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Old 04-03-2009, 12:51 PM   #41
pmm10414
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Join Date: Dec 2008
Location: Merritt Island, FL
Posts: 53
Thanks for the words of encouragement

I started herceptin 3 weeks ago and am also on Taxol. I have been in pain and have neuropathy (got it from AC too after onc said it was impossible). Anyway, all the news from all of you is encouraging. I pray each day the Lord heals me. They are doing chemo before surgury and all are surprised how much shrinkage has been achieved thus far. I have 8 more treatments then surgery and radiation. It is scary having this tumors still in me, but all agreed that the size of my tumor dictated this course (along with lymph node involvement)
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PATTY
FOUND MY TUMOR IN 11/08 AFTER CLEAR MAMMOGRAM ON 5/31/08
DX 12/09/2008 STAGE II
CHANGED TO STAGE IIIA AFTER MRI
SURGURY FOR TWO PET SCAN NODES IN CHEST NEGATIVE (DEC08)
AC (4 COMPLETE MAR09)
TAXOL HERCEPTIN (12 TREATMENTS COMPLETE IN JUN09 )
SURGERY IN JUN09 - COMPLETE RESPONSE (BOTH BREASTS NEG AND 9/9 LYMPH NODES NEG) NED
HERCEPTIN RESTARTED IN JUL09 WEEKLY UNTIL JUL10
PET SCAN - NEGATIVE DEC11 AND AUG09
BRAC - NEGATIVE SEP09
28 RADS COMPLETE SEP09
BONE SCAN - NEGATIVE MAR10
PET SCAN - NEGATIVE DEC11
PET SCAN - SARCOIDOSIS OCT11 thought cancer was back thank The Lord it is not they think!!!!!!
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Old 04-06-2009, 04:51 AM   #42
Jackie07
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Location: "Love never fails."
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I was first diagnosed in 2003. Though I've got some bumps along the way, I am glad to say that I have made it close to 6 years. And my latest biopsy were 'benigh' - the surgeon stated that she had never seen anything like it - the 'clip' inside of my old underarm surgical site had got pushed up to the surface of the skin and made it look and feel like a 'growing' lump.

ps. Now I'm headed to the 7th year in mid July, 2010. [3-4-2010]
ps. Headed to the 9th year in mid July, 2012. [11-15-2011]
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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; 01-29-2012 at 07:44 AM..
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Old 02-28-2010, 10:02 PM   #43
asusa12
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Posts: 3
Re: Long-Time Survivors

I had the best wig in 2006 when I was first diagnosed. My stylist shaved my head and I cried. Now my own hair is back and so is my cancer - mets to bone. Spent the interim 2007-2009 traveling to places -I- wanted to visit [with tour groups]. Now on Tykerb and Xeloda and no one will give me any timeline. Love my job; love my life; love my son. Don't want to miss a thing, but probably I will.
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Old 04-16-2010, 04:53 PM   #44
Jackie07
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Re: Long-Time Survivors

Bumping this thread up, so our new members can find it more easily.
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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
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Old 04-27-2010, 08:50 AM   #45
Nancy L
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Location: La Quinta, Ca
Posts: 253
Re: Long-Time Survivors

Inspirational story of a 17 year stage IV survivor. Does anyone know the website she is refering to in this interview---the one for just stage IV survivors?

http://www.nytimes.com/2010/04/27/health/27case.html

I had read some place before that 2% of stage IV patients survive beyond the expected but I didn't know the other specs. Good for Dr. Love for taking a look at why---maybe she will learn something that helps the other 98%.
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Old 04-27-2010, 11:14 AM   #46
bejuce
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Re: Long-Time Survivors

Kathy posts on the Stage IV board at breastcancer.org as pointed out by someone at the Young Survival Coalition site.

So much hope here!
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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 04-27-2010, 02:43 PM   #47
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Long-Time Survivors

I clicked on the hyperlink on the article, and this is the site she's talking about:

http://community.breastcancer.org/topic/8

I think the 'Living Beyond Breast Cancer' site is also devoted to stage IV long-term survivors. www.lbbc.org
__________________
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; 04-27-2010 at 02:48 PM..
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