Update, and meds question

As far as i know, if you had metastatic melanoma once you will have it forever. Best you can achieve is to get NED-Status which means your scans do not show any evidence of cancer but this doesn't mean it won't come back one day. One cancer cell floating around in your blood is enough to grow a metastasis somewhere in your body one day – and no scan can detect such small amounts of cancer. So if you are NED you still have to frequently watch out for new mets forever.

As far as i know, if you had metastatic melanoma once you will have it forever. Best you can achieve is to get NED-Status which means your scans do not show any evidence of cancer but this doesn't mean it won't come back one day. One cancer cell floating around in your blood is enough to grow a metastasis somewhere in your body one day – and no scan can detect such small amounts of cancer. So if you are NED you still have to frequently watch out for new mets forever.

As far as i know, if you had metastatic melanoma once you will have it forever. Best you can achieve is to get NED-Status which means your scans do not show any evidence of cancer but this doesn't mean it won't come back one day. One cancer cell floating around in your blood is enough to grow a metastasis somewhere in your body one day – and no scan can detect such small amounts of cancer. So if you are NED you still have to frequently watch out for new mets forever.

The BRAF drugs are miraculous, but for many, they only block the melanoma,for so long before melanoma finds a way around them.  Yes there are people with long durable remissions with these drugs but there are lots more who eventually fail the drug.  Not saying this to be a downer,but only to say keep on your toes.

The BRAF drugs are miraculous, but for many, they only block the melanoma,for so long before melanoma finds a way around them.  Yes there are people with long durable remissions with these drugs but there are lots more who eventually fail the drug.  Not saying this to be a downer,but only to say keep on your toes.

The BRAF drugs are miraculous, but for many, they only block the melanoma,for so long before melanoma finds a way around them.  Yes there are people with long durable remissions with these drugs but there are lots more who eventually fail the drug.  Not saying this to be a downer,but only to say keep on your toes.

Ignore the insensitive comments above. That is great news. You should enjoy the holidays and just keep up with scans and treatment. As far as stories go Ive read of many people on this site that have been NED 5 years 10 years 15 years. So there is hope. I also know of somebody that is 18 years NED stage 4 but does not come on the forum. There are many people that dont come on the forum to post because they are out living there lives. This forum is great but it can also cause alot of anxiety and depression by just reading some of the stories and comparing. Everyone is different. Lately ive been trying to stay away from the forum due to this reason. I want to move on with my life and put mel in the rear view mirror mentally.

Ignore the insensitive comments above. That is great news. You should enjoy the holidays and just keep up with scans and treatment. As far as stories go Ive read of many people on this site that have been NED 5 years 10 years 15 years. So there is hope. I also know of somebody that is 18 years NED stage 4 but does not come on the forum. There are many people that dont come on the forum to post because they are out living there lives. This forum is great but it can also cause alot of anxiety and depression by just reading some of the stories and comparing. Everyone is different. Lately ive been trying to stay away from the forum due to this reason. I want to move on with my life and put mel in the rear view mirror mentally.

Ignore the insensitive comments above. That is great news. You should enjoy the holidays and just keep up with scans and treatment. As far as stories go Ive read of many people on this site that have been NED 5 years 10 years 15 years. So there is hope. I also know of somebody that is 18 years NED stage 4 but does not come on the forum. There are many people that dont come on the forum to post because they are out living there lives. This forum is great but it can also cause alot of anxiety and depression by just reading some of the stories and comparing. Everyone is different. Lately ive been trying to stay away from the forum due to this reason. I want to move on with my life and put mel in the rear view mirror mentally.

I am sorry you are dealing with this cancer, but am pleased you have had such a strong response to Tafinlar/Mekinist. 

I suggest you relax through the holidays, then get back to doing your homework. Fighting melanoma is often a matter of several different rounds of treatment, and having a next step in mind is not a bad idea. Some people are lucky and have a complete response to the first treatment prescribed. This is not rare, but is not the norm.

With the treatment you are on some people don't respond at all, some people respond for a few months, and some people respond for a long time. This treatment is called "targeted therapy" because it targets a specific mutation in the tumor cells and disables the protein driven by that mutation.

Another approach is called immunotherapy, and the drugs that are most often used now are in a category called anti-PD1. Two companies make drugs in this category and they are called Keytruda and Opdivo. Both work about the same.

The number of people still alive after 3 years of treatment is about the same with both types of drugs, and the nice thing is that if one type quits working you can switch to the other type.

So you have received good advice in the previous responses–live your life the the best you can, but be prepared should this cancer rear its ugly head again. Fortunately should the melanoma come back you still have several good treatment options to fight back.

Tim–MRF

I am sorry you are dealing with this cancer, but am pleased you have had such a strong response to Tafinlar/Mekinist. 

I suggest you relax through the holidays, then get back to doing your homework. Fighting melanoma is often a matter of several different rounds of treatment, and having a next step in mind is not a bad idea. Some people are lucky and have a complete response to the first treatment prescribed. This is not rare, but is not the norm.

With the treatment you are on some people don't respond at all, some people respond for a few months, and some people respond for a long time. This treatment is called "targeted therapy" because it targets a specific mutation in the tumor cells and disables the protein driven by that mutation.

Another approach is called immunotherapy, and the drugs that are most often used now are in a category called anti-PD1. Two companies make drugs in this category and they are called Keytruda and Opdivo. Both work about the same.

The number of people still alive after 3 years of treatment is about the same with both types of drugs, and the nice thing is that if one type quits working you can switch to the other type.

So you have received good advice in the previous responses–live your life the the best you can, but be prepared should this cancer rear its ugly head again. Fortunately should the melanoma come back you still have several good treatment options to fight back.

Tim–MRF

I am sorry you are dealing with this cancer, but am pleased you have had such a strong response to Tafinlar/Mekinist. 

I suggest you relax through the holidays, then get back to doing your homework. Fighting melanoma is often a matter of several different rounds of treatment, and having a next step in mind is not a bad idea. Some people are lucky and have a complete response to the first treatment prescribed. This is not rare, but is not the norm.

With the treatment you are on some people don't respond at all, some people respond for a few months, and some people respond for a long time. This treatment is called "targeted therapy" because it targets a specific mutation in the tumor cells and disables the protein driven by that mutation.

Another approach is called immunotherapy, and the drugs that are most often used now are in a category called anti-PD1. Two companies make drugs in this category and they are called Keytruda and Opdivo. Both work about the same.

The number of people still alive after 3 years of treatment is about the same with both types of drugs, and the nice thing is that if one type quits working you can switch to the other type.

So you have received good advice in the previous responses–live your life the the best you can, but be prepared should this cancer rear its ugly head again. Fortunately should the melanoma come back you still have several good treatment options to fight back.

Tim–MRF