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

Re: Cyberknife or Whole Brain?
 

Also, this is worth checking out:
Phase 2 Study of Tucatinib vs Placebo in Combination With Capecitabine & Trastuzumab in Patients With Advanced HER2+ Breast Cancer (HER2CLIMB)

Re: Cyberknife or Whole Brain?
 

Thanks, SoCalGirl. Sadly, I have 16 lesions, and am only treating the largest with cyberknife, so I'm not eligible. Good to know, though, that HER2+ brain mets are getting attention. Hurry, hurry, is what I say!

Re: Cyberknife or Whole Brain?
 

Katherine,
I think your approach is reasonable. While terrifying to think of anything being done to the brain, it really was one of the easiest treatments I've ever done. If they still use an aluminum "halo" affixed to your head, keep in mind these "screws" do not go in very far, and once they gave the little bits of lidocaine it's more of a pressure sensation and was not pain at all. I say it must be how it feels to have an arrow in your body, it's there and you know it's "wrong" but it far from kills you. Also made me think of the old Steve Martin bit where he came out with an arrow thru his head, signature look for years.

The other thing I wanted to mention on ANY clinical trial requirements; they can and do make exceptions all the time. I think going forward the her2climb is very promising, and hopefully they'll expand access if you need to switch protocols.

Okay, lastly, yes, this is all surreal, terrifying and for me, the next time I meet with my one (end of this month) my focus is going to be "what does it look like if I go off treatment". I have so many questions for her on this issue; will she still look after me if I need a palliative treatment for pain, will she expedite my right to die paperwork, and in her best estimation, how much good time might I have before the beast really roars. It's sad that after 10 years in her care, I am most anxious of her telling me I should find another doctor - I am afraid she won't respect or support my choices. BUT, I like to have an idea of plan A, B, C and maybe D. And know that for all my fact gathering, I won't really know until life unfolds.

Wishing you all the best on the 15th. I went in at 7:00 AM. Kept street clothes. My best friend and boyfriend came with me. We had a big room, not hospital setting. Took no drugs before hand. Asked my surgeon to stop the drill once, just for me to catch my breath. And then he finished installing the halo. I then sat for about 2 ½ hours while the physicists did more planning. Then they "snapped" me into place, which is the best way to keep my head perfectly still while they aim rads at tumor and zapped. I think that took about 10 minutes or less. I felt nothing other than relieved to get halo off. I wish you the easiest time.
xoxo

Re: Cyberknife or Whole Brain?
 

Thinking of you today! Update when you can. Xoxo

Re: Cyberknife or Whole Brain?
 

So I broke the cyberknife. Had to reboot the computer with 15 minutes to go. Lovely. Took an ativan and came home to nap for a few hours. Feeling sleepy, but normal enough. Yesterday, I had some unsteadiness and shaking, and was worried, but it seems to have been nerves - I was very anxious and scared - and maybe not some accelerated worsening. Will get Halven and add Tykerb back tomorrow, my 59th birthday. Then another brain MRI in April to see what the little lesions are doing. Felt so surreal to get the cyberknife today - lying down with the mask on, as the robot wheeled around the room, squealing, beeping, and bopping, knowing that it was periodically zapping my brain with high doses of radiation. Unpleasant, but minimally invasive. No pain. No blood. No knife. Just the powerful invisible force of a substance used in military weaponry, for great destruction, or, in this case, for individual healing. Strangeness. But gratitude. I hope it works! Thanks, you guys, your support means more and more to me, as we share this journey. People say I'm brave, and maybe I am, but I wouldn't be if I hadn't had to have been. Will I make it to 60? Big deal in Korean culture. I hope so!

Re: Cyberknife or Whole Brain?
 

Glad you got thru today. Stay strong - keep fighting. I am wishing you the best of everything!! Hugs!!

Re: Cyberknife or Whole Brain?
 

Katherine, I hope all is well for you today. Sending you plenty of strength.

Re: Cyberknife or Whole Brain?
 

