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07-30-2010, 02:05 PM
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#41
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: It's back...
Chelee,
Sorry to hear about the node. But good luck with your decision. It's a tough one. And I'll keep my fingers crossed that you'll get the T-DM1.
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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07-30-2010, 03:17 PM
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#42
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
Joan, I have decided to pass on this trial. I was really only interested in T-DM1 if I had to drive that far wkly. (2 hrs one way) I also found out there is no cross over to T-DM1 if I were to get the Tykerb/Xeloda arm and progress. I also don't like the idea that I will be off Herceptin if I get the Tykerb/Xeloda arm. (My CA27.29 dropped when I started back on Herceptin.)
Now I don't know what to do? I still have lots of questions and no answers? I was hoping when I was out at UCLA I could cover all my options but there just didn't seem to be enough time. It was mainly about the trial and what was involved in it. My onc is going to ask me what I want to do and I haven't a clue? Maybe Tykerb/Herceptin like Dr. Slamon mentioned to me at a prior appt...I just don't know? If anyone has any idea's I'd love to hear them...might help me brainstorm this a bit. CA27.29 was still in NED range...so low measurable disease so far.
(I've had so many distractions...one very ill dog and my MIL fell and broke her hip. Trying to take care of everyone & myself...when it rains it pours.)
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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07-30-2010, 04:26 PM
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#43
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Member
Join Date: Jan 2010
Posts: 9
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Re: It's back...
Chelee - I wish I had some words of wisdom for you, but unfortunately I don't. I will keep you in my thoughts and prayers though. And please, keep us posted.
__________________
Extensive DCIS, IDC Grade 2, Stage 2 ER+ (100%), PR+ (50%), HER+++
Lumpectomy - Dec 30/09
TCH began March 17/09 - done July 5/10
Continuing herceptin for a year
Tamoxifen started on Aug 2/2010
Rads to begin Aug 2/2010
Still looking at BLM though.
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07-30-2010, 07:45 PM
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#44
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Re: It's back...
Cheele: Tykerb/Herceptin and if it doesn't show strong results soon, add Xeloda to the mix?
I'm not sure from your siggy where mets are. Just the axilla now?
Hope you find your way on to an effective treatment.
Stay strong...Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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07-30-2010, 08:14 PM
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#45
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: It's back...
Cheele,
Tykerb and Herceptin is not a bad option when disease is not that big. In addition to that I think it is better to get the axilla lymph node removed. You don't need to run out of options just to take care of that one node.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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07-30-2010, 11:30 PM
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#46
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
Darlene, Yes, it is just the rt axilla at present...nothing new seen. (Bone met to left ilium is still stable.) Since this is the 2nd time for that one pesky node...I've like to just have it removed. But I've heard its good to leave it in to moniter the affects of trt. I've heard pro and con on this? In a perfect world I'd like to think I could have it removed and maintain a long time on Herceptin/Zometa/Femara. (I can dream right. ) 
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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07-31-2010, 03:19 PM
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#47
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Re: It's back...
Chelee: I'm not down with let's just keep it for monitoring reasons. Shit, isn't that what scans are for? How about Cyberknife for that pesky node? It can potentially treat tumors anywhere in the body. If not, I'm with you on cutting that sucker out and maintaining your dream treatment.
Yes, girlfriend continue to dream. It's the least you should get to do while dealing with all of this.
Let us know how it goes....Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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08-01-2010, 03:02 AM
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#48
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
Darlene, What I find interesting is the different answers I get when I ask about removing the node...or leaving it there? It depends on who I ask and what treatment they are offering me.
If it's clinical trial then it's a good way to moniter trt--and for a trial I'm sure that is very true. But I did call a place that does Cyberknife and they said I was the "perfect" canidate for this and wanted me to come in for a consult asap. Then if I ask my surgeon he says yes it is a very real option to consider. If I had several nodes popping up causing a problem I wouldn't even consider it...but it's just this one every time. (So far anyway.) I wish all these doctors I talk to were on the same page...but each one says something different. (But I will continue my dreams and fantasties...that's one thing they can't take away from me.)
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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08-01-2010, 08:01 AM
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#49
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Re: It's back...
Sweet Chelee: What it comes to is, choose a treatment that makes you the most comfortable. I have found that this disease has many options and a lot of gray ground. The recommendations we get are often influenced by what that doctor has at his disposal and his philosophy. Sure doesn't mean that is the best choice for you. I have learned to cast a big net to pull in all resources to make the best decision for me. No one doctor can know everything. Like you, I travel to thought leaders and use everyone's info before making MY decision.
Sometimes being proactive empowers me and gives me courage, other times it scares me and wears me down. That's why I value this forum and strong women like yourself to help keep going in the right direction.
Good luck on this and I hope to hear a success story on getting rid of that pain in the ass node. When I dream, it's not about treatment, it seems to be about my dreamy neurosurgeon!!! I guess that's good medicine too!!
Your metsister....Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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08-02-2010, 07:26 PM
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#50
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: It's back...
Chelee,
I just wanted you to know that I was thinking about you. I hate it that you got this crappy news. And I especially hate it that you have to make all these decisions. It is a cruel form of torture.
Sending you my warmest thoughts and prayers.
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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08-02-2010, 08:54 PM
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#51
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: It's back...
I am thinking of you too. Get all the information you need to make those important decisions. That is right. One doctor doesn't know everything, no matter how educated or experienced they are. Just like other people doctors have different interests, philosophies, and experience with patients. Sometimes we also have to twist some arms to get what we know we need.
Good luck. Hang in there. Keep putting one foot in front of the other.
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08-07-2010, 10:53 PM
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#52
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: It's back...
Chelee,
Just wanted you to know I'm thinking of you.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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08-08-2010, 08:43 AM
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#53
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: It's back...
I'm thinking of you too. Gentle hugs, as you consider options.
Barb A.
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08-08-2010, 09:59 AM
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#54
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: It's back...
Hi Chelee,
Just chiming in here to let you know I am also thinking about you as you weigh your different treatment options.
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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08-28-2010, 07:51 PM
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#55
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Re: It's back...
Behind with reading the posts. Sorry to hear you are searching for answers to tough questions. Praying for good decisions and answers for you.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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