Cyberknife or Whole Brain?
 

Trying to decide between cyberknife, or whole brain radiation. Doctor says there are nodes - there are 16 that they can see, most under 10 mm, but one 16 mm. But they have been there for awhile - probably a year or longer - and the chemo I've been getting might have been getting in just enough to keep them small. I'm scared of WB, and am considering just doing nothing and accepting the inevitable. Any advice at all would be so welcome! What are my sisters with brain mets doing?

Re: Cyberknife or Whole Brain?
 

A friend of ours here on the site, Brenda, who posted under Hutchbk, called her approach to managing her brain mets "wack-a-mole." She did cyberknife, if memory serves, was smart as a whip through it all. Look up some of her posts. They are smartassed, wise and informative and so well written. She was a wonderful person! Nothing would please her more than to be of help to you.

Re: Cyberknife or Whole Brain?
 

Katherine,
I would try to do the cyber knife if possible because your mets are fairly small. I think they can do a few at a time, if memory serves.

Thank you Laurel for reminding me of who it was on this board who chose to treat her brain mets this way. I am adamant about getting regular brain MRI’s, in the hope that if we catch the mets when they are small, I can avoid whole brain rads. The strategy has worked for me so far, knock wood!

Re: Cyberknife or Whole Brain?
 

Katherine,

I forgot to mention that you can search for Brenda's posts by typing in Hutchbk into the search feature.

Kim, I hope more folks chime in for Katherine. It is a scary time for her as you well know! Glad to remind us all of Brenda!

Re: Cyberknife or Whole Brain?
 

Also Xeloda, Tykerb and Temodor are chemos that pass the blood brain barrier and can assist as well

Re: Cyberknife or Whole Brain?
 

Definately SRS. That will only radiate the areas of brain where there are disease. It's done in a single sitting, and can be repeated if needed. Breast Cancer Brain Mets have a 90 - 95% success rate with SRS.

MY wife has had it 3 times over the past 2 years to treat 19 lesions. Only one tiny one remains and is probably just scar tissue.

Re: Cyberknife or Whole Brain?
 

Also, Haloven seems to cross the blood brain barrier, which I had, coincidentailly, just gone on. I'm going with cyberknife; thanks, Freakzilla. With a close watch on the smaller lesions, which are less than 10 mm.

Re: Cyberknife or Whole Brain?
 

I had gamma knife, like cyberknife. I definitely would go cyber over wbr. Especially w slow grow. And see if you can add back in Tykerb to your H and N. I believe Even low dose 2-3 pills are effective perhaps that’s what kept things slow grow all this time. Are you stable in the rest of your body? Whack-a-mole is as good as any other way to beat this beast down. Try to stay as present as possible. Fear not cancer is the enemy. Please remind me to practice what I preach. And as my mom wisely sai, don’t write the ending. Meaning don’t jump to conclusions. Xoxo

Re: Cyberknife or Whole Brain?
 

Why not hit the other leisons with cyberknife at the same time? Job done then.

Re: Cyberknife or Whole Brain?
 

SoCalGirl, you are my hero! Rock on! And may I be so lucky to be 10 years out with lung and brain mets. Thank you for your inspiration!

Re: Cyberknife or Whole Brain?
 

"Don't write the ending..." Wow! I love that! Flori's mom is one wise lady! Good luck Katherine. Please let us know when you will be getting your procedure, so we can have your back in prayer.

Re: Cyberknife or Whole Brain?
 

Wow, the warriors are out in full force. Brenda, aka Hutch would be so happy that she was helping to lead the charge! I am always going to remember....don’t write the ending.....so wise....sending good vibes to Katherine and the other warriors

Re: Cyberknife or Whole Brain?
 

I do want to wish you well Katherine but I also wanted to say how much I appreciated the "don't write the ending" comment from Flori. That was something I really needed to hear (in a non-cancer situation). So thanks!

Re: Cyberknife or Whole Brain?
 

So, I decided to get cyberknife to the largest (16 mm) lesion, on Thursday, March 15, the day before my 59th birthday. They are putting me back on Tykerb, and Haloven, for blood brain barrier, to keep small lesions at bay. I will get monitored next month to see how that's going. I feel better about getting minimally invasive treatment first. No symptoms, apart from numb left pinky, which they think is caused by the large lesion. Does anyone know of immunotherapy, or other clinical trials on HER2+ women with brain mets?

