BC with brain mets

Does anyone else have bc with brain mets only? I need some encouragement. I am feeling a bit down since Mary has died. I keep thinking it will go to my spine. I had to take Xanax because I have such anxiety. Every time I have an ache I think I am going to die. Any good stories? I am familar with Christine's story which is great!


Diagnosed at age 31
ACT
single lesion Brain Mets 3cm 10/01
single lesion Brain Met 7 mm 10/02
single lesion brain met 5 mm 10/04
Lupron/Femara
herceptin every three weeks and brain MRI's every three months

Your recurrences and Mary's are very different. Take a deep breath.
Many women, several from this site have had only brain mets and, like Christine, are doing great years down the road.

By the time Mary received her initial brain MRI, her mets were "too numerous to count." So even after WBR, although they were shrinking, apparently one slipped down her spine. It CAN happen, but it is rare. Mary would be the first to tell you that she was different! Her life was different--in bad and good ways.

How have your mets been treated? I assume with Cyberknife or GammaKnife since they've appeared one at a time. SURELY you've had some form of radiation, but if you mentioned it, I missed it.

Let us know.

Love and light to you, Annemarie, and Mary,

Lisa

Lisa,
Thank you so much for your reassurance. I have been very depressed lately. I guess our grief comes in waves. My first two brain mets were craniotomies since they were both on the surface of the near skull and easy to get too and the last one was stereo tactic. I have had Rt to the brain and I have taken Temodar (I took for a year in 2003). I go for my next three month MRI the first week of March. I think that is what is weighing over me and causing the depression. Did Mary have mets anywhere else? I did have a spinal tap (it hurt like hell) a few months ago after the last brain met due to it's location. It was negative.

god bless you both your strenght is inspiring!!!!!!

Mary's started with breast cancer, then spread to her bones. It probably spread to her brain around the same time, but she wasn't tested early enough.

For me, after having recurrences to the liver, brain, bones and lymph nodes, I actually have a morbib sense of anticipation for my scans. These past ones were great, (my second set since WBR) but (and there's always a but) there might be a new spot on my liver. We'll do a follow up CT in just a couple of weeks.

Now, about that depression. Are you taking any kind of anti-depressant?
If not, certainly consider it. I take Lexapro daily and it has give me no side effect that I'm aware of. It really helps smooth out those rough, scary days. Xanax can be great when needed. Just be careful not to need it too much.

And you've already been through so much. I can't imagine the spinal tap! And you've done radiation, and chemo. You're tougher than you think!!

And you can help me out. Tell me what you know about Temodor. I don't know much and want to.

Keep us posted. And feel free to e-mail me directly at lisalowe@qwest.net.

Love and light,

Lisa

Lisa,
Thanks again for your posts. I am taking a antidepressant. I only take the Xanax when I feel anxiety which mostly at night while sleeping. Since being diagnosed with bc I don't think I have slept a normal night. But I am still her and still kicking!

Regarding the Temodar it is an oral chemo with few s/e if taken with Zofran. My neurosurgeon said the data has show significan results with primary brain tumors but only extended life about 90 for brain mets. I took it for a year and I went off it for 6 weeks and then continued and then I got a 7mm single lesion tumor (second time). Now my Dr. said the 6 wks. may have been significant. He can only call me a failure pt. if I had stayed on schedule. It is so expensive. It is $2k a month. I have a 90/10 plan. My Dr. would like to put me back on but these medical bills even with insurance are out rageous. I just bought a lymphodema pump and it was $6500 again I pay 10%. I know it is my life but it does add up.

Annemarie,

I didn't completely understand about the Temodor. So it DOES penetrate the blood brain barrier. And the results with brain mets? I didn't catch what you were saying. But I don't doubt it. I've had a completely ditzy day!

As for fear and sleeping, let me tell you what happened to me early on in the BC journey. I awoke one morning in that not-quite-awake mode yet. I heard a voice say, "The sky is falling." Then I heard a second voice say
"...said Chicken Little."

Well that surely brought me fully awake! After realizing I didn't remember the Chicken LIttle story, I hurried downstairs to the computer and looked it up. If you remember, an acorn falls on Chicken Little's head and he thinks the sky is falling. He runs to tell his friends one by one. And they head for the King to warn him. But before they get there, they come across Foxy Loxy who "invites" the group to rest at his home. They accept and he eats them all.

I figured the message I was given that morning is that it's not the sky that will kill you, it's the FEAR of the sky falling. And since that time, I've often reminded myself that fear is my enemy, not necessarily the cancer.

Sleep tight.

Love and light,

Lisa

Hi Lisa,
The Temodar does cross the BBB. It is used mostly in pts. with primary tumors. My neurosurgeon told me before Temodar his brain cancer pts. died on average w/in 6 months. Now he has several out two years (since the drug was introduced). Temodar when used for brain mets only extended the pts. life on average three months. Who knows maybe I would have had more difficulty hadn't I taken it. My Dr. has sugguested I go back on it. I know there is some data or on going trials of pts. receiving Temodar with WBR which at first they thought would be too toxic.