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Old 03-14-2016, 07:33 AM   #381
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: Calling all stage iv sisters


Love your post! Certainly a great way to look at our purpose in life. I do believe we are here to help each other.

Take care,
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 12-22-2016, 02:05 AM   #382
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Join Date: Jan 2015
Location: SE England
Posts: 4
Re: Calling all stage iv sisters

Just coming up for 8 years since original DX (Multifocal ER+ PR- HER2+) and now Oligometastic with single met to Liver just found on PET/MRI

Have to decide whether Resection of Liver or biopsy & RFA w/Chemo is the choice. Not an enviable one.

Does anyone have experience of this and any suggestions / advice?

Thank you
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Old 12-22-2016, 06:38 AM   #383
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Location: New York, new york
Posts: 73
Re: Calling all stage iv sisters

I can radio frequency ablation ro a single liver met and have been ned for almost 3 years..it was easy...
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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Old 12-22-2016, 01:38 PM   #384
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Re: Calling all stage iv sisters

WOW EMY, GOOD TO KNOW. Hope it's available everywhere. Example , Some
places do lumectomy, and radiate the breast at the same time, called I ort I think.
Wasn't available at my hospital. Would have to go to cleveland clinic orCancer treatment
center in Philly. Had to do the 30 day thing.
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Old 12-24-2016, 07:57 PM   #385
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Re: Calling all stage iv sisters

Emy - I had a resection to remove 2 mets in Feb. 2005. Did chemo prior to surgery. Have been NED since. It wasn't as bad as I had anticipated. Best wishes!
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Old 06-10-2018, 10:24 AM   #386
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Re: Calling all stage iv sisters

As an update - had the Liver resection in Jan 17. Then onto maintenance TDM1 ever since. Year and a half on still NED. Doing the Healthy Healthy Healthy eating without fail.
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Old 06-20-2018, 05:22 AM   #387
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Re: Calling all stage iv sisters

Glad to hear that you you've had a good result! I used local procedures as well, but in the lung.
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Living with MBC for 11 years. Praying for NED forever!!
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Old 10-21-2018, 06:41 AM   #388
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Re: Calling all stage iv sisters

Stage 4, MBC bone liver and maybe lung. All was gone at end of Chemo NEAD since 2013 ( diag. 8/2012) still on herceptin , zometa and anatrosal. Life is good. wish some of the new adds would realize how a patient might feel based on their comments. they see positive I see negative...
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Old 10-21-2018, 05:57 PM   #389
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Location: Western Maryland
Posts: 36
Re: Calling all stage iv sisters

This is wonderful. Thank you so much everyone. I'm one of the newbies. I started at Stage 4
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, IDC
December 2017: treatment by homeopathic physician
January 24 2018: lumps in neck (supraclavical nodes)
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver but inconclusive since I refused dye injection
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very large and grown into skin, agreed to try radiation
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff????
Febuary 15, 2018: first radiation treatment, cried like a baby
March 1, 2018: first Herceptin infusion, cried uncontrollably
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments
March 21, 2018: applied to John Hopkins for lymphedema vein bypass surgery
March 22, 2018: second Herceptin infusion, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
June 15, 2018 discontinue Capecitabine since NEAD
July 31, 2018 Johns Hopkins Plastic and Reconstructive Surgery for consult for Vein Bypass Surgery for lymphedema, surgeon determined I am good candidate and surgery scheduled for October 5th...
October 5, 2018: Lymphaticovenous Anastomosis at Johns Hopkins Hospital. Surgery was poorly done and failed miserably, the swelling is worst than before surgery.
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Old 11-05-2018, 10:38 AM   #390
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Location: Monarch Beach, CA
Posts: 87
Re: Calling all stage iv sisters

Its been 5 years since my stage IV denovo dxd. Its been quite a journey and not always easy, but I am still here, still receiving herceptin and perjeta every 21 days. There is no end in sight as far as treatment goes, 82 treatments over 5 years! Guess we stage IV thrivers are also multi million dollar metavivors! I wouldnt be here if it wasnt for western medicine, brilliant doctors and scientists who can discover and design drugs that keep us alive. Full of gratitude 🙏🏼
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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