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Old 08-29-2010, 07:51 PM   #1
Darlene Denise
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Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
Re: New Mets to brain/WBR

Patricia: It might be that you need an additional onc to consult and advise with your local onc. Find one at a facility that does a lot of clinical trials for bc brain mets. You need someone who specializes in this type of situation. I get treatments from my local onc, consult at Dana Farber which enables me to access their clinical trials and actually had Cyberknife for the brain lesions at UNC. My local onc is receptive to this and welcomes info from thought leaders at leading NCI facilities to help us navigate my care. No one doctor can know and be on top of everything plus take care of patients everyday. This is were researchers come in handy.

Avastin has been proven as safe when using it on a patient that has brain cancer or brain mets, and has shown efficacy in some primary brain cancers, however, not a lot of data proving effective for breast cancer brain mets. Just because a drug can pass the BBB doesn't mean it will be effective on the breast cancer that is there. This area of treatment is not well understood or studied at this time for many reasons. Long way to go on this from what I have learned.

Wishing you well...Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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Old 09-04-2010, 10:44 PM   #2
dchips1
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Location: Mesa, Az
Posts: 219
Re: New Mets to brain/WBR

Hi I have whole brain rads for 6 brain lesions the largest on my brain stem in the first part of 2007. My rads were down to my C-2 spine. So it affected my ears, and my jaw. But it was effective in eliminating the tumours. I had 1 lesion that popped up in different spot in 1/08 gamma 2 craniotomy of 99% necrotic (dead) tumour with some active cells so far my last MRI's have been good, with Tykerb and herceptin on board.

Overall I have done well with the radiation side effects I thought of the beams (Icould see a light when the beams crossed) As healing lights!!

I'am a little short on the short term memory, but who isn't raising 20 somethings and a 10 year old!!!! I Will be 43 in October, so is it chemo/rad brain,or like everyone else.... That is what little notebooks and to Do lists were made for!!! I also work puzzles and going to go back to reading novels, it is good to retrain your brain.


Peace prayers and Rainbows of hope to You !!
Darita

Be brave and never let the DR's push you around!!Seek this site out and follow through with second opinions as others have posted even if it is a trip to another state!!

All of this is scary, trust God, enjoy life and laughter. Laughing is good therapy mentally and physically.
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 09-05-2010, 10:45 AM   #3
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: New Mets to brain/WBR

Hello -

Yes, the news of "BC spread to brain" is a kick in the gut. Catch your breath and take the next steps looking forward - never back.

Temador and Xeloda has been a long term successful combo for a few people who have tried it for brain mets.

You should see a brain SPECIALIST even if you have to travel a ways to get a good one.

I had two brain mets treated with gamma knife 5 years ago. No new ones since then.

Please post with your progress and questions.
__________________
"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.
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