Brain Mets
 

A little over 3 weeks ago my wife (age 49) thought she was having a stroke and was rushed to the hospital only to find out she was having a seizure and had several brain mets. We have a 14 year old daughter who was also the only one with her at the time. This has been very traumatic for us. She had Her2+ breast cancer 3 years ago. She had a lumpectemy, the tumor was very small (stage 1), it had not gone to the lymph nodes. She followed up with chemo, Herceptin, and radiation. I never dreamed this would come back--but little did I know. It took me a week to get myself together and then started searching the web. Most of what I found was dismal to say the least. I am happy to have found this site as it has given me more hope. We live in Sebastapol, CA. She has just completed 15 days of WBRT. Her local oncologist has pretty much said not much else can be done. I am taking her to MD Anderson in Houston next week, and then coming back here and taking her to UCSF (not until 4-12), and then Stanford the day after that. Does anybody have an opinion on which is better? She has about 10 mets. Most small, 2 or 3 larger ones--the largest being 2.9cm. I am reading about the gamma knife. I get mixed messages. I hear that it can only be used if a few tumors exist, and then I hear that it can be used for 15 or more. Not sure what to believe. Her oncologist also told us chemo wasn't really an option but then I read that it is. Does anyone have any thoughts? I appreciate any and all feedback and I thank you in advance for it. Thsi site has given me new hope and optimism at a very difficult time. Thanks--Rick

Re: Brain Mets
 

HI Rick,

Well, that was not news you were expecting or wanting to hear. But the story is not necessarily as grim as has been painted for you so far.

There are many on this site who have been dealing well with brain mets, some for many years. There are options and you do need to get some input from top docs in that area of expertise.

All of the places you mention would be good choices for 2nd opinions. Several people have been treated at UCSF which is closest for you and is a major cancer center. If you are seeking MORE options, Dr. Keith Black at (I think at Cedars in LA area) is a top doc in this field.

You indicated that your wife has just completed 15 days of WBRT. Maybe I misread. But if I read that right, you would consider her "treated", and be watchful for recurrence but not do any additional "zapping" unless/until that happens. If I misread and she has NOT been treated, that's a lot of mets for targeted radiation but not necessarily out of the question - it's been done.

Having WBRT would likely preclude getting that (WBRT) again, if there is a recurrence. However, cyberknife or gamma knife or IMRT to target specific mets could still be an option. It's not necessarily a "this was the only chance" situation.

As far as systemic therapy, the issue is that herceptin and other large-molecule drugs do not pass the blood-brain barrier so are not so effective against brain mets. However Tykerb (another Her2 targeted therapy) does cross the BBB and can be very effective. It is usually given in combination with Xeloda. Brenda (posts her as hutchibk) has had good success with Tykerb/Xeloda and then also Herceptin in conjunction with IMRT targeted radiation to control brain mets for several years. There are also other chemos that can be effective.

I'm not one of the "experts" on board here, but as an interested observer I know that there are options.

Keep the faith

Re: Brain Mets
 

Re: Brain Mets
 

Rick,
I am very sorry to hear about your wife. Im going to share with you what I've learned in the last two months in the same journey that I am on. I found out I had a brain met on my brain stem 2.0cm; fairly large. My symptons were numb leg and then started seeing double vision. Since then, I've had two Gamma Knife treatments and have seen a 30% shrinkage in volume. So I am hopeful. I am feeling a little bit better everyday with some improvement in my vision.
With regard to systematic treatment, my oncolgist had 3 options;
1. wait and watch as they have not found cancer anywhere besides the one brain met.
2. Tykerb + Femara (already on)
3. Tykerb + Xeloda

She’s thinking #2 but wants to wait until I get a 2nd opinion.

Chrisy’s right Tykerb crosses the brain blood barrier. I’m not 100% sure but I think Xeloda does too.

I am going for a 2nd opinion on April 4th at Memorial Sloan Kettering (NY) and meeting with an Oncologist who deals a lot with brain mets. I sent an email to Musa at the brainmetssbc website and she gave me a few names. My oncologist helped me decide who to see.

