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		|  10-02-2008, 09:37 AM | #1 |  
	| Senior Member 
				 
				Join Date: Jan 2007 Location: UK 
					Posts: 617
				 
		 
		 
		
		 
		
		
	
		
	
	 | 
				
				My dearest, news from the scan..
			 
 I am still clear of the monstruous beast!!!!
 My four monthly scan said " go and have more fun, it's working.."
 
 Guys I was so releived to still be a stage 4 NED.  I had been feeling my liver a lot prior to the scan and went to the hospital to get my result bracing myself for the worst...
 
 I cried when they told me the amazing news..
 
 By the way I had the best summer EVER!!!!! I went to lots of music festivals with my friends and danced for sooo many hours, days really.... my body is all toned from dancing!
 
 I however have new goals in the next 4 months..will let you know how it has gone in 4 months..
 
 Lots of love for all of you
 
				__________________  
35 y/o 
June 06: BC stage I 
Grade 3; ER/PR neg
Her-2+++; lumpectomies 
Aug 06: Stage IV 
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006 
NED til Oct 09 
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised.. 
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo.. 
  
superior vena cava blocked:  stent but face remains puffy
  
April 2012: Teresa Trial, randomised to TDM1 
Nov 2012 progressing on TDM1 
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes. 
  
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
 
 
  
'Under no circumstances should you lose hope..' Dalai Lama
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		|  10-02-2008, 09:39 AM | #2 |  
	| Senior Member 
				 
				Join Date: Oct 2005 
					Posts: 3,519
				 
		 
		 
		
		 
		
		
	
		
	
	 | Brilliant FOB!! Just brillliant! 
				__________________Brenda
 
 NOV 2012 - 9 yr anniversary
 JULY 2012 - 7 yr anniversary stage IV (of 50...)
 
 Nov'03~ dX stage 2B
 Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
 Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
 Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
 Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
 Feb'07~ Genetic testing, BRCA 1&2 neg
 Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
 May'07~ Started Tykerb/Xeloda, no WBR for now
 June'07~ MRI  - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
 Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
 Oct'07~ PET/CT & MRI show NED
 Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
 Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
 Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
 Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
 June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
 Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
 Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
 Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
 June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
 Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
 Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
 Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
 Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
 
 "I would rather be anecdotally alive than statistically dead."
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		|  10-02-2008, 10:07 AM | #3 |  
	| Senior Member 
				 
				Join Date: Apr 2007 Location: LA LA Land 
					Posts: 1,607
				 
		 
		 
		
		 
		
		
	
		
	
	 | Thanks for posting such joyful news! 
				__________________1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
 2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda.  Finally stops spreading.
 2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
 ‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
 ‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
 1/2006 Rads again,  to scar line. NED.
 
 3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
 12/07 Herceptin.Tykerb. Markers go stable.
 2/8/08 gamma knife 13mm stupid brain met.
 3/08 Herceptin/tykerb/avastin/zometa.
 3/09 brain NED. Lungs STABLE.
 4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
 9/09 MARKERS normal!
 3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
 Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
 Dec 2010 Brain NED, lungs/sternum stable. markers normal.
 MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
 May-Aug 2011 Tykerb Herceptin Xgeva.
 Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
 April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
 OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
 12/20/12 add in PERJETA!
 March 2013 – 5 YEARS POST continue HAPZ
 APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
 May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
 June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
 Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
 Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
 December '13 BRAIN MRI ned in da head.
 Jan 2014: CONTINUING on HAPX…
 FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
 3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
 4. scattered lung nodules, up to 5mm in size = stable, no increased activity
 5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
 APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
 October 2014: hold avastin, continue HPX
 Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
 Continue HPX. Adding back Avastin
 Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
 December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
 Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX.  I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
 Markers drop post rads.
 2/24/16 HAP plus X - markers are down
 SCIATIC PAIN DEAL BREAKER.
 3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
 APRIL 2016 - 9 YRS MBC
 July 2016 - continue HAP plus Xgeva.
 DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad.  Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
 APRIL 2017 10 YEARS MBC
 December 2017 - Progression - gonna switch it up
 FEB 2018 - Kadcyla 3 cycles ---->progression :(
 MAY30th - bronchoscopy, w/foundation1 - her2 enriched
 Aug 27, 2018 - start clinical trial ZW25
 JAN 2019 - ZW25 seems to be keeping me stable
 APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
 MAY 2019 - progression back on herceptin add xeloda
 JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
 10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
 12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved  or improved results.  Markers near normal. I'm stunned but grateful.
 10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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		|  10-02-2008, 10:53 AM | #4 |  
	| Senior Member 
				 
