Has anyone asked for a test to be redone

[cyalata]

I had a brain mri about 6 weeks ago, all normal; went to another facility with new & improved super machine due to shaking in arm, leg & teeth on left side & showed highly abnormal brain activity, fluid in brain lining 95% cancer & 2 tumors. Doc wants to start wbr! I can't believe this. Appointment today with onc & referral to neuro onc. Help! Need support!!!!

[Jackie07]

Hi,

I'm sorry about the new development. Rest be assured that your brain mets can be treated and many members on this Board (including the founder, Christine) have successfully treated their brain mets.

You can use the 'Search' function (on the top bar) to search for previous postings on the subjects. There are threads such as 'long-time survivor', 'long-term survivor', 'calling for stage IV sisters'... etc. where you can read others' stories.

Because of the vast volume of new articles from the ASCO meeting, members might have been distracted and not seen/answered your posting. Please don't be discouraged. We will be acompanying you in this fight, and you will win!

[Becky]

How about getting the test redone on the old machine. If there are differences, so be it - if NOT, then there was no change and the change you are seeing now is only due to the machines and not you.

Just a thought

[Chelee]

Cyalata,
I'm so sorry to hear your news. I can only imagine how upsetting it must be. Jackie is right...there are other Her2 sisters on this board that have had brain mets and been treated and done well. I know some of the members will surely reply and offer their support because they have been through this too. Your onc and medical team will come up with a good trt plan for you. (It's always good to get a 2nd opinion for a trt plan if you have time?) Hang in there...although easier said then done under circumstances like this. I'm sure some others will chime in soon.

Chelee

[Jackie07]

Cyalata,

Lani has posted a new ASCO article about the treatment of brain mets: "active treatment option and a viable alternative 2 immediate Whole brain radiation" http://her2support.org/vbulletin/showthread.php?t=50053.

I hope you will get to read the abstract before your meeting with your oncologist.

[cyalata]

Thank you all - I know brain mets can be controlled but mine happen to be in the lining which is more difficult. I saw my onc yesterday & they need to do wbr because there are 2 small lesions on the brain as well as the lining. I will be starting on Monday as I'm on high dose steroids & asymptomatic so they're ok with that. She's also referring me to a neuro oncologist who specializes in my particular case. So I'm starting to feel a little more hopeful about treating this. I'm so thankful I found you all - support means soooo much. Love, Gail

[Chelee]

Hi Gail,
I really am so sorry you even have to go thru all this. I know it must be scary and quite over whelming to say the least. It's good that your onc is following thru with with a neuro oncologist that specializes in cases like yours as I think you will find that helpful. We have one member on this board that is dealing with brain mets that is trying a new trt method and getting very exciting results already. In case you haven't read her posts here are the links to them. It might be worth showing your onc in case it fits your situation in any way?

http://her2support.org/vbulletin/showthread.php?t=49623

http://her2support.org/vbulletin/showthread.php?t=50032

I know your starting wbr tomorrow...wishing you the best. Positive thoughts coming your way.

Chelee

[ElaineM]

I have my fingers crossed for you too !!!!!!!! Take good care of yourself.