Eligibility for NIH Trials

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11/21/2011 4:21pm
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Replies: 3

I just got off the phone with the NIH recruitment center.  I'd identified a trial I thought would be a good approach for me.  Some of the NIH trials stipulate that patients with 3 or fewer brain mets are allowed.  Some say nothing at all about brain qualifications.  Apparently, the lack of mention doesn't mean there are no restrictions -  the nurse was insistent that all their trials required three or fewer brain mets.  I am devastated - but I also don't fully believe her.  Does anybody know 100% if this is true? 

Katy

Just keep going!

Charlie S - (11/21/2011 - 7:42pm)

Can't speak for NIH, but in general, three brain mets can be a go-no-go for not only many trials, but many mainstream treatments and SRS as well.

The point is that those mets must be addressed in a medically appropriate way FIRST, because that is the most active threat to a patent above all else.

As a side note, from personal experience, the trial nurses at NIH WANT to qualify people for trials, they really do; and I can see no reason they would apply random or arbitary rules; rather, they are bound by the trial protocols handed to them for trial recruitment screening.

Many trials have timelines of previous treatments, trials and surgeries and measureable disease that are not widely advertised in the trial recruitment abstract guidelines; so please do not feel you are being singled out, rather, though I can only begin to understand how deflating this news was to you.....try and use it to lay out a plan forward..

For instance, what are the trial recruitment guidelines/waiting times  for previously treated brain mets?  What exclusionary prior treatments are there? Are any particular treatments exclusionary or inclusionary? 

This news to you is an obstacle but it also another reason to keep working the problem; piece by piece.

Cheers,

Charlie S

 

jag - (11/21/2011 - 8:32pm)

I bet if we had a penny for all of the long term melanoma survivors that went to the NIH, well, we would have a haypenny.

Here are a bunch more options.

http://www.clinicaltrials.gov/ct2/results?term=melanoma+brain+mets

Insert Generic Inspirational Motto Here

Phil S - (11/21/2011 - 11:28pm)

Katy, Glad to see your post, have been wondering how you were doing! My husband has brain mets, and also recently completed WBR, we are in Texas right now at MD Anderson. I remember Phil's local doctor reminding us that NIH is a research center while MD Anderson is a cancer hospital, so for now we have put our energy into finding treatment here! I couldn't find anything that Phil qualified for at NIH.
Hope you are feeling well, running, and fighting on! God bless, Valerie (Phil's wife)