› Forums › General Melanoma Community › An update on my status.
- This topic has 39 replies, 10 voices, and was last updated 12 years, 11 months ago by
Suzan AB.
- Post
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- January 14, 2012 at 4:06 am
Well I finished my fourth dose of Yervoy of December 20th and just got a call from my Oncologist regarding my results. Unfortunately the MRI of my brain which was clear before, now has three lesions. Two are extremely small and one is about 9mm, a little bigger than a pencil eraser. So first things first, Tuesday morning I'll be scheduling an appointment with my radiation oncologist to see about zapping these things out of my brain, just like the one they zapped over a year ago. I'm hoping these go away as successfully as the other one.
Well I finished my fourth dose of Yervoy of December 20th and just got a call from my Oncologist regarding my results. Unfortunately the MRI of my brain which was clear before, now has three lesions. Two are extremely small and one is about 9mm, a little bigger than a pencil eraser. So first things first, Tuesday morning I'll be scheduling an appointment with my radiation oncologist to see about zapping these things out of my brain, just like the one they zapped over a year ago. I'm hoping these go away as successfully as the other one.
My oncologist has yet to see the CT of my chest/abdomen/pelvis. I just picked up the disc and I'll be taking it to him first thing Tuesday morning to see what it shows. With the news of the brain, I don't predict the results be in my favor. But come Tuesday, we'll know the full status and hopefully discuss possible options.
Naturally, this came as a bit of a shock and I'm a little worried, not sure how my time and options are looking. This waiting is the hardest part. I'm kind of out of the loop as far as options and new trials that may be available, if anyone has any suggestions or information that might be beneficial, I'd sure love to hear it. This board helped me through this exact situation that I started in a year and a half ago, gave me hope, helped me see things more clearly, and essentially got me "on the mend" for a little while. And here I am asking for a little help again. I'm down, but not out. And far from done. I figure if I got to a better position from where I started once. I could do it again.
-Kevin
Ps. By the way I still feel fine, I feel as normal, pretty sure no abnormal pain or anything. Also, my doctor told me not to rule out the Yervoy yet, he said sometimes it can take a while to kick in, so I guess I'm still hoping for that. We'll see.
- Replies
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- January 14, 2012 at 4:56 am
Kevin-
I'm not sure about options and what's out there…I'm sure there are more seasoned people out here who would have a better idea. I just wanted to reach out and tell you to hang in there. The anxiety that comes with waiting or hearing not the best news is horrible and I know how it gnaws at you. You're a brave strong man and you WILL lick this. You're not alone….stay strong.
Josh
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- January 14, 2012 at 4:56 am
Kevin-
I'm not sure about options and what's out there…I'm sure there are more seasoned people out here who would have a better idea. I just wanted to reach out and tell you to hang in there. The anxiety that comes with waiting or hearing not the best news is horrible and I know how it gnaws at you. You're a brave strong man and you WILL lick this. You're not alone….stay strong.
Josh
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- January 14, 2012 at 4:56 am
Kevin-
I'm not sure about options and what's out there…I'm sure there are more seasoned people out here who would have a better idea. I just wanted to reach out and tell you to hang in there. The anxiety that comes with waiting or hearing not the best news is horrible and I know how it gnaws at you. You're a brave strong man and you WILL lick this. You're not alone….stay strong.
Josh
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- January 14, 2012 at 5:00 am
Kevin,
I hate to hear that you have new brain issues. I hope they can easily and quickly zap it out. I'm also dealing with a brain met that was zapped – that part seems to be working but now edema has taken over.
There is a new trial out there for a drug call antipd1. It is similar to ippi but you can use ippi first and then the other drug. Depending on the drug company you can have done either 2 or 3 systemic drugs before you do this. Hopefully you will find that the Yervoy works and you don't need to go further.
Waiting over the long weekend to find out the next step is hard. Sending cyber hugs,
Linda
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- January 14, 2012 at 5:00 am
Kevin,
I hate to hear that you have new brain issues. I hope they can easily and quickly zap it out. I'm also dealing with a brain met that was zapped – that part seems to be working but now edema has taken over.
There is a new trial out there for a drug call antipd1. It is similar to ippi but you can use ippi first and then the other drug. Depending on the drug company you can have done either 2 or 3 systemic drugs before you do this. Hopefully you will find that the Yervoy works and you don't need to go further.
Waiting over the long weekend to find out the next step is hard. Sending cyber hugs,
Linda
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- January 14, 2012 at 5:00 am
Kevin,
I hate to hear that you have new brain issues. I hope they can easily and quickly zap it out. I'm also dealing with a brain met that was zapped – that part seems to be working but now edema has taken over.
