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Old 05-21-2009, 03:31 PM   #1
Nancy L
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Location: La Quinta, Ca
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I believe all these combo protocols in second line treatment(taxotere/herceptin, etc.) are under clinical investigation for those of us who are resistant to herceptin alone. I have had some oncologists agree and some disagree with my decision to stay on Herceptin until what I told them "I die, it stops working or research comes up with something better". Because I had so much disease and was ER-/PR- with nothing else to protect me, I studied everything I could find and made this decision. Of course, I had to be prepared to pay for it myself if my insurance decided it was not allowed. After discussing my first four years of BC with Dr. Slamon last January, he said he doubted that Herceptin was protecting me much after the first year. I don't think even he really know for sure. The data for the two year Herceptin protocol has yet to be published. It takes so so long for the research to be put into action for all of us. And they don't know why some women become resistant and others do not. Of course, they don't know either what causes or fuels ER-/PR- breast cancer---researchers call it the most understudied type of breast cancer. I hope they come up with a blood test to monitor as women are taking Herceptin rather than wait for a shoe to drop. I am anxiously awaiting the news from ASCO Meeting the end of the month---maybe there will be something exciting for all of us.
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Old 05-22-2009, 03:04 AM   #2
Jackie07
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Nancy,

Christine, our support group founder, was on Herceptin for 8 (?) years. There were several other long time members who have also been on Herceptin for many, many years. Check Flori, Sheila, and other's signature, you should find some good encouragement.
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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
Vertigo
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.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 10-07-2009, 11:30 PM   #3
Jackie07
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Re: Mets to neck

I am having an MRI next Tuesday. I requested it because of the scary 'Vertigo' that lasted whole night 10 days ago. My left shoulder pain does not scare me since I know my brain tumor is the slow growing type and the pain I had felt was the exact same spot I had felt after my brain surgery in 1990 - so it's like an old wound. But my right shoulder pain got my attention because the breast cancer was on the right side and I am feeling some tight 'spot' below my ear.

Question: Would the (brain) MRI be capable of detecting neck nodes? How are neck mets found?
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Jackie07
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
Vertigo
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.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 10-11-2009 at 03:40 PM..
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