Gamma Knife A Success but more brain mets
 

Things went fairly well with my fifth Gamma Knife treatment on Monday. One area that they thought was necrosis was in fact necrosis so that is good news. They identified another lesion behind some of the necrotic stuff so they ended up zapping three small lesions. They also found five tiny specs that looked suspicious and zapped them anyway since I was in the machine. This is what has me worried now. Why do I keep getting these brain mets and how can we stop them? I'm going to meet with an onc at UCSF soon to get a second opinion and see what clinical trials may be out there. If any of you have any ideas, I'd love to hear them. I absolutely DO NOT want to do WBR at this point. That is my absolute LAST resort. I'd rather try drugs, targeted therapies, immunotherapies, anything else really. So if you've got any ideas -bring em on. I'm stable in the head for now and have time to plan a new strategy. Thank you in advance for all of the support and love. I really gain so much strength from this group and don't know what I'd do without it.

Re: Gamma Knife A Success but more brain mets
 

I don't have any great ideas Courtney, but I wanted to say I have my fingers crossed for you. Hang in there and keep putting one foot in front of the other. Keep searching for answers and help.

Re: Gamma Knife A Success but more brain mets
 

Hi dear Courtney. Sending lots and lots of good thoughts your way and hoping this last round of treatment will do it. You have been smashing these buggers for a while now and I think that will be it. They are not coming back....I have had a little word with the big guy...girl....creator of the universe. Love Lois

Re: Gamma Knife A Success but more brain mets
 

Temodor is an oral chemo that crosses the blood brain barrier. It is commonly used for brain cancer but Patty Z used it and it worked well for her. Can you do the intracranial Herceptin with Tykerb as well? The two together may do a good job. I personally know nothing about brain mets but have a good memory of what's gone on on the board over the last 6+ years. I am always cheering for you out here on the east coast.

Re: Gamma Knife A Success but more brain mets
 

Glad to hear your update, Courtney.

Cheering for you also.

Amelia

Re: Gamma Knife A Success but more brain mets
 

Courtney, My prayers are with you. What a journey you have been through. Sadly I don't have any suggestions or ideas specifically for the brain mets. Have you heard or have your doctors talked about pertuzumab? Its another herceptin/tykerb like antibody for Her-2+ disease. I would love to follow your journey on Caring Bridge if you wouldn't mind. My email address is kristin-ness@uiowa.edu.
Kristin

Re: Gamma Knife A Success but more brain mets
 

I'm so happy they were able to zap even the tiny spots, Courtney. I wish I had some ideas for you. The suggestion of tykerb with the intrathecal herceptin sounds interesting though since tykerb breaks the BBB.

Re: Gamma Knife A Success but more brain mets
 

Courtney, Gods blessings to you and your family. Please know I will be praying for you!

Re: Gamma Knife A Success but more brain mets
 

Perhaps reach out to Dr. Eric Winer and Nancy Lin at Dana Farber in Boston. They are leading the charge in research to treat brain mets, with specialty in Her2... Dr. Winer is very nice and very approachable. He told me a couple of years ago in San Antonio to call him if I had any questions or needed consultation. You could have your Onc call him, too.

Re: Gamma Knife A Success but more brain mets
 

Courtney
There have been a few on this site that added Temodar which crosses the BBB...also could they add Tykerb back into the mix? Sounds like your team is agressive at treating you, and very thorough, maybe like Brenda suggested, a conference call with Dr Winer....he may have some new answers.
Keeping you in my thoughts and prayers. You are one amazing warrior!

Re: Gamma Knife A Success but more brain mets
 

Courtney,
I think all the suggestions made by the "old timers' sound very doable.
I also want to send a positive thought your way for a successful plan to come your way.
One foot in front of the other :)

Re: Gamma Knife A Success but more brain mets
 

Courtney I have been following your posts with admiration, I agree about the WBR no go. on top of the other options people have mentioned that are there maybe ask to add things like metformin (little side effect) also olive leaf (oleuropein) and boswellia.

Re: Gamma Knife A Success but more brain mets
 

Dear Courtney -
Well, boo. But glad the little new BB's got their due as well.
Seems to me you did take Boswellia a while back, though it is not on your signature.

My best thoughts for NO more seedlings in your dear brain.

Re: Gamma Knife A Success but more brain mets
 

Courtney,

Sorry to hear about the brain mets. I would also suggest that you could try Temodor, Herceptin, and Tykerb together. I agree with your staying away from WBR. Try to keep zapping the mets for as long as possible. Since you have regular scans, the lesions are found when they're very small.

I've been following Caringbridge.

Joan

Re: Gamma Knife A Success but more brain mets
 

Courtney,

Thinking of you and hoping you'll find a successful treatment plan soon.

Love,

Marcia

Re: Gamma Knife A Success but more brain mets
 

Hi Courtney Been thinking about you all the time. What bad luck with the brain mets. I am suffering what they think is Radiation Necrosis from the gamma in March so I have lost right sided use of my arm & leg what a pain it is!! I agree with you on WBR this is a last resort for me also. Hopefully this will be your last session and no more mets. Are you on chemo as well?

You can beat it

Lots of love

Dianex

Re: Gamma Knife A Success but more brain mets
 

Hi,

Brenda has given you good advice. (#9)

GKRS is quite safe. Since it's a very focused radiosurgery, the hidden seeds could sprout because they've never been exposed to the radiation.

I would think that as long as your doctors think it's safe, you can continue to zap any new mets with GKRS or other forms of focused beams.

It does feel kind of 'old' when you keep hearing about new mets. But hang in there. Your doctors (including the 2nd opinion doctors) will figure out the best strategy for you soon.

Sending you good vibes.

Re: Gamma Knife A Success but more brain mets
 

Invasive weed seedlings, that's what they are. It sounds like the gamma knife "pulls" them out one by one, while the Herceptin is the weed killer. I like the idea of strengthening the weed killer, like Joan and Becky suggest. Sorry if that sounds too simple, but I try to frame cancer in terms I can understand. We're not doctors here, but there is an amazing amount of knowledge on this board.
Stage IV CAN become NED.

Re: Gamma Knife A Success but more brain mets
 

Hi Courtney.
I am glad the Gamma zapped all the lesions and you are working to prevent future mets. I like Brenda's suggestion. I just went to see Dr. Ian Krop (a HER2 expert) at Dana Farber ) who works closely with Dr. Winer and Dr. Lin about a clinical trials for necrosis and tumor progression (glad that’s not you). He mentioned there were several new trials coming. It might be worth a phone call. The other person I would consider an email to is Musa Mayer. She manages the BCMets web site http://www.brainmetsbc.org/ and gave me Drs. at Dana Farber and Memorial Sloan who specialize in brain mets. I sent an email at the site mailbox . Wishing that you find the right treatment to keep the mets from coming back.
Love & Hugs,
Kris……..

Re: Gamma Knife A Success but more brain mets
 

Good to know Kris! I may need to know about those trials in the future...