There is a new trial out there for a drug call antipd1. It is similar to ippi but you can use ippi first and then the other drug. Depending on the drug company you can have done either 2 or 3 systemic drugs before you do this. Hopefully you will find that the Yervoy works and you don't need to go further.
Waiting over the long weekend to find out the next step is hard. Sending cyber hugs,
Linda
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- January 14, 2012 at 5:08 am
Hi Kevin,
It's good to see you post – though I'm sorry to hear the news about the brain mets. But they are small, it looks like you dealt with one before, and I'm sure they can zap those out quickly.
It's true that Yervoy often does have delayed respose so please don't give hope with that yet. The waiting to get the scan results is always so hard but as always, it's one day at a time.
I can't recall if you indicated if you were ever tested for the Braf mutation. If not, that would be a next step to determine if you could take Vemurafenib if the Yervoy is not effective enough. There are also Braf/Mek combos which look promising and if your are Braf negative, MEK can also be taken alone. I'm sure others on the board will have other ideas for you as well.
You have such a positive spirit and have fought so hard through these past treatments. I have no doubt you will rally once again and plan for the next attack.
Sending good thoughts . .
Mary
Stage IV
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- January 14, 2012 at 5:08 am
Hi Kevin,
It's good to see you post – though I'm sorry to hear the news about the brain mets. But they are small, it looks like you dealt with one before, and I'm sure they can zap those out quickly.
It's true that Yervoy often does have delayed respose so please don't give hope with that yet. The waiting to get the scan results is always so hard but as always, it's one day at a time.
I can't recall if you indicated if you were ever tested for the Braf mutation. If not, that would be a next step to determine if you could take Vemurafenib if the Yervoy is not effective enough. There are also Braf/Mek combos which look promising and if your are Braf negative, MEK can also be taken alone. I'm sure others on the board will have other ideas for you as well.
You have such a positive spirit and have fought so hard through these past treatments. I have no doubt you will rally once again and plan for the next attack.
Sending good thoughts . .
Mary
Stage IV
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- January 14, 2012 at 2:44 pm
I do have the BRAF mutation, and my doc did briefly mention that being an option so I'm sure I'll be hearing more about that this week.
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- January 14, 2012 at 2:44 pm
I do have the BRAF mutation, and my doc did briefly mention that being an option so I'm sure I'll be hearing more about that this week.
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- January 14, 2012 at 2:44 pm
I do have the BRAF mutation, and my doc did briefly mention that being an option so I'm sure I'll be hearing more about that this week.
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- January 14, 2012 at 5:08 am
Hi Kevin,
It's good to see you post – though I'm sorry to hear the news about the brain mets. But they are small, it looks like you dealt with one before, and I'm sure they can zap those out quickly.
It's true that Yervoy often does have delayed respose so please don't give hope with that yet. The waiting to get the scan results is always so hard but as always, it's one day at a time.
I can't recall if you indicated if you were ever tested for the Braf mutation. If not, that would be a next step to determine if you could take Vemurafenib if the Yervoy is not effective enough. There are also Braf/Mek combos which look promising and if your are Braf negative, MEK can also be taken alone. I'm sure others on the board will have other ideas for you as well.
You have such a positive spirit and have fought so hard through these past treatments. I have no doubt you will rally once again and plan for the next attack.
Sending good thoughts . .
Mary
Stage IV
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- January 14, 2012 at 2:22 pm
Kevin,
I wanted to give you some news. After 4 ipi infusions and CT scans, they found my lung mets had shrunk by 50% and even some dissappeared. This was great news! The bad news is they found 2 brain mets which were gamma knifed out 2 months ago. I'm having a brain mri next week to see how everything looks and hopefully nothing else is there. The good news is, the ipi was working, despite the brain mets which I've been told can be attacked by ipi.
Getting brain mets while on ipi seems to be a common thing for some people and most of the people I spoke to, the ipi was continuing to work. One guy I've been speaking to hasn't had his 2 brain mets come back and it's so far been 19 months.
Don't think for a moment that those brain mets are going to be a bad sign for you for the rest of your scans. You may be surprised with what you see next week.
Like you, I feel completely normal. Did you get your absolutely lymphocyte numbers during your yervoy treatments?
Lisa
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- January 14, 2012 at 2:22 pm
Kevin,
I wanted to give you some news. After 4 ipi infusions and CT scans, they found my lung mets had shrunk by 50% and even some dissappeared. This was great news! The bad news is they found 2 brain mets which were gamma knifed out 2 months ago. I'm having a brain mri next week to see how everything looks and hopefully nothing else is there. The good news is, the ipi was working, despite the brain mets which I've been told can be attacked by ipi.
