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Old 01-20-2012, 06:15 PM   #1
KristinSchwick
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I was ER-, now I'm ER+!

Got a call from my oncologist's nurse today, she informed me that they dug up my old lymph node tissue specimens and tested them for ER status. My onc had some suspicion that my isolated bone mets were behaving more like ER+ tumors, but the original tumor (in the breast) was ER-, way back when. He decided to test the lymph nodes and lo and behold- the cancer there is ER. To me this is huge, this is hope and I feel this is answered prayers.

He said that he'd been in oncology for a long time, and rarely gets this fired up about something- he thinks we may just have this "tiger by the tail", in his words. Course, we didn't test the current bone mets and its been a year since those lymph nodes were in my body, but there is hope that blocking estrogen now could buy me some time and maybe even more. So going to continue on Tykerb, Herceptin, Xgeva and now add Zoladex and Femara to the mix. Maybe down the road I will have surgery to remove my ovaries, but not this month.

How could this happen??? Doc thinks that there were two cancers in the breast initially, and the ER+ one metastatsized to the lymph nodes and then to the bones, and the ER- one completely responded to the neoadjuvant chemotherapies (FEC, Herceptin, Paclitaxol) and was reduced to stage I/DCIS. It is also entirely possible that the first testing gave a false negative, or the tech and pathologist were drunk- but doc assured me that the pathologist is excellent (same guy both times).

I am so thankful for this renewed hope. I really feel for everyone else fighting and hope that my sharing this story will inspire others to inquire about changes in receptor status.

Somethings to think about:
ER/PR false negatives DO happen! Just google the frequency. I'm sure the same is true for Her-2 status.

My cancer was not behaving like typical ER-, Her-2 cancer: it was limited to only bones, grew very slowly and hadn't spread to any other organs. This was a red flag to my doc as it was not behaving like ER- disease, and more like ER+. If your cancer isn't following the anticipated trend- maybe its not what the doctor's think-ask!

The ER/PR staining procedure- is a qualitative assay, meaning someone looks at a control tissue slide, looks at your tissue slides and then asks himself, is this one significantly darker than the control? I have done these assays during my PhD research, and it is very subject to human error and human bias. It depends on how many washes the slides got, how long the tissue was fixed, how long were they blocked to prevent excessive background staining, how well the positive and negative controls worked.

Much love and Huggs going out to all of you!!!
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 01-20-2012, 08:25 PM   #2
Rich66
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Re: I was ER-, now I'm ER+!

Quote:
ER/PR false negatives DO happen! Just google the frequency. I'm sure the same is true for Her-2 status.
Bingo..and the fact that not all met sites are biopsied makes this all the more variable.

Even though my mom got months of stability out of Herceptin monotherapy (a gamble at the time)..and her2 serum was elevated...available biopsies will exclude her from TDM1. Not to mention that treatment is thought to change these variables.

But 2 results from same tissue, same lab, same pathologist? As you say..huge.
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Old 01-20-2012, 08:46 PM   #3
Becky
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Re: I was ER-, now I'm ER+!

Now you have lots more weapons to fight with as there are at least 1/2 dozen anti-hormonals to use.

It does validate second opinion pathologies from large research cancer centers.

This is actually good news. ER+ bc does love the bones (far more than ER- cancer). Especially if its just the bones versus bone and soft tissue.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-20-2012, 09:07 PM   #4
KristinSchwick
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Re: I was ER-, now I'm ER+!

Becky- I jumped for joy with the idea last month when he said he had suspicions of ER+, but now that its REAL- I'm freaking excited as HELL. Bye bye estrogen, hello future!
I guess I didn't realize there were lots of anti-hormonals. I just figured we'd give the drugs a shot, and then I'd get my ovaries out. Any advice out there? Surgery or drugs?
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 01-20-2012, 09:15 PM   #5
Rich66
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Re: I was ER-, now I'm ER+!

Hmmm...interesting. Surgery is more definitive..but stresses the body in undesirable ways
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Old 01-20-2012, 10:59 PM   #6
JennyB
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Re: I was ER-, now I'm ER+!

Kristin,

This is great news I am so happy for you and hope now that you get the pesky little suckers under control - I can't stop smiling for you - well done oncologist too!

Jenny xx
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-21-2012, 12:12 AM   #7
bejuce
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Re: I was ER-, now I'm ER+!

