Lu ann,

I was and have remained of the same opinion for myself: No WBR!

With my second dx of brain mets (six months after the first two were treated with SRS) there were 14 newbies scattered throughout my brain. In cerrebellum as well as one on my pon/brainstem.

I was lucky in that all were under 1cm and I remained nearly asymptomatic. My choice was for a series of focalized rad tx's. We treated in batches of 4 twice. Going after the largest, most potentially dangerous, first.

The final six were done with two CyberKnife tx a few days apart.

This was over the course of a year+! So, depending on the size of yours and locations, and nerve! you could do this as well.

Yes, I've now 'used up' my total rad amount, too, as it is cumulative... but, I have had miraculous luck with Xeloda/Temodar for my current 8 brain mets... nearing two yrs of that combination.

My first dx with brain mets was in Sept. '02. I had the support of my partner (in every appt I had) for my decisions. I think this helped get the treatment I wanted. For the most part, I was calm and clear as to my choices, so I didn't sound like a raving idiot! That may have helped, too.

If you still get 'no' for an answer and are ok with the wait, try for a third opinion...

Wishing you very good luck in pursuing the course of treatment YOU choose for yourself, with much hope of long lasting results.

hugs,
pattyz

Lu Ann
I sent you an email. You are in my thoughts and prayers.

Hugs to you,

Oh Lu Ann,


such much fear and unknown. Just be as well informed as you can be even if it scares the hell out of you. information gives you power over your decsions and ability to handle whatever my come

I will think about you. please post as you've said so that we can be with you in spirit

MCS
Maria Singer

still working on second opinion
 

My husband spoke to my rad. onc. yesterday about our concerns. She spoke to the head of the dept. today who agreed that my best course of treatment would be whole brain rad. at a mild to moderate dose. The most severe side effects I would have would be fatigue. I can't imagine being more tired then I already am. I will have to start wearing depends to bed, incase I don't wake up to go p. I usually am up every 2-4 hours at night to go.

We heard from C.T.C.A. about our insurance being accepted. Someone will be in touch to go over things with us further. I need to know from another provider what treatment they think is best.

I will keep all informed
Love, Lu Ann

P.S. I forgot to add. My husband asked my rad. onc. my prognosis. She replied that I am a hard case as my cancer is growing at a very slow rate. She said my body responds well to rad. tx. and along with chemo I could live a long time. I just don't want to be miserable in the meantime. Quality of Life is Sooo Important.

Lu Ann

You remain in my thoughts and Prayers.
Hugs to you

Lu Ann

Yes try to touch base with joe or Christine. I am shaking my head as I read your threads. Hang tough. Ok. We are all thinking of you and your daughter

Lots of love

MCS ( maria)

Lu ann, I received SRS treatment at Cedars Sinai in LA, and The MD"S there said I could always have WBR in the future. Having targeted rads does not preclude the option of WBR.

I would get a second opinion from a major cancer center on this, because I don't believe their information is correct. SRS does not rule WBR in the future if needed.

Lu Ann,
I would get a second opinion. I was also told to get WBR and refused. That was three years ago. Good luck and keep us informed.
Thinking of you.
Barbara H.

second opinion
 

Dearest LuAnn,
I don't know much about Ohio geography, but have you considered the Cleveland Clinic for a second opinion? They are world renowned, and even if they aren't very close, they should be an excellent source for an opinion. I've been going to UNC for my second opinions; I call them my Greek Chorus. They are too far away for me to consider them for providing my immediate care, but they're on top of all the latest treatments and research. Consults from these big centers include review by experts in all relevent fields - radiologists look at the imaging studies, radiation oncologists, pathologists, oncologists, etc. It paid off for me in unexpected ways: a sharp eyed radiologist noticed something on the very edge of a neck-to-thigh PET and suggested an MRI of the brain. Thanks to him, we found 2 brain mets and at a size small enough to allow Gamma Knife. I had no obvious symptoms at the time, and probably would not have for another couple of weeks.
Know you are in my thoughts and prayers.
Rentrac

Luanne,

Feel free to call Christine anytime. I will email you our phone number. Here is a link to Gamma Knife "Centers of Excellence" in the midwest.:

http://www.irsa.org/midwst.html

You may also wish to get a second opinion from Dr. Keith Black's grou[ at the Maxine Durnitz Neroulogical Center in Los Angeles. De. Black is perhaps the nation's best neurosurgeons in the US.