Getting brain mets while on ipi seems to be a common thing for some people and most of the people I spoke to, the ipi was continuing to work. One guy I've been speaking to hasn't had his 2 brain mets come back and it's so far been 19 months.
Don't think for a moment that those brain mets are going to be a bad sign for you for the rest of your scans. You may be surprised with what you see next week.
Like you, I feel completely normal. Did you get your absolutely lymphocyte numbers during your yervoy treatments?
Lisa
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- January 14, 2012 at 2:22 pm
Kevin,
I wanted to give you some news. After 4 ipi infusions and CT scans, they found my lung mets had shrunk by 50% and even some dissappeared. This was great news! The bad news is they found 2 brain mets which were gamma knifed out 2 months ago. I'm having a brain mri next week to see how everything looks and hopefully nothing else is there. The good news is, the ipi was working, despite the brain mets which I've been told can be attacked by ipi.
Getting brain mets while on ipi seems to be a common thing for some people and most of the people I spoke to, the ipi was continuing to work. One guy I've been speaking to hasn't had his 2 brain mets come back and it's so far been 19 months.
Don't think for a moment that those brain mets are going to be a bad sign for you for the rest of your scans. You may be surprised with what you see next week.
Like you, I feel completely normal. Did you get your absolutely lymphocyte numbers during your yervoy treatments?
Lisa
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- January 14, 2012 at 10:30 pm
Hi Kevin,
I was shocked to hear your "bad" news.
When did you have your last Brain scan with NIH???? Whatever date that was, it will give you an indication how fast your tumors in your brain are growing?
Also, before you jump into a "BRAF" positive treatment, do research, because it is a fact now known by doctors from the trials that Braf treatments only work for the majority of people on a average of 6-8 months. Even the braf/mek combo treatments are reporting similar results (6-10 months on the average for the majority of people) then the drugs stop working.
Best bet is to get your immune system to fight the cancer. I suggest you look at anti-pd1 drug. Is your oncologist scheduled to get any of the anti-pd1 trials???
Good Luck & keep us posted on your Dr. appt. on Tuesday
Mary
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- January 14, 2012 at 10:30 pm
Hi Kevin,
I was shocked to hear your "bad" news.
When did you have your last Brain scan with NIH???? Whatever date that was, it will give you an indication how fast your tumors in your brain are growing?
Also, before you jump into a "BRAF" positive treatment, do research, because it is a fact now known by doctors from the trials that Braf treatments only work for the majority of people on a average of 6-8 months. Even the braf/mek combo treatments are reporting similar results (6-10 months on the average for the majority of people) then the drugs stop working.
Best bet is to get your immune system to fight the cancer. I suggest you look at anti-pd1 drug. Is your oncologist scheduled to get any of the anti-pd1 trials???
Good Luck & keep us posted on your Dr. appt. on Tuesday
Mary
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- January 14, 2012 at 10:30 pm
Hi Kevin,
I was shocked to hear your "bad" news.
When did you have your last Brain scan with NIH???? Whatever date that was, it will give you an indication how fast your tumors in your brain are growing?
Also, before you jump into a "BRAF" positive treatment, do research, because it is a fact now known by doctors from the trials that Braf treatments only work for the majority of people on a average of 6-8 months. Even the braf/mek combo treatments are reporting similar results (6-10 months on the average for the majority of people) then the drugs stop working.
Best bet is to get your immune system to fight the cancer. I suggest you look at anti-pd1 drug. Is your oncologist scheduled to get any of the anti-pd1 trials???
Good Luck & keep us posted on your Dr. appt. on Tuesday
Mary
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- January 15, 2012 at 5:00 am
My last brain scan was on October 4th I believe. I wish I knew if they popped up back then, or last week. :/ I really hope there will be nothing holding me back from getting the radiation again. I don't see what would, but when I have to wait a few days to talk to someone, I tend wonder and start thinking the dreaded "what-ifs?" Oh tuesday, come quickly.
As for the anti-pd1 drug, I looked it up and it sounds really exciting, I hope I can be a part of it. I have no idea how to make that happen, but I'll definetly mention it to my doctor, maybe he can point me in the right direction.
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- January 15, 2012 at 5:00 am
My last brain scan was on October 4th I believe. I wish I knew if they popped up back then, or last week. :/ I really hope there will be nothing holding me back from getting the radiation again. I don't see what would, but when I have to wait a few days to talk to someone, I tend wonder and start thinking the dreaded "what-ifs?" Oh tuesday, come quickly.
