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Old 05-08-2011, 09:24 AM   #61
Sheila
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Re: Calling all stage iv sisters

I am going to tally all the Stage IV years....I'll bet the number will be astounding!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 05-08-2011, 01:37 PM   #62
DMWARN
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Smile Re: Calling all stage iv sisters

I have followed this site for my wife and used it to pass on all the good news that I received from it. My wife is a 11.5 year surviver. She was 51 years old when Breast cancer struck her in 1999. After standard treatment the cancer re-appeared one year later in her spine and lungs. Her Doctor then did another pathology test on the breast tissue and determined that she could quilify for a new drug called Herceptin. That drug along with Zometa has kept the cancer at bay or stabilized for 10 years. I know that Herceptin along with lots of prayers and family love as well as using this site to pass on hope has kept her alive to enjoy our 8 grand children, five of them born after her first diagnoises. She is still with us this mothers day and doing fine. She wanted to pass on to all of you that one of the key pieces of advice she gleened from this site was the information to keep using fish oil and COQ10. Two years ago she got a low MUGA score and the doctor was concerned and thouht he would have to stop the Herceptin treatment. After reading one of the posts on this site I told her about the use of fish oil and COQ10 used by some of your members. She took another MUGA test 3 months later and her heart was back up to satisfactory strength and she has not had a problem since. I just wanted all you wonderful fighters out there to know that there is hope and everyday you fight and live is one day closer to the cure. When my wife was first given the bad news there was only Herceptin. Now there are two or three more drugs of choice to fight with. My wife's doctor has said that she will out live him espcially now with all the options he has to go to in the future. God bless you all and all the support you give to all of us and that includes us husbands who use this site also.

From one loving husband.
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Old 05-08-2011, 07:28 PM   #63
mamacze
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Re: Calling all stage iv sisters

I can't think of a better mother's day greeting... WOW....11.5 years. Such a bucket full of hope. A gift that just can't be beat! Thank you so much for sharing this wonderful tidbit about your wife. How lucky she is to have such a supportive husband and family. Godspeed and continued good health!
Love Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 05-09-2011, 07:12 PM   #64
linda b
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Smile Re: Calling all stage iv sisters

stage 4 for 4 years
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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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Old 05-09-2011, 10:25 PM   #65
Angela R
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Re: Calling all stage iv sisters

Dear ladies.
I can't tell you how much I appreciate this thread. I just joined yesterday. My initial diagnosis and treatment was in 2009 but a nasty recurrence this April has bumped me along the staging scale and I'm very aware of my mortality. Every day is precious and I thank you all so much for reminding me that many more precious and fulfilling days/months/years are possible.
Much love
Angela
Melbourne, Australia
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Old 06-15-2011, 04:54 PM   #66
Jackie07
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Re: Calling all stage iv sisters

Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.

And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us.