2011 seems to be an epidemic of brain mets on this site... There's a lot of new posts. There's also a lot of ladies who are successfully dealing with this. (founder-Christine Druher,StephN Courtney L, Kavvy, Hutchibk (Brenda), Kiwigirl, Joan M, Virginia, Barbara H., Pam and others that I probably forgot about). They are all giving me hope and I hope they do for you and your wife.

A few things that were really a big help to me were:
- reading the Brain Mets threads on this site. I just did a search and learned a ton.
- http://www.brainmetsbc.org/ - Just dedicated to bc brain mets. Karla told me about this. That’s where I found Drs for a 2nd opinion. I send an email to Musa and she gave me two top docs in NY and Boston that were close to where I live. Although Chrisy mentioned Dr. Keith Black whos the rock star for Brain stuff.
- http://mbcnetwork.org/ - Metastatic Breast Cancer Network. Great resource.
Sending your wife and family hugs, prayers and love,
Kris......

Re: Brain Mets
 

My heart goes out to you and your family. I can not offer any brain met advice except research and don't give up. I am 47 and have a 13 year old, so am very close to your wife's situation. I know it must be a shock and can empathize with the fear and worry you must have. Certainly by three years out you must have been feeling very comfortable and then this happens. As you can see on this site many others are dealing with all kinds of metastasis and doing very well. You have come to the right place, you will receive lots of advice, care and support here! My prayers for peace for you.
Elizabeth

Re: Brain Mets
 

My daughter is to receive LINAC (SRS) next month. She has several brain mets and they are zapping them in 2 separate sessions. She had WBR in June of 2010 but they didn't shrink all that much and there has been a bit of progression lately thus the SRS surgery. I'd advise getting 2nd opinions for future treatment and what to treat with as well. Best of luck to your wife.
Joyce

Re: Brain Mets
 

As far as true chemotherapies are concerned, Xeloda and Temodar cross the blood brain barrier.

Tykerb (a targeted Her2 therapy) does too but it is an immunotherapy.

Re: Brain Mets
 

Has she had a pet/ct? Is there any other areas of "interest"? I think springing into action and seeking additional opinions is good. I like the idea of some kind of therapy in addition to the rads. I am also (like Chrisy) unclear on your post but it seems that your wife has been treated with the WBRT, so at this point it is good to get a game plan moving forward. Stay focused and don't loose faith!!

Re: Brain Mets
 

Rick,

It seems that your wife has already started the treatment process with WBR, if I'm reading your post correctly. I would agree on a second opinion for follow up, as the WBR was just the beginning of the process to keep your wife's brain mets under control.

As mentioned, several chemo drugs do cross the BBB like Xeloda and Temodar, as well as the targeted antibody Tykerb (similar to Herceptin), which attacks HER2+ breast cancer via a pathway different from Herceptin.

Your wife can be given a combination of these drugs, and I would also ask the doctors whether she can take Herceptin again and possibly a combination of Herceptin and Tykerb. Studies have shown that the combination works well, even though it seems that some doctors are reluctant to give these two drugs together. So, the WBR is not the only treatment for brain mets.

It's also important to find out whether you wife has mets anywhere else, as this will affect a doctor's choice of drugs and drug combinations.

As Chrissy mentioned, if all the mets do not go away or if some of them come back after the WBR, your wife has other options with targeted radiation treatments to zap individual mets.

I had one brain met. It was 2.6 cm and treated with surgery and then 5 shots of IMRT. That was in October 2008.

I'm wishing your wife success in her treatments. Keep the faith. There are other options.

Joan

Re: Brain Mets
 

A kind thoughtful radiation oncologist at UCSF who specializes in brain mets from breast cancer is Penny Sneed, MD

A Stanford neurosurgeon developed the cyberknife and they seem to still be in the forefront with its use so your plan to visit both facilities after MDA seems a good one.

In southern California , Keith Black, has a lot of experience and it seems several of the ladies here have been treated by him, but with so much expertise in No. California, I wouldn't think it likely you really would have to look further.