GAMMA questions concerns

[SoCalGal]

Just wanted to say that my brain mri last week showed growth on the one spot found 4 weeks ago. It's "only" 13mm.

I am scheduled for a gamma knife consult.

This is terrifying news for me. I hardly knew how to co-exist with the lung/sternum mets.

I know that many woman here have had success with the Gamma knife so I wonder:
1. what IS success - how long has the radiated site stayed either stable or ned?
2. what questions should I ask the doctor? I feel so unprepared.
3. did everyone HAVE to go on cortisone - I am extremely worried as I have a very adverse reaction to decadron and have NOT had any for all my chemo treatments - since '96.

I have been on Tykerb with a variety of things since March 07 with a 4 week break in December.
My onc thinks it is offering some protection to my brain but still wants me to "get" the one met.

Thanks for the feedback.
Sigh...
I am getting so weary of this crap.
Flori

[Vi Schorpp]

Have you gone to the Metastases - Brain/CNS site on the pull-down menu yet? It's pretty informative and might help with some of your questions. Also, I know StephN has written pretty much about her experience, as well as Christine. I'm weary for you and this is so discouraging at times. I wish I could be more helpful, but I'm thinking of you.

[Ceesun]

Flori, Ditto for the weary department. I hope that small met is zapped into oblivion. Glad you have been on Tykerb, perhaps its a good preventative. Ceesun

[tousled1]

Flori,

I didn't have GammaKnife but did have CyberKnife for a single brain met. The CyberKnife procedure was a walk in the park and I really do mean that. I had an appointment to get fitted with the mesh mask and then the appointment for CyberKnife. Oh, also had to see the neurosurgeon and have additional CT scans as well. The actual procedure was a breeze. I drove myself and received absolutely no medication. The procedure took about 90 minutes and then I drove home. No ill side effects after the procedure. I had that done in August and my 2 MRIs since the procedure show the brain is clear. I know that CyberKnife is not available everywhere. I also know that there are a few women on the board here who have had GammaKinfe done and I hope they can offer you some advise. Best of luck to you.

[chrisy]

Remember, honey,
BREATHE!

I can hear the weariness through your post, and I sure don't blame you! No wonder you are weary - you have fought and fought way beyond where others have surrendered, and you are still fighting.

Your onc is right, you want to "get" the one that escaped tykerb. I suspect that he/she was the one who noted it is "only" 13mm - they just want to make me scream and laugh at the same time. But it is well within the scope of gamma or cyber knife treatment and there's a great chance you can eradicate it completely.

I am pretty ignorant on the specifics, but Christine would be a great resource on this, as well as Esther. Esther hasn't visited here for a few weeks, but you could send her an email or pm.

Hopefully some more folks with direct experience will see your post and give you the right questions and some answers as well.

Hang in there.
I love you so much.
Chris

[jones7676]

I have had gamma knife surgery. All the big equipment was scary, but the procedure itself was easy. The hardest part was having the halo screwed into your skull....but really not bad at all. I have had two tumors removed stereotactically as well. None have recurred to date.

[Jackie07]

I had 3 "shots" of Gamma Knife back in 2001 to 'zap' 3 tumors that had grown out of the residue cells from the 25-hour brain (tumor) surgery in 1990. Like Barb said, it was not bad at all. The idea is to divide the radiation dose so it will not affect the brain tissue as much. The 'screws' pressed on the skull can be a little bit painful, but 'it's not too bad at all'. My 'central neurocytoma' is a very slow-growing tumor, so it diminishes slowly after the treatment. For fast-growing cancer cells, Gamma-knife treatment can be very effective very quickly. Since the treatment, I have lost a couple of jobs. But I have also learned a new language (Spanish) and gone through teacher training (passed the exam with high mark) and started a new career teaching special education.

[Mary Anne in TX]

Flori, I just wanted to tell you that I care and will be praying for you and believing in your NED. You're quite the brave warrior and will find the strength to "go another day"! You're one special lady! Lots of love, ma

[Kim in CA]

Dear Flori,

I had an MRI in July of 05 that revealed a single brain met of 8mm. I had just had an MRI 9 months earlier that was clear. I told my Onc that I had heard about the Gamma Knife on this website and wanted him to refer me for treatment right away. I got an appt. for a consult pretty quickly, but it still took a month before I actually had the procedure.