Regards
Joe

LuAnn - another perspective from someone with brain mets...

We found my brain mets in April on MRI. I have no symptoms at all from the mets. There were two that were 9mm (one in the rt celebellum area and one in the rt parietal area) and several punctates, which look like the period at the end of this sentence. At the time, my docs went back and forth and finally agreed that WBR would be the prudent way to go. We also knew that we were switching my drugs to Tykerb/Xeloda. I was not ready for WBR, didn't think that is what I wanted to do at that point. I was leaning towards the targeted 'whack-a-mole' method, wanting to save WBR for last resort down the road. So, I asked my onc and rads onc if they were comfortable with us doing 'watchful waiting' for a month or 6 weeks to see what the Tykerb/Xeloda might do. They agreed that it would be a reasonable way to approach it. So that's what we did. I had an MRI last week, and it showed that there was no growth at all of the brain spots. They had remained completely stable on the Tykerb/Xeloda, and that one of the 9mm spots was less enhanced, which the radiologist said was a positive thing. Along with that great MRI result, my tumor markers fell from 37.5 to 17.5. My onc and rads onc both agree that we can continue 'watchful waiting' for another 6-8 weeks and do another MRI before we make any other decisions....

Luann, I am thinking of you and hoping for a positive result. I am glad and encouraged to hear that some of our sisters are doing well dealing with brain mets. YOU WILL Too! Ceesun...Cathy

Lu Ann,
Thinking through options and then waiting for the next decision can be agonizing. Just wanted you to know you're in my thoughts and prayers daily. Let us know how you're doing.
Warmest wishes,
Rentrac

brain mets
 

Lu Ann:

How are you? Have you talked to Steph from Seattle? she has experienced this type of procedure; she's really nice and knowledgeable about this whole thing. I will keep you in my prayers....

Dear LuAnn,
Just wanted to let you know that you'll be in my thoughts and prayers. Hoping that you are able to find the treatment that nails those mets!

Marcia

I second what Joe says about Dr. Keith Black. He was one of the neuro-surgeons I consulted when I was first panicked about my brain mets in my cerebellum in January 06. I chose to receive my brain mets care there.

He is brilliant! He thinks outside the box, and explains his opinion and just gives you his opinion straight out. He is also an incredibly talented surgeon.

My success in dealing with my brain mets, and as of last Wed being able to say I am NED from 3 lesions in my brain, is due in large part to Dr. Black's phenomenal team at Cedar-Sinai's Maxine Dunitz Neurosurgical Institute.

Also Dr. Black and his team are all active in their particular hobbies, Dr. Black skydives and mountain climbs, Dr. Yu skiis, etc. They understood my need for a high quality of life continuing the sports I love. Just weeks after surgery to remove a lesion in my cerebellum this March, Dr. Yu cleared me for spring snow skiing. Now that's an understanding surgeon!!!

I havn't been on board for the last 2 weeks. I was admitted to the hospital with double vision June 14 and I started WBR the following day. I have 5 more treatments. So far, so good. I know the fatigue will be coming, although I sleep all the time now. The double vision is just about gone. I don't know if it is the tx. or the decadron, but I'll take it. I fell last week from being dizzy and I don't want to do that again. My knees just buckled down underneath me. Thank you all for your cares and concerns. I will be in touch to let you know how things are going. Both my rad. and med. onc. say it's hard giving me a prognosis as my cancer is growing very slow. I guess that is a good way to think about it. Take care and God Bless You. Love, Lu Ann

Lu Ann
You are in my thoughts and Prayers. I hope you are feeling better soon. Hang in there, Hugs to you!

Sometimes, when we are at our weakest, that's when our true strength emerges. I'm praying and pulling for you, too.

Steph C

Lu Ann,
Sending you strength and love from Mississippi. Wish there was something more...

many warm hugs,marcia