Brain Mets - answered our question?

[Mary - Tierrasanta in San Diego]

Sorry if I have missed any posts in the last few days but between critical illness for pets and my torso MRI, Breast MRI and Brain MRI I have been busy.
Janelle and I have been wondering if it is possible to get Brain mets while on Herceptin. Onc told me to come in today (3/25) for results. Did not even get the results of the torso scan or the Breast scan since he was so stunned by the Brain MRI. He would never have scheduled the test as I don't have any symptoms but I insisted. There are so many mets that they can't be counted and he is stunned that I am not showing side effects. Apparently most would be having seizures etc. with this many, especially this size. Already had my first treatment of whole brain radiation. Astoundingly I feel as good as I always have! Still planning to continue Herceptin. Is this because I have stage IV Lobular cancer or are we all this vulnerable?

[pattyd]

I was dx with brain mets in Aug 2003- only symptoms were mild headaches and one episode of dizziness. My MRI showed 6 lesions- I had WBR because my onc said that was the only way to get any small ones that may not show up on the MRI- I was put opn Decadron too which helped the headaches- I had a follow up CT in Nov which showed one new lesion but my onc and radiologist felt it was ok to wait- I just had another MRI a few weeks ago which showed total of 3 lesions all under 1 cm. I am still on Decadron and doing ok-God Bless and good luck with your treatment. Be sure and do follow up scans! PattyD

[Joe]

Mary,
For months we have been stressing the need for brain MRI's in stage IV metastatic BC patients. Brain mets are treatable, if caught early.

Below is a link to an experimental drug which has been proven effective in cojunction with WBR. We learned about it in San Antonio and it has been fast tracked by the FDA.

Warmest Regards
Joe

[Lolly]

Mary,
This news is shocking for me too, and it's at the heart of what we all worry about. I have just had my annual scans which did NOT include a Brain MRI; I had one a year ago and all was well, but am going to start lobbying for another...Thank you for sharing this news with us, please keep us posted, and really hope the pets health improves too.
hugs, Lolly

[kathleen]

Miss Mary,

as you know when we spoke last night--My onc also said when i asked why i didn't get a brain mri--his response was--"only when we see symptoms"--it is so obvious that the symptoms are null or very vague for most of us--we are thrown into menopause--that causes confusion & headaches too! chemo brain is something we all laugh about--i am going to find out why they don't test the brain--we need a better answer--as for you miss mary you have to be fine & will be -you are my mentor--& sister--okay enough of the mushy stuff--chin up sister! oxoxoxo kathy

[Annamarie16]

Still can't figure out why they don't do brain MRI's for stage IV. The only reason they found my tumor was because the left side of my neck was feeling "tired" and sometimes, my head hurt a little. It actually felt like it would if you sat at the computer for hours without a break. They were my symptoms. As it turned out, my tumor was the size of a green grape and was not located on the left side of the brain, but the right. I would strongly suggest anyone who is Stage IV to have a brain MRI as part of their tests.

[eleanor]

I'm with Patty on this one, make up symptons if you have to!!! I have been fortunate in that my onc schedules one every year starting with the first yr I was dx. But I have to initiate the test. In other words, I have to express alot of concern about my condition. (you know, maybe whine a little??)
Remember that herceptin does not cross the brain barrier, so it can be working like a charm throughout your body, but will not stop cancer cells from setting up shop in your brain. Hopefully that new drug with the smaller molecules will prove effective and be available soon.
el