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04-07-2012, 05:42 AM
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#1
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Who We Are
I would like to introduce myself as someone more than an HER2 patient, and likewise, I'd love to meet you--know the essence of you. Who we are is so much more important than this disease.
I am Karen, married to Sherif, an Egyptian who works in finance. I work in real estate. I have an eight-year-old daughter, Yasmin. She is a third-grader who can put things into perspective when I get cloudy. She loves the arts and is strong in languages. We live on Long Island, New York. Being a Cancerian, I love the ocean and all it holds. I am also a child of the 60's and have a hippie heart. I had my own independent record label, specializing in reggae, from 1987-2000. I am a published imagist poet, and have won many writing awards for my short stories, including the 1999 Irwin Shaw Best Novel In Progress Award in Paris, France. (Would love to get to confer with other writers here). Other passions are calligraphy, cooking and one thing I'd love to learn: the craft of stained glass. I am World Trade Center survivor--that stays in my signature because the exposure affected my overall health in a major way. I was planning to adopt an Ethiopian child just prior to my diagnosis.
I believe in The Cure, not staging! I regularly read Scientific Spiritual Affirmations by Paramanhansa Yogananda and poetry, particularly naturalist Mary Oliver, Sylvia Plath, and most contemporary poets. I love the Enlightenment period, and Emerson and Thoreau.
And, yes! I loved I Dream Of Jeannie when I was little.
Love
Karen
__________________
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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04-07-2012, 06:59 AM
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#2
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Senior Member
Join Date: Dec 2010
Posts: 46
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Re: Who We Are
Karen
I think u pretty much know most of what goes on in my life..lol. We both live on Long Island, NY. and speak pretty much on a daily basis.e've become best friends on so many levels and not just talking about the c word. I also have 2 daughters, ages 19 and 21, who ironically too are both singers. (1 opera, 1 pop). I work in finance in Manhattan, NY. Though the C word never goes far away from my mind, I try (really try, hard sometimes) to keep my life normal tending to work , family, friends, and my daughters.
I love this board for the wealth of information and sharing that it provides. Thank you
Laura |
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04-07-2012, 11:44 AM
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#3
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Who We Are
Karen,
Great idea.
My name is Amy. I raised five kids, including a biracial niece, three boys and two girls, with my former husband (of 23 years). We didn't manage to stay married, but we did a pretty decent job as parents. Our kids now range in age from 23 to 33. I'm from Denver, Colorado, but lived in Germany from age 1 to 4 and on the East coast from age 4 to 14.
In 2008 I closed down my law practice and headed to Philadelphia to go to seminary. This was a big surprise to me, because I don't think I'm all that religious, but I do believe in God and I was/am convinced God wanted me to do that. In 2010 I transferred to a seminary in Boston. I'm going to get my M.Div. next month, and plan to start work on a doctorate (in social ethics) in the fall.
I am the granddaughter of an Armenian immigrant and a Montana farm girl on my mother's side, and a Pennsylvania Dutch grandmother whose family arrived before 1776 and an Irish-American grandfather on my dad's side.
I love music, art, live performances of any kind, movies, hiking, biking, and conversing. I love to cook, bake and entertain, though I haven't done much entertaining since I moved. I am curious about everything and I love studying and learning. I am madly in love with the natural world--beaches, lakes, mountains, prairies, canyons, deserts.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-07-2012, 03:59 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Who We Are
Great idea for a thread Karen!
I'm Tricia with two adult daughters and one son married with a little Grand daughter for me (Una) but living in Scotland so don't see her so often as I live in Ireland. Hubby and I live with my five cats by the sea in a very quiet village, I love walking, reading, swimming and spending time with my cats but also spend a good deal of time moderating some cancer support boards online and counselling at my local wellness cancer centre
__________________
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 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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04-07-2012, 04:03 PM
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#5
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Who We Are
I am Barb, a sixty three year old retired wife, grandmother and teacher. I taught kindergarten for thirty years, retiring almost four years ago. I began to write to the group when my sister was diagnosed with HER2 positive breast cancer. I am a twenty eight year survivor of breast cancer, myself (back before they were checking for HER2). I am also a survivor of endometrial cancer. I love to camp in our travel trailer, read, knit, crochet and do word games. I live rurally in central Pennsylvania, where my husband of almost forty three years retired from the state Bureau of Forestry. I am the mom of two grown kids and five awesome grandkids, whose ages range from ten to sixteen. Love the ocean, good food, and peace and quiet!
