraf, is more effective and less side effects. You have to know that there are aound 20% of people taking this combo i recommended you are also long survivors, they are 3,4 years and kick in. And no one knows how long the can be on this drugs.

Good luck, take a decision and not look back

Juan

i would suggest ipi first. you really dont know in the grand scheme of things what will happen and what works in what order best. but this is my experience…

I did the opposite. zelboraf 1st and then ipi. zelboraf helped me a lot for a few months and then it stopped working and my lung mets grew right back. it was really upsetting for me, bc the side effects are harsh. i had to go down to 6 pills daily instead of 8.

ipi side effects are way more manageable. all ive experienced are a few rashes and fatigue.

if you have a side effect from a tumor bc of its size, then doing zel first is a good idea, bc it acts fast if it does work. for instance, i had a dibilitating cough that cleared up right away after starting zel. came back after stopping, but now on ipi, it is manageable again although it took a little longer. 

i am waiting for my scans next week to see how the entire cycle of ipi has affected the tumors in my body and brain. so we shall see. 

but i think it would be comforting to know i still had zelboraf as an option. who knows maybe it will be. ive heard things like if you go off zel for a while and start again it may work again… dunno if thats true!

good luck. no easy decisions. 

thants just my humble opinin!

H

i would suggest ipi first. you really dont know in the grand scheme of things what will happen and what works in what order best. but this is my experience…

I did the opposite. zelboraf 1st and then ipi. zelboraf helped me a lot for a few months and then it stopped working and my lung mets grew right back. it was really upsetting for me, bc the side effects are harsh. i had to go down to 6 pills daily instead of 8.

ipi side effects are way more manageable. all ive experienced are a few rashes and fatigue.

if you have a side effect from a tumor bc of its size, then doing zel first is a good idea, bc it acts fast if it does work. for instance, i had a dibilitating cough that cleared up right away after starting zel. came back after stopping, but now on ipi, it is manageable again although it took a little longer. 

i am waiting for my scans next week to see how the entire cycle of ipi has affected the tumors in my body and brain. so we shall see. 

but i think it would be comforting to know i still had zelboraf as an option. who knows maybe it will be. ive heard things like if you go off zel for a while and start again it may work again… dunno if thats true!

good luck. no easy decisions. 

thants just my humble opinin!

H

i would suggest ipi first. you really dont know in the grand scheme of things what will happen and what works in what order best. but this is my experience…

I did the opposite. zelboraf 1st and then ipi. zelboraf helped me a lot for a few months and then it stopped working and my lung mets grew right back. it was really upsetting for me, bc the side effects are harsh. i had to go down to 6 pills daily instead of 8.

ipi side effects are way more manageable. all ive experienced are a few rashes and fatigue.

if you have a side effect from a tumor bc of its size, then doing zel first is a good idea, bc it acts fast if it does work. for instance, i had a dibilitating cough that cleared up right away after starting zel. came back after stopping, but now on ipi, it is manageable again although it took a little longer. 

i am waiting for my scans next week to see how the entire cycle of ipi has affected the tumors in my body and brain. so we shall see. 

but i think it would be comforting to know i still had zelboraf as an option. who knows maybe it will be. ive heard things like if you go off zel for a while and start again it may work again… dunno if thats true!

good luck. no easy decisions. 

thants just my humble opinin!

H

Those are standard options. You could also start with a trial.

In my opinion it depends on your tumor burden and how fast you need to see results. If you are doing ok now then I would do Yervoy. If you need to do BRAF then you should do the Tafinlar/Mekenist combo because the side affects are usually less severe than Zelboraf.

I did Zelboraf, Yervoy, Tafinlar/Mekenist and now on Merck's PD1. The reason they had me do Zelboraf first is because of immediate need to prevent paralysis due to spine tumor.

Also if I could start again I would instead go to Moffit in Tampa and do one of his vaccine/pd1 trials.

Those are standard options. You could also start with a trial.

In my opinion it depends on your tumor burden and how fast you need to see results. If you are doing ok now then I would do Yervoy. If you need to do BRAF then you should do the Tafinlar/Mekenist combo because the side affects are usually less severe than Zelboraf.

I did Zelboraf, Yervoy, Tafinlar/Mekenist and now on Merck's PD1. The reason they had me do Zelboraf first is because of immediate need to prevent paralysis due to spine tumor.

Also if I could start again I would instead go to Moffit in Tampa and do one of his vaccine/pd1 trials.

Those are standard options. You could also start with a trial.

In my opinion it depends on your tumor burden and how fast you need to see results. If you are doing ok now then I would do Yervoy. If you need to do BRAF then you should do the Tafinlar/Mekenist combo because the side affects are usually less severe than Zelboraf.

I did Zelboraf, Yervoy, Tafinlar/Mekenist and now on Merck's PD1. The reason they had me do Zelboraf first is because of immediate need to prevent paralysis due to spine tumor.

Also if I could start again I would instead go to Moffit in Tampa and do one of his vaccine/pd1 trials.