brain mets, please help with realistic pep talk. wha

I wrote in a thread a few days ago. to update: they found a bunch of brain mets on an mri. what set me is a pulling or a tic in my lip which heralded a brainstem tumor that needed to be operated on right away. I got an opinion on wbr and we drove to L>A. cedars'sanai fron the sf. bay area. I was very tired from surgery and decadron and we got all of 10 minutes there. No change in his recommedations for wbr which they suggest here from looking at my mri which is really' 'terrible' though no one will say it. Is there any hope for me? I am ready to do wbr and maybe get another opinion from ucsf whle I'm doing it. what about drugs that cross the bbb? I wnated to refuse wbr but I have been told that there are "too many" and that we should clean up the brain and then do sterotactic if neccessary. Slso he said that stereotactic will be too much radiation. Okay, where do i begin? The rad. onc does not seen to hold out alot of hope she goes by the book. But I want to think a liittle outside the box, what do I have to lose? She gave me the option of doing nothing which makes me think it it not really worth it. She says I will lose my hair (so what) feel sick, weak, can;t go in the sun, and stetch 3 months into 6. What's the point? I am very down with this diagnosis.

[aquinis2000]

Hi, I Sure Am Sorry To Hear About Your Mets. Maybe Some Help To You You Will Find Posted On Page 2 Of This Forum A Post Entitled "which Chemo Does Cross The Blood Brain Barrier(b.b.b.)" And On Page 3 A Post Entitled "suggestions For Women Diagnosed With Brain Mets" And On Page 5 , One Entitled "another Inductee Into The Brain Mets Club" These People Who Have Posted Are Either Those With Brain Mets , Or Those That Know A Great Deal About Them And There Treatment. I Know That You Will Find A Ton Of Information There, That Will Empower You And Give You Great Hope. Good Luck Aquinis

[StephN]

So sorry to hear that you had a rough day going down for the consult.
Never give up hope, even if your rad onc is a bit on the conservative side.
Push them a little. You have nothing to lose and could gain even more time.

There are a couple of trials you could qualify for.
One is with Lapatinib/tykerb that member Nicola is taking.
Another is the Allos drug that Al's wife Linda used with her whole brain radiation.
There are some links to these trials in this web site - or call Joe and Chris, who created this site, they are very approachable and helpful.

Know you are tired and discouraged, but there are some trailblazing women here who will answer your post.

[al from Canada]

It is very disheartning to see these MRI's esp. when there are multiple mets.
My wife, Linda has just finished the ALLOS trial with WBR and I can't say enough (so far) in suport of it. They have very promising results in their previous trials in BC patients. As well, one of our members, Patty Z, is experiencing remarkable results with the Lapatinib / tremodar trial.

This is all a matter of personal choice but the message that rings true on this site: brain mets is NOT a death sentance. Research has shown that just staying on herceptin after your mets treatment will also work in your favour.

Good luck,
Al

[Lolly]

You sound very down and no wonder, brain mets diagnosis knocks the stuffing out of anyone, but there are as Steph says some trailblazing women here who will be answering your post soon with much encouragement.

It seems that most have opted for WBR, followed by Sterotactic to clean up problem areas, so I don't understand why your onc thinks that would entail "too much" radiation as it seems to be standard protocol.
Patty Z who posts here had multiple lesions, I think 17, and has refused WBR choosing instead to spot treat the largest ones with Sterotactic, and is now being treated with a combination of Xeloda and Temodor(?) by her onc as these have shown evidence of crossing the BBB. I hope she answers with her experiences.
As Steph says, don't give up hope, but you may have to be firm about wanting to pursue options...
We're here for you.

<3 Lolly

[Lisa]

As soon as I heard I had bc metastasis, I was terrifed that they might spread to the brain. Which they did after about a year. So, having to face reality, I lost my fear and jumped into 21 days of WBR. I had 7 definite brain lesions and possibly up to 20. I really wanted Cyberknife, but was told there were too many and there were probably more the MRI couldn't see. The radiation was really a breeze. Later side effects included: very slow hair regrowth, tiredness and the biggie, a mental "meltdown." Much like Alzheimer's, I can't remember words, lose everything from my keys to my wallet, can't type very good anymore, and lousy short term memory. My treatment was summer of 2004 and so far no more brain mets, although the bone, liver and lymph nodes keep coming back.

No fear. Just fight.