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04-08-2012, 02:26 AM
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#6
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Who We Are
I love this - we are so much more that the cancer that is in our bodies!
I am Amanda, 39 year old mother to three gorgeous kids - my daughters are 10 and 7 and my son is 5. I am married to a wonderful man and we have been together for 20 years in October.
I have done many things in my life - starting out as an Occupational Therapist and finding my way into sales and retail and marketing in the health sector. Upon having children and moving interstate away from family I decided to devote myself fully to raising my children but a few years ago saw me back studying - this time photography. Through image making I have discovered a new language, a passion for telling a story with an image.
I love music of all types, I play the violin and a little piano, I love to sing. I love riding my bike on the local trail, watching my daughter play basketball, listening to my daughter sing and play the piano, listening to my other son and daughter attempt the violin. I love going out to dinner and the theatre with my husband or simply sitting on the couch watching a movie together. I am an avid reader and lover of life and living!
I am very focussed on not being passive with this disease. About driving my own bus - I nurture my body with good foods and exercise, I nurture my soul with meditation and counseling and spiritual and self exploration, I help my body cope with treatments with complementary therapies, I keep myself up to date with the latest information and am a proactive advocate for women with stage 4 disease.
I too believe in "the Cure".
Nice to "meet" you lovely ladies.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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04-08-2012, 05:05 AM
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#7
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Who We Are
I just turned 60...yeah, and although I am in continual treatment, life is good. I am married, the mother of twin girls, soon to be 37, and a son who will be 35. They have blessed me with 7 grandchildren, who are the light of my life. I also have 2 black labs, sisters, who love me unconditionally.
I am a nurse, who worked occupational, mostly at nuclear plants all over the country...I have neen on Social Security Disability for 9 years, since being diag. stage IV.
I love being creative, food, crafts, sewing, flowers...and I also love a good Bloody Mary made with zing zang and guacamole. Cant forget chocolate, another staple in my life.
I try to be an advocate for people going through treatment...hoping I can remove some of the fear for others that I felt early on.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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04-08-2012, 10:13 AM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Who We Are
I an a retired teacher who has taught people of all ages and all levels from pre school to adults.
I have traveled, lived and worked in different countries.
I am also a life long student with several college and university degrees. I still enjoy learning and studying.
I enjoy crafts, cooking, reading, watching movies on T.V. listening to music and nature. I also have a container garden.
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04-09-2012, 06:27 AM
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#9
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Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
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Re: Who We Are
Excellent idea Karen! It's great to get to know everyone on a personal level other than the fact that we all are HER2+.
I am Jessica and I am 41 years old. I married late in life at age 37 and have no children other than my 2 cats and one German Shepard. Both my husband and I work in family businesses in Pittburgh, PA. I am a Human Resources Manager for my family's IT Management Company called Questeq. I feel so blessed to be able to work with my brother, mother, and father and although it's hard to run a small business some times, I enjoy every moment providing for 65 employees and their families.
I love to golf, read books, travel, but my real passion is cooking. There is nothing more important to me than my family. I tried to move to California when I was in my 20's and after 6 months, I found that my love for my family and friends back in Pittsburgh is what's important in life and that is where my home is and will always be
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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04-10-2012, 06:57 AM
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#10
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Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
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Re: Who We Are
I *love* this! Great idea, Karen!!
Hi! I am Kelly, tomorrow will be my 46th birthday (yikes!) I am a lover of books and art and family. I am married to Mike, my most amazingly wonderful husband is in law enforcement and just made it to the Sgt. list (yesterday)... so very proud of him! We do not have children, I miscarried in August of 2010, which led to my dx and not being able to have children. We do have a furbaby cat named Max.
