HELP-New Brain Mets need advise with treatment decisions

ebren
  • By ebren · January 9, 2013 at 5:10 pm · 5 replies
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Hello to All,

I have recently been diagnosed with Brain mets and underwent emergent surgery to remove one tumor. I was told that I have a second tumor that could be treated with Cyberknife. Just finished the preparation work up for that and was told today that there are 4 more micro lesions on MRI and that whole brain radiation would be the next appropriate step. I have read that many people with multiple brain lesions opt for treatment with RSR rather than whole brain radiation. My lung mets were responding well to abraxane and stable for the most part.

I will be speaking to my Onc tomorrow. His plan was to start back on abraxane and add Carboplatin for brain.


Anyone had whole brain radiation and could share side effects or thoughts on WBR vs. RSR.

Anyone been treated with Carboplatin and could share their experience.

Just feeling alittle overwhelmed by rapidly changing plans and feeling overwhelmed.

thank you in advance for any information you can share.
love to all
ellen

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5 replies   

Bestbird

Stage IV bc is tough for sure, and brain mets can add to the challenge. I am so sorry you are going through this and hope that your treatment is 100% effective in eradicating every last met!

There's a great thread on another forum solely for bc folks with brain mets that you may want to have a look at: http://community.breastcancer.org/forum/8/topic/777599?page=69#idx_2041

Wishing you a great outcome!

Cathyy424

Just want to say I will keep you in my prayers.
Stay strong !!!!

7975

Ellen- Sorry you have to go through this. My wife had WBR and all of the small lesions disappeared and have not grown back. It has been 8 months. They are waiting to use stereotactic radiation to knock back a larger tumor if it grows. For side effects of WBR, my wife had hair loss, skin irritation, and fatigue. She also seemed to have slowed cognition and trouble with memory and concentrating. These things got better over time. She now seems to have no loss of personality or intelligence.

Juanne

Ellen,
Your story is almost the same as mine. I actually just went off Abraxane bc of side effects breathing. I'm currently on 2 her2+ blockers. have lung Mets that seem somewhat controlled. But last month we discovered multiple brain mets the big one caused pressure on my cerebellum and I had to have emergency brain surgery.

I have several lesions in my brain the largest is 2x2 cm and rests on my cortex and could affect left side mobility, so they opted to leave that one and do WBR. I am now at round 12 of 15. We will wait for 6 weeks and do another MRI. I will most likely end up with gamma knife for the large lesion, but they are hoping they all shrink and I won't have to deal with this for a while.

I am still dealing with issues from surgery. I have to stay in the car for a little while after a car ride, otherwise I lose my legs, but I am adapting. With WBR I cannot drive, have fatigue, hair loss and feel blah. But I do what I can in the am and rest for the day. And so far no seizures, but I may go on antiseizure meds as a precaution in the future.

Good luck and feel free to ask me any questions.

Julie Anne

Hebafd

Hello to all warriors, you survival stories are inspiring. I was just diagnosed with multiple (5) small lesions in brain largest is 1.7x1.6 - onc split on whether I should have stereotactic directed radiation or whoe brain radiation???? I am so confused and heard success stories about WBR but at the same time heard complications like personality change and other side effects. Do know what to do?? Help Help Help, my bone mets is controllable, with pain here and there but this new brain mets is devastating. Please help, WBR or gamma knife???

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