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Old 12-26-2013, 06:42 PM   #1
Her2husband
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Hi number of positive nodes

My wife was diagnosed in June 2013 with 2.5 cm invasive ductal 11/24 positive nodes Her2+.

She had a bilateral mastectomy followed by 8 weeks of fortnightly AC chemo and has just finished 12 weeks of weekly Taxol. she has also started a 12 month regime of Herceptim. The doctors are giving her a break over December and then she will have 5 weeks of Radio in January followed by reconstructive surgery in April.

Has anyone else been diagnosed with over 10 positive nodes?
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Old 12-26-2013, 07:09 PM   #2
JillaryJill
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Re: Hi number of positive nodes

Hi,
You can see from my signature, I had 12 positive nodes. I am 3 years and 2 months past diagnosis and doing great!
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 12-26-2013, 07:13 PM   #3
Her2husband
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Re: Hi number of positive nodes

Thanks Jill...great to see you are doing well. My wife is pushing on through her treatment and being very positive we had a lovely christmas and she will start her rads next week.
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Old 12-26-2013, 07:25 PM   #4
JillaryJill
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Re: Hi number of positive nodes

Perjeta just got approved by the FDA...has your doctor mentioned this?..I know your wife already had her surgery, but its worth asking.
I also enrolled in the vaccine trial at Mayo as you can see from my signature. I tolerated the vaccine very well. Many of the the women on the board had the vaccine also. She still has radiation ahead of her...but something you might want to research on her behalf.
The number of nodes is really scary, but many of the women that had chemo prior to surgery, probably had a bunch of positive nodes but Herceptin and the chemo eliminated the cancer in the nodes. I also had many areas of extracapsular spread into the muscle area of my arm...so I was a mess.
My onc at the inception of my treatment said I had less than a 10% chance of recurrence if I tolerated all the treatments. She has a large practice at Rush in Chicago and has been at the forefront of the early Herceptin trials. She treats alot of Her2 patients. I have to admit I did not believe how positive she was, but I just had my check up last week and I told her...I am starting to believe I will be ok. She told me it is "A New Day" for treatment of Her2. She just returned from San Antonio Breast Cancer Conference. She said the positive news about the current Her2 treatments and new ones in the pipeline are incredible.
It's a crappy disease to get...but we are in exciting times from a scientific standpoint.
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 01-06-2014, 09:19 AM   #5
lkc Gumby
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Re: Hi number of positive nodes

Hi There!
I was diagnosed with a stage IIIC , her2 positive BC with 12 out of 14 positive nodes. Actually my axilliary and sentinel nodes were totally replaced by tumor, and I also had vascular invasion. That was June 2005!! I am totally well and living happily.
Please tell your wife HER2 positive BCs are so treatable due to the amazing new therapies.
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 01-09-2014, 09:45 PM   #6
Tams20136
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Re: Hi number of positive nodes

Amazing...
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Old 01-12-2014, 12:51 AM   #7
Jackie07
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Re: Hi number of positive nodes

Another amazing story: http://her2support.org/vbulletin/showthread.php?t=58937
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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; 01-12-2014 at 02:37 AM..
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Old 04-22-2014, 08:41 AM   #8
linn65
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Re: Hi number of positive nodes

Wow Linda,

You gave me more hope!!! 2005 that is awesome it sounds like we are similar!! Thanks for sharing that makes me feel better.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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