I work in Human Resources and also have my own specialty paper business, designing wedding, shower, and party invitations as well as announcements of all kinds. I love paper, ribbon, glitter, rubber stamps, gluesticks and parties... So I decided to take all of my favorite loves and share them. For me, taking a thought and turning it into a beautiful piece of paper is creating art and helping to make memories... and i love that, it's what i do.
It's so very nice to "meet" all of you
K.
__________________
10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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04-10-2012, 09:10 AM
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#11
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Senior Member
Join Date: Mar 2012
Posts: 199
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Re: Who We Are
i love this thread too...we are so much more than our diagnosis
im new to the boards so i thought this would be a great place to introduce myself
my name is rose and i am a 43 yr old mother of 2 beautiful boys, 12 and 9. Wife to my hubby for 19 years! they are they lights of my life.
i am a retail buyer for a housewares company in toronto ontario but currently on leave. I also have my own business where i develop/create/market and sell fashion and gift items. I love what i do and can't wait to get back to it
i was a runner and did kick boxing before diagnosis and look forward to getting back into some sort of exercise regime. Although i think it will be gentler now (lots of battle scars)
i have an amazing circle of friends and family that have supported me through this journey and i am forever grateful
i am also grateful to meet women who are in the same "boat" although sad that this had to happen to any of us
nice to meet you all
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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04-10-2012, 09:20 AM
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#12
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Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
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Re: Who We Are
My name is Suzanne, I am 43 years old married with 2 girls ages 12 and 8. Both my husband and I are physical therapist assistants. He works home health and I am the clinical coordinator and instructor at a PTA program and do home health on the side. After 15 years of patient treatment I was ready for a change and teaching has given me a new outlook on my profession. I coach my oldest daughter's basketball team for the YMCA for the last 6 years and my husband coaches the youngest in soccer. I am from Colorado but for the last 15 years have lived in El Paso Tx. I do not claim to be a Texan always Coloradoan.
My husband and I race mountain bikes but only for fun. We are in no way professionals but enjoy the outdoors and staying fit.
I was adopted at birth so I do not know much about my medical history. Don't know if breast cancer runs in the family or not but hope in begins and ends with me.
__________________
 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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04-11-2012, 09:03 PM
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#13
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Who We Are
What a great idea!! We ARE more than a disease, it should not identify us.
My name is Alice, I am 55 and have been married to Mark - the love of my life - for 32 years. I was born in Montana, but moved to Texas when I was 6 and have been here ever since.
I worked for 2 years as a Pricing Analyst, and left that for my favorite job - a MOM! I have always loved being artistic and creative and was a partner in a Faux Finishing business for about 2 years.
I credit being in my current job ONLY because of my breast cancer. I am the interim Executive Director of the Texas Mamma Jamma Bike Ride. I learned about the inaugural ride while getting my last chemo infusion in 2009. It became the light at the end of my tunnel and gave me a way to pay it forward. Five months later I had raised over $10,000 and I rode my bike 100 miles for my first ever "century" ride. I've ridden every year, and have served on the Board of Directors. The ride has raised $1.4 million in the last 3 years and rather than funding research, the proceeds go to 10 local non-profit agencies who provide practically every service a breast cancer patient and their family would need. I am humbled daily by the people I meet and the stories I hear. I am blessed.
Last summer I got the urge to start my own Blog, This Home Plate: Biking and Baking Beyond Breast Cancer. It's been fun, but has had to take a back seat recently because of my new job and the upcoming wedding. I hope to start posting again real soon.
I have 3 grown daughters that we are very proud of - the oldest is 29 soon to be married in May, the middle daughter will be 27 in June and the youngest is 25 1/2 - the bride in my photo, her husband is presently serving in the Army. We also have two cats named ... Benjamin and what else but Franklin!
I tried out for the Wheel of Fortune 25 years ago, and made it all the way to the final call back, but unfortunately never got a letter telling me I was chosen as a contestant. 
Twenty years ago, our family lived in Milan Italy for two years and we were fortunate enough to do a bit of traveling and expose our family to many cultural experiences.
I have never met a craft that I didn't like. Pinterest is my new best virtual friend! I love gardening, cycling, running, and baking.
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9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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04-11-2012, 10:05 PM
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#14
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Who We Are
Went to the "Just for fun..." thread http://her2support.org/vbulletin/sho...&highlight=fun and reviewed the self-introduction I did 4 years ago - right after I'd lost another job!
