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Old 06-11-2014, 09:52 AM   #1
lkc Gumby
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Smile Nine years her2 positive !!!!

Hi ladies,
I am writing this with enormous gratitude that I have reached this 9 Year BC anniversary. I've recently returned from my 6 mos check up, and finally had the nerve to ask my sweet Onc if he thought I would make it back then. He smiled and told me if anyone would, he thought it would be me. You see back then it was a recent development that an additional classification of C was added to the Stage 3 cases.There was only Stage III A. and B then. This meant for me that had I been diagnosed a few years earlier I would of been classified a stage 4 and would not have been a candidate for surgery, or the treatment I received.( My onc was part of the team at MD Anderson that pushed for this additional classification to provide an option of CURE for cases like myself) Anyway, to throw another ratchet in, I was also HER2 positive and when he told me that he looked really disturbed. I was actually happy since I knew I would probably get the newly approved Herceptin and just maybe it would work for me. He told me he had seen HER2 cases(before Herceptin) to be the worst BC prognosis and did not have any long term data for a case like mine. However, my dear Onc, held out his hand to me and said 'We're going for the Cure for you" I remember telling him then to throw everything he could at me. You see, I had just lost my Mom to Met BC and he was also her Onc. and we all had walked the long road of metastatic dx together.
That was 9 years ago and I am well. Living Large! I don't let a day pass without thanking God for my health and blessings I have in this life. I am blessed to share my life with a wonderful man who stood by me, while some members of my family ran for the hills. I have 2 beautiful girls and healthy happy grandchildren and a new baby boy coming in August! I am blessed to have my faith , and have truly long time dear friends. Upon my return home I went back to my career in research, but it would be Breast Cancer Research this time. How cool is that to be able to do that?! So many new treatments and lots of good outcomes.
Anyway. I am posting this to say hi to my old timer sisters on this board and also to let the newer sisters, know my story. There are lots of us out there.
I wish all a gentle road on a journey no one wants to go on.
__________________
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 06-11-2014, 10:46 AM   #2
JDee
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Re: Nine years her2 positive !!!!

Thank you so much for posting. I am halfway through my treatment and can use all the positive news I can get!

Dee
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12/3/13 Suspicious mam left breast, calcification
12/18/13 another mam
1/14/14 sterotatic biopsy
1/17/14 Diagnosed BC
IDC HER2 3+, grade 3/3, 0.5 cm
ER, PR negative.
2/14/14 lumpectomy, SNB, nodes negative, clear margins. Started 3/28/14 Taxol/Herceptin once a week for 12 weeks then Herceptin every three weeks for rest of year.
Radiation starts in July
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Old 06-11-2014, 10:57 AM   #3
KDR
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Re: Nine years her2 positive !!!!

Linda,
Lucky Linda! May it be forever.
Love
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-11-2014, 12:09 PM   #4
JillaryJill
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Re: Nine years her2 positive !!!!

Linda,
You have been my inspiration for the last 3 years and 7 months. I feel a special kindship to you since our Stage and # of lymph nodes is the same. I hope I can write on this board in 9 years that I am still NED. Congrats to you...I am so happy for you!
__________________
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 06-11-2014, 04:32 PM   #5
Becky
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Re: Nine years her2 positive !!!!

Yippee Skippy - give it a name and buy it a drink. I am so happy for you!! Herceptin is a real game changer.
__________________
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 06-11-2014, 05:38 PM   #6
Joanne S
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Re: Nine years her2 positive !!!!

Linda, So happy for you! Congrats on your 9th! Best wishes for continued NED always!
Joanne
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 06-11-2014, 06:05 PM   #7
Lani
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Thumbs up Re: Nine years her2 positive !!!!

Congratulations on your anniversary and for sneaking into treatment just in time when Stage IIIc was recognized.

If you don't mind my asking (since you are a breast cancer researcher, you probably won't), did you try to find out if your mother's bc was her2+ as well?

There is an X-linked her2+bc in mice related to FoxP3. I have posted on it before(article out of U of Michigan) and am interested if there is such an entity in humans as well.

Since her2 testing is so new (relatively) it is hard to know, but some of these specimens may still be out there to test.

Along the same vein, while at ASCO I spoke with an Italian from Dublin studying why some Stage IVs survive 10+ more years (looking at gene expression profiles etc) to see if we can discover why they do so well. In his subset in Ireland, they constituted 9% of the patients with Stage IV her2+ bc.

I am hoping those treated at non-academic hospitals (obviously not you) will ask to have their tumor specimens before it hits the 5 year mark (when they are legally allowed to put them in the trash bin/ incinerator/etc) so if this researcher or others needs a larger number of patients to study (9% of her2+ patients is not that many patients) they could reach out to her2support.
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Old 06-11-2014, 07:23 PM   #8
lkc Gumby
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Re: Nine years her2 positive !!!!

