brain mets, help and thanks

Please help. I just got home from hospital after a "migraine" and trembling lip snt me to onc. and an mri. I just had surgery for a 3 cm tumor in cerebellum on Friday. I have 4-7 other tumors too and they are pushing wbr on me and I have been looking into this for a long time. I don't like what I see but the rad. onc, pretty much told me that "cognitive" dyfuction is a pretty moot point since I'll pbobably be dead in 6 months. I made an appt. withDr.Black at Cedars-sinai and my husband will take me there Feb.13th. What do you think? I am on Decadron now and very nervous and weepy, plus the bad news about brain mets.

[jsattaw]

So sorry to hear your news and thinking of you. I don't have any experience but know others will give you some direction. Hang in there and don't listen to those doctors and their prognoses -- you can do it!

Jill

[StephN]

in Dr. Black. Another of our members here had a procedure with him just last week.
I had a 3cm tumor in my cerebellum a year ago and had Gamma Knife for that and a smaller tumor.

Can you tell me why you say "4 - 7 other tumors" ?? Do they not know for certain what they are seeing in some places?
Decadron does all sort of mean things to us and you must try to mellow out and counter the effects of that drug.

Once you see Dr. Black I am sure you will have a good plan and feel better about the future. If you do a search for posts by Esther on this board you can see what she had to say after her visit with him.

That rad onc should be horsewhipped! He doesn't know if you have 6 months. He's is just basing it on past patient experience. I know of a number of women with multiple brain mets who have done quite well. ( Patty on this list for one ).

I am so glad you are going to someone of Dr. Black's reputation. He will certainly give you options for treatment such as temodar.

Are your brain mets all in the cerebellum or back of the head? I have a girlfriend with mets to the brain from lung cancer. Her rad onc was very creative. Her mets were in the back of the head. He was able to custom design a radiation program that avoided the cognitive areas in the front of the brain. If you don't have any lesions up front you might ask about this. Since you are going to be in LA, if you want to see this rad onc, he is at the City of Hope and his name is Dr. Radany.

By the way, that decadron can certainly make you weepy and nervous. Maybe your onc can give you a mild tranquilizer to help out.

Good luck, don't give up hope just because of one jerk....

[Sandy H]

I don't have brain mets but I can tell you that three of the best people with experience with brain mets are Christine, Steph and Esther. I am sure there are others and you may hear from them Lisa being another one. I have met these three people in San Antonio and if I am ever in this situation I will be calling these people. They are very open to sharing their experience of the procedure and their top specialist. Great info here we are blessed to have them on this board. I am especially grateful to have met these people. My oncologist and I have had this conversation (knowing I am at a 30% risk of getting brain mets I needed to know how he felt and he told me they had to be treated with WBR!!) I then decided I have to have plan B and be ready to go for second and even third opinions) There are no gamma or cyber centers in my state so it makes sense to me to go where they are masters in this kind of treatments. I hope this gives you food for thought. Hugs, Sandy

[Esther]

From my personal experience with Dr. Black, his reputation for perhaps being the best in the world is well deserved. He gave me a great deal of hope.

He was matter of fact outlining my options and what he recommended for me. If I ever need to have actual neur-surgery, I would want him to be the one to do it.

He is also well versed in "out of the box" thinking, and has some creative techniques for dealing with brain tumors. He is the best.

I'm so glad you are able to consult with him, please update us after you meet with him. I know that he mentioned that WBR should not taken lightly, and should only be given under the right circumstances.

Dear...
I was dx'd with brain mets in Sept. '02. That is just about three and a half years ago.

I have had progression several times. The tumors have been throughout my brain from frontal, temporal, occipital, cerrebellum etc etc. I live with survivor guilt for 'doing so well' with this dx....

This is not the death sentence I thought/feared at initial diagnosis. Yet, I have put my 'affairs in order'...with updates a number of times, now! Hope this, along with the other posts, gives you another view on your current dx.

Here is my history: ( you can skip down to 9-2002 if you want)

12-1999: Age 50, Dx'd Invasive Ductal & Inflammatory. Two tumors, upper and lower inside quadrants R/breast.

1-2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb - 4rnds A/C, no rads (my choice & no medical ins.)

7-2002: Dx'd mediastinal node/s mets, (surgical biopsy), 'spot' on lung and pelvis. Arimidex briefly.

9-2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

11-2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

3-2003: Progression of brain mets. 14 new lesions visable. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach. Treat in small batches with two more SRS, two CyberKnife procedures through 5-2004. NED in body.

3-2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) Again 'watch and wait' approach until...

8-2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

9-28-2005: Following 2 rnds, MRi shows response of nearly 50% shrinkage in many brain mets, including brainstem/pons. Dizziness gone.

11-28-2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.


12-19-2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable.

1-26-2006: MRi shows all stable. Will continue chemo combo.

Oh thank you! Yes, the other tumors showed up on the mri/ so they are there like "cherries". I have got alot of pressure for wbr. Do you thomk Dr.Black can help? The reson being that there are two stll in the cerebellum and other (Largest) on the left front and the rest are small. The rad. onc. here said +oh no, too many, and you will "berry pick" forever, have to have frequent mris and there are parts of brain that wiull be "uncovered". And I read between the lines: "You will be dead in 6 months anyway accordong to the clinical picture"/ My neuosurgeon and onc call dr. black and he :agreed" they said but I want to talk to him myself. I thnk I am having to fight for this option/ I am registered but I can't thnk straight right now. Just had brain srgury.

[Lisa]

The idea of brain mets used to really frighten me. Until I got them. I had between 7 and 20 small mets all over my brain. Too many for cyberknife; had to do WBR. What an easy process! That was one and one-half years ago. Lasting side effects have included very little hair re-growth and definite problems with memory issues. (I can now empathize with my Dad's Alzheimer's.)

Get past your fear. And have a wonderful meeting with Dr. Black.

Love and light,

Lisa

[StephN]

Hi Lisa -
I have never understood how there are "between 7 and 20 mets" unless this was a combination of scans and the 20 resulted from a finer scan??

Either you have one number or the other. And there is a lot of difference between the two.
Just curious - if you can clarify?

[Lisa]

From my understanding and looking at the films, there were 7 (if I remember correctly) mets that were obviously lesions. There were also several other tiny, tiny white dots that were ASSUMED to be mets. And the feeling was that if these showed up, there was a good chance that there were even more.


Make sense?

Love and light,

Lisa