Anyway, the tumor had grown 3 mm by then, but it was easily zapped with the Gamma knife and there has been no recurrence. The procedure itself only took a few minutes, but unfortunately you have to be in the halo for several hours so they can first map your brain and then get things set up for the actual treatment. When I was all done, I made my husband take me to Starbucks on the way home and then I felt fine!

I didn't have to take any decadron and don't even think I took any Ibuprofen except that night for a slight headache from the pressure of the halo. It really is an amazing technology, that you can zap a tumor in your brain and go about your normal routine the next day.

Kim

[Lani]

No personal experience on my part,but around 12 years ago, as a favor to a friend , I accompanied her son who had an acoustic neuroma (benign tumor, but recurrent and big enough to press on the center where breathing and heartbeat control is to threaten his life) for a second opinion with Dr. John Adler at Stanford, who invented the Cyberknife. As he explained at the time, the Cyberknife precludes the need to use a halo in comparison with the gamma knife. Don't know if that is still true.

I didn't know if he is still actively seeing patients at Stanford, so I looked him up and found this:


John R. Adler, Jr.
Profile: http://med.stanford.edu/profiles/cancer/researcher/John_Adler/
Contact:
Name: Barbara Pedrick
Title: Administrative Associate
Email: bpedrick@stanford.edu
Phone: (650) 723-5573

Academic Appointments
AppointmentOrganization
Professor - Med Center LineNeurosurgery
Graduate & Fellowship Program Affiliations
Neurosurgery,
Printer-friendly Version

Curriculum Vitae Doc
Honors & Awards
TitleOrganizationDate(s)
The Inaugural Ideals of Entepreneurship AwardEmerging Entepreneurs in Biomedical Technology, Biodesign Group, Stanford University2005
Outstanding Achievement in MedicineSanta Clara Valley Medical Association2007
Administrative Appointments
TitleOrganizationStart YearEnd Year
Founder and Member of the Board of DirectorsAccuray, Inc.1991 -
PresidentCyberknife Society2003 2007
Vice PresidentWestern Neurosurgical Society2005 2006
Chief Medical OfficerStanford2002 2006
Chairman, Accuray, Inc.1999 2004
CEO, Accuray
6 Appointments Listings: View All
Professional Education
DegreeAwarding InstitutionField of StudyYear of Graduation
MDHarvard University Medicine 1980
ABHarvard College
-
1976
Research Interests
The development and implementation of computerized, image-guided surgical tools to be utilized during minimally invasive brain operations. The clinical outcome of new technologies, and in particular the application of
radiosurgery, for the treatment of brain tumors. The creation of new radiosurgical techniques for a wide array of brain and spine disorders which includes 1) trigeminal neuralgia 2) spinal cord AVM 3) pituitary tumors 4) skull
base meningioma 5) benign peri-optic tumors 6) brain metastases 7) acoustic neuroma 8) glomus jugulare tumors 9) brain and spine schwannoma 10) painful facet syndrome 11) radiomodulation for functional disease of the
brain

Publications
Gibbs IC, Kamnerdsupaphon P, Ryu MR, Dodd R, Kiernan M, Chang SD, Adler JR "Image-guided robotic radiosurgery for spinal metastases." Radiother Oncol 2007; More
Ho AK, Fu D, Cotrutz C, Hancock SL, Chang SD, Gibbs IC, Maurer CR, Adler JR "A STUDY OF THE ACCURACY OF CYBERKNIFE SPINAL RADIOSURGERY USING SKELETAL STRUCTURE TRACKING." Neurosurgery 2007; 60: 2 Suppl 1:
147-156 More
Roberts BK, Ouyang DL, Lad SP, Chang SD, Harsh GR, Adler JR, Soltys SG, Gibbs IC, Katznelson L "Efficacy and safety of CyberKnife radiosurgery for acromegaly." Pituitary 2007; More
Cheshier SH, Hanft SJ, Adler JR, Chang SD "CyberKnife Radiosurgery for Lesions of the Foramen Magnum." Technol Cancer Res Treat 2007; 6: 4: 329-36 More
Adler JR, "Foreword." Technol Cancer Res Treat 2007; 6: 3: 151-2 More
82 publications: view full list

I did not bother to put the list of 82 publications up, but feel free to google John Adler, MD Stanford and click on his profile if you want to look them up.