				Join Date: Nov 2004 Location: Misty woods  of WA State 
					Posts: 4,128
				 
		 
		 
		
		 
		
		
	
		
	
	 | 
 Knew you had what it takes to "live with" this disease, as frightening as it seems.  As time goes by, we who stay NED have our doubtful moments, but get such a boost from the good news that life gets better than ever each time.
 Have a fantastic 4 months living your life the way YOU want to.
 
				__________________"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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		|  10-02-2008, 11:05 AM | #5 |  
	| Senior Member 
				 
				Join Date: Jan 2008 Location: Carmel, Indiana 
					Posts: 98
				 
		 
		 
		
		 
		
		
	
		
	
	 | Fullofbeans (love that name!),I'm so happy for your good news!  Keep it up!
 Love,
 Beth
 
				__________________DX 9-19-07 at age 40
 DCIS, Inv. Duct. Car. 3 cm
 Positive lymph node biopsy
 Er+Pr+Her+++
 Carboplatin/Taxotere/Herceptin
 10-1-07 -- 1-16-08
 Herceptin every 3 weeks until 9/24/08
 Lump. and node dissection 2-12-08
 BRCA1 and 2 negative
 30 rads finished 4-23-08
 oophorectomy 5-6-08
 Femara started 5/25/08
 Zometa for osteoporosis every 6 mo. started 9-24-08
 
 Married 16 years!
 3 kids - daughter (10), twin sons (7)
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		|  10-02-2008, 12:39 PM | #6 |  
	| Senior Member 
				 
				Join Date: Sep 2005 Location: Central Coast, CA 
					Posts: 3,207
				 
		 
		 
		
		 
		
		
	
		
	
	 | AHHHH.....license to breathe for another 4 months!
 
 Great news!
 
				__________________Chris in Scotts Valley
 June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
 9/2004  Diag: Stage IV extensive  liver mets (!) ER/PR- Her2+++
 10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
 04/05 - 4/07 Herception every 3 wks, Continue NED
 04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
 06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
 01/08 Progression in liver
 02/08 Begin (TDM1) trial
 08/08 NED! It's Working!  Continue on TDM1
 02/09 Continue NED
 02/10  Continue NED.  5/10 9/10 Scans NED 10/10 Scans NED
 12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
 07/11 - 11/11 Herceptin/Xeloda -not working:(
 12/11 Begin MM302 Phase I trial - bust:(
 03/12 3rd times the charm? AKT trial
 5/12 Scan shows reduction!  7/12 More reduction!!!!
 8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
 9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
 11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
 11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
 2/13 Gemzar/Carbo/Herceptin - no go.
 3/13 TACE procedure
 
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		|  10-02-2008, 12:50 PM | #7 |  
	| Senior Member 
				 
				Join Date: Aug 2003 Location: Morris, IL 
					Posts: 3,507
				 
		 
		 
		
		 
		
		
	
		
	
	 | Congratulations...now you have 4 months to live it up...try for 8, then 12.Love your great news!
 
				__________________ "Be kinder than necessary, for everyone you meet  is fighting some kind of battle."Hugs & Blessings
Sheila
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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		|  10-02-2008, 01:26 PM | #8 |  
	| Senior Member 
				 
				Join Date: Jan 2007 Location: Thornhill, Ontario
Canada 
					Posts: 2,320
				 
		 
		 
		
		 
		
		
	
		
	
	 | Great news Beans - I am thrilled that you are still 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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		|  10-02-2008, 01:50 PM | #9 |  
	| Senior Member 
				 
				Join Date: Aug 2006 Location: Sheboygan, WI 
					Posts: 2,582
				 
		 
		 
		
		 
		
		
	
		
	
	 | I'm so happy for you.  Such joy!
 Thanking God...
 