Trish ----------- Dec. 2006 ------------ 4yrs 6 months and counting
Pam P. -------- Sept. 2002 ------------8 yrs 9 months and counting
Colleen007 --- Oct. 2005 -------------5 yrs 8 months and counting
Missyw -------- Aug. 2006 ------------4 yrs 10 months and counting
Joan M -------- Jan. 2007 -------------4 yrs 5 months and counting
Kathy T ------- [Jan. 2003] ------------8 yrs 5 months and counting
Nancy L ------- Feb. 2009 ------------ 2 yrs 4 months and counting
Chelee --------- Dec. 2005 ------------ 5 yrs 6 months and counting
Lori R ---------- Oct. 2007 -------------3 yrs 6 months and counting
Deena H ------- Jan. 2011 --------------------5 months and counting
Barbara H ----- May 2004 ------------7 yrs 1 month and counting
Chrisy ---------- Sept. 2004 -----------6 yrs 9 months and counting
Sheila ---------- Sept. 2003 ------------7 yrs 9 months and counting
Nsebesta ------ May 2004 ------------ 7 yrs 1 month and counting
Mamacze -------------2004 -------------7 years and counting
Ceesun ----------- over 4 years ------- 4 years and counting
Hutchibk ------ Aug. 2005 ------------- 5 yrs 10 months and counting
Emilieb --------- Jan. 2010 ------------- 1 yr 5 months and counting
DEBBIE S ------- Oct. 2004 ------------- 6 yrs 8 months and counting
Krisvell --------- Nov. 2010 -------------------- 8 months and counting
SuThorn --------Sept. 2007 ------------ 3 yrs 9 months and counting
CourtneyL ----- April 2008 ------------ 3 yrs 2 months and counting
Hema ------------ March 2011 -----------------3 months and counting
Schoolteacher - Dec. 2007 ------------3 yrs 6 months and counting
SoCalGal --------- March 2007 ---------4 yrs 3 months and counting
MaryL ------------ July 2004 -------------6 yrs 11 months and counting
PatE -------------- Oct. 2007 -------------3 yrs 8 months and counting
KDR --------------- June 2010 ------------1 yr and counting
Flossie ------------ July 2008 -------------2 yrs 11 months and counting
Marilyn ---------- Jan. 2001 ------------10 yrs 5 months and counting
Kim in CA -------- Sept. 2001 -----------9 yrs 9 months and counting
Adriana Mangus July 2003 ------------7 yrs 11 months and counting
Kim in DC --------- Feb. 2008 ----------- 3 yrs 4 months and counting
Fauxgypsy -------- Feb. 2007 ----------- 4 yrs 4 months and counting
DianaMK ---------- June 2010 -----------1 yr and counting
[SoCalGal counted so far 33 members living 145 total] I counted 35 members living 168 years and 9 months]
Tonya -------------- Aug. 2006 -----------4 yrs 10 months and counting
Asahizuru ---------------- 2002 ---------- 9 yrs and counting
Vivienne [Mom of] March 2011 -------------- 3 months and counting
Radiant ------------------- 2010 -----------1 yr 6 months and counting
Ahoff -----------------------2010 -----------1 yr 6 months and counting
Sherryg683 -------- Dec. 2005 ---------- 5 yrs 6 months and counting
Kavy ----------------- Nov. 2005 ----------5 yrs 7 months and counting
DQ1 ------------------------- 2011 -
Unregistered --------Jan. 2007 --------- 4 yrs 5 months and counting
[DMWARN] [wife] ------ 2000 --------- 11 yrs and counting
Linda b --------------- Jan. 2007 -----------4 yrs 5 months and counting
Angela R ------------------- 2011 ------------------2 months and counting


Total: 48 members living 220 years and three months as of June 15, 2011
[Please add/correct if you notice any errors.]
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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
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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
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Irrtbl bowel 1'09
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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

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Old 06-16-2011, 09:28 AM   #67
hraby73
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Re: Calling all stage iv sisters

Thanks, Jackie07, for directing me to this thread. Very encouraging to see so many people living with stage iv. I was initially diagnosed on 4/1/11 with stage iv, and I went through a few weeks thinking I had an immediate death sentence. With a 7 year old daughter, that is not what I wanted!
I just had my first set of scans since starting treatment and have had a wonderful response to weekly Taxol and Herceptin. I hope to continue that path and be one of the lucky ones who lives with stage iv for a long time. I am currently reading "Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer" and it is also giving me a lot of hope!
Thanks, ladies, for sharing your stories of strength!
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Holly
Initial dx 4/1/11 at age 37
stage IV, mets to liver, lungs
ER+, PR+, her2+
4/18/11 start Taxol, Herceptin
6/6/11 CT shows 50% reduction
11/22/11 CT shows no measurable tumors
11/29/11 trade Taxol for Tamoxifen
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Old 06-17-2011, 06:51 AM   #68
Kmswilson
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Re: Calling all stage iv sisters

I found this board and post shortly after I was diagnosed as stage IV in early January 2011. When I received the diagnosis in January, it originally felt like they were telling me there was very little hope and to say my goodbyes. I was devastated for my 4-year-old and 2-year-old. I clung to the fact that my surgeon told me that remission was possible, and however long remission lasted was between me and God. After reading all of the stories on here, I realized it was more than possible, it was going to happen! Every time I read a post from someone else who is stage IV and has beaten the odds, or is around after a long fight, it adds to my resolve to beat this crap into remission until a cure can be found! After my third set of scans, they discovered new liver lesions, and I was scared, wondering if this was the beginning of losing control over this beast. But then I read stories of the many ups and downs throughout these journeys, and it again gives me the boost I need to face it head-on. Thank you all so very, very much for sharing your stories. This is all so scary, but not nearly as much so with so many people to turn to who have gone through the same or a similar experience. I am humbled by all of your courage!
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Krissi
12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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Old 06-17-2011, 06:57 AM   #69
Mtngrl
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Re: Calling all stage iv sisters