As for the anti-pd1 drug, I looked it up and it sounds really exciting, I hope I can be a part of it. I have no idea how to make that happen, but I'll definetly mention it to my doctor, maybe he can point me in the right direction.
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- January 15, 2012 at 3:07 pm
HI Kevin,
Thank you for posting I always wonder how you are doing. You have been thru a lot but are young and strong and have an amazing positive energy about you. I am hopeful they will zap those brain mets away and pray that your scans show you that ippi is working on the rest of your body.
I am currently on Braf but it has appeared to stop working for me, so I am hoping to get in to PD-1 trial in a week or two, it does seem to be the most promising option out there.
Good luck and keep us posted!! We are all thinking and praying for you
laurie from maine
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- January 15, 2012 at 3:07 pm
HI Kevin,
Thank you for posting I always wonder how you are doing. You have been thru a lot but are young and strong and have an amazing positive energy about you. I am hopeful they will zap those brain mets away and pray that your scans show you that ippi is working on the rest of your body.
I am currently on Braf but it has appeared to stop working for me, so I am hoping to get in to PD-1 trial in a week or two, it does seem to be the most promising option out there.
Good luck and keep us posted!! We are all thinking and praying for you
laurie from maine
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- January 15, 2012 at 3:07 pm
HI Kevin,
Thank you for posting I always wonder how you are doing. You have been thru a lot but are young and strong and have an amazing positive energy about you. I am hopeful they will zap those brain mets away and pray that your scans show you that ippi is working on the rest of your body.
I am currently on Braf but it has appeared to stop working for me, so I am hoping to get in to PD-1 trial in a week or two, it does seem to be the most promising option out there.
Good luck and keep us posted!! We are all thinking and praying for you
laurie from maine
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- January 15, 2012 at 3:08 pm
HI Kevin,
Thank you for posting I always wonder how you are doing. You have been thru a lot but are young and strong and have an amazing positive energy about you. I am hopeful they will zap those brain mets away and pray that your scans show you that ippi is working on the rest of your body.
I am currently on Braf but it has appeared to stop working for me, so I am hoping to get in to PD-1 trial in a week or two, it does seem to be the most promising option out there.
Good luck and keep us posted!! We are all thinking and praying for you
laurie from maine
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- January 15, 2012 at 3:47 pm
Hi Kevin
I had a similar experience to Lisa, while I was on anti-PD-1 (the MDX version). I developed a brain met which we addressed with gamma knife. My oncologist indicated it was not uncommon with these monoclonal antibodies to see such "flair". That said, like you I was also taken aback by it all as we don't need these 'diversions' on the road.
I did not respond to anti-PD-1 and went on to Ipi (waiting for scans) and I'm three brain MRIs in from the met and things appear ok. I hope you get good results from the CT and that the brain met situation is addressed asap.
Finally, with respect to anti-PD-1, two oncologists I have spoken to believe that doing the drugs sequentially offers very synergistic benefits. I found Ipi a bit tough (was knocked around by infusions 3 and 4) but I had zero side effects from the anti-PD-1. So I'm a big fan – even though it didn't seem to work for me. I believe there are now numerous trials open for the non-BMS versions of anti-PD-1 and most don't preclude prior Ipi usage.
Best
Jer
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- January 15, 2012 at 11:57 pm
Kevin,
You have to continue to believe good things on those CT scans because if all goes well, you just need to worry about the brain mets. You'll have no problem getting 3 gamma knifed and if the ipi works, it may keep those brain mets from coming back.
What I have learned from a few people is that brain mets come along while you're on ipi. When those people have ipi work, it keeps the brain mets away for awhile. I know a man who had 2 come along during ipi and that was 19 months ago!!
Let's hope you don't have to worry about going on Anti PD-1 for a long time.
Lisa
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- January 15, 2012 at 11:57 pm
Kevin,
You have to continue to believe good things on those CT scans because if all goes well, you just need to worry about the brain mets. You'll have no problem getting 3 gamma knifed and if the ipi works, it may keep those brain mets from coming back.
What I have learned from a few people is that brain mets come along while you're on ipi. When those people have ipi work, it keeps the brain mets away for awhile. I know a man who had 2 come along during ipi and that was 19 months ago!!
Let's hope you don't have to worry about going on Anti PD-1 for a long time.
Lisa
-
- January 15, 2012 at 11:57 pm
Kevin,
You have to continue to believe good things on those CT scans because if all goes well, you just need to worry about the brain mets. You'll have no problem getting 3 gamma knifed and if the ipi works, it may keep those brain mets from coming back.
