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12-13-2011, 06:10 PM
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#1
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Member
Join Date: Sep 2011
Location: Friday Harbor, WA
Posts: 14
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Re: Calling all stage iv sisters
Hey Sisters,
Yesterday I was told I have made a full response to treatment. All the mets in lungs, and all cancer gone. Was diagnosed in July 2011 with 3 large tumors in right breast, lymph in neck etc. Was treated with herceptin, tykerb, and chemo (paclitaxel). I am 50. I now continue with herceptin and head to the Dr. Disis in Seattle for vaccine trial. I am blessed!
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09-11-2011, 11:30 AM
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#2
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
@KG1993--I just want you to know that what it says on this site about liver metastasis may be out of date, or it may only apply to massive metastasis that has progressed to the point of liver failure. I have a few small lesions on my liver. They are now much smaller than when they were found in April. So don't let what this board says about it freak you out.
__________________
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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09-11-2011, 12:56 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
L auriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _____________________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)
Total 84 members* and 361 * years 4 months as of Oct 1, 2011
@ - members gleaned from other threads
From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.
__________________
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; 10-01-2011 at 12:45 AM..
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09-17-2011, 05:43 PM
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#4
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Calling all stage iv sisters
I'll add myself to the list here - Stage 4 since June 2011 - mets to lungs, skin and axilla node.
This thread gives me hope on days like today when I am battling a temp (struggle with my neutrophil counts on this treatment) to know that it will be worth it. I feel great most of the time. I spent all day yesterday gardening and most of the time still feel pretty good apart from fatigue from the treatment and the odd issue with treatment side effects.
The wonderful sisters on here inspire me daily.
__________________
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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09-17-2011, 05:54 PM
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#5
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Member
Join Date: Feb 2010
Location: Wisconsin
Posts: 13
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Re: Calling all stage iv sisters
Stage 4 since Feb 2007 - almost 5 years!
__________________
diagnosed 1/07
bilateral mastectomy 2/07
chemo 4-6/07
started Herceptin 4/07
radiation to lower back 8/07
reconstructive surgery 6/08
off herceptin 5/09
radiation to neck 8/09
hysterectomy 9/09
started Arimidex 10/09
off Arimidex, started Femara 3/10
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09-17-2011, 07:10 PM
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#6
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Senior Member
Join Date: Sep 2010
Location: New hampshire
Posts: 44
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Re: Calling all stage iv sisters
Stage 4 since Jan 08, only on second chemo, expect to see my 9 and 15 year old daughters into adlthood!
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09-19-2011, 03:59 AM
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#7
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Member
Join Date: Dec 2010
Posts: 17
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Re: Calling all stage iv sisters
Thank you all for your reply's, i had a bad day saturday wondering if this chemo will work or not.. I got baptized at church yesterday along with my twin sister and i just have to believe that i will be ok.. Thank you all again and the best of luck to you all... Jeana
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09-19-2011, 10:00 AM
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#8
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Senior Member
Join Date: Sep 2010
Location: New hampshire
Posts: 44
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Re: Calling all stage iv sisters
I am not very adept at this site, but if you search TDM-1 you will find a post of very easy petition to sign attempting to get the FDA to allow access to this fabulous drug for us stage 4 people. I think we all need to sign= it is the best hope out there of NED with minimal side effects! Phil has been amazoing at doing the legwork to get this FDA to wake up and allow access! Than-you Phil!
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09-20-2011, 05:56 PM
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#9
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Calling all stage iv sisters
Thank you all!
Your hope-filled stories were exactly what I needed!!
I had a particularly discouraging series of appointments with my various doctors today. They seemed to think that I should be very encouraged by the statistics they quoted: "your chances of 5 year survival are 50/50" ". That won't even get my boys out of high school! What about seeing them married? I want to be a grandmom!
All the joy was sucked out of me. I felt like I'd been hit by a ton of bricks. All this chemo, surgery, radiation...for a 50% chance at surviving 5 years?! I cried all the way home. My husband was pretty shaken up too.
Then, we got home...I logged in here...and my HER2 sisters gave me hope again!! So many success stories! 3 years, 5, 10 years! So much joy!!