Hello, Stage IV sisters. I'm one of the newbies. I was Stage IV at diagnosis, on May 24, 2011. I have IDC in my left breast and have confirmed mets to the liver and possible mets to lungs. I have had three treatments of Taxol and Herceptin, with not too many side effects and no follow-up scanning as yet. I don't have any tumor markers.
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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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Old 06-17-2011, 07:00 AM   #70
Mtngrl
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Re: Calling all stage iv sisters

Thank you for taking the time to do this tally. It is wonderful to have this information, and it's very encouraging.
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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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Old 06-17-2011, 12:54 PM   #71
Ceesun
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Re: Calling all stage iv sisters

Jackie, That count up you did is remarkable--what a kind gal you are...encourages so many. Ceesun
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Old 06-17-2011, 07:03 PM   #72
Vicky
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Re: Calling all stage iv sisters

Hi everyone, I am a newbie here, although I've been reading for awhile. I was dx stage IV 1 hour before I was due for infusion for what we thought was stage III IDC in my right breast. I felt really fortunate to get on a trial for TDM1 and after 3 treatments my liver mets completely disappeared and there was shrinkage in the mets to my spine (18mm-13mm) and a smaller shrinking in the mass in my right breast from 4.4 cm to 4.2 cm. My onc. seemed pleased with the results and we will stay the course for now with TDM1.

I am also greatly inspired and encouraged to see so many stage IV survivors, thriving and living a good life! Thanks to all the veterans showing up to support and encourage all of us newbies, it truly makes a difference!

Vicky
__________________
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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Old 06-17-2011, 09:06 PM   #73
tammymarie1971
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Posts: 198
Re: Calling all stage iv sisters

Hi Ladies, I haven't been here in ages!! I also wanted to weigh in here...I was dx'd in Dec.'01 and have been stage 4 since Mar'04 with met to liver and then may'05 with bone mets...I have recently (christmas time) found out that there is once again mets to the liver...I had to go off of H in September'10 because of heart issues, scans showed only bone involvement at this point...however I started having issues and my ca15-3 gradually climbed from 88 to 295, scans showed liver tumor, back on H quick!! tumor markers down to 177 with 1st treatment back. However last week tumor markers back up to 255 now and I just feel yuckier...appetite issues, off and on nausea, excessive heart burn, and just generally don't feel sick enough to stay in bed, but not well enough to do much!! Sound familiar to anyone...
Heart is becoming issue again, but I am afraid to stop again because "the big wigs in charge?" have told my onc that I will lose H permanently if I stop again....Hmmmmm dropping dead suddenly because of heart issues is an easier death than the one I have imagined...LOL... I firmly believe that I will go NO WHERE until my Creator says it's time!!! There is freedom in that!!!!
Anyway, cardiologist will try upping my meds first, and then we'll see.

I am going to do the fish oils though and Omega 3..thanks to the wisdom of you ladies!!
I am now waiting for approval and paper work crap to go through so I can add tykerb to my regime...

Next week I get to see my son get his high school diploma!!! He was 8 when I was dx'd..I got to turn 40 last month and my hubby and I have our 20th anniversary next month!!
God has been faithful and merciful to my family and we will be grateful no matter how things "play out".

Thanks for letting me go on and on (not that you had much choice!! LOL)
I hope this post came across as encouraging to newbies as I meant it!!!
Life has been good to me!! Hey there is a song in there somewhere!!!

Love to you all....
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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Old 06-17-2011, 09:37 PM   #74
StephN
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Re: Calling all stage iv sisters

Hey Tammymarie -
Yes, long time, no see. But sorry to hear you have the stubborn liver met. Outweighing that is all the GREAT news about your family milestones. And I am sure there are more to come.

I have somehow missed adding my two cents and 9 years + worth of stage IV to this thread. But here I am to add one more hopeful story to this group.

