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11-13-2015, 02:44 PM
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#1
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Member
Join Date: Aug 2015
Posts: 5
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Encouraging Survivor Stories
Hello,
I am ER, PR, and HER2 positive. I just finished round 5 of 6 of TCH. Then, onto radiation (micromatastasis found in sentinel node), and Herceptin for a year. I need to hear some success stories :-) It was stage 2, had a double mastectomy in July, then chemo...Are there any women stage 2 that are on the other side with good results? I appreciate any positive news you feel like sharing. Also, I am 44 with two boys (19, 14). Thank you so much!
Tracy
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11-14-2015, 01:45 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Encouraging Survivor Stories
Hi Tracy,
You're doing great by the sounds of it and it won't be long before you're finished and on the other side of this. There are lots of long term survivors here thanks to Herceptin being approved for early stage, I celebrated ten years out last July and can't believe how fast the years have flown by and they will for you too 
__________________
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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11-14-2015, 02:26 PM
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#3
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Senior Member
Join Date: May 2013
Posts: 570
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Re: Encouraging Survivor Stories
Hi Tracy!
Sounds like you are doing well through you treatment. I am glad to hear it. I can remember when I first joined this board, I would scan signatures looking for ladies with pathologies like my own and follow to see how well they were doing. I would caution against doing too much of that. We are all unique and our cancers too are unique. Don't let fear steal a single precious moment of your time. Get out there and just LIVE because you get to, take advantage of it.
My best, TA
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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11-14-2015, 03:54 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Encouraging Survivor Stories
Hi! like Tricia, I too celebrated 10 years NED in June 2015. She is a month behind me! There are several others in the 10 year club as well. I know, for me, Herceptin is my lifesaver. 10 years ago Herceptin was used mostly for metastases, and not for early stage BC. My oncologist prescribed it for me "off label" because it had not yet been approved by the FDC for use in early stage BC. Because it was "off label", my insurance company deemed it "experimental" and would not pay for it. Basically I went through almost every penny I had, and then some to pay for it myself. My success story sees me now, 10 years later, broke, but alive!! And very healthy for a 65 year old Grandmother with two 7 year old grandchildren, loving every minute of my most wonderful life!!! You have a great prognosis!!!
__________________
 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!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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11-14-2015, 07:39 PM
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#5
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: Encouraging Survivor Stories
Stage 2b here. Triple positive. 4 years out. Just passed the 4 year mark. I have some bizarre side effects still and have had some scares. But so far, I'm good and living my life fully and spherically.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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11-14-2015, 07:53 PM
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#6
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Encouraging Survivor Stories
Chiming in as a long term survivor; my 10 year 'cancerversary' is November 23. I was also diagnosed with stage 2, grade 3, triple positive bc. Now dealing with the aches and pains of getting older - it's a wonderful thing! Life is good.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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11-15-2015, 12:01 PM
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#7
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Encouraging Survivor Stories
You hang tough, Sister!
I am a 20 year survivor (or a 17 year survivor) depending on if you count from initial dx or recurrence. Either way, I'm still here. Read my tale in my signature and be inspired dear lady!
4th stage 9 cm invasive lobular bc, 2 out of 21 nodes. Mastectomy, tram flap reconstruction, Adriamycin and CMF for 9 mnths. Those were the days in 1995. Then only ev 3 mnth blood tests to go on.
1998, through very very slightly elevated liver enzymes, after 6 mnths I asked for a sonogram of the liver. SAVE YOUR EVERY REPORT. CHECK THE NORMAL RANGE. SEE HOW YOU TREND. I decided to speak up. Now you can't shut me up. Always like a lady, I ask questions allll the time. I apologize, the docs and nurses tell me, NO. YOU'RE DOING JUST WHAT YOU SHOULD DO. Mistakes happen. Things get missed. NO BODY LOVES YOU MORE THAN YOU.
So be proactive. With recurrence throughout my liver (too many to count), I went on Taxotere for 2 mnths and continued for 9 mnths. We were able to add Herceptin (hot off the presses, FDA fast-tracked out of clinical trials for metastatic patients). That would be me! (I ASKED to be tested for HER2, having read up about all things bc from '95.) I was positive 80% which is how they calculated back then.
STAYED ON HERCEPTIN FOR 10 YEARS. '98 - '08. Been off now for 7 yrs. Doing well.
I wish you much success.
I have been taking supplements (dozens of them, to boost the immune system, bust up tumors, fight off free radicals, energize me, blah, blah (through my integrative oncologist who is well-informed about nutritional things and who teaches meditation and guided imagery).
Been doing this every day since 1998. Talk to my body every day. MINDBODY connection is real.
BE WELL!
Hope my story makes you smile.
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-15-2015, 09:02 PM
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#8
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Senior Member
Join Date: Feb 2014
Posts: 52
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Re: Encouraging Survivor Stories
Triple positive, stage 2, grade 3 here. "Only" two years out but knocking wood and enjoying a very normal and very active life w. my husband and two boys (now 9 and almost 5).
Kathryn
__________________
Kathryn Ellman
8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
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11-16-2015, 09:25 AM
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#9
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Encouraging Survivor Stories
congratulations on getting through what i think is the hardest part of the bc journey. i am another long timer. over 10 years , stage IIIC enjoying life everyday.
__________________
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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11-16-2015, 10:02 AM
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#10
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Encouraging Survivor Stories
My congratulations to every one of you fighters. Good job!
It isn't easy but it is glorious.
I want everyone to join the Survivors Club!!!!!!!!!!!!!!!!
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-16-2015, 10:35 AM
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#11
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Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
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Re: Encouraging Survivor Stories
Triple Positive, Stage 2, 5 year survivor this month! Living in the moment, never in the past, never in the future. My journey gave me some great lessons and blessings - hoping yours will too!
Jessica
__________________
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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11-16-2015, 11:47 AM
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#12
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Encouraging Survivor Stories
Well said, Jessica. I learned many life lessons through cancer that enriched my life enormously, ironically.
I live in the present moment. I live with love, gratitude, compassion and generosity of spirit.
And I am always ready to offer my experience as a learning tool for others, to inspire them, to help elevate them.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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