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07-10-2008, 04:13 PM
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#1
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Tiger-Lilyecuadorian
Just wondering how you are doing Lily. I hope and pray you are well. I hope your family is well and enjoying the summer. Thoughts and prayers, Bill
__________________
For Nicola
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07-10-2008, 08:00 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Hey Lily,
I've been thinking of you too, and wondering if you were able to get an appointment with Dr. K. Hope all is well.
__________________
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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07-10-2008, 08:53 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Thanks Bill and Sassy. After the failure of the Navelbine two small lesion developed in my liver resulting six total. Because of my old insurance we weren't able to get anywhere with any procedures. Fortunately my dear husband get new insurance with his BC/BS of NC. With that I got approval for SIR Sphere. That cost 100g's. At the same time I'm waiting for approval for "Leukocyte Infusion Therapy" (LIFT). Already I submitted and waiting for response. It's taking a little time because it's a new trial and there is red tape to go through. They don't realize, or maybe they do, that I don't have time to wait. I've spoken with these people and they are nice. They've gotten allot of response from different places. So, it's hopeful.
Now, since I got the news that I'm approved for the SIR sphere I'm going to Disney World! Really! My family and I are meeting more family in Orlando. The SIR Sphere starts on July 30th. Last week my tumor markers was stable from the previous (4 weeks ago) check.
Sassy - I want to note that the new Onc was more supportive of the trial at Wake forest (LIFT) and the SIR Sphere. The down side, I'm only on Femara and that makes me a little on edge. I want to get started! I've haven't posted lately about me because I didn't have any good news to share.
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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07-10-2008, 09:42 PM
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#4
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Lilly,
You are always in my mind and prayers. Do not stop writing. Great you are seeing your family in Florida. Have faith, I am sure things will work out for you. I am so happy you have been approved for the SIR Sphere.
Looking forward to hearing from you!!
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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07-11-2008, 04:41 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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Way To Go Girl!!
........wait.....do I see a 'Monster' in the making (smiling so big)!! I am so happy to hear of your approval and that vacation you are so desperately in need of! Have not spoken to you in a while so this is even better news to know of that approval and that things are moving forward. You are on the up girl. You are a fighter and a winner. I am so pleased to be able to share all these wonderful things since you have changed doctors. See ya "Dr No"...you are outta here....BaBye!! Everything is going spendid since we last spoke. Go Get 'em Tiger!!>>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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07-11-2008, 05:58 AM
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#6
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Senior Member
Join Date: Nov 2004
Posts: 190
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I am so glad you got a new Onc. I am sending positive vibes your way !
Kim
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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07-11-2008, 06:10 AM
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#7
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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so good to hear it all
Thank you Lily! I am excited about your new courses of treament and will be looking forward to hearing about how all of that falls together and WORKS! And Disney World with family sounds like just the tthing-how fun. Lots of love and wishes for fun and successes coming your way!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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07-11-2008, 09:43 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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News!
Hi Lily,
It's really important to post when you are worried or when your treatments are not going so well. That is when you need the most support. I had to wait months to get into the H-DM1 trial and was really progressing by the time I started. It has been working for me and I noticed results within two days. I hope that this new trial will work for you and you will have positive results.
In addition, I feel that it is helpful to your body when you have a break from all this chemo even if it means that you may progress a little. Remember, while we may all have HER2 breast cancer, it is still an number of different diseases in the breast. You just need to find the right combo for you.
Enjoy that wonderful trip to Disney, and try to put all your cancer worries behind you while you are away.
Best wishes and thinking of you,
Barbara H.
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07-11-2008, 02:13 PM
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#9
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Lily,
I hope you have a great vacation. You will be in my prayers. I am really interested in hearing about your new treatment.
Amelia
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07-11-2008, 02:26 PM
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#10
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Thank you, Bill, for checking on Lily.
Thank you, Lily, for giving us updates.
__________________
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
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07-11-2008, 02:29 PM
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#11
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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Beautiful photo Bill,
Have a great holiday Lily.
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07-11-2008, 02:34 PM
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#12
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Lily, good to hear news about you--have been wondering how you are doing. You always have a sweet word for everyone on here. I hope the spheres does a terrific job on helping your liver get better. I have seen you with 2 children in 1 of your pics--they must be delighted about going to Disney World. I know it is hard to face progression of the mets, new treatments, the tests, and on and on. I have tests next week to see if the ixempra is working. Stay brave dear sister, many care, many pray for you. Becca
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07-11-2008, 04:19 PM
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#13
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Best of luck to you with your treatment and have a
wonderful trip to Disney. Keep us posted. My healing
thoughts are headed your way.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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07-11-2008, 06:18 PM
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#14
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Lily, enjoy your vacation and remember you are in our prayers. Good luck with the new treatment.
__________________
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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07-11-2008, 07:49 PM
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#15
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Lilly,
I'm happy that you've been accepted for the trial.
Enjoy your vacation in Florida!
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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07-11-2008, 08:07 PM
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#16
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Lily,
I am so happy that you got accepted into the Sir Sphere. I am praying that the treatment will be the magic bullet for you. Know that we are thinking of you and wishing you well.
Enjoy Disney with your family.
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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07-11-2008, 08:15 PM
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#17
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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So glad to see you post. You have been in my thoughts. I'll be praying you get great results from your new treatment plan.
Have fun with the family on your trip.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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07-13-2008, 09:53 PM
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#18
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Lily,
Wishing you all the best on your upcoming treatment.
Have a wonderful time at Disney World!! Yes!!
Also Lily, we would all love to hear from you....good news, bad news, no news,......whatever your heart and mind might be in the mood for....we welcome it all. 24/7.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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07-22-2008, 01:13 PM
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#19
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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well, thank you for all your best wishes , I did went to disney and I did Ok , because I have like 3 o 4 times some painfull moments on my belly close to the liver under my two breast, but most of the times was in my whole stomach like gas incapsulate after I induce vomit I did past some gas I was felling better I stop the femara because 2 motrin didnt help ...so today I did call my doc and the nurse (who is not that nice, like my Doc) told me that after the other Doc "on call "review my pet scan he said that I need to take a strong medicene for pain ..and I call 8am and I got my call back 4pm ...for pain medication??????I told him that at this hour 4pm not to worried about it so I can wait until I see my doc tomorrow ..because was 4 pm the day was over already ...so I'm so panic with incoming news tomorrow ...my husband is coming with me ...I guess I have to forgot about the sir spheres ? and LIFT trial also (because take so long and I can't wait ) ?? and see and find another drugs ...the nurse only told me that the liver tumors increase in sizes ....that is it ...I ask about the thing that I felling in my stomach and he said you need to speak that with the doc ??? ..I'm so so so so so hopeless ..I try to check new thing outhere but anything give me some relieve ...so mad , impotent , unhappy ....sorry to complaint a lot but just dont felt strong and you all know this type of moments and you all are my windows where I can let my main problem out and get some refreshment ,I can't not complaint with my family because IF I'm tired to complain to be tired how about them ??? ...is not fair to ruin there vacation, life etc ......
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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07-22-2008, 01:48 PM
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#20
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Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
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Lily,
My heart aches for you. Keep us posted.
__________________
Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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