We have more than one thread on these boards listing survival stories. Great to have so many add theirs!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-17-2011, 10:08 PM   #75
Jackie07
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Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

Stage IV Diagnosis
Trish – Dec. 2006 4 yr 6 month
Pam P. – Sept. 2002 8 yr 9 month
Colleen007 – Oct. 2005 5 yr 8 month
Missyw – Aug. 2006 4 yr 10 month
Joan M – Jan. 2007 4 yr 5 month
Kathy T – [Jan. 2003] 8 yr 5 month
Nancy L – Feb. 2009 2 yr 4 month
Chelee – Dec. 2005 5 yr 6 month
Lori R – Oct. 2007 3 yr 6 month
Deena H – Jan. 2011 5 month
Barbara H – May 2004 7 yr 1 month
Chrisy – Sept. 2004 6 yr 9 month
Sheila – Sept. 2003 7 yr 9 month
Nsebesta – May 2004 7 yr 1 month
Mamacze – 2004 7 years
Ceesun – over 4 years 4 years
Hutchibk – Aug. 2005 5 yr 10 month
Emilieb – Jan. 2010 1 yr 5 month
DEBBIE S – Oct. 2004 6 yr 8 month
Krisvell – Nov. 2010 8 month
SuThorn – Sept. 2007 3 yr 9 month
CourtneyL – April 2008 3 yr 2 month
Hema – March 2011 3 month
Schoolteacher – Dec. 2007 3 yr 6 month
SoCalGal – March 2007 4 yr 3 month
MaryL – July 2004 6 yr 11 month
PatE – Oct. 2007 3 yr 8 month
KDR – June 2010 1 yr
Flossie – July 2008 2 yr 11 month
Marilyn – Jan. 2001 10 yr 5 month
Kim in CA – Sept. 2001 9 yr 9 month
Adriana Mangus – July 2003 7 yr 11 month
Kim in DC – Feb. 2008 3 yr 4 month
Fauxgypsy – Feb. 2007 4 yr 4 month
DianaMK – June 2010 1 yr
[SoCalGal counted so far 33 members living 145 total] I counted 168 year
Tonya – Aug. 2006 4 yr 10 month
Asahizuru – 2002 9 yr
Vivienne [Mom of] – March 2011 3 month
Radiant – 2010 1 yr 6 month
Ahoff – 2010 18 month
Sherryg683 – Dec. 2005 5 yr 6 month
Kavy – Nov. 2005 5 yr 7 month
DQ1 – 2011
Unregistered – Jan. 2007 4 yr 5 month
[DMWARN] [wife] – 2000 11 yr
Linda b – Jan. 2007 4 yr 5 month
Angela R – 2011 2 month
Hraby73 – April 2011 2 month
Kmswilson – Jan 2011 5 month
Mtngrl – May 2011 1 month
Vicky – March 2011 3 month
tammymarie1971 – Dec 2001, March 2004 7 yr 3 month
Total 54 members and 228 year 5 months as of June 18, 2011 (according to the postings on this thread.)
__________________
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
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Old 06-17-2011, 10:34 PM   #76
tammymarie1971
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Location: British Columbia, Canada
Posts: 198
Re: Calling all stage iv sisters

Thanks for adding me Jackie..Don't forget Steph!!!
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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Old 06-17-2011, 11:54 PM   #77
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

[Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.

And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong; and the increasingly 'painful' mammagram I'd been experiencing for four years wasn't because 'some women' have painful mammagrams...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

