Gamma Knife A Success but more brain mets

[CourtneyL]

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.

[ElaineM]

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.

[LoisLane]

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

[Becky]

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.

[schoolteacher]

Glad to hear your update, Courtney.

Cheering for you also.

Amelia

[KristinSchwick]

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

[DeenaH]

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.

[Pray]

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

[hutchibk]

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.

[Sheila]

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!

[Emelie B]

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 :)

[fullofbeans]

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.

[StephN]

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.

[Joan M]

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

[bejuce]

Courtney,

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

Love,

Marcia

[Dianedack]

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

[Jackie07]

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.

[MJo]

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.

[krisvell]

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/ (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……..

[hutchibk]

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

[joyce lutz]

Hi Courtney - I wish I had an answer for you too! Keep zapping those buggers. I wish I knew where to have Pam go. I don't understand why she is having so much edema and has to be on decadron when some like yourself have had several brain mets zapped and don't need to be on it at all. She is experiencing more side effects and they have had to increase the decadron dose back up to 8 mg/day <sigh> Just makes me feel so bad for her. MEanwhile I wish you all the best and hope someone can figure out why all these keep popping up for you. One thing I note is that Pam is having LINAC SRS and you are having Gamma Knife - wonder if that makes the difference in them popping up??? My best to you as always
Joyce

[GracePang]

Hi Courtney,
I am actully the similar situation as yours. I keeping getting new tumors, even after WBR done last August. I had Gamma knife in Jan this year, zapped 3 tumors; Another Gamma knife last Thursday zapped 12 tumors (all at once).

I am currently on Xeloda & Tykerb; my onc will discuss with me about the drug plan in the following weeks. I am thinking to as for adding Herceptin and C into the regime, but not sure he would agree.

Would love to know your next plan/drug plan.

Love,
Grace

[CourtneyL]

Thank you all SO SO much for the support and suggestions. I've actually seen Dr. Krop at Dana Farber for a consult in the past so I'm going to reach out to him for some advice. I'm setting up an appointment with Dr. Melisko at UCSF and she mentioned to me that they will be starting a Neratinib trial in the next 4-6 months. This HER2 targeted drug, as many of you know, is small and is thought to also cross the BBB like Tykerb. Another option I am considering that Kim (Radiant) mentioned is DCA - a treatment available in Canada. She gave me a site of a holistic doctor in Vancouver who is seeing some patient success on it. EllieF has also mentione Allostim which is available for compassionate use in Thailand. Decisions decisions. At least I know I have options - and that gives me hope. And without hope, there is nothing. I feel blessed, if not a bit overwhelmed, but I know I will continue to be okay. Thank you all for your love and support. I feel that I am not alone in this journey thanks to you all.

[hutchibk]

Love me a solutions oriented girl! Best of luck in pursuing the next option... I know you will find the best one for you! Keep us in the loop, as we know you will. Love, light and prayers to keep you safe along this path my friend!

[krisvell]

Hi Courtney;
Dr. Krop mentioned the Neratinib trial should start in 4 -6 weeks. It might be sooner than you think. Told me that I had to have 1cm of tumor to track to qualify.
Kris....

[MJo]

Wow, you DO have options to consider. I was just reading about the promising early clinical trials for a cancer-fighting virus. They used it on 23 people who had "run out of options" -- lung, ovarian, colorectal, etc. But not breast cancer. It sounds like BC has a lot of treatments in the pipeline. May the beautiful garden that is your brain become NED. Stage IV CAN beome NED

[Mandamoo]

Hi Courtney - sounds like you have lot of options to consider which is a good thing. Good luck in making a decision.