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12-16-2014, 09:11 AM
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#1
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Senior Member
Join Date: Sep 2011
Posts: 93
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3 + years stage IV 2 + years brain mets
Just wanted to provide some encouragement for those who are currently battling the C word. My mom was diagnosed at age 61 with stage IV HER2 breast cancer with 2 small mets to liver and several to bones. A year later the mets went to her brain in the cerebellum (balance and motor area). She has had whole brain radiation and 2 gamma knife radiation procedures. She is currently on perjeta/herceptin combo (abt year now), flasodex, and zometa for her bones. She just had a 6 month scan last week and all lesions are stable, no growth. She will turn 65 next week. This forum has provided me with knowledge and comfort during some really hard times. Hang in there. God Bless.
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12-16-2014, 09:41 AM
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#2
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Senior Member
Join Date: Nov 2014
Posts: 83
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Re: 3 + years stage IV 2 + years brain mets
Music to my ears that your mom is stable. Happy birthday to "mom" and many more! Thank you for this inspirational post as we have a loved one newly dx with brain mets. But onc says that my wife can't get herceptin or perjeta now because it's only localized in the brain. We are going to continue to ask for herceptin because won't it help to keep the body clear? Should we go to another onc?
__________________
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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12-16-2014, 09:55 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: 3 + years stage IV 2 + years brain mets
For Her,
If you have any doubts about your medical team, a second opinion would certainly be a viable option.
My experience has been that the most advanced, cutting edge treatment/care is typically found at facilities that engage in research and are connected to a teaching entity.
When I was dx'd, my local onc (not a breast cancer specialist) didn't even test me for HER2. It was not until I elected to go to Wake Forest that I was tested and stepped into the newly released protocol for Herceptin in 2005. I have no doubt that changed the course (and probably length!) of my life.
You and your wife are your own best advocates.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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12-16-2014, 12:07 PM
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#4
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Senior Member
Join Date: Sep 2011
Posts: 93
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Re: 3 + years stage IV 2 + years brain mets
Mom went to Mayo clinic in Rochester MN as soon as she was diagnosed by our local hospital. They dictate her therapy. Hope this helps.
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12-16-2014, 12:22 PM
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#5
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: 3 + years stage IV 2 + years brain mets
Look through this list, forher, to see if you can find one that's reasonably local:
http://cancercenters.cancer.gov/canc...rs-names4.html
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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12-16-2014, 01:29 PM
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#6
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Member
Join Date: May 2014
Posts: 16
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Re: 3 + years stage IV 2 + years brain mets
I second the NCI research centers. Their imaging is better and you tend to get cutting edge care.
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12-16-2014, 01:38 PM
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#7
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: 3 + years stage IV 2 + years brain mets
How are you holding up, catalina?
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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12-16-2014, 01:47 PM
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#8
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Member
Join Date: May 2014
Posts: 16
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Re: 3 + years stage IV 2 + years brain mets
Ok. We have concerns about her confusion and lack of mobility. This is a pretty scary surgery and we did not understand the recovery needed. The Dr's seem to think things are great. PT/OT might help and that is going on now.
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