 Mary Jo
 
				__________________ "Be still and know that I am God." Psalm 46:10 Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06 17 Years NED <>< Romans 8:28 
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		|  10-02-2008, 04:41 PM | #10 |  
	| Senior Member 
				 
				Join Date: Sep 2006 Location: Nebraska 
					Posts: 154
				 
		 
		 
		
		 
		
		
	
		
	
	 | Do you happen to know what your Her2 number was? Not the +++, but the number? Mine was 10, just wondered if yours was hight, that's why you are doing so well. 
				__________________ Michele Ulmer
 
 Dx.2003 Stage 3b 35 pos nodes
 
 Dx August 2003 Stage 3B with 35/35 nodes IDC age 39Lumpectomy
 A/C x4 Taxol x12
 35 radiation tx
 1Year Herceptin in trial
 HER2 vaccine trial Seattle
 3 months Tykerb off label
 NED
 
 
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		|  10-02-2008, 05:03 PM | #11 |  
	| Senior Member 
				 
				Join Date: Sep 2005 Location: MN 
					Posts: 731
				 
		 
		 
		
		 
		
		
	
		
	
	 | music to our ears! 
				__________________Pam
 6/01 IBC er+ her2+stage IIIb; mastecomy
 7/01 AC, taxol; radiation
 2/02 tamoxifen
 9/02 stage IV bone mets femara
 1/03 taxotere/herceptin/aredia
 6/03 herceptin, aredia & faslodex
 1/04 navelbine, herceptin, aredia
 2/05 herceptin/aredia
 7/05 xeloda/herceptin/aredia
 3/07 xeloda/tykerb/aredia
 5/08 taxol/avastin/aredia
 2/09 gemzar/herceptin/zometa
 7/09 Taxol/Carbo/Herceptin, zometa
 10/09 navelbine/herceptin & zometa
 2/10 herceptin & tykerb & zometa
 4/10 add xeloda &aromasin
 10/10 dx with dermatomyiositis triggered by cancer
 11/10 restart herceptin, tykerb, zometa
 12/10 surgery-place rod in R femur to stabilize bone
 1/11 radiation to R femur - 20 tx
 2/11 2nd surgery - rod in Left femur
 2/11 tx eribulen --  suspended dx brain mets
 3/11 brain mets wbr 20 tx
 4/11 halaven; discontine 8/11 not working
 8/11 radiation to left femur 20 tx'
 8-9/11 rad to lower spine
 9/11 abraxane/herceptin/zometa
 9/12 xeloda/herceptin/zometa
 12/12 ablation of liver
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		|  10-02-2008, 05:04 PM | #12 |  
	| Senior Member 
				 
				Join Date: Sep 2005 Location: MN 
					Posts: 731
				 
		 
		 
		
		 
		
		
	
		
	
	 | Music to our ears!  Keep on celebrating! 
				__________________Pam
 6/01 IBC er+ her2+stage IIIb; mastecomy
 7/01 AC, taxol; radiation
 2/02 tamoxifen
 9/02 stage IV bone mets femara
 1/03 taxotere/herceptin/aredia
 6/03 herceptin, aredia & faslodex
 1/04 navelbine, herceptin, aredia
 2/05 herceptin/aredia
 7/05 xeloda/herceptin/aredia
 3/07 xeloda/tykerb/aredia
 5/08 taxol/avastin/aredia
 2/09 gemzar/herceptin/zometa
 7/09 Taxol/Carbo/Herceptin, zometa
 10/09 navelbine/herceptin & zometa
 2/10 herceptin & tykerb & zometa
 4/10 add xeloda &aromasin
 10/10 dx with dermatomyiositis triggered by cancer
 11/10 restart herceptin, tykerb, zometa
 12/10 surgery-place rod in R femur to stabilize bone
 1/11 radiation to R femur - 20 tx
 2/11 2nd surgery - rod in Left femur
 2/11 tx eribulen --  suspended dx brain mets
 3/11 brain mets wbr 20 tx
 4/11 halaven; discontine 8/11 not working
 8/11 radiation to left femur 20 tx'
 8-9/11 rad to lower spine
 9/11 abraxane/herceptin/zometa
 9/12 xeloda/herceptin/zometa
 12/12 ablation of liver
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		|  10-02-2008, 05:08 PM | #13 |  
	| Senior Member 
				 
				Join Date: Jan 2008 Location: "Love never fails." 
					Posts: 5,809
				 
		 
		 
