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02-17-2008, 11:10 AM
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#1
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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New mets!!..... already??!!
I dont know I guess it must happen... but a bone scan I had last week showed up post-operative extension of the mets to my femur and new activity in my third rib and my sternum  - and I only just had my last bone scan in November.
I'm currently on Taxotere and Herceptin every three weeks and am about to start one of the bone strenghteners on Tuesday. I had this recent bone scan as I have been getting extra pain along my thigh. It just all seems to be happening so quickly.
Maybe the treatment takes a bit longer to have some effect?? I dont know... I have yet to talk with my Onc. re the results.
Sorry I dont post too much ladies... I am so tired... but I do read nearly every day and share in your joys and challenges!
Thanks so much for listening.
Blessings all
Hermiracles (Who are 10 months old now! )
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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02-17-2008, 11:57 AM
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#2
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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Maybe ask your oncologists about ixabepilone. I have just had 3 treatments and ct showed 50% reduction in my enlarged lymph nodes. Another member posted that they were stage IV and that they had good response to ixabepilone. Your babies are so beautiful. I hope you find the right combination that will get you back to remission.
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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02-17-2008, 12:53 PM
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#3
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Hermiracles, so sorry to hear that you have more bone mets. Perhaps your onco can give you some news about this that will make it sound not so bad. I think of you often and will pray for you. Your babies are adorable.
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02-17-2008, 01:00 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hello ~
I'm sorry about the progression of bone mets. Also, I wanted to say that "your miracles" are truly precious. Thanks for brightening my day with those beautiful faces.
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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02-17-2008, 02:34 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Hermiracles, I hope you get to see your oncologist soon.
And I just wanted to say how beautiful those babies are!
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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02-18-2008, 05:33 AM
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#6
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Spoke with the oncologist
Hi Sheila, Becca, Marejo and Bonnie... thanks so much for your responses. I got to speak with Oncologist today on the phone.. and I feel.. well.. dissapointed.
I just dont feel confident this guy is going into bat for me.. he is very laid back about it all. Not really concerned about these new mets at all. He is the only oncologist in town and very busy.
He said 'oh well they could have been there before and only just showing up now. The chemo doesn't seem to be working for you.. of course we would continue the Herceptin'... with no suggestion of trying anything else....what we are moving onto Palliation now??? I just feel its like he thinks 'oh well.. she's stage 4... not much we can do' I want to aim to get to NED if I can but I feel like the Onc has given up on me already.
Maybe I'm just paranoid about the medical system... never did have much faith in them anyway.... I dunno I could ring the woman I got the 2nd opinion from but I feel I have to try and clarify things with him 1st.... just what is his attitude??? I feel so anxious now and think why should I have to worry about this.
Blessings all
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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02-18-2008, 06:51 AM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Yep, lots of questions and listening in order here. No matter what....it's a big deal because it's YOU!!! Maybe you could write out all the questions and suggestions you have and go thru it all with both. Geez, sometimes they have no idea how their words and tone of voice impact us. I'm praying for you and lovin' those little miracles! 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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02-18-2008, 07:35 AM
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#8
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Hermiracles,
I'm so sorry to hear about your progression. I would write a list of questions down on a paper for your oncologist. I know if I don't write a list I leave and then find I forgot to ask something. There are many treatments available to Stage IV women and it's just a matter of finding the one that's right for you. Your babies are so beautiful -- I love looking at them.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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02-18-2008, 09:37 AM
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#9
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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I agree about the list of questions. And you deserve a face to face, sit down meeting with this doctor when you ask them. Is there anyone you might bring with you to help "hear"? I found that was really helpful. It's good you have the 2nd opinion person in the wings too. Kep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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02-18-2008, 11:49 AM
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#10
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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I am saddened to read your last posts. You need a little time to absorb things. But don't wait to long. Bonnie R and Kate had a good suggestions. If possible take someone with you when you go in to talk with your onc face to face with your list of questions. Another set of ears has been so helpful for me.
Remember it is like a puzzle and you need someone who is going to find the right piece. That piece (treatment) will stop the progression.
