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Old 12-19-2010, 03:47 AM   #1
michka
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Location: Paris, France
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Re: Need help! Calling brains in.

Jackie,I read the answer you sent to KDR about ER- PR+. Thank you so much for doing researches. I am unable to find such information without you or Rich or Hopeful and so many others... I am so grateful.

Does this mean, my new met being 20%ER+ and 0% PR+ my idea of still hanging
on to an anti hormonal therapy is useless?
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 12-20-2010, 04:15 AM   #2
Jackie07
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Location: "Love never fails."
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Re: Need help! Calling brains in.

The use of Tamoxifen seems to have been changing due to new findings.

When I was first diagnosed in 2003, my oncologist said I was ER- PR- and couldn't use Tamoxifen. But then two other doctors in a one month period of time (after I had finished chemotherapy) all were ready to start me on Tamoxifen. I thought the first one was crazy. But I contacted my oncologist's office after another doctor had mentioned the same thing.

So my oncologist gave me the Tamoxifen (in 2004).

After I finished chemo for my recurrence 4 years later, same question was asked again. And again my oncologist gave it to me after I had asked for it.

I consulted my 2nd Sister-in-law's oncologist overseas about the matter in 2009, and he told me the following:

Since your breast cancer is ER (+), although the percentage of ER is 5-10%. Hormonal therapy with tamoxifen or AI (arimidex) is the treatment of choice.
The disadvantage of tamoxifen: Uterine myoma, uterine carcinoma...etc. but less osteroporosis.
The disadvantage of arimidex (AI analogue): severe osteroporosis..
Conventionally, chemotherapy will destroy the ovarian functions, oophorectomy, therefore, is not necessroy.
But if you still have menstration indicating the normal ovary function, oophorectomy and hysterectomy (to avoid uterine tumors) followed by tamoxifen treatment are treatments of choice. [I think he meant to use the word 'following' (or 'after') instead of 'followed by'] [12-25-2010: Now my oncologist started me on Tamoxifen again - perhaps my Sister-in-law's oncologist was talking about oophorectomy and hysterectomy 'followed' by Tamoxifen.]

I asked for hysterectomy/oophorectomy after my genetic test came back positive for a BRCA1-'Variant of Unknown Significance'. After the surgery in January, I quit taking Tamoxifen and thought I would start AI.
But my oncologist said 'No'. So I just let it go.

However, my oncologist sent me a note in August a couple of days after my last appointment with him and told me that he "just wanted to make sure that you are taking your Tamoxifen."
So I am back on Tamoxifen again. I later found a couple of articles citing the result of some studies that the benefit of Tamoxifen continues even after 5 years and also for ER- patients.
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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
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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.
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Last edited by Jackie07; 12-25-2010 at 12:53 AM..
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