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Old 09-02-2007, 05:37 PM   #1
KellyA
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Brain mets first?

I was just curious. I recently heard of a girl whose breast cancer spread to her brain first, before any organ or bone. That seemed very uncommon. Does anyone know how common this is? Sounds like a Her2 thing.

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

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Old 09-02-2007, 05:47 PM   #2
Sheila
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Christine, our founder is a perfect example of this, and I believe there have been a few more. That is why Christine and Joe are so adamant about regular brain MRI's.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-02-2007, 05:50 PM   #3
caya
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Kelly,

I asked my onc. this very question about a month ago. He told me that Her 2+ BC is more likely to go to the brain than other types of BC, but highly unusual for that to be the first place for mets - usually the order is lungs, bones, organs, then brain last. Again, this is not written in stone, just what normally happens. In his practice, and he is one of the top breast oncs. in Canada, he told me he has had only 1 Her2+ patient have brain mets first.
He then explained that for me, being stage 1 and with other good prognostic factors, and Herceptin, I should not think about brain, or any other kind of mets, as he is working on an over 90% cure rate for me. So I am trying hard to focus on this and remember his words of wisdom. He's been right on target every step of the way so far.

All the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 09-02-2007, 06:04 PM   #4
tousled1
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As you cn see from my signature I developed lung mets and a single brain met almost at the same time. Who is to say that they both weren't there at the same time. I just happened to have the scans scheduled at different times.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-03-2007, 05:54 AM   #5
pattyz
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Similar to Kate, I was dx'd with brain mets with a brain MRi just two mos. after dx of mediastinal nodal mets, w/ uncomfirmed 'spot' on lung and pelvis.

The largest brain met was 1.5cm at scan, so I have always felt it was there for some while. The small amount of visual effects in one eye had been there for about 7 months... just very infrequent. It was this 'symptom' that when I finally reported it to my onc, he ordered the MRi.

In five yrs since Navelbine/Herceptin put my body NED, I've only had brain mets.

close but maybe 'no cigar' to your question.

pattyz
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Old 09-03-2007, 01:45 PM   #6
Emmay
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My sister, who is Her2+ER-PR-, had a lumpectomy in 7/03, a local recurrence required a mastectomy in 2/04, after which she began Herceptin, which does not cross the blood/brain barrier. Since then the only sight of recurrence has been her brain, so the presumption is that Herceptin has been keeping the rest of her body clear.
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Old 09-03-2007, 07:35 PM   #7
Ceesun
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Patty, What do you mean about the eye? Cathy Ceesun
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Old 09-03-2007, 09:56 PM   #8
Erin
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Yes, I would like to know about the "eye" symptom as well.
Thanks
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Age 50, premenopausal
Dx 1/2/07 DCIS/IDC
Lumpectomy 1/4/07 1.1cm tumor
SNB 3 nodes clear
Stage 1, Grade 2, HER2+++ (FISH 6.8)
ER + / PR +
TCH, 6 rounds, finished 6/1/07!!!
Herceptin to continue for 1 year
36 rads finished 8/22/07
Port out 8/27/07
Switched to Herceptin weekly for joint pain
Ooph 11/13/07
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Old 09-04-2007, 03:20 AM   #9
Becky
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For Her2+ bc, the most common met site is the lung but 10% of the time, the first place to met is the brain.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-04-2007, 04:25 AM   #10
madubois63
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Occular changes are very important and NOT to be ignored!! My dear friend Maryann lost her battle to bc recently, and I blame the oncologist. She was complaining of eye problems and he ignored her. It took a few months for the onc to listen and order a brain MRI, but by then it was too later FOR HER. Her first sympton was trailing vision. She would walk out the front door and see the shoes by the door on the lawn a few seconds later. Then she sarted to get small headaches. I have been having "non-existant" headaches for some time now just so that I can have a brain MRI and the insurance will cover it (I didn't tell you that - lol). My onc knows the game and is very happy with that. Please, please, please have brain MRI's regularly!!!!
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 09-04-2007, 06:29 AM   #11
pattyz
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Eye symptom for me: I had a peripheral vision half moon light show (the best I can explain it) OCCASIONALLY for those nine months or so. Just the left eye...where a 2nd small brain met was found in that area of brain.

Eye mets are also a possibility with visual symptoms!

Any visual thingie should be taken seriously if it lasts more than a few weeks......... I was 'fooled' because my episodes were spaced so far apart.

pattyz
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Old 09-04-2007, 06:30 AM   #12
pattyz
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See my reply to ceesun please.
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Old 09-04-2007, 02:45 PM   #13
Mary Anne in TX
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I'm convinced!

Ok, I'm totally convinced to have a brain MRI in the next couple of months! I have had headaches along the base of my head in the back. I will "demand my rights" at the next onc meeting! He always agrees and I do want to be sure about those headaches. I've assumed they were from Herceptin or from being "mom" to an 8 year old (her birthday is tomorrow!)! You guys sure know how to get it said!!!!
Believing in NED for all, ma
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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