And, Tricia K, when I read about you and your beautiful grand, and great-grandchildren...I cried again, but for a MUCH HAPPIER reason!! You are amazing!! Thank you, Thank you!!
I'll remember you all in prayer!
Stay strong!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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09-20-2011, 08:16 PM
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#10
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Calling all stage iv sisters
Hi Lil Sis,
God is good all the timek! Great Attitude! Please know you and your family are in my Prayers also!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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10-10-2011, 02:11 PM
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#11
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
L auriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)
Total 85 members* and 370 * years 4 months as of Oct 10, 2011
@ - members gleaned from other threads
From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.
__________________
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; 10-28-2011 at 11:52 PM..
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10-11-2011, 08:17 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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Calling all stage iv sisters
Well, isn't this the most marvelous post!!!! Add my name, please. Jean you rock, as always!
Andi BB '95 Stage 4 invasive lobular carcinoma (L breast -- 9 cm tumor) + 2 lymph nodes out of 21. ER/PR-. Mastectomy and tram flap reconstruction, Adria x 4, CMF 8 mnths. No one was talking HER2 back then.
'98 metastasized throughout liver. HER2+. Herceptin in clinical trials and unavailable. FDA fast-tracked H and it became available September 28, 1998. (I'd been dx in Aug.) 8 mnths Taxotere, Herceptin added in Nov of '98. Took it for 10 Years. Now 3 yrs FREE. Free of H, free of canser. Feeling great!
Take a gegillion supplements (per NY onc who specializes in this -- including necessary dosages -- ev single day AM & PM since '98) -- MOST important during chemo, to boost your immune system and energy level, keep heart strong, fight off free radicals and way more -- despite other 4 oncs who I love but can't help being mainstream conservative and frankly know little about supplements. They worried the supplements would adversely impact the efficacy of the chemo. I listened to my gut and decided to be extraordinarily brave and trust my instincts. I took the supplements. All of them.
'99 officially considered in cautious remission. It was decided by 2 out of 3 independent radiologists that the spots they see in CTs are not tumors but the dead remains of tumors, necrosis. I remain stable to this day. 12 yrs stable and thriving.
You too can be a miracle, defy the odds, trample on the stats and passionately work at remaining full of the Energy that is composed of: Love, Joy, Kindness, Caring, Thoughtfulness, Forgiveness, Humor and much Laughter, Gratitude (for your many blessings) and Awe. Hug every one, and do it for a few seconds longer than you normally would.
Stand clear of all: anger, resentment, blame, remorse, sorrow, FEAR, worries and uncertainty.
SEE yourself vividly far far into the future. Feel it! KNOW IT! OWN IT! Use the power of the energy of your thoughts positively!
Yes, I know this is a really really really tallllll order -- but YOU CAN DO IT. BELIEVE!
If one person has survived your kind of canser, SO CAN *YOU*!
Sending loving, healing energy to all my Sisters... You are radiant Souls, with a mind and body. Connect with your Spirit. Listen to your Inner Voice, not the voice in your head.
Focus all your energy on healing. And take good care of you.
Omega 3 is essential for so many things -- bc, joint pain, arm and leg pain. Read RB's posts on this, please!!
__________________
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...
Last edited by Andrea Barnett Budin; 10-11-2011 at 08:26 AM..
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10-11-2011, 10:12 AM
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#13
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Calling all stage iv sisters
Hi Andy
Really interesting about you taking a supplement for all these years! Some ppl believe that as we live in an eco system we have the cure already but don't know what it is yet! Wonder if some micro-nutrients in your supplement helped to keep you cancer free?
Ellie
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10-11-2011, 10:47 AM
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#14
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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: Calling all stage iv sisters
YES! I thoroughly believe my multitude of supplements keep me healthy and well. Immune boosters are imperative. Omega 3. C. B-12 for energy. Flaxseed Oil. Co-Enzyme Q10. D-3. E.Green Tea. Resveratrol. Selenium. Zinc.
