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Old 11-23-2014, 10:27 PM   #1
forher
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What can I expect from brain rads?

Hello,
I am new to the group. My husband posted for me a few days ago. I was just diagnosed as Stage 4, brain mets from breast cancer. It took us by surprise. I met with my onc and radiation doc and I have 4 brain lesions and will start high dose rads in a couple of weeks. I'm nervous about it and not sure what to expect. Will I still be able to work? How will the rads affect me? Will I feel sick or nauseous? Just looking for some words of support and experience. Thank you.
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Old 11-24-2014, 06:54 AM   #2
catalina
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Re: What can I expect from brain rads?

I saw on your husband's post you were having gamma knife. It is not bad, a bit of uncomfort during the procedure but very easily tolerated with little or no hair loss. She was back at work the next day at an elementary school.

My wife saw immediate benefits from the procedure. She had gamma knife for 6 tumors and it had no negative effect on her at all.

Take care and hang in there.
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Old 11-25-2014, 01:37 AM   #3
forher
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Re: What can I expect from brain rads?

Oh! Thank you so much for responding! I'm glad to hear that your wife is doing well. This is wonderful! The docs have me on dex but I don't think it's helping my headaches so I stopped taking it and I feel better. Weird, I know. But Ativan helps. Docs say that the tumors are small enough that I am probably asymptomatic, but like I said, I do have headaches. I must admit that my great fear is having a seizure. My other fear is WBR. I'm having another MRI of the brain done on Wed so that my mask/head gear can be made next week. My onc also said I might be eligible for tykerb. I asked her about herceptin since I'm stage 4 but she said "no herceptin" since my body is clear. Hmmm. I thought herceptin was continued if stage 4, but does it exclude me since I have brain mets?
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June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 11-25-2014, 02:24 PM   #4
StephN
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Re: What can I expect from brain rads?

Hello,
Sorry you have to join the Brain Mets Club! If you are having a mask made, it sounds like you are slated for cyberknife.
There is no mask for gamma knife, just a headframe that is fitted on the spot before the one-time treatment.

I had gamma knife on two tumors (one sizeable at 3cm). The dex kept me buzzing all during the time I had to take it. The day after my gamma knife I was driving down to the U of W to meet a member of this group who was in a vaccine trial. She was from Oregon, and we had met previously. She could see no difference in me after my treatment.

All the best for a complete and trouble-free result.

P.S. I was still on Herceptin when my brain mets appeared. And I stayed on it for another couple of years. Not sure what the standard of care is now for brain mets as first site of mets. Probably Rolepaul knows.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.

Last edited by StephN; 11-25-2014 at 02:27 PM..
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Old 11-25-2014, 10:46 PM   #5
forher
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Re: What can I expect from brain rads?

Hi StephN,
Your signature history is very inspiring! It's so great to hear that you are NED and helping others. I asked my clinic today and they said that I'm scheduled for Stereotactic Radiation (SRS). What is the difference between SRS and cyberknife and gamma knife?
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June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 11-26-2014, 06:57 PM   #6
Jackie07
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Re: What can I expect from brain rads?

Hi,

Both GKRS and Cyber knife are a type of stereotactic radiosurgery:

http://neurosurgery.ucsf.edu/index.p...iosurgery.html

Gamma knife has huge helmet looking machine containing 201 holes. The doctors 'map' the tumor with the holes and focus the beams on the tumor. This way, the radiation passing through the brain tissue is not as strong as the radiation destroying the tumor.

Cyber knife is one (much weaker) beam circulating in super fast speed around the brain (like 200 times per minute) to hit the tumor.
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Old 11-27-2014, 03:56 PM   #7
embur102
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Re: What can I expect from brain rads?

I had Gamma Knife in June, to one 2 cm area. The procedure and side effects were very manageable. Initially, I had a positive response, with tumor shrinking 50 %. One month later, tumor had grown twice the size. On steroids right now, will look at it again in two weeks to determine if we do surgery or not.

Monday, I also started chemo again (taxotere, herceptin, perjeta) for liver mets. If surgery is needed, will stop the chemo for the surgery, then start up again.

Sorry that you have to be in this group, but glad you found us....this is the best group of ladies I know
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Dx 4-12-2012
R unilat Mx 5-25-2012 (no reconstruction)
Stage 2B, Grade 3, Her2+++, Er + (15%), Pr -
4.2 cm, 2/14 nodes +
3 AC, 4 T/H
Zoladex 4 months
Oophorectomy Feb 2013
AI daily
Herceptin every 3 wks until Sept 2013
Gamma Knife June 2014, 2 cm brain met
Liver mets Oct 2014
Taxotere/herceptin/perjeta-CLEOPATRA trial Nov 2014-Mar 2015


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