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03-05-2014, 06:16 PM
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#1
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Senior Member
Join Date: Sep 2013
Posts: 43
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experience with brain mets?
Just had an MRI after pet scans showed stable but tumor markers doubled, accompanied by Morning headaches and some dizziness... so my question is, has anyone survived any length of time with brain mets? I'm truly terrified..
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Stage IV August 2012- mets to liver, bones, omentum, and skin. Started herceptin/perjeta/taxotere
May 2013- started herceptin/ perjeta/navelbine
August/September 2013- started kadcyla
March 2014- ended kadcyla, had gamma knife to three spots in brain
58 yrs old, post menopausal at dx
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03-05-2014, 08:48 PM
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#2
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Senior Member
Join Date: May 2010
Posts: 184
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Re: experience with brain mets?
Debsing, First, it all sounds so much scarier than it needs to. There are just so many treatments out there now.
I had 2 mets to cerebellum but because I had kidney cancer and they didn't appear as "normal" mets on CT, I had a craniotomy to biopsy and remove them followed by cyberknife to clean up after. I was on steroids (dexamethasone). before, during and after it all. I had a love hate relationship with the dex. It made me feel better but sleep was elusive. The weaning off the dex was not fun. The surgery was not as bad as anticipated up and about pretty quickly and the cyber after was not difficult at all. As far as survival, I plan on being around a long time even if they come back I know the treatments are all doable and mostly scary because it's the brain. I have read other people who had brain mets once, years ago and going strong. My comfort comes from knowing that cyberknife can be done over and over and I will have MRIS every 3 mos. so will probably catch anything early.
Also there is intrathecal herceptin now that I don't know much about but sounds very promising.
Keep your head about you (pun intended) and explore with your drs. the best action for your situation and meet it head on. Pun again?!?!?
Hugs and prayers, Cathy
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3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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03-05-2014, 10:12 PM
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#3
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: experience with brain mets?
Thank you so much for your help/input!
__________________
Stage IV August 2012- mets to liver, bones, omentum, and skin. Started herceptin/perjeta/taxotere
May 2013- started herceptin/ perjeta/navelbine
August/September 2013- started kadcyla
March 2014- ended kadcyla, had gamma knife to three spots in brain
58 yrs old, post menopausal at dx
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03-05-2014, 11:18 PM
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#4
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: experience with brain mets?
Debsing,
Try not to panic until you know what you are dealing with. If you do have brain mets, you will find many women on this site who can provide advice and inspiration. Let us know what happens at your next doctor's appointment.
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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03-06-2014, 02:48 AM
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#5
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: experience with brain mets?
The founder of this group, Christine, had successfully treated her brain mets more than 15 years ago. She passed away not long ago and we sure miss both her and her husband， Joe， who had designed this platform and been the Webmaster for many years. Joe had passed away few years ago shortly after being diagnosed with late stage lung cancer. Their daughter, Deborah, is now overseeing this website.
StephN has also been a long-time survivor of brain mets since 2005 ... http://her2support.org/vbulletin/sho...163#post306163
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 03-06-2014 at 06:45 AM..
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03-06-2014, 08:51 AM
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#6
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Senior Member
Join Date: Sep 2013
Posts: 43
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Re: experience with brain mets?
Geesh I look at the years and can't believe how time flies!
__________________
Stage IV August 2012- mets to liver, bones, omentum, and skin. Started herceptin/perjeta/taxotere
May 2013- started herceptin/ perjeta/navelbine
August/September 2013- started kadcyla
March 2014- ended kadcyla, had gamma knife to three spots in brain
58 yrs old, post menopausal at dx
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03-06-2014, 02:16 PM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: experience with brain mets?
Yes, Debsing, I am still here after being treated for brain mets. One thing though - I had NO symptoms. Since I was already stage IV the annual brain MRI picked up the mets.
Look up JoanM and BarbH. They also had mets and have had nothing come back after being treated.
Let us know how the MRI goes. Bet you just have early allergies or something else benign!
__________________
"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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