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12-12-2007, 06:12 AM
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#1
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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2nd Opinion
Hello friends ~ well I am home from Sydney where I got my 2nd opinion from a wonderful female oncologist! I'm feeling so much more positive and able to really tackle this illness in a much more positive way.
Is it just me or is it true that men are just not good communicators? (My Anthony says not all men! Ok..ok..)
Not that she told me anything particularly different from my Onc here its just that she explained it in a way that made sense to me and she also reassurred me that this local Onc is actually a very good Doc and my treatment is right on track - so that is reassuring!
Interesting it came out that she would have given me chemotherapy back in 2003 when I was diagnosed with DCIS.. as there was some indication that there was an invasive component then.... not that I really understood any of that at the time  .... hmmmm... long story but I guess you can't change the past:-(( (getting much more educated now!)...
Anyways she reckons I could have another go at the Herceptin (with slower infusion and adequate pre-med to prevent reaction) - which I'm happy about.
But the next step is starting tomorrow - 5 days of radiotherapy to my R/hip where they found the cancerous cells. Im hoping they maybe able to also zap my spine because I am concerned about the 2 "spots" they found on my spine... in the back of my mind Im worried about breaking my spine and I would like to be able to pick up my bubbas without worrying about that. At the moment I can't pick them up at all - which is distressing to me.
In terms of "prognosis" (that horrible word)... she said 'yes... that is true for women with metastatic bc it is usually 18mths to 2 yrs but she said that is a median estimate and I need to aim be in the 50% of women who are still around in 2yrs time.... well I hope to be around a lot longer than that!! (and I hope lots more of us are too!!) Though I've got no idea how to achieve that goal anyway... accepting treatment, educating myself, coming here for education and support, looking after myself as best I can????
Well it's getting late now ~ I'm very tired, sorry if this is a bit garbled...hubby and bubbas are all in bed sleeping  ~ I better take myself off there.
Thought I'd send you all an angel:  My Sissygirl ~ Meyah May ~ gorgeous eh?
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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12-12-2007, 06:55 AM
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#2
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Beautiful, beautiful babies. I'm jealous. Like I said to someone else, an aggressive oncologist and a warrior, knowledgable patient are a great combination. May you live to see your children and grandchildren drive you crazy.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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12-12-2007, 07:07 AM
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#3
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Oh! lol! MJo ~ that is so sweet! Thank you!
Blessings
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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12-12-2007, 07:33 AM
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#4
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Absolutely beautiful babies! I'm glad you feel better after your second opinion. Most importantly she agreed with the treatment you are receiving. You have those beautiful babies to fight for so hang in there. You'[re in my prayers.
__________________
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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12-12-2007, 07:38 AM
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#5
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Thanks Kate. You're a sweetheart!
Blessings
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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12-13-2007, 10:45 AM
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#6
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Senior Member
Join Date: Aug 2006
Location: Franklin, MA
Posts: 131
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Hi there,
I was diagnosed as stage 4 about 6 weeks after my initial diagnosis. It was in my bones and liver. I'll also add that I was pregnant with my daughter at the time of my diagnosis, and she just turned 2 at the end of October. So...pay no attention to that statistic of 18 months - 2 years. I am now past the 2 year mark of living with Stage 4 and I'm still going strong (still on chemo, but going strong nonetheless). I am glad to hear that everyone is on board with your treatment plan, and I wil hope with all my heart that you turn into a long term stage 4 survivor so that you can watch those beautiful babies grow up!
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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12-13-2007, 11:05 AM
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#7
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Senior Member
Join Date: Jan 2007
Posts: 144
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Girls are so special
Glad to hear that everything is "on track" treatment wise. As other's have said, pay no attention to statistics. We are not numbers, and we all have our own special reasons for fighting and winning this battle. The girls are beautiful and I know they fill your heart with love, laughter, and thoughts of the future. My girls do too.
Hope all goes well with next H treatment.
Have a great Holiday and enjoy every moment!
Emelie
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12-13-2007, 03:58 PM
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#8
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Glad you have had a second opinion. Now you have more confidence in your regular onc and your treatment plan. That must help you mentally. You have faced a lot in a short time period, hope it is easier on you now. Best wishes for lots of fun this holiday with those sweet babies.
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12-13-2007, 05:29 PM
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#9
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Gorgeous babies! So glad you got a second opinion. I agree we are not just numbers, we are people and we all respond differently. Some have a stronger survival sense then others also. You keep on believing in hope and you will be here a long time.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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12-19-2007, 02:28 AM
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#10
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Thanks ladies.. so much for your encouragement and support - it really makes a difference.
I have just returned from Brisbane where I had 4 doses of radiotherapy to both my spine and my right hip/femur. Still on a bit of an emotional roller-coaster - as you can imagine. Seem to switch quickly to feeling hopeful to feeling despondent. Think Im still in shock really.. and I guess it should settle down as my acceptance grows. Im glad hubby and the bubs were able to be there with me and had a go at having a little holiday.
See the local Onc tomorrow to see what the next step is. Getting close to Xmas eh? Hope we all can have a peaceful one with lots of love and some hope and joy.
Thanks so much for sharing your experience strength and hope.
Blessings all
Hermiracles
PS I almost forgot to tell the GOOD news - Doc reckons its OK to pick up my bubbas now - so starting to feel more confident looking after them again.
__________________
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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12-19-2007, 07:36 AM
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#11
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Glad to hear your news...you will be picking up those cutie beautie's
very soon.
Best Wishes,
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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12-19-2007, 09:29 AM
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#12
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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A thousand Christmas blessings to you and yours, and a healthy, prosperous and happy New Year. Your job is to beat this disease!
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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12-19-2007, 10:57 AM
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#13
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Enjoy those adorable "bubbas" Hermiracles. Glad you had the radiation - this is a great step in stopping the beast in its tracks.
Have a lovely Xmas 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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