Brain Mets (again)

[Susie]

Hi all,
I need some help in interpretting my brain MRI. I know we have some experts on this site. My history is bc in 5/00 and single lesion 3.5 cm brain met in 10/01 treated with craniotomy, single lesion 8mm in 2003 treated with craniotomy and a single lesion 5mm in 10/05 treated with stereotactic surgery. 10 months later (today) my last lesion has reoccurred. My oncologist is pushing for a third craniotomy and I do not want it. I wanted to get some other patient feedback.

My brain MRI showed "abnormality and enhancement along the ependyma of the frontal horn of the left ventrical. Area of signal abnormal extends into the adjacent white matter and is consistantfor ependymal mets w/ secondary extension to the brain parenchyma. there is no evidence of mass effect. There is no hemorrhage or extra dural collection.

Any information would be helpful. Thanks!

[Lisa]

So sorry this met keeps coming back.

Have you discussed either Gamma Knife or CyberKnife with your onc? It is used for brain mets when the numbers and/or size are not too big. If you discussed this non-invasive technique, do so at once.

Love and light,

Lisa

[Susie]

Hi,
I had stereotactic surgery and the met has reoccured. What is the different types of surgies. Why is one better than the other? What has been working for others? I do not want a craniotomy.

[Mickey]

Gamma knife worked great for me. One zap and the 2 were gone. Unfortunately too many others came up and I ended up with WBR
Mickey

[jojo]

Hi Susie,

Like you, I had had gamma knife last year for one brain met. It disappeared, but grew back again in the same spot. My rad onc told me that about 95% have successful response to GK. I was just part of the 5% unlucky group.

This time, my medical team decided to perform a craniotomy and implant some radiation seeds onto the cavity of my brain. I have never experienced cyperknife before. I just had a brain MRI follow-up, and it was clear.

Have you ever had the seed implantation in your previous cranitomies? Yea, it is invasive, but I think, for the time being, all we have is:
gamma knife, cyper knife, craniotomy, seed implantation... do I miss anything here? So, what else?

I would like to hear from you guys...

Susie, please keep us posted. Sending positive vibes your way!

[madubois63]

Susie - I have no advise to offer as I have never had brain mets, but I just wanted to tell you that I will be praying that you have success with whatever treatment you choose. Good luck and God bless...


..·´¨¨)) -:¦:-
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((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[Susie]

I forgot to add that I also had WBR in 2001. I am very discouraged right now.

[Barbara H.]

Hi Susie,
Go to the trials listes on the site and find this one:
Lapatinib for Metastatic Brain Tumors
Dana-Farber and Others (This was posted by Joe)
If you are unhappy with your options maybe you can look into that trial and also seek another opinion.
Best wishes,
Barbara H.

[Marianne B.]

Hi Susie,
I would strongly recommend you look into the Lapatinib for Metastatic Brain Tumors Clinical Trials at

http://www.cancer.gov/search/ViewClinicalT...&version=Health (http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=398179&version=Health)

There are 3 hospitals participating in Boston, one in Washington DC and one in Chapel Hill NC.
Some in the oncology field are very encouraged by the results they are seeing. It doesn't work for everyone (didn't click for my sister - she ended up with a second craniotomy surgery where 3 separate lesions were removed) but we met a woman for whom the Lapatinib has been working very well to reduce/eliminate lesions. The nice thing about Lapatinib is it's delivered in pill form, and there seem to be few if any side effects.

Are you on Herceptin? That sometimes does a good job at keeping the rest of the body clear, and there's some suspicion that WBR (maybe SRS too) may make the blood/brain barrier more porous, possibly allowing Herceptin to cross into the brain to get at the Her2 cells. The Herceptin molecule is too large to permeate a brain that has not been radiated. For the Lapatinib trial, you must be off Herceptin for at least 2 weeks before starting the trial. My understanding is that Lapatinib works in a similar way to Herceptin, but the Lapatinib(smaller molecule) can cross the blood/brain barrier, prior radiation or not.

Good luck and God's grace be with you - I wish you the very best.
Marianne

[Susie]

I take Herceptin once every 3 weeks and have been NED elsewhere in my body (so far). Thanks for the link. I did e-mail the Dr. in Boston for more information. Is this drug used instead of or in addition to stereo/gamma/ or craniotomy?

[Marianne B.]

Susie,
In the case of my sister, she had whole brain radiation to treat 3 smaller remaining lesions after a larger (~3cm x 3cm) was removed(Oct) in her first craniotomy. The WBR almost knocked the smaller lesions out, but then they slowly started to come back. That was when(Mar-Apr) they put her on the Lapatinib trial, hoping that it would stop the Her2 growth activity. Her oncologist said that we all hoped that it would help my sister, but if it didn't, there was always sterotactic surgery, &/or another craniotomy. Two months later the lesions were still growing and she was having headaches, so they took her off the trial. She then had a second craniotomy(May) to remove the 3 lesions. After that she had stereotactic radiation to the 3 cavities.
She had an MRI 8/1 and her neuro-oncologist is happy with what she sees - NED. The rest of my sister's body is clear -- she's on Herceptin every 3 weeks.

I think the doctors' recommendations depend on whether the disease is progressing, whether it's shown up anywhere else in the body, and how large the area of concern (lesion) is. Your MRI notes that while there's "abnormality and enhancement..." there's also "no evidence of mass effect." That sounds to me like it could be an opportune time to see if the Lapatinib can help you.

I hope you have great results with whatever approach you go with.

Marianne

[Susie]

Hi,
I did make contact with Danan Farber but being it is summer people are out of the office. I am definately going to pursue it soon as I get on a treatment plan. Right now I am in limbo. Does your sister have bc that has only gone to her brain or has it traveled else where? I am told that my case is very unusual. I am NED elsewhere (as far as I know) but had a CAT on Thursday and a PET on Monday. I speak to the stereotactic surgeon on Tuesday. I feel as if I have been punched. This is the 4th time I have had a single lesion brain met. Thanks for your encouragement.

[Marianne B.]

Hi Susie,

My sister (age 48) was diagnosed with stage 2A Her@ bc in June '03, had a lumpectomy in July, was almost finished with the Adriamycin/Cytoxin phase 1 of chemo when we found it had recurred in her breast. She then had a mastectomy in Feb'04, and started on Herceptin. She had radiation to her right chest wall area. She had a great summer last year, but began experiencing headaches in Sept. An MRI showed 4 mets to the brain, and she had a craniotomy for the largest one mid Oct. She had whole brain radiation in Nov., which knocked the remaining 3 small lesions down, but not out altogether -- that is where my earlier post picks up. She, like you, has had NED anywhere else beyond the breast and brain. While the past two years have been very very difficult, she has recovered well each time, and yeserday we all attended a family wedding. She looks like Mia Farrow in her short-hair phase, and with all she's been through, her memory is still better than mine on some things (and I'm 6 years older).

The other young woman (~age 28) I mentioned who is on the lapatinib trial was first diagnosed with her2 bc about 7 years ago -- was treated with lumpectomy, chemo and radiation, and then discovered mets to the brain last year. She had a craniotomy, radiation, and then began the Lapatinib trial in Nov'04. She is doing very well, and has no mets elsewhere.

Susie, take heart, and have hope.

Blessings to you.
Marianne