(Initial Diagnosis) Stage IV Diagnosis _______Triumph years since Stage IV

Trish – (May 2004) Dec. 2006______________4 yr 6 month and counting
Pam P. – (June 2001) Sept. 2002____________8 yr 9 month and counting
Colleen007 – Oct. 2005 ___________________ 5 yr 8 month and counting
Missyw – (Jan 2001) Aug. 2006 _____________4 yr 10 month and counting
Joan M – (Sept 2003) Jan. 2007 ____________ 4 yr 5 month and counting
Kathy T – [Jan. 2003] _____________________ 8 yr 5 month and counting
Nancy L – Feb. 2009 ______________________ 2 yr 4 month and counting
Chelee – Dec. 2005 _______________________ 5 yr 6 month and counting
Lori R – Oct. 2007 ________________________ 3 yr 6 month and counting
Deena H – Jan. 2011 ______________________ 5 month and counting
Barbara H – May 2004 ____________________ 7 yr 1 month and counting
Chrisy – Sept. 2004 _______________________ 6 yr 9 month and counting
Sheila – Sept. 2003 _______________________ 7 yr 9 month and counting
Nsebesta – May 2004 _____________________ 7 yr 1 month and counting
Mamacze – 2004 _________________________ 7 yr and counting
Ceesun – over 4 years _____________________ 4 yr and counting
Hutchibk – Aug. 2005 _____________________ 5 yr 10 month and counting
Emilieb – Jan. 2010 _______________________ 1 yr 5 month and counting
DEBBIE S – Oct. 2004 ______________________6 yr 8 month and counting
Krisvell – Nov. 2010 _______________________8 month and counting
SuThorn – Sept. 2007 _____________________ 3 yr 9 month and counting
CourtneyL – April 2008 ____________________ 3 yr 2 month and counting
Hema – March 2011 ______________________ 3 month and counting
Schoolteacher – Dec. 2007 _________________3 yr 6 month and counting
SoCalGal – March 2007 ____________________4 yr 3 month and counting
MaryL – July 2004 ________________________ 6 yr 11 month and counting
PatE – Oct. 2007 __________________________3 yr 8 month and counting
KDR – June 2010 __________________________1 yr and counting
Flossie – July 2008 ________________________ 2 yr 11 month and counting
Marilyn – Jan. 2001 _______________________10 yr 5 month and counting
Kim in CA – Sept. 2001 ____________________ 9 yr 9 month and counting
Adriana Mangus – July 2003_________________7 yr 11 month and counting
Kim in DC – Feb. 2008 _____________________ 3 yr 4 month and counting
Fauxgypsy – Feb. 2007 _____________________4 yr 4 month and counting
DianaMK – June 2010 _____________________ 1 yr and counting
Tonya – Aug. 2006_________________________4 yr 10 month and counting
Asahizuru – 2002 _________________________ 9 yr and counting
Vivienne [Mom of] – March 2011____________ 3 month and counting
Radiant – 2010 ___________________________1 yr 6 month and counting
Ahoff – 2010 _____________________________1 yr 6 month and counting
Sherryg683 – Dec. 2005 ____________________5 yr 6 month and counting
Kavy – Nov. 2005 _________________________5 yr 7 month and counting
DQ1 – 2011 ______________________________ and counting
Unregistered – Jan. 2007___________________ 4 yr 5 month and counting
[DMWARN] [wife] – 2000 __________________ 11 yr and counting
Linda b – Jan. 2007 _______________________ 4 yr 5 month and counting
Angela R – (2009) April 2011________________2 month and counting
Hraby73 – April 2011______________________ 2 month and counting
Kmswilson – (Dec 2010) Jan 2011_____________5 month and counting
Mtngrl – (April 2011) May 2011______________1 month and counting
Vicky – March 2011________________________3 month and counting
tammymarie1971 – (Dec 2001) March 2004____7 yr 3 month and counting
StephN – (Sept 2000) Jan. 2002_______________8 yr 5 month and counting

Total: 53 members (who have posted on this thread) and 236 year 10 months as of June 18, 2011
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 06-18-2011 at 01:28 AM..
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Old 06-18-2011, 12:28 AM   #78
Trish
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Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
Re: Calling all stage iv sisters

Jackie, this calculation will keep you busy but your work is very much appreciated. I certainly hope to keep adding to the burden of calculation! Tammy's ups and downs are very familiar to me (except my tumour marker numbers tend to get into the 4 figures not the 3 figures!) I've enjoyed many family milestones in my Stage IV time and had lots of great experiences. My QOL is as good as, if not better than, many of my friends' and, like Tammy, I plan to continue as long as I can but I will take what comes with grace the help of medical science. Well that is the theory anyway. Newbies, you have a much better chance of being in Steph N's shoes than we did because more options are available sooner.But even if that level of stable disease eludes you, you can still look forward to lots of time as parents, friends, family members, workers -whatever your life offers. And do keep Jackie busy.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 06-18-2011, 03:22 AM   #79
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

[Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.

