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Old 02-23-2009, 04:50 PM   #1
DianaT
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Brain met - cyber knife, tykerb and xaloda (sp?) help!!!

My brain MRI found a 8 mm (first thought to be 7mm) singular met and I will undergo cyber knife on Thursday. My onc wants to start tykerb and xaloda two weeks after. Has anyone ever just had one met and how long did you stay on the medication? Forever?? I show NED everywhere else. The PET didn't pick up the brain lesion either.

My rad onc said she couldn't be sure that this was in fact a met, it could be something else but given my history that is how they want to attack it. I am trying to get into MD Anderson for a second opinion, but will have the cyber knife either way.

Some personal experiences would be greatly appreciated!
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Old 02-23-2009, 08:48 PM   #2
ElaineM
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Wink Brain met - cyber knife

I have never been in your situation, but I want to tell you I am sending positive thoughts your way.
Take care.
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Old 02-24-2009, 08:26 AM   #3
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Diana,

Dr. Keith Black's team at Cedars Sinai Medical Center has a scan review program: http://www.csmc.edu/2233.html

Dr. Black is perhaps the most prominent neurosurgeon in the United States.

Cyberknife is a non-invasive treatment with little or no side effects.

Tykerb and Xeloda is one of the newer treatments to prevent brain mets. I doubt if you will be on the drugs forever. But you will have to be monitored at regular intevals with Brain MRI's

REegards

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Old 02-24-2009, 08:50 PM   #4
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Diana,

I had Gamma-knife radiosurgery. I believe they are very similar. You most likely going to have your head steadied and going through the procedure just like you are getting a MRI. There are websites about cyberknife. A good one is from wikipedia: http://en.wikipedia.org/wiki/Cyberknife

MD Anderson is the place to go for second opinion. Do you live in the Southwest? or Texas? There are several Texans on the board, but I don't remember anyone in the Houston area.

If you type in "cyber knife" in the Search button on the goldbar on top of the board, you will find some threads on the subject. One of them can be accessed here: http://her2support.org/vbulletin/sho...ht=cyber+knife

If you post on that thread, maybe we will get some updates from those who had posted there (+ some new ones.)
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Old 02-25-2009, 09:03 AM   #5
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Hi Diana-

I had a single met one year ago and had a gamma knife procedure at Cedars Sinai Gamma Center. So far so good.

Because my met was in a spot that didn't affect anything, and because I was not having any symptoms, I choose to wait 4 weeks and rescan to see if there was any change before I moved forward. (I was already on Tykerb so knew that wasn't enough if it was a met). Unlike you I had mets in my sternum and lungs that were not yet under control, which was another reason for me not to jump on the brain met until I knew it was more than a ??.

The other alternative to consider and discuss would be to start Tykerb-Xeloda and see if it gets rid of or shrinks your single met while you are waiting the 4 weeks. There are many women on the board who have successfully dealt with mets. One using Tykerb-xeloda alone for maybe a year before adding some cyber knife. You might want to re-post on the main board.

Hope this helps!
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.

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