Thank you all for your kind words.
Lani, My mother did not have "her 2 testing" she recurred after 20 years; massive mets to liver, a liver biopsy was not an option. Our familial hx is interesting as all females on my mothers side dec'd from BC. However not being Brac A positive and assessing other cases like mine it is felt bymyself, and concurred with my fellow researchers that there is most definitely another mutation out there. For that matter it may be a number of mutations that have not been definitively identified yet (and Yes Fox P 3 may be one) The very incorrect assumption is that if one tests neg for Brcca 1 or Brcca 2 they do not have a "hereditary mutation". Not true...We just don't know what those genetic mutations are yet.
Rest assured though, Most Clinical trials have a subset of genetic profiling components, so as we "speak" data is being accumulated to identify these genetic mutations. Once ID'ed Targeted tx is right behind.
There is however so many variables considering one's genetic make up and response to tx.
I am privileged and honored to be working in this field and honestly feel there is much hope with new txs and ongoing research for BC and particularly her2 dx.
__________________
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 06-11-2014, 07:23 PM   #9
suzan w
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Re: Nine years her2 positive !!!!

A big hug to you!!! This 9 year club is awesome!!!!! WooHoo!!!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 06-11-2014, 07:46 PM   #10
Bunty
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Re: Nine years her2 positive !!!!

Congratulations Linda - keep living life to the full!

Best wishes, Marie
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Old 06-11-2014, 10:21 PM   #11
Catherine
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Re: Nine years her2 positive !!!!

Congratulations on your 9 year anniversary and for driving over the road behind you. You have a great attitude and have a sweet way of sharing it. All the best!
__________________
Catherine


Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 3.2cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06, 3 of 14 lymph nodes pos, 33 rads after the surgery
1 year of Herceptin completed Dec 07
12 years and no recurrence as of April 2018
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Old 06-11-2014, 11:02 PM   #12
Jackie07
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Re: Nine years her2 positive !!!!

Congratulations!

It's good to hear from you. Please come back and visit more often.
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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
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GI - > yogurt
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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

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Old 06-12-2014, 12:21 AM   #13
michka
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Re: Nine years her2 positive !!!!

Congratulations Linda. 9x9 more years to come! :-)
__________________
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 06-12-2014, 02:23 AM   #14
Lien
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Re: Nine years her2 positive !!!!

Congrats! 9 years survival is awesome. 49 years is even better, so go for that

As to hereditary components: There's been a lot of cancer in my family, both on my mother's and my father's side. I recently gave a blood sample to the Dutch National Cancer Hospital where I had my rads. They are looking for genetic info and I was happy to cooperate.

There wasn't so much BC, but many different kinds of cancer and I wonder whether these were related. On my Mom's side:

Her uncle died of lung cancer
Her aunt died of BC
Her only brother died of pancreatic cancer
Her niece died of Non Hodgkin lymphoma (aged 38) (She only had two nephews, one niece)
She died of esophageal cancer herself
We lost touch with the rest of her family, so I don't know about them.

On my father's side:
Because he is Jewish and we live in Europe, most of his relatives did not survive the war.
But:
His only brother died of Hodkin's lymphoma
He had prostate cancer, but survived that

And then there's me, Breastcancer.

As 1 in 3 people develop cancer, the score in our family is much higher. I have always thought that there are more hereditary cancers than we know about at present. I also think that maybe the environment of the cancer cells determines (among other things) whether they can grow and metastasize. So if our genetic make-up is cancer friendly, we let the nasties grow bigger. If we could do something about that, we could keep the cancer cells in check.

Ofcourse I'm no researcher and I don't know nearly enough about it, but still... I wonder if any research is done into that.

I am so grateful for all those who are trying to find a way to stop cancer, who are researching, sharing info, going to conferences etc. I wish I could do that, but at the moment my other health issues keep me confined to the couch several hours a day. I can read though!

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 06-12-2014, 12:13 PM   #15
Pray
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Re: Nine years her2 positive !!!!

How Awesome is that! Gods blessings to you and your family! I'm in tears how happy I am for you and your family!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 06-12-2014, 06:37 PM   #16
caya
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Re: Nine years her2 positive !!!!

Great news Linda!
Big congrats on celebrating 9 years out, and wishing you many more years to come.

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
11 Years NED!!
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Old 06-12-2014, 06:52 PM   #17
tricia keegan
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Re: Nine years her2 positive !!!!

Huge congrats Linda, I'm seeing the Onc next week for results of my Mammo and hoping to celebrate nine years with you!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 06-12-2014, 08:39 PM   #18
Carol Ann
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Re: Nine years her2 positive !!!!

Such wonderful news like this always makes my day! Thanks for posting!

CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 06-12-2014, 09:13 PM   #19
sassy
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Location: Mountains of Virginia
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Re: Nine years her2 positive !!!!

Big congrats Linda from another Niner!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
12 YEARS NED!
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Old 06-13-2014, 12:28 AM   #20
Lisalou
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Re: Nine years her2 positive !!!!

Inspirational =Thanks for sharing and may the good news continue!
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[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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