What is the medical progression? Have lots of questions.

Hi Renee,

Glad you found this site and welcome to this melanoma family.  You will find it a great source of information and support for all.  We hate adding new members as it means one more person has also encountered melanoma.  We all have a common goal here of surviving this beast and wiping it out in the near future!  

I do not have any experience with this combination but I'm sure someone will post soon who is knowledgeable about it or who has experienced it themself.  Occasionally, a post will not get a response (unintentional) so please do not get discouraged and repost, perhaps asking with more urgency will help!

I've been at battle for almost 3 years now and I remember how lost and confused I was trying to figure out this cancer and how uniquely different everyone's stories were from the next.  Be patient, read and reread, ask as many questions as you can think of and look up definitions and read other's stories of treatments and survival.  Also, use the search on this website to find related information you are looking for.  

Best of luck to you and your boyfriend Matt,  as you find your way through this melanoma maze.  Also, it is very helpful to fill out profile info,  as that is where so many of us look to know how to advise you, knowing where you are being treated at and what type of treatments you have tried.  

Swanee

Hi Renee,

Glad you found this site and welcome to this melanoma family.  You will find it a great source of information and support for all.  We hate adding new members as it means one more person has also encountered melanoma.  We all have a common goal here of surviving this beast and wiping it out in the near future!  

I do not have any experience with this combination but I'm sure someone will post soon who is knowledgeable about it or who has experienced it themself.  Occasionally, a post will not get a response (unintentional) so please do not get discouraged and repost, perhaps asking with more urgency will help!

I've been at battle for almost 3 years now and I remember how lost and confused I was trying to figure out this cancer and how uniquely different everyone's stories were from the next.  Be patient, read and reread, ask as many questions as you can think of and look up definitions and read other's stories of treatments and survival.  Also, use the search on this website to find related information you are looking for.  

Best of luck to you and your boyfriend Matt,  as you find your way through this melanoma maze.  Also, it is very helpful to fill out profile info,  as that is where so many of us look to know how to advise you, knowing where you are being treated at and what type of treatments you have tried.  

Swanee

Hi Renee,

Glad you found this site and welcome to this melanoma family.  You will find it a great source of information and support for all.  We hate adding new members as it means one more person has also encountered melanoma.  We all have a common goal here of surviving this beast and wiping it out in the near future!  

I do not have any experience with this combination but I'm sure someone will post soon who is knowledgeable about it or who has experienced it themself.  Occasionally, a post will not get a response (unintentional) so please do not get discouraged and repost, perhaps asking with more urgency will help!

I've been at battle for almost 3 years now and I remember how lost and confused I was trying to figure out this cancer and how uniquely different everyone's stories were from the next.  Be patient, read and reread, ask as many questions as you can think of and look up definitions and read other's stories of treatments and survival.  Also, use the search on this website to find related information you are looking for.  

Best of luck to you and your boyfriend Matt,  as you find your way through this melanoma maze.  Also, it is very helpful to fill out profile info,  as that is where so many of us look to know how to advise you, knowing where you are being treated at and what type of treatments you have tried.  

Swanee

Vemurafenib (aka Zelboraf) is a drug that can kill the cancer and stop the spread. Often though, it only works for an average of 5-7 months then the melanoma outsmarts it and starts to grow again anyway. There are many people her though who have been on it successfully, longer. Some much longer! I have been on and off since April 2012.

Don’t think of it like you would chemo for other cancers, like killing it all once and for all, it’s more like treating diabetes every day and living with it. A few people have been lucky enough to end up NED (no evidence of disease) but remission isn’t a term you will see used much with melanoma.

The hope is that adding a brand new, in development drug like PX866 will cause the vemurafenib to keep working longer, maybe for a lifetime. Yes he stays on it, just like a diabetic keeps treating every day. These drugs are still very new and they are learning more all the time.

I go to Vandy too and prob have the same doc but not in a trial. Your BF is in very good hands w Dr Sosman. Fortunately there are lots of advances in melanoma right now and your BF is helping with that! Sadly, there is no 100% cure.

Amy

Vemurafenib (aka Zelboraf) is a drug that can kill the cancer and stop the spread. Often though, it only works for an average of 5-7 months then the melanoma outsmarts it and starts to grow again anyway. There are many people her though who have been on it successfully, longer. Some much longer! I have been on and off since April 2012.

Don’t think of it like you would chemo for other cancers, like killing it all once and for all, it’s more like treating diabetes every day and living with it. A few people have been lucky enough to end up NED (no evidence of disease) but remission isn’t a term you will see used much with melanoma.

The hope is that adding a brand new, in development drug like PX866 will cause the vemurafenib to keep working longer, maybe for a lifetime. Yes he stays on it, just like a diabetic keeps treating every day. These drugs are still very new and they are learning more all the time.

I go to Vandy too and prob have the same doc but not in a trial. Your BF is in very good hands w Dr Sosman. Fortunately there are lots of advances in melanoma right now and your BF is helping with that! Sadly, there is no 100% cure.

Amy

Vemurafenib (aka Zelboraf) is a drug that can kill the cancer and stop the spread. Often though, it only works for an average of 5-7 months then the melanoma outsmarts it and starts to grow again anyway. There are many people her though who have been on it successfully, longer. Some much longer! I have been on and off since April 2012.

Don’t think of it like you would chemo for other cancers, like killing it all once and for all, it’s more like treating diabetes every day and living with it. A few people have been lucky enough to end up NED (no evidence of disease) but remission isn’t a term you will see used much with melanoma.

The hope is that adding a brand new, in development drug like PX866 will cause the vemurafenib to keep working longer, maybe for a lifetime. Yes he stays on it, just like a diabetic keeps treating every day. These drugs are still very new and they are learning more all the time.

I go to Vandy too and prob have the same doc but not in a trial. Your BF is in very good hands w Dr Sosman. Fortunately there are lots of advances in melanoma right now and your BF is helping with that! Sadly, there is no 100% cure.

Amy