Update 3 weeks post X-knife for Brain Mets

Esther · 02-20-2006, 10:50 PM

I had a second consultation with Dr. Black today at Cedars-Sinai. I was interested to know what treatments he would recommend for me post X-knife. I had a list of question on Lapitinib, Avastin,Temodar....

Well, his opinion is to do....NOTHING! Was I ever surprised. He said that in my case, the side effects would not be worth the benefits of chemo treatments. He said that in my case, there was a 50% chance that I would not recur, or that any new lesions would appear. So...50% chance that the one X-knife treatment is all the treatment I'll ever need for Brain Mets.

Since he is recommending MRI's every 3 months, he feels that we would catch anything that pops up early, and it could be treated by repeat SRS.

He said that the textbook treatment would include WBR, but that in my case he thought that would be a very bad idea.

He said that Brain mets from another primary are easier to manage than brain tumors that are primary to the brain, as primary brain tumors are more acclimated to the brain and are harder to manage.

MANAGE is the word he used in regards to brain mets, he was very matter of fact and seemed confident that managing my brain mets was something he was confident he could do.

I was still doubtful, as I had been sure he would recommend some chemo at this point. But on the way home, I was talking with Chris, and said " I went to Dr. Black because I was convinced he was one of the best in the world to take care of brain tumors, so I have to have confidence in what his opinion is"

So I guess for now I will just continue with Herceptin, and do MRI's 4 times a year, and hope for the best. And continue to have as good a quality of life as I can possibly have. Last week our group was putting deposits on our yearly week long ski trip. Next winter it will be in Steamboat,CO. As we put our deposits down I thought, well, I'm expecting to be here, be healthy and be in condition to ski a year from now! Hope is what keeps us going.

Shell · 02-21-2006, 05:34 AM

Esther-

that is great news, and I agree with you that sometimes we make the treatment decision just by seeing one doctor over another.

we considered steamboat for skiing next year (yes we plan it now as well...), but i think we're going to give jackson hole a shot.

stay well,
shell

brittd01 · 02-21-2006, 06:50 AM

You'll be skiing in Steamboat next year - no doubt!!! Great news Esther!

Love,
Brittany

Sandy H · 02-21-2006, 09:04 AM

Esther that is wonderful news!! I did read some where that brain mets is much easier to treat then primary brain tumors. That does give us more hope!!! Thanks for the update. I know you have 3 pugs, and I am enjoying my 5 month old pug so much. He is so loving, playful and smart. My husband takes him to the mailbox every morning and he brings me the newspaper into the house, up over a full flight of stairs and to where I am. He is so excited after he has done it and of course he gets a big treat. Just had to share this with you. hugs, Sandy

Esther · 02-21-2006, 11:51 AM

Sandy, your pug sounds like a sweetheart. Of course, I think all pugs are wonderful! They make the best pets, don't they?

Marlys · 02-21-2006, 02:05 PM

Sandy & Esther,
Do any of your pugs sing "I will survive" Like Frank in "Men Black 2?"
I'll bet they do and that is why you all do so well!!
Love & Hugs,
Marlys

Sherryg683 · 02-21-2006, 04:10 PM

I had a wonderful pug, named Pugsley (very original, I know) for 16 years..he was the best little dog. ..sherryg683

02-21-2006, 04:20 PM

Shih Tzus rule LOL

lexigirl · 02-21-2006, 05:02 PM

Esther,

That is really great news. Your story will give many of us b/c survivors much hope.

I am seeing rads doc tomorrow and am going to see if I can have a brain mri scheduled. I have been having pain on and off especially behind my left eye. My vision seems to be a little worse, too.

Keep us all posted on your recovery. You are inspirational!

Love,
Lexi

Esther · 02-22-2006, 02:59 PM

Lexi, push for an MRI and I hope that it turns out to be nothing more than eye strain. Keep us posted.

lexigirl · 02-22-2006, 04:10 PM

Esther,

I saw my rads onc today and asked for an MRI. He put the order in today.

I, too hope that it is just something like eye strain or my stigmatism acting up. If it's something else I sure hope that I will do as well as you!!

Love,
Lexi

Berta · 02-22-2006, 05:19 PM

Lexi: I've been having similar symptoms, probably just stress headaches and getting more nearsighted due to age and herceptin but I had an MRI today just in case. Results tomorrow. BERTA

lexigirl · 02-22-2006, 06:36 PM

Berta,

I do have a stigmatism. I have always been farsighted and really started having some changes in my eyes about 10 years ago. I was pregnant with my daughter and noticed my eyes seemes to be having to work a little harder (if that makes any sense). Now, having the pain in my left eye AND having been diagnosed with this aggresive cancer I'm a little freaked out.

Thank you for responding and I sure hope it's like you said. Eyesight is just changing and maybe straining a bit.

Love,
Lexi

Berta · 02-23-2006, 06:46 PM

Lexi: I got the results of MRI back today. No evidence of metastasis or any other brain abnormality. what a relief. I guess I am just having migraines and getting more nearsighted.I'm really glad that I did it and think I will probably insist on one every year or so. Hope you had good luck too. BERTA

Kim in CA · 02-23-2006, 09:00 PM

Esther,

Good news that Dr. Black doesn't think you need to do anything more right now. Like you, I want to do everything possible to stay on top of things. So we just continue our MRI's every 3 months and do the Herceptin, and be very, very watchful of anything that doesn't feel right(somedays I swear that every little ache feels like it must be cancer sneaking up on me). So get out there and drink in everyday, cause who knows, we could get hit by a giant meteor tomorrow!

Kim in CA

02-24-2006, 05:36 AM

I have been reading a book on macular degeneration on my search for information on omega threes and sixes, and one of the recommendations is greens greens and omega three rich oils fish and flaxseed.

It helps with circulation, dry eye, and threes are an important component of the eye's make up.

RB

lexigirl · 02-24-2006, 04:00 PM

Hello Ladies,

I had my muga and a brain MRI today. The mri wasn't as scary as I'd thought it might be, but my veins aren't doing to great anymore. The techs were great though and used a butterfly needle.

Now the waiting....

I was happy that they got me in so quickly and I was able to do both tests one after the other!

I hope everyone has a good weekend.

Love,
Lexi

Barbara H. · 02-25-2006, 04:31 PM

Hi Esther,
This sounds like great news and sound advice. I have been away for a week in ski country in NH, but didn't ski. I let my family do that. However, I watched the ladies on TV at the Olympics, and every time they came zooming down the hill I thought of you. You are one huge inspiration!!!!
Best wishes,
Barbara H.

lexigirl · 02-25-2006, 05:07 PM

Berta,

I am so happy to read that your MRI was all clear!! Wahooo...!! I am not sure when I will get my results back. How long does it usually take?? I am trying not to fret too much as whatever may be will be.

I'll keep everyone posted.

Love,
Lexi

Lolly · 02-25-2006, 06:39 PM

Lexi, your onc should have the results early this coming week, maybe even by Monday afternoon. It depends on how busy the MRI is on a given day, but usually the report is faxed right to your onc's office as soon as it's ready...My onc calls me that day as he knows I'll worry. Keep us posted.

<3 Lolly