Brain Mets

[Cathy Long]

Hi we are off to neuro oncs tomorrow for hopefully treatment with Gamma Knife after WBR.
I would appreciate any info on plans of care you have for your brain mets eg 2 monthly scans we will use you ladies as example. Here in UK WBR is "gold star treatment" for brain mets we are now going to tell him what we want! may go down like led balloon.
thanks for help Cathy

[pattyz]

Cathy,
My follow-up MRI's are done every two months. But that's because I haven't done the WBR. The 'standard', I believe, is every three mos.

there are so many good studies done that show the huge benefit of focalized rads of some kind in addition to WBR that it is unconscionable that this would not be STANDARD treatment.

We'll be right behind you! Hang tough!
hugs,
pattyz

[Patty D]

Good luck! I just had the cybernife procedure done and am waiting on results of that. I was dx with brain mets last summer and went through WBR-Had 15 treatments and it had oretty good results. Hopefully the cyberknife took care of the remaining. God Bless and keep us posted.

[Sue]

Hi - I was wondering if I could ask a question regarding my best friend. She has had stage 1v breast cancer and in nov they found liver mets, she was put on navalbine/herceptin and the tumors have shrunk wonderfully, she started having headaches with nausea and vomiting, an mri showed brain mets, how is it possible to have the liver mets be shrinking and the brain mets appearing. She was on taxol and has mild shock reactions with it so they are scared to try that again. Could it be that the navelbine just isn't working for her anymore? I really hope to god she could get thru this, is there any hope?
Thanks,
Sue

[Lisa]

I'm so sorry for your friend. But there is certainly hope. SEveral women on this site have been treated for brain mets through a number of treatment types and are doing good.

Unfortunately, the brain has what is known as a blood-brain barrier. Few, if any, chemotherapy agents can penetrate this. So while the Navelbine was doing a number on her liver mets, the brain mets developed separately. There is hope that future chemos will be able to penetrate this barrier, but for now radiology is her best hope.

Love and light,

Lisa

[Patty D]

Sue- please tell your friend to hold on to hope- as Lisa explained there is the barrier thing with herceptin. It works wonders everywhere else but the brain. There are treatments for brain mets- such as WBR (whole brain radiation) gamma knife and cyberknife. Any one of these may be appropriate for your friend depending on the particulars. The thing to keep in mind is there are successful treatments> Several gals on this site including myself have been treated for multiple brain tumors with good results. God Bless and I will pray for you and your friend. Keep us posted.

[Sue]

Thanks you so much for your responses. I didn't realize herceptin didn't cross the brain. She has a hugh tumor in the venticle that is causing all the problems, a neuro sugreon might have to operate to relieve the pressure, along with radiation. I really appreciate your help in answering my question, my heart goes out to all of you. thank you

[Joe]

Here is an interesting paper which came out of the latest ASCO meeting in New Orleans.
Joe

[Annemarie]

I was wondering how many woman out there have bc and have had brain mets and no where else. My oncologist tells me I am his only pt.. I am her2+++. I was treated with radiation 19 months ago and I am NED. I asked the Dr. about going on Herceptin but he says w/o active metastic disease he would have to enter me into a trial where they double bling the Dr. and the patient. I would love to hear any feed back especially success stories. Also did WBR make you loose your period?

[pattyz]

AnneMarie,

Four and a half yrs ago, I was dx'd with Stage IIIb Inflammatory and Invasive bc.

Just about two yrs ago, I was dx'd with mets to a mediastinal node. In chest, next to my aorta. Scans showed a 'spot' on my lung, a 'spot' on my pelvis. Only the node was confirmed with surgical biopsy. the 'spots' were merely suspicious looking, but unconfirmed.

Two months later, I was dx'd with brain mets through an MRI because of excessive dizziness and a few episodes of peripheral vision lights, left eye only.

Because I have consistently refused WBR, five seperate focalized radiation procedures have been done, treating a total of 16 brain mets over a period of 19 months. The last in early March of this year.

Throughout this time, I have remained NED in body. Chemo for two months, (Navelbine/Hercepin as I am Her2+++), for the remains of the node in chest was done and subsequent scans have showed nothing in any part of my body.

So, I have always felt very close to what you are asking: brain mets only. Just the one node confirmed in all this time.

If your scans etc show you to be NED, I would hold off on the Herceptin as long as you can. It won't help your brain mets. It does not have a very good response rate taken alone, anyway.

As to your other question re: no periods, I haven't heard or read anything like that, but I suppose ANYTHING is possible when dealing with the brain and possible overlap of radiation to pituitary (?) gland. I'll be interested to see if anyone has better information on this for you.

hugs,
pattyz




I was wondering how many woman out there have bc and have had brain mets and no where else. My oncologist tells me I am his only pt.. I am her2+++. I was treated with radiation 19 months ago and I am NED. I asked the Dr. about going on Herceptin but he says w/o active metastic disease he would have to enter me into a trial where they double bling the Dr. and the patient. I would love to hear any feed back especially success stories. Also did WBR make you loose your period?

[Annemarie]

Thank you for your post. I have had my period off and on. I am thinking the same thinkg with the RT to the brain. I also took Temodar for over a year. My neuro told me that for brain mets it seems to extend the life for 2 mos. but for brain cancer he is seeing miracles. He said average a person lived was 7 mos. and now he has pts. coming to him after 2 yrs. (who are on Temodar).