You are in my prayers. The twins are beautiful and growing! I wish we were closer.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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02-18-2008, 09:30 PM
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#11
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Your babies are so beautiful and precious. I am an identical twin. 
You and your babies deserve a dr who is going to fight like hell for you. I'd urge you to find another doctor (I know it involves travel) OR do whatever it takes to get the message to this guy.
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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02-19-2008, 04:02 AM
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#12
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Thanks so much friends for all your suggestions. I spoke with the Breast Care nurse today - at least she was concerned about the new mets - she said - "it must be your tumour is very aggressive" - which is what I've been thinking all along.
She connected me up with the nurse in charge of clinical trials - who at least listened to me - but said there really aren't any trials available that I would fit the criteria. I did say to her - I dont feel Im up to clinical trials yet - that there must be a few more chemos I could try. She agreed.
Anyway she emailed my Onc. who emailed back saying.... continue with Taxotere for one more dose (next Thursday) and then we'll have another scan. So.....?? Im still none the wiser and not too good at negotiating the system at the moment.
Had my 1st dose of Aredia today so I guess that will help some.
Still feeling anxious and worried.... trying to refocus on the positive.
Im alive... and sober  .. today! And my bub bubs sure are gorgeous eh?
Thanks so much for being here friends.
Blessings all
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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02-19-2008, 05:58 AM
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#13
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I am glad to see that the nurse is listening and taking charge...sometimes we need to "tune up" these Dr.'s, it is OUR life ya know! Looking at the picture of your little miracles takes me way back...32 1/2 years ago when my twins were born.....2 girls, what a true gift.....I was so busy as you must be, but I received so much love it made every struggle worth it...there are many new drugs out there for you, don't take no for an answer....your little ones are depending on you.
Sending love and hope.
__________________
"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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02-19-2008, 07:40 AM
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#14
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Keep up the fight for those beautiful babies. You are in my prayers.
__________________
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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02-19-2008, 02:27 PM
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#15
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Hermiracles,
First, your babies are soooo cute!
I too have bone mets and am on Zometa. I need to get more educated on the bone mets part but my doctor has explained to me that the bones react more slowly than other parts of the body. She says that the scans are more difficult to read and interpret. 2 years ago I had increased activity in the bones and it turned out to be flare effect and actual healing from the meds.
I recently asked about trials for bone mets and was told that between the chemo, Herceptin and Zometa we are doing all that we can.
It sounds like you are doing a good job of fighting for the attention that you deserve even though you shouldn't have to do that now.
Love, Hope, Peace, Carolyn
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02-19-2008, 05:30 PM
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#16
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Yes, your bub bubs are beautiful! As Shelia says there are drugs out there. Just hard to know how to go about getting them. You are strong and will find the answer.
Give those little ones a squeeze from a grandma in IL.
Remember prayers are with you.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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02-19-2008, 07:45 PM
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#17
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I hope they can find the right mix and stop those nasty bone mets....actually I hope your next scan shows improvement before the change. The babies are beautiful!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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02-19-2008, 08:05 PM
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#18
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hermie, your babies are so beautiful! Thanks for sharing the wonderful pictures. I'm sorry to hear the latest news, but please keep on those docs for new treatments, and like said before, typically, bone mets are slow to progress, and often the scans are hard to interpret. Try not to let yourself get too down, and whenever you go into a doctor's appointment or treatment, you just picture all of your sisters and brothers gathered around you making sure everything goes right ( and that goes for all of you!) You're in my thoughts and prayers, Love, Bill
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02-19-2008, 08:41 PM
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#19
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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I just wanted to let you know that I said a special prayer for you. Your babies are definately miracles. They are beautiful. Too bad we all don't live closer. I'm sure you would have lots of babysitters from this site. They're too cute. Mine are getting bigger now.
I am praying that the right treatment for you will be figured out quickly to slow down the bone progression. Like the others, I have heard that progression in the bones is slow and can be managed quite well.
Hang one, my dear, the right treatment is coming.
Hugs,
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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02-19-2008, 08:58 PM
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#20
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Beautiful babies!! I am sure that their mommy is just as beautiful!
I am hoping that you will find just the tx to stop the bone mets in their tracks. Stay strong.
Hugs and Prayers,
Lexi
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