Many of my college classmates are making plans to attend the 30th reunion this coming June. Though I can not make it, I've been enjoying communicating with my classmates via e-mail and Facebook.
June 1st was the day when we were told that my cancer had come back 5 years ago. June 5th will be the 'anniversary' of my brain tumor diagnosis 22 years ago. June 14th will be the 5th anniversary of my bilateral mastectomy. June 20th is going to be the 22nd anniversary of my first big surgery - a 23-hour feat to get rid of a huge life-long brain tumor. Then before Independence Day, we will celebrate our 24th wedding anniversary. July 17th will be the anniversary of the lumpectomy 9 years ago... Together we've had 6 major surgeries - definitely need to celebrate! Followed by the dates of my last home visit to Taiwan - 14 years ago!
In Mid August Father will turn 97. The following month, after the Moon Festival, Mother will turn 89... [Note: Father passed away on June 15th. He had sensed the physical changes and gave funeral instructions to 2nd Sister and 3rd Brother in early May.]
O, one of my nieces just e-mailed me about her parents' (my Oldest Brother and Sister-in-law) upcoming visit. They plan to stay for 5 days in early May. [Did I tell you Oldest Brother and I share the same Chinese Zodiac? Exactly 12 years apart, we are the 'Rat pack'...
__________________
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; 06-18-2012 at 02:59 AM..
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04-12-2012, 07:19 PM
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#15
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Who We Are
Hello There....My name is Mary Jo and I've been around here for awhile (thank God  ). I am married to my highschool sweetheart. We met when I was 15 and he was 16. We have been married 33 years and together 36 years. He started out as and still is my best friend. He treats me like a queen. He really does. I am thankful and know how blessed I am. My husband and I have 2 grown sons who are married to wonderful women. Our 2 daughter in laws are more like daughters to us and we've told them that if we could have picked our sons wives they are what we would have picked. Our oldest son and his wife have 2 children and a 3rd on the way in July. Jennah is 11, Isaiah is 6 and the new baby in July, is a boy. Our youngest son and his wife have a little girl. Lauren, is 2 1/2. We enjoy this new phase in our life. We are empy nesters who enjoy "our time" and our thankful our children are settled in their lives and happy. We also enjoy the time we have with our grandchildren. So much fun they are. An awesome blessing.
I was diagnosed with breast cancer at age 45. I am now 52. Breast cancer does not define me, but, breast cancer has changed me in a huge way. My journey has been a blessing and God has taught me so much that there is no way I could say "I wish this didn't happen to me." I live life differently now. Much more thankful. I enjoy each day fully.
I work part-time as a food server with our school district. I love my job. I love the people I work with and the little 4 year olds I serve breakfast and lunch too. I also help women who are diagnosed with breast cancer. I enjoy helping them through it all. I enjoy being a support and encouragement to them.
Life is good....God is good and I am a survivor in every sense of the word.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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04-12-2012, 08:05 PM
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#16
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Who We Are
My name is Nancy. My wonderful husband and I have been married 28 years. we have 2 great young adults. our daughter is 27 and our son is 22. They have made life very interesting with great pride and joy! We are not empty nesters just yet. (Does anyone have a rule book on how many times they can move back in? I believe my daughter is trying to set a record!) My husband works for an energy company and I have been a sub secretary for our school district for 14 yrs. The last 5 of which I have not worked much at all 2 of my brothers and my mother became very ill and passed away in this time along with my father and myself being dx w/cancer. My dad has lung cancer. So I will be going in to work tomorrow and putting my notice in that I will not be coming in any longer. My husband and I discussed it and until I hit my 5 year anniversary I will enjoy my home, garden, and doing some volunteer work. Things have been tight for a while and we have made it this far. we can hang on for couple more years. ( And if someone ever comes up with that rule book we just might be able to help my daughter out the door! lol! They are both kind hearted and we love them so.