Wish me luck! It all feels so surreal, doesn't it? So hard to process.

Re: Cyberknife or Whole Brain?
 

Wishing you good luck on Thursday Katherine. If the cyber knife is anything like the gamma knife, which I had on a single brain met, it should be fairly easy. I had mine done at UCSF, and we even stopped to get a latte for the drive home afterwards!

The most uncomfortable part for me were the injections given to numb the area where the halo was attached. They weren’t really so painful, it was just a very strange sensation.

The next day, I had a bit of a headache, but no other symptoms. I was back to riding my horse in less than a week!

Since it’s been a few years that I had my procedure, I will be anxious to hear about your experience.👍

Re: Cyberknife or Whole Brain?
 

I dont know of any immunotherapy. They do use Ketruda in Melanoma. Former Pfresident Carter has melanoma that metastasized to the brain and seems to be doing well on Keytruda (Pembrolizumab). Melanoma seems to respond to immunotherapies, not sure about breast cancer.

Ive read of Her2Neu + BC mets being treated with intrathecal Herceptin.

Paul

Re: Cyberknife or Whole Brain?
 

I dont know of any immunotherapy. They do use Ketruda in Melanoma. Former Pfresident Carter has melanoma that metastasized to the brain and seems to be doing well on Keytruda (Pembrolizumab). Melanoma seems to respond to immunotherapies, not sure about breast cancer.

Ive read of Her2Neu + BC mets being treated with intrathecal Herceptin.

Paul

Re: Cyberknife or Whole Brain?
 

Good luck with the cyber knife procedure. Might be worth finding out about the Her2 Climb study, with ONT 380.
Best wishes.... Pam

Re: Cyberknife or Whole Brain?
 

I am thinking about you too. Hugs from me

Re: Cyberknife or Whole Brain?
 

Just saw this on metavivor post on Facebook. Wanted to give you info ASAP. Xoxo

BRAIN METS TRIAL NOW OPEN AT THE NCI – 98 APPLICANTS URGENTLY NEEDED. Applications being taken for the next six weeks only. Date this is being posted: March 7, 2018.

PURPOSE OF THE TRIAL: To determine if TDM-1 combined with the oral drug Temozolomide, which is known to have the ability to cross the blood brain barrier, can prevent a return of brain metastases that have been previously treated with stereotactic surgery or surgical resection.

QUALIFICATIONS:

Must be HER+. (ER and PR status can be positive or negative.)
Must have diagnosis of brain metastasis.
Must have no more than three brain mets or have had brain mets recently removed. (Those with 4 to 5 lesions might be considered.)
Must have just had or be eligible for stereotactic radiosurgery or surgical resection of brain mets. (If lesions are present, removal can be done at NCI.)
DISQUALIFIERS:

Patients with leptomeningeal metastatic disease
Patients with history of WBRT
Patients unable to complete a brain MRI with contrast
Patients with breast tissue expanders unless removed pre-enrollment
HBV, HCV or HIV-positive patients
TREATMENT: There will be two groups in the trial. One group will receive TDM-1 plus Temozolomide. The other group will receive TDM-1 only. The study will be done in 3-week cycles. All participants will get T-DM1 on day 1 of each cycle. Some participants will also take TMZ capsules by mouth every day. Participants will have image-guided lumbar puncture at least 2 times. Participants will have a follow-up visit about 1 month after stopping the study drug.

SCREENING: Participants will be screened with the following

Medical history
Physical exam
Heart tests
CT and MRI scans
COST: For those qualifying for the trial, the NCI will cover the cost of the trial and the cost of transportation to and from the NIH Clinical Center in Bethesda MD for purposes of the trial. The NCI will also give a small stipend to help with hotel costs to those participating in the trial. NOTE: Travel to the NCI to determine whether you qualify for the trial must be at personal expense.

LOCATION: All tests and procedures will be performed at the NIH Clinical Center, America’s Research Hospital in Bethesda, Maryland. They are on the Washington DC Metro system. Take the Red Line and get off at the Medical Center stop.

If you are coming to Bethesda and wish to get together with the Maryland METAvivor peer-to-peer support group, please contact CJ at cj@metavivor.org or Kelly at kelly@metavivor.org

FOR MORE INFORMATION CALL:
Office of Patient Recruitment
1-866-444-1132
TTY: 1-866-411-1010
Online, https://go.usa.gov/xRhAy
Refer to study # 17-C-0115