I am four days out from cyberknife, and, though I am not experiencing any side effects so far - knock on wood - I have been sort of freaking out about the grim statistics surrounding brain metastases, which I couldn't help stumbling upon. Even though I've been stage 4 for three years, I still had hope that the lung mets could be stabilized, and that I had some years left to live a good quality of life, but now with the brain progression, I feel like my time line has shrunk suddenly, to where I'm wondering if I'll make it to my 60th, which is a year from Friday. This is terrifying, but the worst part is the not knowing. I teach university, and am trying to finish out the semester, but may have to take medical leave in the fall, and don't know if I'll ever go back. I'm not sure what to do about the fear and the uncertainty, which I'm sure you all share; it's one of the pervasive conditions of our illness and staging, but how do you handle it healthily? How do you not succumb to the fear and the dark thoughts? It's so hard, and you don't want to bring the people you love down, or to be treated with kid gloves, but it's also hard, sometimes, to pretend to be up or cheerful all the time. You know?

Re: Cyberknife or Whole Brain?
 

I wish I had answers for you. I am going through a similar space myself. Really, the only thing that we can do is bring it back in, get present. If that is all that is "doable" then thats okay for now. You cannot answer all the questions, including what the mets are doing or not doing. Try to focus on the individual part of the day. I do a lot of self-talk, like, "okay, now it's morning. I'm going to shower, eat and get dressed. And what I'm not going to do it get in to the chatter in my head". This disease takes so much, we have to take back what we can. Focus on your birthday plans for this year. Don't worry or grieve about next year, at least not this week. You've just been through an ordeal, so self care is critical. If you truly believe your days are shortly numbered, then my best advice is to make sure you are spending your time on what matters to you. For some it might be work, each of us is different. You don't have to make big declarations now, you can try one thing and decide no, and try another. There are no real rules, and certainly no map to living this way with so much fear. For me, the other day I realized I went a whole couple hours without once thinking the cancer word. I have said since day one, cancer is a mind game. Fear the enemy. We all have it. It's good to express it, here, or in a group, to a close friend, or family members, or clergy or whomever. But we also have to control the chatter. It's exhausting, and takes the joy out of everything. I am reaching out to a couple groups, have gone back to my old shrink, and am working on doing a little each day. Not super successful with attitudes of gratitude, more like spitting mad, but work in progress. It aint over till the fat lady sings...and let's not keep trying to write the ending. And miracles do happen every day!! "post quick reply. lol"
xoxo Flori

Re: Cyberknife or Whole Brain?
 

Thanks, Flori. I am grateful to you, and to everyone who has shared a bit of their journey here. It is a terrible camaraderie to share, but it does help to know that one is not alone. And, yes, stopping the chatter, stepping outside of the fear and the foreboding, being able to just luxuriate in the moment - here, alone in the house, on an unexpectedly sunny day, when the weather predicted rain, eating leftover Korean food, listening to the neighbor building his new house (ha!) - this is crucial and right and good. The disease has taught me to pay attention, to not discount the ordinary because it is not sublime, but to recognize the sublime in the ordinary, and some people are blind to that their whole lives, so I am grateful, though I wish it didn't come at so high a cost. Today I am better with it, though I did not sleep much last night. Thank you for keeping me company in a moment of panic, Flori, I am rooting for you!

Re: Cyberknife or Whole Brain?
 

Katherine,

Glad you are through the cyber-knife and I really loved your description of how surreal it all was. I think that with every scan or MRI. You captured the enormity of the experience so eloquently. Brave, brave lady!

I harken back to Flori's mother's words of wisdom, "do not write the ending" of your story. How you will respond to your treatment plan is your story. My feeling is that you are going to do very well and that 60th milestone is very much in your future. It is wonderful to have so many to share the journey with on this site. We have many long term survivors with brain mets here. You will be one more!

Re: Cyberknife or Whole Brain?
 

Sweet Katherine, I'm sorry I missed all of what has been going on this month for you. I will be thinking of you and praying for you for your April appointment. Expecting and praying that the lesions are zapped. Hugs, friend. Beth

Re: Cyberknife or Whole Brain?
 

You may want to check out Breast Cancer Trials (bctrials.org), which also has a a separate trial search engine. Perhaps a trial will work for you at some point.

I had only one brain met that was surgically removed, and then the tumor bed received targeted radiation.

Re: Cyberknife or Whole Brain?
 

That's a great search engine, I used it the other day and came up with a lot of reading, and trials - all in a very readable format. KATHERINE, how are you doing? Sending good thoughts and hugs and all that! Flori