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03-06-2011, 12:11 PM
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#1
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Senior Member
Join Date: Jul 2006
Posts: 869
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Group Hug Needed!
Hi Friends, Been in Florida over the past month and am so happy to leave the cold and snow of Michigan behind. I have a female oncologist here who is giving me the herceptin and it was so nice cause when I first met her, she held up my file and said " I have all of your info and I have read it all"--how reassuring!! " Things look good." It is interesting to see how another oncology office works. Anyway, I am so sorry to read about the distressing news of members on the website. I guess it really is bothering me cause I had a "cancer dream" last night. I wish we could all do as well as many of our members --I guess it just is a mystery as to why some of us do well and others falter. This is like many other chronic illness condtions, I suppose. Please understand I am very happy for those who are NED, and I don't want anyone to feel badly.....guess I just needed to get this off my chest...ha, no pun intended. In friendship, Ceesun
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03-06-2011, 01:29 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Group Hug Needed!
Sending (((((hugs)))) Ceesun, and I so agree thats it's so hard to hear of some of our members here who are struggling so much when other's do so well.
It makes me feel there is so much more yet to be understood before we can hope for a cure!
__________________
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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03-06-2011, 02:45 PM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Group Hug Needed!
Oh yes !!!!!!!! Group hugs all around !!! Everyone is included !! Everyone needs a hug !!!!!!
You mentioned that the oncologist in Florida thinks differently than your oncologist in Michigan. That is why it is good to get another opinion once in awhile no matter how we are doing. Even oncologists in the same office think differently and respond to the same patients differently. That is one of the reasons I now see two different oncologists in the same office on a fairly regular basis.
Take good care of yourself no matter where you are.
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03-06-2011, 03:29 PM
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#4
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Group Hug Needed!
Ceesun,
Group Hugs to all. I am feeling very down today so reading this really lifted my spirits.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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03-06-2011, 04:20 PM
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#5
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Group Hug Needed!
Hug, Hug, Hug, Hug, Hug, Hug, Hug, Hug, Hug, Hug, Hug, Hug, Hug... etc. 
Ceesun, it's good to hear from you. Yes, it feels reassuring when our doctor has 'read' our files. I just posted on another 'Board' about how touched I was 1 1/2 year ago when a new specialist came to the room and said to me: "You've been through a lot." Because of that statement, I knew he had read either my file or the questionare I had filled out (or both). We could then focus on the 'present' problem that I was seeing him for.
__________________
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; 03-06-2011 at 04:25 PM..
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03-06-2011, 06:06 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Group Hug Needed!
Ceesun,
Glad you got to move to warmer weather and thaw out. Sounds like you found a wonderful onc that cares about the patients she treats. That must of put a smile on your face.
Like you...at times I can't help but questioned why some members do stay NED while others have a constant battle on their hands? It bothers me because it just tells me how little they really do know. So much more needs to be understood before we can make some real head way it seems? So many of the articles I've read the last 5 yrs sound so promising & positive...yet doesn't seem like we are moving very quickly. When your stage IV it can be a bit over whelming to say the least. Hugs back at you and the her2 gang.
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.
Last edited by Chelee; 03-07-2011 at 11:29 PM..
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03-06-2011, 07:42 PM
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#7
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: Group Hug Needed!
We all need group hugs! Cheers!
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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03-06-2011, 10:29 PM
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#8
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Senior Member
Join Date: Oct 2010
Posts: 92
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Re: Group Hug Needed!
Hugs to everyone. I definitely need one today, so I thank you!
__________________
Dx June 2010
ER- PR+ Her2+++, Stage 3C
A/C x 4
Mastectomy 8/18 nodes+
Taxol/Herceptin x 4
35 rads
Continue Herceptin for 1 year
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03-07-2011, 07:07 AM
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#9
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Group Hug Needed!
Hugs and love to all of us.
Amelia
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03-07-2011, 07:36 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Group Hug Needed!
Huge hugs to everyone. Pam
__________________
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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03-07-2011, 08:29 AM
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#11
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: Group Hug Needed!
HUGS ALL AROUND!!!!! Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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03-07-2011, 09:02 AM
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#12
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Re: Group Hug Needed!
Great idea Ceese ... a round of hugs for all my pink friends.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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03-07-2011, 09:55 AM
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#13
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Group Hug Needed!
Wrapping my arms, heart and thoughts around you all!
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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03-07-2011, 04:30 PM
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#14
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: Group Hug Needed!
Cancer is such an ugly word! We don't have to let it take our joy away! I am with you all.....hugs all around. It will keep us powerful in continuing to fight and support each other!
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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03-07-2011, 06:37 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Group Hug Needed!
You know what? I needed hugs. So I'm in. And you know what else? I feel better just by giving some.
(((love you all)))
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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03-07-2011, 06:54 PM
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#16
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Senior Member
Join Date: Jan 2010
Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
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Re: Group Hug Needed!
My arms are around you all....
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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03-08-2011, 09:44 AM
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#17
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Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
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Re: Group Hug Needed!
Hi Lots of hugs and positive thoughts to all on the site. I have been away in Florida but have been following the posts. I know many of you ladies have been struggling with new battles and ongoing battles and I pray for successful outcomes for all! I wanted to respond to many posts when I was away but I found I could not log in on my husband's laptop when I was away. Is there some kind of security thing that does not allow us to log in if we are not using our own laptop. I tried numerous times to log in and it would not work. Lois
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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03-08-2011, 08:18 PM
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#18
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Re: Group Hug Needed!
hugs, hugs, hugs. A BIG BIG HUG!!!
__________________
My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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03-08-2011, 10:07 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Group Hug Needed!
Adding my hugs to everyone!
__________________
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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03-08-2011, 10:10 PM
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#20
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Group Hug Needed!
Hugs and more warm hugs going the way from sunny Mexico!!!
__________________
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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