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07-01-2015, 06:56 AM
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#21
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Senior Member
Join Date: Feb 2014
Location: Minnesota
Posts: 184
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Re: 10 yrs brain mets - still NED ...
Inspirational-Thanks and Congrats!
Lisa
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07-02-2015, 07:56 PM
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#22
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Senior Member
Join Date: Feb 2014
Location: Washington State
Posts: 49
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Re: 10 yrs brain mets - still NED ...
Wow! You are truly amazing! Here's to many more!
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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07-05-2015, 05:10 PM
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#23
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: 10 yrs brain mets - still NED ...
Great news Steph! As you can tell from the posts, you are an inspiration to many. Keep good news and hope alive. Continued prayers for you and our sisterhood here on our Her2 site. Do the happy dance!
Hugs ,Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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07-06-2015, 02:33 PM
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#24
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: 10 yrs brain mets - still NED ...
Nothing new is a symphony! So happy for your good news. Well done my Sister.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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07-06-2015, 09:45 PM
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#25
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: 10 yrs brain mets - still NED ...
You rock Steph!
__________________
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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07-07-2015, 04:22 AM
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#26
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: 10 yrs brain mets - still NED ...
Fabulous news!
we're just back from Italy and here for the summer should you be popping over this way again.
love sarah
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07-07-2015, 06:36 PM
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#27
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: 10 yrs brain mets - still NED ...
Big congrats Steph! Thanks for sharing, and may you have many many more years of NED!!!
all the best
caya
__________________
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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07-08-2015, 09:06 AM
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#28
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: 10 yrs brain mets - still NED ...
Steph,
Many congratulations to you.
I know you must continue to be thrilled (and as active and busy as ever).
Love,
Karen Z
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07-10-2015, 08:07 AM
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#29
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Member
Join Date: Apr 2015
Posts: 6
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Re: 10 yrs brain mets - still NED ...
Congratulations, Steph! Good news is always welcome.
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07-11-2015, 06:49 AM
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#30
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: 10 yrs brain mets - still NED ...
Dear Steph,
I am a bit late to the fantastic news....
You put a huge smile on my face when I read your post.
So happy for you and healthy blessings continue.
Hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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07-11-2015, 09:57 PM
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#31
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 10 yrs brain mets - still NED ...
Thank you all! If I can give one more person some hope and a little peace of mind, my work is accomplished!
Kathy T - No I had no symptoms, just like Becky mentioned in her post. My revelation of two good sized brain mets was a shock to everyone.
I rarely have a headache and if I do it means I am getting the flu or have mega allergies!
__________________
"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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07-12-2015, 07:12 PM
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#32
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: 10 yrs brain mets - still NED ...
So good to hear that, StephN!
You are one of the backbone here. I do feel that Joe and Christine and their family can see the heritage they created with this website among us all as the years go by...
A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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07-22-2015, 07:03 AM
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#33
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Senior Member
Join Date: Nov 2009
Location: western ma
Posts: 280
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Re: 10 yrs brain mets - still NED ...
i have used you as an example to my boyfriend in one of my many pep talks about his stage 4 cancer (not in the brain, but still). stories like yours help him feel strong and in the fight and swear one day he will get to the base camp of denali in alaska. congratulations.
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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07-22-2015, 08:37 AM
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#34
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: 10 yrs brain mets - still NED ...
So happy to hear your good news! You are an inspiration to us all.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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07-22-2015, 04:33 PM
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#35
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Senior Member
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 140
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Re: 10 yrs brain mets - still NED ...
Congrats StephN!!!!! That's amazing and gives us all hope. what vaccine trial did you do?
__________________
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07-27-2015, 05:49 PM
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#36
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 10 yrs brain mets - still NED ...
Vaccine trial was out of the University of Washington.
A HER2 Peptide vaccine plus Ampligen. There were four arms for different doses of the Ampligen.
I don't know much about the outcome, except that I am still here!
Went to my cancer center today for an infusion of Zometa, which I am getting twice a year. Who do I see but the VERY FIRST nurse to access my port to see if it would flush and draw prior to my first treatment. She is working on some clinical trials, but heard my pump beep when the drug was finished. She was a young mother all those years ago and now her daughter is about to get married.
__________________
"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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07-28-2015, 12:03 PM
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#37
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Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
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Re: 10 yrs brain mets - still NED ...
YEAH!!! So happy to hear this.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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08-06-2015, 03:43 PM
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#38
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Senior Member
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
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Re: 10 yrs brain mets - still NED ...
Love reading about your story. Looking forward to beating the odds alongside you.
__________________
- Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
- Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
- 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
- 10/27/15 atypical uptake in right cerebellum - inflammation?
- 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
- 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
- 3/2016 - stable scan
- 5/2016 stable scan
- 7/2016 pseudoprogression?
- 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
- 11/2016 Cyberknife to temporal lobe, HBOT just prior
- 12/2016 - lesions starting to show shrinkage
- 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
- Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
- Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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08-10-2015, 05:12 PM
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#39
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Senior Member
Join Date: Nov 2014
Posts: 83
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Re: 10 yrs brain mets - still NED ...
Bumping this up for the new brain met-sters. Wish this was a sticky or whatever you call it. It is one of my (and my husband's) favorite threads.
__________________
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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09-11-2015, 11:26 AM
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#40
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Junior Member
Join Date: Sep 2014
Posts: 4
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Re: 10 yrs brain mets - still NED ...
2 brain mets found & had gamma knife this week, still NED everywhere else.
was dx'd stage IV (liver) from the start 1/2014, THPx8 to NED! then, bi-mx/alnd, rads, and ongoing HP.
hoping gamma knife did the trick and am dreaming of following your path. you've definitely given me some hope. even better, overjoyed to share your story with dh & family - they are beyond thrilled to hear about you. In many ways, I think this disease can be harder on the loved ones than the patient.
I was 34 at dx. the thought of ten (progression-free years!? didn't know it was possible!!) gives me some serious warm 'n' fuzzies.
thank you for the priceless gift - so grateful to you for posting!
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