I think there are several persons on this board who have been treated by Dr. Black at Cedars and can relate their personal experiences. As I said, my indirect knowledge is of a different problem treated in a different person and many years ago (hence my ignorance regarding the need to use a halo or not)

I have no idea if your oncologist is recommending you have this right away or if you have time for a second opinion nor if it would really be practical to try to see Dr. Adler for a second opinion. I just remember you are someone who sought out several opinions for a new oncologist and was thrilled by what you found with your new one.

I hope my posting this is more of a help than frustration--especially since my "knowledge" is not personal, very incomplete, and exceedingly old.

Everyone who has posted here who has been treated by Dr. Black seems to have been exceedingly pleased it seems to me. It just seems that you are one who is always full of questions( a good way to be!) and sometimes comparison-shopping is the best way to be happy with the options at hand.

[SoCalGal]

Thank you everyone for all of the information. Lani - you are right on in your assessment of me...never heard of Dr Black but will look him up next. And I will look up the Stanford info since it's not too far away. Might call up there today and see what I can find out. My sister sent me info on Stanford yesterday-too.

I did not realize that her2 had a 30% increase risk of brain mets or I would have insisted on a scan from my old onc. Thank goodness I switched to a more aggressive doc. She is big on the hugs which I could do without - funny that I don't care for that part of her - because I am a very warm and loving person. Hug and kiss all my friends etc but I guess I don't want to hug a doc that I just met. lol.

Trying to read about the brain mets and research on my own has proven to be too much for me to handle right now so I really appreciate this board more than ever. I just couldn't do this without everyone here.

I think they want to move on this fast-fast. I'll know more on Friday. I can say that having something in my head takes great emotional energy to deal with. It's just freaky.

Thanks for all the help.
Flori

[Lani]

this one I have met socially and she struck me as humane, kind, thoughtful, careful, diligent as well as a good explainer.

I posted her name once before--she works with the UCSF breast cancer center and she is a radiation oncologist whose practice is limited I believe to brain tumors and especially metastatic brain tumors from breast cancer. Her name is Penny Sneed.

With all this information (possibly too much) you should be busy!

PS I googled Keith Black, MD Cedars-Sinai and there is lots of info there too.

[StephN]

Dear Flori -
However that stubborn met is dealt with - YOU will have a great emotional relief the moment the procedure is over.

I had Gamma Knife and all the big machinery is SILENT. You don't hear a thing during the procedure. I brought my own healing CD's they played for me. So it was a surprisingly relaxing treatment.

As you fear, the worst for me was having to take the Dreaded Decadron for a month. They did make me a little whacky and I hated to getting up at night because you are SO awake four hours after each dose.

If you can have the Cyberknife and fewer/NO drugs - that would seem like the direction to head. You can have your scan sent to the center and they can tell if it looks like something they can do for you, before you go traipsing all over.

[Andrea Barnett Budin]

Wow, Flori, You have accumulated some outstanding advice in an instant here. And I would imagine some comfort, as well. It sounds like this isn't as scary as it sounds at first blush. (Sorry. Easy for me to say. From the sidelines.)

And sorry (or glad) I have no experience w/your specific problem. Sigh. But of course I believe I understand the dread and fear and alarm part. We've all been there I think.

You are being called upon to dig deep and find that peaceful place right there inside you -- yet again. And that is so unfair. I have sent an entreaty to God to GIVE THIS WOMAN A BREAK, PLEASE! I think he heard me...

I know what faces you requires great fortitude, but I have so much confidence in you, my radiant Sister. Flori, Flori, morning glory. You cannot be defeated. Hold that thought, please.

And please know that my thoughts are ever with you. Can you feel me? I am speeding much love and healing energy to you, Flori, at this very moment. Please stay strong and brave, as it is your true nature. You are an incredible role model for all of us. I feel blessed to know you. And soon -- I am coming to see you... I AM SO EXCITED ABOUT THIS. California (and Flori) here I come!
Andi http://cdn-cf.aol.com/se/clip_art/peeps-emt/love/clips/clip1-love2

[Adriana Mangus]

Dear Flori:

So sorry to hear the news about your brain mri. Christine- our founder- is the one to ask questions related to gamma knife and cyberknife as she's had so many treatments to that area. I'm sure that Joe and CHristine will be delighted to help you. Much Love to you...