Just tested positive for BRAF

It is your right to feel sad. It is a great thing you tested positive for B-Raf, I hear the treatment can do great things and have been told by my doctor it is my best chance for survival. Although i tested negative i will never know. iI start Interleukin2 this Wed. the 16th. Its the best they can do for me. You got really lucky in my opinion, My Dr. said its the best treatment out there if your B-RAF positive. so im sending you prayers straight up to heaven right now that this works for you and you live a long happy life with your family.

carol bellinger

stage IV

It is your right to feel sad. It is a great thing you tested positive for B-Raf, I hear the treatment can do great things and have been told by my doctor it is my best chance for survival. Although i tested negative i will never know. iI start Interleukin2 this Wed. the 16th. Its the best they can do for me. You got really lucky in my opinion, My Dr. said its the best treatment out there if your B-RAF positive. so im sending you prayers straight up to heaven right now that this works for you and you live a long happy life with your family.

carol bellinger

stage IV

Dawn,

You are NOT failing your family!  You are fighting, you are educating yourself, and you are doing the very best you can, for you and for them.  It's totally OK to feel scared and it's totally OK to cry!  Whoever told you to get off your ass is an idiot.  They don't walk in your shoes and they have no idea what it's like to be you.  (That being said, if you're having trouble coping with your dx enough that you can't function day-to-day, please get some help…but do not let someone else tell you how you're supposed to feel!)

With that off my chest, on to the topic of feeling like a guinea pig…unfortunately, that's the reality of stage IV melanoma.  There are lots of trials right now, and that's a good thing for us.  Before starting trials, you usually  need to fail one of the very few approved treatments.  I would urge you to consider IL-2.  It's a rough treatment, but for a few people it can bring lasting NED status, and that's what we all dream about.

I have to go now – I'm cooking my family dinner and multitasting! – but please know you are not alone and we all care, 'cause we really all are in the same boat.

Warmly,

KatyWI

Dawn,

You are NOT failing your family!  You are fighting, you are educating yourself, and you are doing the very best you can, for you and for them.  It's totally OK to feel scared and it's totally OK to cry!  Whoever told you to get off your ass is an idiot.  They don't walk in your shoes and they have no idea what it's like to be you.  (That being said, if you're having trouble coping with your dx enough that you can't function day-to-day, please get some help…but do not let someone else tell you how you're supposed to feel!)

With that off my chest, on to the topic of feeling like a guinea pig…unfortunately, that's the reality of stage IV melanoma.  There are lots of trials right now, and that's a good thing for us.  Before starting trials, you usually  need to fail one of the very few approved treatments.  I would urge you to consider IL-2.  It's a rough treatment, but for a few people it can bring lasting NED status, and that's what we all dream about.

I have to go now – I'm cooking my family dinner and multitasting! – but please know you are not alone and we all care, 'cause we really all are in the same boat.

Warmly,

KatyWI

Dawn

So sad to hear your story.

I try to read everything about IPI & braf & Mek clinical trials. I am stage 3.

The bottomline, with Braf & Mek inhibitor, is that these drug do NOT give you a long term response. If you "google" Braf & Mek clinical trial results thus far, the average response time frame is 8-12 months then the drug stops working. For some peolpe the drug works longer yet for others the drug does not even work but a few months if that.

The downside of this drug is that it does have some bad side effects like acne, fatigue, etc.

My friend was on Braf for 12 months & progressed. She had severe acne & joint pain for the total 12 months. It was a tuff road for her.

The other issue is there is no end point to this drug, you just keep taking it for the duration until you  progress.

I think that this drug can buy you time but it is not a long tern cure based on reports from clinical trials.

I hope this helps.

Good Luck

Jim

Dawn

So sad to hear your story.

I try to read everything about IPI & braf & Mek clinical trials. I am stage 3.

The bottomline, with Braf & Mek inhibitor, is that these drug do NOT give you a long term response. If you "google" Braf & Mek clinical trial results thus far, the average response time frame is 8-12 months then the drug stops working. For some peolpe the drug works longer yet for others the drug does not even work but a few months if that.

The downside of this drug is that it does have some bad side effects like acne, fatigue, etc.

My friend was on Braf for 12 months & progressed. She had severe acne & joint pain for the total 12 months. It was a tuff road for her.

The other issue is there is no end point to this drug, you just keep taking it for the duration until you  progress.

I think that this drug can buy you time but it is not a long tern cure based on reports from clinical trials.

I hope this helps.

Good Luck

Jim

Dawn,

I'm sorry that you have moved onto Stage IV.  You said you were on ippi for stage 3. Is that in a trial? If so you might have been on the placebo arm.

I read your profile and it said you had a lymph node in your lung. Have you talked to your Dr. about the possibility of surgery?  I'm also B-raf positive but haven't used the drug yet.  They now have B-raf and MEK combinations that are hoped to have a longer response. 

I have my scans in a few days, they are watching a spot in my lung.  I am going to ask for surgery first, then if that doesn't happen my thoughts are to go with IL2 next.  While the response rate isn't good, those who are responders have had long term response.  My thoughts are to go with one of the harder treatments first while I am feeling healthy. Who knows, maybe I will be a complete responder!   Of course I'm still hoping that I've stabalized and won't need to use my plan A, B or C. lol

You have not failed! You might not have responded but that is way different than failing!  If only they had a test to know which one of us would respond to which treatment.  You need to surround yourself by loving caring positive thinking people right now. If the person who told you to stop feeling sorry for yourself is a significant other I suggest your onc. have a heart to heart talk with them. Unless you've ever been given a diagnosis like this there is no way they understand emotionally what you are going through.

Your not alone,

Linda

Stage IV since 06

Dawn,

I'm sorry that you have moved onto Stage IV.  You said you were on ippi for stage 3. Is that in a trial? If so you might have been on the placebo arm.

I read your profile and it said you had a lymph node in your lung. Have you talked to your Dr. about the possibility of surgery?  I'm also B-raf positive but haven't used the drug yet.  They now have B-raf and MEK combinations that are hoped to have a longer response. 

I have my scans in a few days, they are watching a spot in my lung.  I am going to ask for surgery first, then if that doesn't happen my thoughts are to go with IL2 next.  While the response rate isn't good, those who are responders have had long term response.  My thoughts are to go with one of the harder treatments first while I am feeling healthy. Who knows, maybe I will be a complete responder!   Of course I'm still hoping that I've stabalized and won't need to use my plan A, B or C. lol

You have not failed! You might not have responded but that is way different than failing!  If only they had a test to know which one of us would respond to which treatment.  You need to surround yourself by loving caring positive thinking people right now. If the person who told you to stop feeling sorry for yourself is a significant other I suggest your onc. have a heart to heart talk with them. Unless you've ever been given a diagnosis like this there is no way they understand emotionally what you are going through.

Your not alone,

Linda

Stage IV since 06