I am dedicated to staying with my supplements (recommended by one of my oncs who specializes in this, plus meditation, guided imagery, and my firm belief in the mindbody connection!
I KNOW my body hears everything I think and say, everything I whisper, and it responds as I instruct. It seems to have no sense of humor, so I stay clear of, I wish I was dead, You're making me sick, blah, blah.
I troll my brain throughout the day for negativity seeds and consciously choose to reject them. They are poisonous! Whereas loving, compassionate, caring energy draws wellness to you and those around you.
That's my take. And I'm sticking with it!
__________________
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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10-11-2011, 04:51 PM
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#15
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Member
Join Date: Dec 2010
Posts: 17
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Re: Calling all stage iv sisters
Thank you Jackie for your post...My cancer has spread to my chest wall, and lung... I am back on chemo and have 3 more round's of it and then I will get another scan to see if it is doing any good...I pray that it does. I haven't given up!!! Thank's again, Jeana
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10-11-2011, 10:07 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: Calling all stage iv sisters
Jeana,
I'm so sorry your cancer has spread! Please know you are in my prayers!
Colleen's sister Nancy
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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10-12-2011, 03:08 AM
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#17
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Calling all stage iv sisters
Thanks Andi BB. I am dosing Hema with flaxseed added bread.Olive Oil,Canola Oil,Neurobion Forte(a vit B supplement) and graviola.She has calcium for her bones and a multi vitamin without folic acid (aggravates xeloda side efects).She is full of enrgy.All the best
__________________
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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10-12-2011, 06:33 AM
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#18
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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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Calling all stage iv sisters
What I've learned since my initial bc dx, and the recurrence -- and what I believe to my core, is that what you want already exists. It blows my mind, but we are each empowered to do more than hope and pray (which are essential as well for sure!).
I saw a troubled young boy on Oprah once who'd been through great emotional upheaval in his young life and had a lot of wonderful therapy. This little boy said (what he'd learned through his trials) DON'T HOPE. DO!
Whatever we focus on all day comes to materialize in our lives. That's both the good news, and the bad. But YOU have the power to harness that.
Granted, it is darn near impossible to wrestle your thoughts, but it can be done. We can consciously choose what we want to be thinking. We have the power to do that! I AM STRONG, BRAVE AND DETERMINED is my mantra. Not that I think I am the first two, but they are precisely what I strive to be. I want to show my daughters how to face adversity, to reach for grace. To be able to find joy and even peace KNOWING what you desire is being magnetized to you by your loving, compassionate, generous, giving, appreciative, forgiving Truest Self. I see myself as a Soul, or a Spirit, with a mind and a body. And that is exactly how I see others...
Brave is not the absence of fear, it is doing what you have to do anyway. I listen to my Inner Voice, which I believe is my divine, God-given Spirit, or Soul. I trust it implicitly. It is the Essence of who I am. It KNOWS and guides me, protects me and loves me more than any one could possibly ever do. It is full of the energy of my sacred Source. It only wants what is best for me.
(Whereas the voice in my head is out for itself and maligns and messes with me, taunting and haunting me.)
I once thought I was the helpless receiver of it's jabs, but now I KNOW I can banish those thoughts. I won't allow them to invade my mind and poison my life.
HEALTHY AND WELL are the words I program into my head each day, instead, as a clear message. The body follows the commands it hears from you. That's its job. I don't want the voice in my head dictating my life. I want to take charge. And whenever I think about that, I realize I am choosing to connect with my Spirit, and let it lead the way. That is the True Me.
Keep making your Intention and Expectation vividly clear, to your body, and to the Universe! Both will respond in kind. Positivity begets positivity. And negativity calls more of the same.
I am sending loving, healing energy to each and every one of you...
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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10-14-2011, 10:56 PM
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#19
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Calling all stage iv sisters
Gotta love that Andi BB
:-)
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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10-15-2011, 02:29 AM
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#20
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Calling all stage iv sisters
Wow - AndiBB - you are amazing! Thank you so much for your posts this week. A powerful mind and spirit in conjunction with powerful medicine and diet and supplements - now that sounds like a rounded treatment plan to me!
Thank you :-)
__________________
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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