What I have learned from a few people is that brain mets come along while you're on ipi. When those people have ipi work, it keeps the brain mets away for awhile. I know a man who had 2 come along during ipi and that was 19 months ago!!
Let's hope you don't have to worry about going on Anti PD-1 for a long time.
Lisa
-
- January 15, 2012 at 3:47 pm
Hi Kevin
I had a similar experience to Lisa, while I was on anti-PD-1 (the MDX version). I developed a brain met which we addressed with gamma knife. My oncologist indicated it was not uncommon with these monoclonal antibodies to see such "flair". That said, like you I was also taken aback by it all as we don't need these 'diversions' on the road.
I did not respond to anti-PD-1 and went on to Ipi (waiting for scans) and I'm three brain MRIs in from the met and things appear ok. I hope you get good results from the CT and that the brain met situation is addressed asap.
Finally, with respect to anti-PD-1, two oncologists I have spoken to believe that doing the drugs sequentially offers very synergistic benefits. I found Ipi a bit tough (was knocked around by infusions 3 and 4) but I had zero side effects from the anti-PD-1. So I'm a big fan – even though it didn't seem to work for me. I believe there are now numerous trials open for the non-BMS versions of anti-PD-1 and most don't preclude prior Ipi usage.
Best
Jer
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- January 15, 2012 at 3:47 pm
Hi Kevin
I had a similar experience to Lisa, while I was on anti-PD-1 (the MDX version). I developed a brain met which we addressed with gamma knife. My oncologist indicated it was not uncommon with these monoclonal antibodies to see such "flair". That said, like you I was also taken aback by it all as we don't need these 'diversions' on the road.
I did not respond to anti-PD-1 and went on to Ipi (waiting for scans) and I'm three brain MRIs in from the met and things appear ok. I hope you get good results from the CT and that the brain met situation is addressed asap.
Finally, with respect to anti-PD-1, two oncologists I have spoken to believe that doing the drugs sequentially offers very synergistic benefits. I found Ipi a bit tough (was knocked around by infusions 3 and 4) but I had zero side effects from the anti-PD-1. So I'm a big fan – even though it didn't seem to work for me. I believe there are now numerous trials open for the non-BMS versions of anti-PD-1 and most don't preclude prior Ipi usage.
Best
Jer
-
- January 15, 2012 at 3:08 pm
HI Kevin,
Thank you for posting I always wonder how you are doing. You have been thru a lot but are young and strong and have an amazing positive energy about you. I am hopeful they will zap those brain mets away and pray that your scans show you that ippi is working on the rest of your body.
I am currently on Braf but it has appeared to stop working for me, so I am hoping to get in to PD-1 trial in a week or two, it does seem to be the most promising option out there.
Good luck and keep us posted!! We are all thinking and praying for you
laurie from maine
-
- January 15, 2012 at 3:08 pm
HI Kevin,
Thank you for posting I always wonder how you are doing. You have been thru a lot but are young and strong and have an amazing positive energy about you. I am hopeful they will zap those brain mets away and pray that your scans show you that ippi is working on the rest of your body.
I am currently on Braf but it has appeared to stop working for me, so I am hoping to get in to PD-1 trial in a week or two, it does seem to be the most promising option out there.
Good luck and keep us posted!! We are all thinking and praying for you
laurie from maine
-
- January 15, 2012 at 5:00 am
My last brain scan was on October 4th I believe. I wish I knew if they popped up back then, or last week. :/ I really hope there will be nothing holding me back from getting the radiation again. I don't see what would, but when I have to wait a few days to talk to someone, I tend wonder and start thinking the dreaded "what-ifs?" Oh tuesday, come quickly.
As for the anti-pd1 drug, I looked it up and it sounds really exciting, I hope I can be a part of it. I have no idea how to make that happen, but I'll definetly mention it to my doctor, maybe he can point me in the right direction.
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- January 16, 2012 at 9:42 pm
Thank you Kevin for posting…Your posts lead to wonderful, information exchanges that helps everyone…thanks for posting Mary…i hope i do better than average on the gsk braf/mek trial…its the trial i am on now…great information from all. Thanks
Suzan AB -
- January 16, 2012 at 9:42 pm
Thank you Kevin for posting…Your posts lead to wonderful, information exchanges that helps everyone…thanks for posting Mary…i hope i do better than average on the gsk braf/mek trial…its the trial i am on now…great information from all. Thanks
Suzan AB -
- January 16, 2012 at 9:42 pm
Thank you Kevin for posting…Your posts lead to wonderful, information exchanges that helps everyone…thanks for posting Mary…i hope i do better than average on the gsk braf/mek trial…its the trial i am on now…great information from all. Thanks
Suzan AB
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