Brain mets back

Kyle,

I'm sorry to learn this. Question: and keep in mind, I don't know how this stuff works, but could you talk with your dr and volunteer to be a guinea pig and ask them to let you try maybe something they wouldn't normally think of and let you take it out for a test drive?  It just seems to me that if you're willing to try whatever you can, someone ought to be able to offer you something to try…to tread where angels fear. Are you, by chance, going to a research facility?

Just thoughts. Hope someone will work with you and a door will open for you.

Lord, in Your mercy. Amen.

Grace and peace Kyle,

Carol

Kyle,

I'm sorry to learn this. Question: and keep in mind, I don't know how this stuff works, but could you talk with your dr and volunteer to be a guinea pig and ask them to let you try maybe something they wouldn't normally think of and let you take it out for a test drive?  It just seems to me that if you're willing to try whatever you can, someone ought to be able to offer you something to try…to tread where angels fear. Are you, by chance, going to a research facility?

Just thoughts. Hope someone will work with you and a door will open for you.

Lord, in Your mercy. Amen.

Grace and peace Kyle,

Carol

I hear your frustration, Kyle. I spent 3 years searching for something for brain mets before finally finding this:

http://clinicaltrials.gov/ct2/show/NCT01266967?term=gsk+113929&rank=1

Like you, the brain mets without extracranial disease left it impossible for one to get on a trial. It was somewhat frustrating that after 3 years of no extracranial disease and finally finding something that looked promising, mel went on a rampage a mere 2-3? weeks before I commenced the study- had cutaneous nodules popping up everywhere daily, lymph node involvement in the neck and axilla, subq's throughout the abdomen (one of which completely prevented a ureter from working), liver mets and adrenal met. I could have done with THOSE a couple of years ago- certainly would have helped to get on a study!!! But no… they rock up and throw a party when I don't require extracranial disease as an inclusion criteria (inconvenient party poopers!)

Anyhoo, so far I'm having good results so thought maybe it might be something for you to consider? At the very least, it's an example that brain mets trials are out there now. It does require a BRAF mutation to be eligible- I had previous tumour tissue sitting there from all of the past craniotomies, so it was a simple matter of sending some to the US and their testing (only around a 5-7 day turnaround)

Don't know if this will be of any help to you, but it might give you some hope regarding looking for some trials that may be out there (I know I'd almost given up looking!)

Nic

I hear your frustration, Kyle. I spent 3 years searching for something for brain mets before finally finding this:

http://clinicaltrials.gov/ct2/show/NCT01266967?term=gsk+113929&rank=1

Like you, the brain mets without extracranial disease left it impossible for one to get on a trial. It was somewhat frustrating that after 3 years of no extracranial disease and finally finding something that looked promising, mel went on a rampage a mere 2-3? weeks before I commenced the study- had cutaneous nodules popping up everywhere daily, lymph node involvement in the neck and axilla, subq's throughout the abdomen (one of which completely prevented a ureter from working), liver mets and adrenal met. I could have done with THOSE a couple of years ago- certainly would have helped to get on a study!!! But no… they rock up and throw a party when I don't require extracranial disease as an inclusion criteria (inconvenient party poopers!)

Anyhoo, so far I'm having good results so thought maybe it might be something for you to consider? At the very least, it's an example that brain mets trials are out there now. It does require a BRAF mutation to be eligible- I had previous tumour tissue sitting there from all of the past craniotomies, so it was a simple matter of sending some to the US and their testing (only around a 5-7 day turnaround)

Don't know if this will be of any help to you, but it might give you some hope regarding looking for some trials that may be out there (I know I'd almost given up looking!)

Nic

I share your frustration and feel for you – my wife is in exactly the same spot. I have scoured the internet and clinical trials and found nothing – and she is BRAF negative which means the one cited on this post doesn;t apply to her. I found a study yesterday in my research, which I couldn't dig up right now for the life of me, but it was buried really deep in my google search page numbers – that essentially indicated that based on meta analysis, there was not a profound difference in outcomes between patients with treated and/or stable brain mets and those without. I think the study is spitting in the wind though, If you have brain mets and extracranial disease you are pretty screwed. Right now the only thing my wife can do is complete her brain radiation, and then wait two months for the brain to calm down and then maybe just maybe there is a shot at a clinical trial if she stays clear.  But in the meantime melanoma is going along in her lungs and we presume elsewhere. It just reflects the dismal state of research on skin cancer. The Economist has an article on cancer in its most recent edition and according to the numbers in a table while in 2010 there were over 900 clinical trials for cancer, only about 70 were for dermatological. The drug companies want to make money and get drugs approved and they neeed to show efficacy and it is highly inconvenient to getting FDA approval if you have brain met patients in your study group – based on common wisdom. 

Even so – the quote from the cheife medical officer of the American Cancer Society was " we are not buying a lot of life prolongation with these drugs". 

I share your frustration and feel for you – my wife is in exactly the same spot. I have scoured the internet and clinical trials and found nothing – and she is BRAF negative which means the one cited on this post doesn;t apply to her. I found a study yesterday in my research, which I couldn't dig up right now for the life of me, but it was buried really deep in my google search page numbers – that essentially indicated that based on meta analysis, there was not a profound difference in outcomes between patients with treated and/or stable brain mets and those without. I think the study is spitting in the wind though, If you have brain mets and extracranial disease you are pretty screwed. Right now the only thing my wife can do is complete her brain radiation, and then wait two months for the brain to calm down and then maybe just maybe there is a shot at a clinical trial if she stays clear.  But in the meantime melanoma is going along in her lungs and we presume elsewhere. It just reflects the dismal state of research on skin cancer. The Economist has an article on cancer in its most recent edition and according to the numbers in a table while in 2010 there were over 900 clinical trials for cancer, only about 70 were for dermatological. The drug companies want to make money and get drugs approved and they neeed to show efficacy and it is highly inconvenient to getting FDA approval if you have brain met patients in your study group – based on common wisdom. 

Even so – the quote from the cheife medical officer of the American Cancer Society was " we are not buying a lot of life prolongation with these drugs". 

Kyle,

So sorry, that is the worse news of all to hear and one that scares the hell out of all of us.  I checked your profile, at least you are with one of the best with Dr Daud.  The body does such a good job of protecting the brain that once something does get past that barrier, researchers seem to be at a loss at what to do about it.

Wishing all the best for you.  Keep asking the questions, too many answers are popping up these days.

Mary

Stage 3

Kyle,

So sorry, that is the worse news of all to hear and one that scares the hell out of all of us.  I checked your profile, at least you are with one of the best with Dr Daud.  The body does such a good job of protecting the brain that once something does get past that barrier, researchers seem to be at a loss at what to do about it.

Wishing all the best for you.  Keep asking the questions, too many answers are popping up these days.

Mary

Stage 3