Love and light,

Lisa

thank you so much. this stuff is really scarey. the rad, onc called today and wants to get started tomorrow with wbr, this is all so fast. My feet are starting to swell with the decadron and my neck looks like Barry Bond's. Im calling the onc. tomorrow morning about temador and the other drug and weaning off decadron (2 mg.2x day), i am disappointed that I went all the way to LA for 10 minutes I expected at LEAST he would be encouraging but I have not gotten that from a doctor and I don't know as I ever will. the mri was awful for me and my husband. He was under the inpression that they were lkie freckles but I knew better. thank you for encouragemnt.

[Esther]

I'm sorry the situation seems so hard to bear right now. But you do have some treatment options. WBR is a viable option and SRS can be a subsequent step.

Others have mentioned clinical trials, like Lapitinib, all good issues to check into. Take it one step at a time...it won't seem quite as bad that way.

Throw out the statistics, they're out of date and don't apply to you! 2 years ago, I was told my liver was shutting down from liver mets, and that with treatment, the best I could hope for was a year.

It's now 2 years later, and I'm here, feeling great, being active and just plain old enjoying life. My liver and bone mets have been NED for over a year now, maintained on just Herceptin. And I intend to be here for another 40 years.

One step at a time...you can do this! We'll all be here cheering you on.

If you feel up to it check out NCBI and search under omega three and brain related subjects, and similar for flavanoids.

I have seen some trial suggesting synergistic effects with treatment etc.

A significnat portion of the brain is made up of fats.

Fats EPA and DHA are essential to developement and have been repored as assisting in "rebuilding" in one book I read on mental health re fats. ( Oily fish and fish oil up - doses up to be 10g a day seem to reported as "safe" - see linus Pauling for side effects blood thinning etc - fats in breast tissue wil take three to four months to reflect dietary changes in fats, and up to years for other fatty adipose tissues). As part of this it is important to look at balancing your omega threes and sixes. see posts on articles of interest the importance of omega 3 and 6 to BC.


You must of course talk to you advisers about dietary changes etc.

I hope all goes better than expected.

RB

Hello,
So much depends on the agressiveness of you particular bc, time to recurrance from orig. dx, any other mets ie. controlled, number, non-responding, and overall health and being symptomatic. Then there are the unknowns.

In 2002, after my initial two brain mets were treated with Stereotactic rads, the six month MRI showed an additional 14 brain mets. Those I had treated in small batches over the course of a little more than a year. All done with focalized rads. I am one who has continued to refuse WBR.

At this juncture, I have recurrance of multiple brain mets dx'd in Sept. In the past I was nearly asymptomatic, which was one of the MAIN reasons I was able to deal with the mets this way. These new mets had me dizzy 24/7 with 'tipping over' events.

However, I have been told that any more focalized is not an option because of the overlapping multiple rads. And that WBR is (was) the only option left. But even that would come with even higher risk of permanent damage now....

My onc and I came up with a chemo combo tailored just for me because of the research I've done and shown him. I started Temodar/Xeloda in Sept. and within days I thought my dizziness was lessening. I was right. So, for the past five months I've continued on this combo. My Mri's showed (twice) nearly 50% shrinkage and the last showed stable with no new lesions.

The most problematic mets were on my brainstem/pons and cerrebellum. I've had recurrance in both places, but now they are very very small and stable. But, I really don't know how long I will continue to respond to this tx.

My next step would be to try for the Lapatinib trial.


That said:
If you are symptomatic, as you say, there is reason to act quickly to avoid permanent damage. I would insist on RSR13 efaproxiral in conjunction with the WBR. There have also been studies done using Temodar in smaller doses during the course of WBR. The longer courses using smaller daily fractions are more to my 'liking' if it were me...

Decadron is the 'drug from hell' we all agree, yet it does it's job.... trust me when I say we empathize with you!!

I don't want to over tax you with info, so will end now. Hope this has also given you some supportive info. If more questions, just ask.

pattyz

thans
ks. I talked to my onc. about RSR Efaproxiral, and he said "good". But how do I do I get it outside a study? I need it now as I have started wbr . what are they thinkinking?

My sentiments exactly. I'd just kick and scream and hope someone heard me.........

Here is some info on where you might turn to reach a person who could possibly help: (this is directly for the trial, but Allos is the company that makes it.)

To find the ENRICH trial site closest to you, contact Allos Therapeutics at:


Email:. MedicalAffairs@allos.com
Vist Website: www.allos.com/Enrich

Or call 720-540-5246

Or call the National Breast Cancer Coalition Fund at:

1-800-622-2838


pattyz