		
		 
		
		
	
		
	
	 | Yah, this is the kind of 'music' I like to hear! Thanks for sharing. Let's make the board 'sound' like an i-tune...    
And Flori, I love your new picture.  I love the vibrant colors.
				__________________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; 10-02-2008 at 05:11 PM..
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		|  10-02-2008, 07:58 PM | #14 |  
	| Senior Member 
				 
				Join Date: Sep 2005 Location: Mountains of Virginia 
					Posts: 2,267
				 
		 
		 
		
		 
		
		
	
		
	
	 | I hope you keep NED dancing up a storm! 
				__________________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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		|  10-03-2008, 03:33 AM | #15 |  
	| Senior Member 
				 
				Join Date: Jan 2007 Location: UK 
					Posts: 617
				 
		 
		 
		
		 
		
		
	
		
	
	 | Thank you all for your encouraging messages.
 Sheila I love your quote indeed we are all fighting some kind of battle..
 
 Micheleu no I was not given a number just +++.  I am curious as to why you think that high number is better as I do not really think that I agree with your analysis of why I am still NED, but who knows.. I noted that you went to seattle for vaccination, good stuff.
 
 I love this board and the couragous ladies on here (actually the only site I log in), you americans rocks! I love the way no one accept to give up the fight, take action (with food advice ect..)  Stage 4 NED in the UK is virtually unknown..
 
				__________________  
35 y/o 
June 06: BC stage I 
Grade 3; ER/PR neg
Her-2+++; lumpectomies 
Aug 06: Stage IV 
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006 
NED til Oct 09 
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised.. 
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo.. 
  
superior vena cava blocked:  stent but face remains puffy
  
April 2012: Teresa Trial, randomised to TDM1 
Nov 2012 progressing on TDM1 
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes. 
  
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
 
 
  
'Under no circumstances should you lose hope..' Dalai Lama
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		|  10-03-2008, 08:42 AM | #16 |  
	| Senior Member 
				 
				Join Date: Nov 2005 Location: Northern Calif. 
					Posts: 981
				 
		 
		 
		
		 
		
		
	
		
	
	 | Awesome news Beans!! I am thrilled that you are doing well!! You are an inspiration!!
 Hugs,
 Lexi
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		|  10-03-2008, 10:35 AM | #17 |  
	| Senior Member 
				 
				Join Date: Jun 2006 Location: Bradenton,FL 
					Posts: 977
				 
		 
		 
		
		 
		
		
	
		
	
	 | FOB, WAHOOOIIIIEEEE! You get going on those new goals and ENJOY!
 Hugs,Marcia
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		|  10-03-2008, 10:39 AM | #18 |  
	| Senior Member 
				 
				Join Date: May 2006 
					Posts: 3,142
				 
		 
		 
		
		 
		
		
	
		
	
	 | 
				 My dearest, news from the scan 
 Congratulations. Go enjoy life !! |  
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		|  10-03-2008, 03:17 PM | #19 |  
	| Senior Member 
				 
				Join Date: Feb 2006 
					Posts: 1,014
				 
		 
		 
		
		 
		
		
	
		
	
	 | Way to go!  There's nothing like getting good scan results..sherryg683 
				__________________Sherry
 
 Diagnosed: December , 2005 at age 44
 13+ positive lymph nodes
 Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
 4 months Taxotere, Xeloda, Hercepin
 NED since April 2006!!
 36 Rads to follow with weekly Herceptin indefinately
 8 years NED now
 Scans every year
 
 Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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		|  10-03-2008, 07:32 PM | #20 |  
	| Senior Member 
				 
				Join Date: Sep 2006 Location: Nebraska 
					Posts: 154
				 
		 
		 
		
		 
		
		
	
		
	
	 | I think the higher the number the better one might respond to herceptin. the higher the number the more Her2 receptors for the Herceptin to attach to. We talked about this a couple of years ago on the site. 
				__________________ Michele Ulmer
 
 Dx.2003 Stage 3b 35 pos nodes
 
 Dx August 2003 Stage 3B with 35/35 nodes IDC age 39Lumpectomy
 A/C x4 Taxol x12
 35 radiation tx
 1Year Herceptin in trial
 HER2 vaccine trial Seattle
 3 months Tykerb off label
 NED
 
 
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