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Old 09-03-2013, 06:31 PM   #1
micheleu
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Smile 10 yrs stage 3b 45 positive nodes.....

Well. ..I never thought would see this day! !its hard to remember the chemo and trips to the er because I was dehydrated.others around me can remember every day...the crying...the melancoly..the complete hopelessness.....drs gave me no hope and ripped my heart and soul out of me.. and look. .. God's grace has given us hope in herceptin! I am 10 yrs Ned... don't let any dr or anyone take hope out of your soul! !
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Michele Ulmer

Dx.2003 Stage 3b 35 pos nodes

Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED

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Old 09-03-2013, 07:20 PM   #2
JillaryJill
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Re: 10 yrs stage 3b 45 positive nodes.....

Love this post. Just wonderful...thanks for posting for us million positive lymph node girls!
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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 09-04-2013, 04:25 AM   #3
karen z
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Re: 10 yrs stage 3b 45 positive nodes.....

Fabulous news and, I agree, a great and inspiring post.
Thanks for sharing this news and advice to all of us.
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Old 09-04-2013, 07:15 AM   #4
snolan
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Re: 10 yrs stage 3b 45 positive nodes.....

Love to hear good news! Congrats.
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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
Nipple tatooing- 7/9/12- All done yay!
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 09-04-2013, 08:26 AM   #5
'lizbeth
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Re: 10 yrs stage 3b 45 positive nodes.....

From 45 positive nodes to NED, and 10 years!

Wow. Thank you for posting - so that others can see they can become NED and live a very long life after cancer.

So happy for your good health!
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Old 09-04-2013, 08:30 AM   #6
Lovemyboys3
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Re: 10 yrs stage 3b 45 positive nodes.....

It's people like you that give all of us hope! Love it! CONGRATS!
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Old 09-04-2013, 01:43 PM   #7
NEDenise
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Re: 10 yrs stage 3b 45 positive nodes.....

Great news Michele!

Keep going!!
All the best!
Densie
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Old 09-04-2013, 06:53 PM   #8
Becky
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Re: 10 yrs stage 3b 45 positive nodes.....

Dear Michele

I am so happy you continue to do well. Maybe we can meet up in San Antonio if you still go. It was so nice spending time with you and your mother for a couple of years in a row. You helped me so much when I was first diagnosed and I think of you often.

Big hug to you!
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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
Zometa every 6 months for osteopenia

NED 13 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 09-04-2013, 09:42 PM   #9
Mel3
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Re: 10 yrs stage 3b 45 positive nodes.....

Michele,

I always look forward to your updates. You inspired me to participate in the vaccine trial and I cannot thank you enough. Cheers to you!
__________________
Dx June 2010
ER- PR+ Her2+++, Stage 3C
A/C x 4
Mastectomy 8/18 nodes+
Taxol/Herceptin x 4
35 rads
Continue Herceptin for 1 year
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Old 09-08-2013, 05:36 AM   #10
Jackie07
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Re: 10 yrs stage 3b 45 positive nodes.....

Congratulations! Michele.

Always loved reading your updates. Take care.
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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

"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; 09-10-2013 at 05:18 AM..
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Old 09-08-2013, 04:54 PM   #11
SusanN
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Re: 10 yrs stage 3b 45 positive nodes.....

From one Nebraska Her2 Girl to the other, AMEN...GOD IS FAITHFUL!!!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 09-26-2013, 04:13 AM   #12
chrislmelb
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Re: 10 yrs stage 3b 45 positive nodes.....

Michelle i remember you from all those years ago and i am so pleased for you to have got this far with no setbacks, lucky you
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 09-27-2013, 12:57 AM   #13
michka
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Re: 10 yrs stage 3b 45 positive nodes.....

I missed your post..I am so happy you are doing well. Now the next 20!
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 10-09-2013, 07:55 PM   #14
caya
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Re: 10 yrs stage 3b 45 positive nodes.....

I just saw this Michele - Big congrats to you sweetie!!

May you have 10 x 10 more years of NED!!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
10 Years NED!!
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Old 12-02-2013, 02:59 PM   #15
Becca24
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Re: 10 yrs stage 3b 45 positive nodes.....

Thats amazing news, so inspiring for me diagnosed in Jan this year. So pleased for you
Becca x
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Old 01-13-2014, 04:13 AM   #16
chrislmelb
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Re: 10 yrs stage 3b 45 positive nodes.....

Lucky you michelleu as i remember i was diagnosed very close to you. Well done on getting there unaffected by mets.
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 01-14-2014, 04:10 PM   #17
norkdo
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Re: 10 yrs stage 3b 45 positive nodes.....

thank you from another 3b girl.
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 02-16-2014, 01:16 PM   #18
cleoland
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Re: 10 yrs stage 3b 45 positive nodes.....

Congratulations!!! Thank you for giving me hope
__________________
Clear mammo Jan 2011
Shingles March 2011
Found tumor on right breast May 2011
Dx jun 24th 2011
ER/PR- HER2+ Grade 3
stage IIB IDC Spread to lymph nodes
Neo adj chemo TCH Jul-Nov 2011
Lumpectomy/24 lymph nodes removed 11/30/2011
Pneumonia/infection hospital 12/13-15/2011
Radiation Jan-Feb 2012
Herceptin July 2011-2012
MRSA 4 times 2012, completed clinical trial
Chemo Neuropathy, lymphedema on right arm, Fibromyalgia, Hypothyroidism, Type 2 Diabetes, Sleep Apnea, Hiatus Hernia and GERD.
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Old 03-07-2014, 04:21 PM   #19
Gabrielle
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Re: 10 yrs stage 3b 45 positive nodes.....

Congratulations!
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