Hooray!!!! I had something similar happen to me when I was diagnosed at a clinic. They told me I was about 5 % ER+ and that they didn't think that giving me Tamoxifen would help. Stanford disagreed and later I had them re-test my tumor and indeed it was over 30 % ER+, strongly making the case for anti-hormonal. I've been taking it since 10/09 without many side effects. I still get my period but not every month.

Your chances of becoming NED have now greatly increased. Awesome news!!! Congratulations!!!

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 01-21-2012, 06:18 AM   #8
Jackie07
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Re: I was ER-, now I'm ER+!

Congratulations! [Strange thing to say - but you've got an additional weapon to fight the beast 'accurately'!]

I was put on Tamoxifen even though the ER portion is only 5 %. I think my oncologist prescribed me Tamoxifen because research had shown that it's effective even when the ER+ number is low. Perhaps he had taken into account of the possibility of 'change', 'mixed cells' and 'misreading'...
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Old 01-21-2012, 07:02 AM   #9
Becky
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Re: I was ER-, now I'm ER+!

Kristin

You are very young to get your ovaries removed. I did get mine removed but I was 46 at that time. Lupron or Zoladex shots along with an aromatase inhibitor (there are 3 - Arimidex, Femara and Aromasin) should do the job - chemical menopause versus surgical menopause.

Another option is Faslodex (since you are stage 4 - it is only stage 4 approved). This monthly injection degrades the estrogen receptor. (I think the first month, you get 2 shots 2 weeks apart to get the concentration up and then its just monthly thereafter). There was a stage 4 woman at my cancer center who was getting Faslodex shots, was also on Arimidex and getting Herceptin. Anyway - don't forget to discuss Faslodex with your onc and see what he has to say. It would be interesting to get his take on this drug (which Dr. Slamon says is the way to go in Her2+ women).

Keep us posted.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-21-2012, 10:01 AM   #10
Lien
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Re: I was ER-, now I'm ER+!

Great news! I did Zoladex and Arimidex for 5 years and had a few side effects, but nothing bad. The shots can be a bit painful, but when an experienced doc gives the shot, it's not bad at all. I sometimes had some ugly bruises, but most of the time it was plain uneventful. A friend of mine, who progressed on every other drug, now has stable disease after just a few months of Faslodex and one of her mets even shrunk a bit. Removing your ovaries is, ofcourse, a big step. I'd try the shots for a while and decide later.

Hope this works really well for you! Isn't it wonderful to have more treatment options? May you get lots and lots of mileage out of this!

Love

Jacqueline
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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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Old 01-21-2012, 10:24 AM   #11
Mtngrl
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Re: I was ER-, now I'm ER+!

Kristin,

I'm so happy for you! That's wonderful.

Thanks for the cautionary tale.
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Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 01-21-2012, 05:27 PM   #12
Pray
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Re: I was ER-, now I'm ER+!

I am so happy for you and your beautiful family!!!!!! Gods blessings to all of you!!!!! I will be praying for you and your family!
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Old 01-23-2012, 08:21 AM   #13
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Re: I was ER-, now I'm ER+!

Glad to hear the good news, you have a good Dr. not to many will question test results without us asking. Hope the new treatment works well.
Suzanne
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
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11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 01-23-2012, 12:16 PM   #14
Ellie F
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Re: I was ER-, now I'm ER+!

Great news and yet again reinforces the need for retesting rather than assuming the receptors stay the same!

Ellie
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Old 01-23-2012, 12:32 PM   #15
StephN
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Re: I was ER-, now I'm ER+!

Hello! And you have a great story! Hoping NED is in sight for you now.

You have made a great case for "onc shopping." If anyone feels that they are not face to face with a doctor who is showing a quizzical side in your first interview - try another.

This is also a case for finding and staying with a BREAST specialist, rather than a general oncologist. Once we have the diagnosis of HER2 positive, that THOUGHTFUL doctor is the one who can save our life.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-25-2012, 11:06 PM   #16
Adriana Mangus
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Hi from Adriana

Hi Kristin,

Welcome aboard! You have come to the right place, glad you joined this site.

Have you been treated with Navelbine?

It was an effective weapon for me. Please read my info., there are a lot of women like you and yes! there is hope for us.

Love,

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane

Last edited by Adriana Mangus; 01-25-2012 at 11:10 PM..
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Old 01-25-2012, 11:38 PM   #17
Rich66
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Re: I was ER-, now I'm ER+!

Ellie,
What's extra interesting about this is that it isn't about an evolution in status..it's a re-evaluation.

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ER/PR false negatives DO happen!
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