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01-03-2011, 04:36 PM
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#21
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: 12 years and still counting
Pam, How are you doing? I was thinking about you while I was sitting in the waiting room. I hope you are starting to feel better. I am praying for you and send you a big hug. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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01-03-2011, 06:35 PM
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#22
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Senior Member
Join Date: Oct 2009
Posts: 98
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Re: 12 years and still counting
Kind of curious. I know 5 years is a big milestone. I'm wondering when do they start counting and why is 5 years significant?
Congrats on 12 years!
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01-04-2011, 09:56 AM
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#23
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: 12 years and still counting
Elaine,
Many congratulations and a very Happy New Year to you.
Best Wishes
Janie
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01-04-2011, 06:06 PM
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#24
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: 12 years and still counting
That is amazing, hopeful and wonderful! Congrats!! xo Suzan
__________________
 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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01-05-2011, 11:24 AM
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#25
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: 12 years and still counting
Elaine, didnt mean to cause any upset by asking you your stats. Anytime I read a post by a longterm survivor, I automatically look to see if they are er-/pr- like myself. I know hormone negative is harder to treat as we cant have the hormonals like femara and tamoxifen, and also some chemos dont work on us, so I am always on the lookout for an uplifting story on the hormone negatives, more so since I reached Stage iv. Thankfully there are a few er-pr- here, StephN and Courtney come to mind and they are doing well.
Anyway, its just thrilling that you are 12 years out! What a milestone, and long may it continue. I LOVE modern drugs.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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07-25-2011, 01:56 PM
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#26
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Guest
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Re: 12 years and still counting
please please live much much longer than 12 years or even cross 90 please..people like you give hope to live and inspire them to live...we must all pray for each other..
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07-25-2011, 08:06 PM
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#27
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years and still counting
Thanks for all the support.I am still here more than 12 1/2 years later !!!!!!! My goal is to live more than 90 years !!!!!!!!
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07-29-2011, 04:05 PM
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#28
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: 12 years and still counting
Elaine, Way to go....you are an inspiration indeed....keep the good health going! Ceesun
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10-06-2011, 09:54 AM
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#29
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: 12 years and still counting
Elaine,
Your signature didn't give me much info... were you stage IV? I'd like to join others in this thread with a congrats remark, but you have chosen to not share your story and I feel very left out.
I don't understand your reasons for not filling out your signature, but in the name of her2support, I feel that you need to do your part and share some of your story. What was your original diagnosis? Did you get Herceptin?
Please respond with your answers and help others to get the support they need.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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12-19-2011, 05:41 PM
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#30
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: 12 years and still counting
Thank you so much Elaine!!! You are indeed an inspiration. I really appreciate your honesty when you say that your stats etc. do not matter as much as your inner journey to health. I sometimes feel so let down by my body because it was so sick!!! But then I remember that 'peace comes from within' and I feel that inner strength. Thank you for sharing your good news!
__________________
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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12-19-2011, 05:43 PM
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#31
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Senior Member
Join Date: Oct 2010
Posts: 123
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Re: 12 years and still counting
Happy Holidays to you as well...You are truly an inspiration to all of us on here....Remarkable Story
__________________
found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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12-19-2011, 08:26 PM
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#32
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years and still counting
Thanks everyone. It will be 13 years and still counting in January 2012. I am planning to keep putting one foot in front of the other and keep going for many years.
To tell you the truth I don't look at other people's stats very often. I prefer to focus on today as much as possible.
Happy Holidays. Blessings of peace and good health to everyone in the future.
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12-23-2011, 10:42 AM
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#33
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: 12 years and still counting
Congrats Elaine,
you are definitely an inspiration and give hope to many.
continued Health and Happiness
Sarah
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12-23-2011, 12:58 PM
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#34
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Senior Member
Join Date: May 2011
Posts: 137
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Re: 12 years and still counting
Wow, 13 years! Truly awesome and so glad you shared the update Elaine! I did not look at the beginning date of the thread to see how old this thread was- but its so timely that I read through it today. This is exactly the encouragement and hope I need. After a run at stable I've had new concerns crop up for the first time. I am not as seasoned to the ups and downs and am trying to navigate back to the balanced perspective I typically have. So thank you for a big breath of inspiration and helping me feel like I can face it again!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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12-23-2011, 09:04 PM
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#35
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years and still counting
Thanks for all your positive comments. I am starting my 13th year after diagnosis. I am still learning, still proactive and aggressive, still questioning, still challenging and still doing everything I was doing a year ago.
Blessings of peace and health to everyone !!
Hang in there and keep putting one foot in front of the other always !!!!!!!!!!!!!
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12-24-2011, 12:17 AM
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#36
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: 12 years and still counting
Elaine
It is wonderful that you and nearly 13 years in the fight. May I ask what your stage and/or mets are, if any?
You live in one of the most beautiful places on Earth, as does my best friend. Surely, you can believe that the beauty of your surroundings plays a good role for your soul.
Best
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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12-24-2011, 02:20 AM
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#37
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: 12 years and still counting
13 years Elaine! Nice post to read on Christmas eve. Michka
__________________
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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04-01-2012, 11:07 AM
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#38
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years and still counting
Thanks everyone. Let's all keep going together !!
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06-11-2012, 01:09 AM
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#39
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Junior Member
Join Date: Feb 2012
Posts: 1
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Re: 12 years and still counting
Elaine -
I wrote to you privately, but I wanted to write here as well. You are living proof that it is more than just medical science, and no accident, that something from deep inside us, a higher power, that we have faith in, can add quality and time to our lives... Thank you for your expression of faith. In times of fear, pulling myself up and believing, living in the moment, so far, has helped me as well. I was diagnosed with Stage 3B in 2008, then a reoccurence in sept 2011, after all the treatments and surgeries (port in, port out, port back in..). I am keepinhg very busy day by day, when I'm not receiving treatment (on herceptin forever, thank you! and tykerb since last Nov... and i am off it right now, waiting for horrible mouth sores to heal)... I feel blessed... Inflammatory BC with a 10cm tumor and many positive lymph nodes removed 4 yrs ago.... and am still here.... with many friends and angels... I pray that Gods plan for me is to be helpful and an inspiration for others, AS YOU ARE!!!! Thank you Elaine!
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06-11-2012, 10:38 AM
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#40
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years and still counting
Thank you so much for your comments LadyRosli.
You are right. There is something God given deep within me mostly unknown to medical science that keeps me going. I don't know exactly what it is, except to say that it is showing me the way.
Everyone has what I have regardless of religious preference. It is a matter of finding a way to discover it.
Take good care of yourself. All the best to you too.
Last edited by ElaineM; 06-11-2012 at 10:41 AM..
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