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11-25-2009, 10:24 AM
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#21
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: A Good Day but a Sad Day
Sheila,
It's great news that the Tykerb and Herceptin combo is working on reducing the size of your enlarged nodes. Yes!!!
Thanks for the photo with your oncologist. You are really blessed to have such a great relationship with her.
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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11-25-2009, 10:51 AM
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#22
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: A Good Day but a Sad Day
Good news that your treatment is working.
You deserve everything good, you worked
so hard to get this. Its funny how we become
so attached to our Doctors, even when I am
traveling I want my Doc with me. Congratulations
and good and healing thoughts for your future.
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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11-25-2009, 12:54 PM
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#23
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: A Good Day but a Sad Day
Sheila,
Except for the getting pulled over (didn't playing the "cancer card" work?), it sounds like a really good day. The part about your oncologist moving on is so bittersweet - you've been so very fortunate to have this lady in your life. And she is also fortunate knowing you.
See you soon
__________________
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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11-25-2009, 12:57 PM
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#24
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Re: A Good Day but a Sad Day
Sheila, I am so happy to hear that this treatment is working for you. I am soory about your onc though. It is so hard to find another doc that you feel just as comfy with.
__________________
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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11-27-2009, 08:08 AM
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#25
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: A Good Day but a Sad Day
A true test of chemo brain will be can I remember all the questions to me in the replies.
Steph, yes my onc. is retiring....
Brenda, this is the 1st time I have had a problem with the headlights...mine is a turbo VW...more power and speed....it's almost time to decorate with my light up Christmas tree in the vase (my own creation )..it will replace the palm tree and flip flops that are currently there (another person creation)
Flori...thanks to you recommendations, I am taking 5 tablets with no problem....my oncologist said she would pass the step up program on to other onc's since it seems more successful than starting on the 5 tabs right out of the shute!
Elle, because of Flori's recommendation, I am taking the full dose with really no side effects...in 3 weeks, diarrhea only 4 times and a rash on my nose...other than that, no side effects and GREAT results so far!!!
Shoba...I have her home number and know that I can call her anytime, even if its not cancer related.
MJo...my husband's head is still swollen from your compliments....now thats all I hear!!!!
Pink....you are jealous of all the gray hair, right??? Hey, it matches my glasses....
Everyone else, thank you for all the good wishes and happy thoughts....I feel so blessed for all the support and the fact that the Tykerb/Herceptin combo seems to be my new magic! If i forgot to answer anyone, its just the residual chemo brain.
__________________
"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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11-28-2009, 09:47 AM
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#26
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: A Good Day but a Sad Day
Yeah Sheila,
So glad for your good results. This reminds me a little of the good, the bad and the ugly and Clint Eastwood in his younger days. Keep the good news coming and your cute Bug rolling and a special place in your heart for you wonderful ONC.
Hugs,
Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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11-28-2009, 03:43 PM
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#27
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: A Good Day but a Sad Day
Hi Shelia, So sad to hear you are losing your long time "trusted" onc. I can't even imagine what that must feel like. But it sounds like you have a good replacement that will keep you going for many YEARS to come. 
I am so interested in this Tykerb/Herceptin combo your on. This is what Dr. Slamon's office recommended for me if I could not do the TDM1. But...my onc and the City of Hope onc BOTH told me that combo would NOT work without a chemo drug added. (When I called Slamon's office back and told them what these onc's were telling me...they made it quite clear that there was no doubt that this combo would work great.) In fact one person in that office laughed and said, "Obviously we don't know what we are talking about here". lol I got a kick out of her...she is so funny. I even asked my onc & the COH onc to give Dr. Slamon's office a call since they obviously thought I didn't have a clue about what I was talking about. I hope this upcoming ASCO conference has some current info on this for our onc's can get updated. I hate to see so many women missing out on good treatment options when there out there.
Since I was told of the Tykerb/Herceptin combo I'd done alot of searching to see what I could find on it...and it seems most that have done it has been clinical trials and they have all be very positive with great results. So WHY is it my onc and the City of Hope onc is not aware that these two drugs work fine without any help from a chemo drug? I would think they would be current on something like this?
I am glad your not having to deal with nasty side affects...thats great. Lets hope it stays that way. But wow...what awesome results in just 2 1/2 wks! They Tykerb/Herceptin combo isn't wasting any time in knocking down those nodes! Wooo hoo. Keep us updated on those disappearing nodes. You had to fight SO HARD for this...and it's so nice to hear the pay off so far has been terrific. (Keeping you in my prayers.)
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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11-28-2009, 09:53 PM
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#28
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: A Good Day but a Sad Day
Sheila,
Good to hear the 'good' result. Sorry for the 'bad' and 'ugly' part.
Chelee,
I have experienced similar things with my oncologist. He wanted to stick to the '5-year' Tamoxifen protocol before we talk about anything else. It is really frustrating.
Glad to see that you are feeling well enough to post. You sound good. Take care.
__________________
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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11-29-2009, 03:11 PM
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#29
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: A Good Day but a Sad Day
Chelee - glad you got a good laugh out of that one!
" So WHY is it my onc and the City of Hope onc is not aware that these two drugs work fine without any help from a chemo drug? I would think they would be current on something like this?"
Obviously, Dr. Slamon's office doesn't know what they're talking about - nor do the people who will be presenting trial results at San Antonio in 2 weeks! LOL!.
Actually, I think many oncologists who are not heavily involved in studies do NOT stay up on what is coming in the research. Without cutting too much slack here, there is just TOO MUCH going on, particularly if they are not only specializing in breast cancer. However, even the most out of touch oncologist should have the good sense to defer to info you get from THE MAN himself!
It will be fun to walk in there with copies of the study results...
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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11-29-2009, 08:27 PM
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#30
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: A Good Day but a Sad Day
Sheila,
I am so happy to hear the fantastic results of your treatment. I know that you went through a very uncertain period that was quite nerve wracking.
I have quite the image of you in your turbo VW. Made me smile.
Thank you for posting....you remain an inspiration on so many fronts.....Keep up the good results.
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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12-01-2009, 07:49 PM
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#31
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Re: A Good Day but a Sad Day
Sheila, I know just how you feel about your doctor leaving. My surgeon got an amazing offer at Southern California to be Assistant Chief of Surgery so he has been gone since August. He not only did my bc surgery, he also did parathyroid surgery on me. He was with Evanston and was responsible for the new breast center there. He was passed over for the position there when North Shore University Health took over and brought in their own people. It is a great loss to many of Dr Sener's patients. He was not only superb clinically but also as a person. He was extremely easy to talk to and very kind, understanding and caring. I wish I could travel to see him every six months. I am however, very happy to hear that your nodes are shrinking. Keep up the good work. Are we ever going to go for lunch again?
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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12-01-2009, 09:37 PM
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#32
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: A Good Day but a Sad Day
Sheila,
I am so thrilled to read your post. It is just wonderful that the new treatment is giving you the results we are all praying for.
How lucky for you to have a dear friend for your onc.
She is certainly an angel. It is bitter sweet for you.
Is she retiring?
Please keep me updated with your great news and progress....you have made me smile today!
With hugs and love,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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12-18-2009, 01:00 PM
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#33
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: A Good Day but a Sad Day
sheila- glad to hear that at least some things are going good for you. hope that others improve!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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