And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumphs with us. 6-15-2011]

Name________(Initial Dianosis) Stage IV Diagnosis_____Triumph years since Stage IV
__________________________________________________ _________________NED = No Evidence of Disease


Trish____________________(May 2004) Dec. 2006______4 yr 6 month and counting
Pam P______________(June 2001)Sept. 2002___________8 yr 9 month and counting
Colleen007_______________Oct. 2005________________5 yr 8 month and counting
Missyw_____________(Jan. 2001)Aug. 2006___________4 yr 10 month and counting
Joan M__________________(Sept.2003)Jan. 2007_______4 yr 5 month and counting
Kathy T__________________Jan. 2003________________8 yr 5 month and counting
Nancy L__________________Feb. 2009________________2 yr 4 month and counting
Chelee___________________(Dec. 2005) Sept2009______5 yr 6 month and counting
Lori R____________________Oct. 2007________________3 yr 6 month and counting
Deena H_________________(March 2010) Oct. 2010_____9 month and counting
Barbara H________________May 2004 ________________7 yr 1 month and counting
Chrisy______________(June2001)Sept. 2004 ____________6 yr 9 month and counting
Sheila___________________(Feb. 2002)Sept. 2003 ______7 yr 9 month and counting
Nsebesta_________________May 2004 ________________7 yr 1 month and counting
Mamacze ________________(2001)2004________________7 yr and counting
Ceesun___________________over 4 years______________4 yr and counting
Hutchibk_________________(Nov2003)Aug. 2005 _______5 yr 10 month and counting
Emilieb___________________Jan. 2010 ________________1 yr 5 month and counting (14m NED)
DEBBIE S__________________Oct. 2004 ________________6 yr 8 month and counting
Krisvell___________________(June 2009)Nov. 2010 ______8 month and counting
SuThorn__________________Sept. 2007 _______________3 yr 9 month and counting
CourtneyL ________________April 2008 _______________3 yr 2 month and counting
Hema____________________(2010)March 2011_________3 month and counting
Schoolteacher_____________Dec. 2007________________3 yr 6 month and counting
SoCalGal_______(1996; 2002) March 2007______________4 yr 3 month and counting
Mary L___________________(Oct 2003)July 2004________6 yr 11 month and counting
PatE_____________________Oct 2007_________________3 yr 8 month and counting (NED)
KDR______________________June 2010________________1 yr and counting (4 m NED)
Flossie____________________(Jan 2006)July 2008________2 yr 11 month and counting
Marilyn______________July 2001______________________9 yr 11 month and counting
Kim in CA____________(Feb 1997)Sept 2001_____________9 yr 9 month and counting (6 yr NED)
Adriana Mangus______(June 1994)July 2003_____________7 yr 11 month and counting
Kim in DC____________(Aug 1998)Feb. 2008 _____________3 yr 4 month and counting
Fauxgypsy_________________Feb 2007 _________________4 yr 4 month and counting
DianaMK _________________(Dec 2006) June 2010________1 yr and counting
Tonya____________________Aug 2006__________________4 yr 10 month and counting
Asahizuru_____________(1990, 1996)2002 _______________9 yr and counting
Vivienne [Mom of]__________March 2011_______________3 month and counting
Radiant __________________(2005)2010_________________1 yr 6 month and counting
Ahoff ____________________May 2010__________________1 yr 6 month and counting
Sherryg683________________Dec. 2005__________________5 yr 6 month and counting
Kavy_____________________(April 2005)Nov. 2005________5 yr 7 month and counting
DQ1______________________(May 2009)Feb 2011_________4 month and counting
Unregistered_______________Jan. 2007__________________4 yr 5 month and counting
[DMWARN] [wife]______(1999)2000 _____________________11 yr and counting
Linda b___________________Jan. 2007___________________4 yr 5 month and counting
Angela R__________________(2009)April 2011_____________2 month and counting
Hraby73 __________________April 2011__________________2 month and counting
Kmswilson ________________(Dec 2010) Jan 2011 __________5 month and counting
Mtngrl (Amy)______________(April 2011)May 2011 ________1 month and counting
Vicky_____________________March 2011_________________3 month and counting
tammymarie1971___________(Dec 2001) March 2004_______7 yr 3 month and counting
StephN_______________(Sept 2000) Jan 2002______________8 yr 5 month and counting

Total 53 members (who have posted on this thread) and 236 year 10 months as of June 18, 2011

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.
__________________
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; 02-20-2016 at 03:02 PM..
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Old 06-18-2011, 08:06 AM   #80
ahoff
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Join Date: Feb 2011
Posts: 3
Re: Calling all stage iv sisters

Diagnosed stage IV 5-2010 IBC, 5 rounds of chemo, surgery, 3 rounds of chemo, then 36 radiation treatments. Pet scan 3-2011 showed no signs of cancer, but a mamogram last week has sent me for a bioposy on Tuesday. I've been on herceptin since June 2010. Tumor markers have been 17. Any thoughts?
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