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04-12-2012, 08:32 PM
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#17
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Senior Member
Join Date: Oct 2005
Posts: 215
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Re: Who We Are
My name is Jeanette, live in Florida the past 16 years. Just celebrated our 50th wedding anniversary, Hubby was career Navy, so we travelled a lot. Have 6 children, 13 Grands and 7 great grands. So thankfull to be here and see them all grow up . I was first diagnosed at 65, had an Mrm , then two years later found different cancer in other breast, could have just had a lumpectomy , but decided to go all the way.
I8 months ago started to lose a lot of weight, over 50 pounds. Found out had mets to liver , bones and blood, so the visits to the clinic continues. I take each day as it comes and just hope the treatment keeps on working.
I enjoy knitting for charity, knit a lot for a hospital in Uganda. One of my sons is a music director in a lovely church and the priest fron Uganda visits one a year and goes back with truly tons of knitted items. So I feel blessed that I am able to do just a little part for the Lord.
Its nic e to come here and get all the info and get to know the rest of you ladies and gents , Blessings to all, Jeanette
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04-15-2012, 05:08 AM
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#18
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Who We Are
Hi
I have a vague idea that there was a similar thres somtime back.
I am 71 and Hema is 63. She is basically a home maker but a Carnatic Music addict.She and a couple of her friends give lecture demonstrations on aspects of Carnatic Music.We have a Daughter and Son both settled in the US and US citizens.Hema loves music.
I have retired and we are living alone in our old family house in Chennai (Madras)
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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04-15-2012, 06:01 AM
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#19
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Senior Member
Join Date: Nov 2010
Location: Doylestown, ohio
Posts: 334
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Re: Who We Are
My name is Darlene, my life is not as interesting as some of you but here it is in a nutshell. I was in an abusive marriage for 4 years while living in Hawaii, got happily divorced and remained that way for 10 years and then I met Mr. Wonderful and we have been married for almost 15 years. We are from Ohio and live in Akron, Ohio. I was never able to have children but have a 28 yr old stepson that I absolutely adore. I was diagnosed with cancer right after my 49th bithday. I am a medical biller and coder and my husband (Les) is a teacher. We are currently building a cabin in Southern Ohio. We are doing it ourselves so it has been a work in progress for almost a year now but it is almost completed and looking really good. I take in rescues and I currently have 2 cats (one of which actually found my cancer) and 1 dog. They are my babies.
So many of you donate your time and energy to helping others with cancer but I on the other hand want nothing to do with cancer. I have done some walks and I will donate to non profit organizations but I try to live my life as if I never had cancer. Cancer has changed my life in so many ways. I am feeling really good and enjoying every day. Life is good.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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04-16-2012, 05:28 PM
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#20
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Senior Member
Join Date: Aug 2011
Posts: 271
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Re: Who We Are
My name is Jill. I have a 25 year old daughter, a stepdaughter 31 and a stepson 34. All three of my children live in the area and I love them dearly. My husband Nick and I will celebrate our 20 year wedding anniversary on New Years Eve of this year. Nick immigrated to the U.S from Germany when he was 4 years old. I am the author of a published book, Handbook for Managing a Productive Digital Environment and I am an account executive for a Communications Firm. I am a graduate of Illinois State University and was one of only 2 females that majored in Industrial Technology back in the 70's. My dad grew up on a farm, his mother died when he was 18 months old giving birth to a 12th child. My mother is a twin and also grew up in a large family of 10 children. Despite the hardships my Dad became an Illinois State Champion wrestler and got a full ride college scholarship to University of Illinois. His motto was I can, I will, I must which became a motto for me during my BC ordeal. I love photography, gardening, long walks outside, cooking and I am passionate about my family and friendships. I love to travel and I am curious about everything. I am a Christian and find great peace in my belief in God and his promise of eternal life. I do not want to sound braggish, but in the 18 months since I got diagnosed, I had a double mastectomy, a port installed, replacement surgery, 6 rounds of chemo, Herceptin infusions, 33 rounds of radiation, and I worked full time, we sold our town home, moved into an upstairs apartment in my 83 year old mothers building, tore down our small lake home and built our dream home on a lake. We will be spending long weekends at our lake home and working remotely when we can. I also work full time and met my sales quota last year. It was a difficult year, but you ladies on this site have inspired me to move forward...We can, we will, we must!
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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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