Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

May start a clinical trial - brain mets

Cathysch
0 Recommendations

Hey galpals!! When I last updated I was awaiting results of a possible diagnosis of CA in the lining of the brain/spinal cord (meninges). Learned on Friday that this is NO SO!! I do have some additional growth in the brain and liver and it is now time for a clinical trial, specifically for the brain, since that is the more challenging area to treat. I'm heading to Dana Farber on Tuesday to meet with Nancy Lin and will know from there how we will proceed.

Has anyone participated in a clinical trial for brain mets? Anyone travelled "out of network" for treatment and had to endure insurance headaches for this "choice"? I'd love to hear your expereinces/advice. Thanks

Explore topics in this discussion:

Cancer Breast cancer

8 replies

Groovygirlcool

Hey Cathy

So glad to hear something is going ok - a 'no' result for the ca.men. worry.....no experience or advice in response to your question - just a 'hey- glad to hear you're ok'....xxxGGC

Lukesgrandma

Cathy, Just wanted to wish you good luck at Dana Farber. I haven't had any experience with out-of-network, but it's a concern of mine for the future.
Let us know how your appointment goes. Glad your spine was clear.
A big hug to you!
Susan

Cathysch

Thanks!

maxnan

I don't have the experiences that you are looking for, but I have been to Dana Farber and had to deal with insurance issues -- they have people there that will guide you through this/submit paperwork, etc. Please utilize this service, get the person's name/telephone number that will be assigned to you for this, and don't be afraid of calling him/her often.

So glad that you got good news!!!

GirliebikerTPBC

Hi Cathysch,

I don't have any insurance issues, but wanted to let you know that I treat at Dana-Farber and love it there. Everyone is so professional and caring and helpful.

I was at a half-day seminar on metastatic breast cancer at Dana-Farber yesterday and Nancy Lin was one of the physicians on the panel discussion. She was very impressive and I think you will like her very much. She is very involved in research. Good luck and let us know how it goes.

linskate

Keep us informed of your progress. I was at the seminar also and very impressed with Nancy Lin. I just finished 5 treatments of wbr and will meet with my oncol on Friday to see what's next. I will ask him about this trial as it sounds very encouraging.

chainsawz

Whew - I am so glad it is only brain mets! I haven't done a clinical trial for my brain mets, but please keep us updated because I am always interested. I have been taking tykerb & herceptin and sticking to my guns about having only SRS on my brain. Best of luck to you!! lisa

StickiVicki

Just wanted to say I hope all goes well and the trial can really come up with something that will really help you. I'm only a 'bones' girl so far and hoping to keep it that way, but the cancer does what it wants to do, not what we want it to do.

Maybe you could post more about the criteria for being in the trial, or a link to information for others with similar mets?

Keeping my paws crossed that it goes well, Vicki xx

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You