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07-26-2009, 08:51 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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6-month checkup
I've tried several times to write this post but it's a little harder this time. It is so much easier to report good results from our scheduled Pet scans and blood tests, but my news is a little less than good this time. I had my 6-months checkup a couple of weeks ago. It was my 5-year cancerversary and I really expected to be NED again. However, this time the PET showed a growing cancer nodule again in my left lung, and a CA marker of 68, not as good as I expected. My oncologist is a very upbeat oriental man whom I really like. He told me the news and then said matter-of-factly "We'll start doing cancer markers once a month and move the PET scan and blood tests to every three months, unless the CA marker rises. We'll watch it closely." Then he added:"We still have a lot of options and there is Tykerb". So being naturally an optomist, I expect the best but of course, naturally prepare (at least subconsciously) for the worst. I will have my monthly power port flush tomorrow and a cancer marker test also. I'll let you know the results and if the plan changes, and of course hope for your thoughts and prayers. As most of you know I have been fighting BC since 1985, my third round in 2004 being her2. I will be 80 December 9th so I almost feel quilty hoping for another miracle.
I remember that there was a site which listed info on what all the numbers mean on the blood test reports. Several of mine were different than usual, so I would appreciate knowing that site so I can check the numbers out.
I do know that I feel more confident this time around than I ever have, since being on this great website for these last 4 or 5 years. I appreciate it so much, not just the info we help each other with, but the love and friendship I feel here. We pray together, laugh together, hope together and many times weep together. As has been said many times, no one else really knows what we go through. Thank you, Joe and Christine, and thank all of you who are friends and sisters and fellow warriors. Hugs, Tricia
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07-26-2009, 08:59 PM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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6-month checkup
Chin up !! Although the news is not all good please try not to let this get you down. You have proven that you are a fighter. Perhaps you can talk your oncologist into giving you Tykerb sooner rather than later. Hang in there and keep putting one foot in front of the other.
You have my good wishes and the good wishes of everyone on this board.
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07-26-2009, 09:01 PM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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6-month checkup
By the way, there is a pretty good internet site called Lab Tests Online that helps to explain most blood tests
I think the address might be http://www.labstestsonline.com |
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07-27-2009, 12:27 AM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Tricia, I am so sorry to hear you have to deal with this. But one thing I know is you are a true warrior/fighter...and if anyone can kick CA into the twilight zone again its you! You've beat it three times before and you will again.
It's sounds like you have a very positive onc and one that's ready to get the job done. You hang in there and know you will be in my thoughts & prayers. Sending you lots of positive energy to beat this.
(Big hug coming your way!)
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-27-2009, 04:56 AM
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#5
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Sweet Tricia, it is so like you to post your news with such grace. I am so sorry to hear this newest fight for you and will be praying for your miracle right along with you. Sounds like you are already gearing up for battle just like the Warrior you are. Remain tough Lovey and continue to show bc exactly who is boss!! I love you my Friend and I walk besides you.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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07-27-2009, 05:03 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Tricia - Sorry to hear your tests weren't clear. I agree with Elaine that asking to start the tykerb early might be a good idea to hopefully prevent any further activity. You have many options if needed. Your onc. sounds really positive and will watch you closely. Keep your positive thoughts up; you will deal with this bump in the road and get back to your NED ride. Wishing you the best health!
__________________
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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07-27-2009, 08:19 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Tricia,
Thanks for posting, whatever the news. We'd be thinking about you either way. I love your onc's attitude, and yours!
Glad you at least said you "almost" felt guilty asking for more miracles...because you never need to feel guilty about that, and being greedy for your life is no vice.
Take care, keep us posted!
Chris
__________________
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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07-27-2009, 10:33 AM
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#8
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Hi Tricia,
I'm so sorry you have more stress and tests to worry about but none of us can ever have too many miracles 
You'll of course be in my thoughts and prayers for only good results and please keep us posted
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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07-27-2009, 10:48 AM
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#9
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Tricia, You are such an inspiration to so many of us. Keep that miracle in your mind and we are all praying for you. Your journey since 85 has been remarkable and gives everyone hope. You are such a special, kind soul....giving me the fortitude to keep moving forward even during the times of fear.
Much love,
Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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07-27-2009, 11:52 AM
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#10
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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sorry to hear this. i will say a prayer that this can be nipped in the butt now.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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07-27-2009, 02:55 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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So good to see you posting again Tricia
but sorry the news was not what you wanted.
Your onc sounds so reasurring and I could feel his "calm" through your post. You DO still have lots of options . I am sure he will take good care of you.
You have been a constant supporter for so many of us and so gracially. We are all here for you always.
Keep us posted on your progress and keep letting us see your beautiful smile.
Take care
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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07-27-2009, 03:44 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Oh my goodness, Tricia...not the news you wanted to hear! You are a super warrior woman though and I am sure you will give it another swift kick in the %#$!!! Best to you! XO Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-27-2009, 03:59 PM
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#13
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Sweet Tricia....You are one of the sweetest souls here at her2support. You always are their for each of us with your optimistic and loving attitude. I pray only the best for you and that treatment will be easy on you as you work your way back to your NED status.
Love you Tricia and a gentle, loving hug I give to you.
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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07-27-2009, 06:41 PM
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#14
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Tricia, if you were 101, 210, etc I'd still be cheering ya on to go for it and never even consider feeling that "G" word! You give to us in giant amounts and we need you! I read every single one of your messages and I miss you when you're away. ma
__________________
MA in TX.
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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07-27-2009, 06:56 PM
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#15
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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It sounds as though you have a lot of living yet to do, Tricia. I say go after that Tykerb. The one thing I have learned from Cancer is that LIFE is a precious gift worth fighting for. Please keep us posted on what transpires.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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07-27-2009, 07:05 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Tricia,
You have been an inspiration to me since I first learned about this site five years ago. I was very sorry to hear that you have to deal with the cancer again. However, I feel that your oncologist will find a treatment to help you reach NED again.
I'm sure that you are quite busy, but I always do look forward to your posts.
Best regards,
Barbara H.
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07-27-2009, 07:49 PM
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#17
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Hi my birthday buddy! I am so sorry to hear your news but you are one tough lady and you can beat this thing down. Who says that there is a limit to how many miracles we can ask for and receive?
You are one of the sweetest ladies here and I always look for your posts and I keep you in my prayers.
Looking at your picture, I still find it hard to believe that you're the age that you say you are.
Please do keep us posted, we want to know everything (we are so nosy), but that's only because we love you and we care so much.
I'll be watching for your posts.
Love and hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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07-27-2009, 08:42 PM
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#18
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Tricia,
I am sending lots of hugs and good wishes to you. You are one brave warrior woman - keep the faith.
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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07-28-2009, 06:20 AM
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#19
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Tricia, there is always another miracle around the corner. Sorry about your news. You are in my thoughts and prayers. Stay strong.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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07-28-2009, 08:06 AM
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#20
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Tricia, you have been an inspiration to me. You deserve all the miracles a person can get. You are a model survivor and I have faith in your strength.
Love, Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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