Leptomeningeal metastases??

My son's new mother-in-law (and my friend) had breast cancer 4 years ago, and has been cancer free until last December when she was diagnosed with brain cancer.  After much chemo, etc., about 6 weeks ago she had a petscan and it showed no active cancer growth the tumors were gone, no swelling in the brain - such good news!  They said she would have reduced chemo, and would be done by the holidays.  However, when checking her arthritis in her neck and shoulder with an MRI, they found Leptomeningeal metastases.  My son begged me to do the research to see if there is anywhere she can go, for a 2nd opinion.  Is this as bad as I am finding, doing the research?  Is there any university or teaching hospital in the Chicago area that specializes in this type of brain cancer? 

 I read some of the discussion on the forum, and felt that all of you are so very supportive and especially filled with information on what to do.  Any help will be greatly appreciated.  

 My Dad died of a brain tumor 18 years ago, and I wish I had insisted on taking him somewhere else.  In looking back, the doctors around here were pretty lame, and I should have insisted.   I want to do this for my son's new mother-in-law. 

On 10/12/2009 gardenqueen wrote:

My son's new mother-in-law (and my friend) had breast cancer 4 years ago, and has been cancer free until last December when she was diagnosed with brain cancer.  After much chemo, etc., about 6 weeks ago she had a petscan and it showed no active cancer growth the tumors were gone, no swelling in the brain - such good news!  They said she would have reduced chemo, and would be done by the holidays.  However, when checking her arthritis in her neck and shoulder with an MRI, they found Leptomeningeal metastases.  My son begged me to do the research to see if there is anywhere she can go, for a 2nd opinion.  Is this as bad as I am finding, doing the research?  Is there any university or teaching hospital in the Chicago area that specializes in this type of brain cancer? 

 I read some of the discussion on the forum, and felt that all of you are so very supportive and especially filled with information on what to do.  Any help will be greatly appreciated.  

 My Dad died of a brain tumor 18 years ago, and I wish I had insisted on taking him somewhere else.  In looking back, the doctors around here were pretty lame, and I should have insisted.   I want to do this for my son's new mother-in-law. 

Hi,

I am sorry to hear this about your son's mother in law. LM is also known as CM (Carcinoma Meningtsis). Unfortunately the prognosis is not good with this type of cancer because it is usually found in the fluids of the brain and spinal cord. My 35 year old friend had it as a result of breast cancer. After doing my own research, I found that the only place trying new types of treatments for this type of cancer is in Europe. I'm sorry I don't have positive answers to share.

Hi Gardenqueen,

Just checked a few things and found research being done on this very topic by the following doc.  Here's the basic info on him:

Department
of Neurology, Fred Hutchinson Cancer Research Center, University of
Washington, Neuro-Oncology Program, Seattle, Washington, USA

Good luck.  Hugs, jan

On 10/12/2009 jannibc wrote:

Hi Gardenqueen,

Just checked a few things and found research being done on this very topic by the following doc.  Here's the basic info on him:

Leptomeningeal metastasis.

Chamberlain MC.

Department
of Neurology, Fred Hutchinson Cancer Research Center, University of
Washington, Neuro-Oncology Program, Seattle, Washington, USA

Good luck.  Hugs, jan

 

Jan -

Thank you!  I've spent the whole day and last Friday trying to get info about this.  This is the first bit of positive news.   University of Chicago, and Northwestern Memorial Hospital have been suggested too, but not specifically for this type of cancer.   What I've heard is, try to find the center, university, doc, etc. that specializes in that specific cancer.   

My name is Jan, too!

Jan/Gardenqueen

Ok Jan...how weird is this?  I was watching a show on Popular Science last night and the Fred Hutchinson Brain Cancer group was showing new experiments.  They were introduced as leaders in brain science!  God works in mysterious ways!

Keep me posted! Hugs,

jan