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Old 06-18-2011, 11:07 AM   #81
yankeebikachic
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Location: Durham NC
Posts: 73
Re: Calling all stage iv sisters

Gosh, I haven't been on the forum in a while, I have been very busy with work as usual! I quit my job and opened my own business last fall after a nasty incident involving my past employer and my health privacy rights.
Still here, working about 65 hours a week and going strong!!
I take Tykerb every day (sometimes give myself a day or two off) and no tumor markers. Just scans every 9 months or so.
What a wonderful bunch of ladies we have here!
__________________
4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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Old 06-18-2011, 01:14 PM   #82
KDR
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Re: Calling all stage iv sisters

Hi, Yankeebikachic,
Did you doctors consider you Stage IV when supr. clav. nodes became involved?
I'm on the same regimen as you (with Herceptin) and noticed that you now take Tykerb only...and Ceesun is also less her chemo. Thanks for sharing?
Congratulations on your good decisions and great health outcome!
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-18-2011, 01:42 PM   #83
CoolBreeze
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Re: Calling all stage iv sisters

Well, I belong in this thread now. I got mets to the liver only five months post herceptin. I had a clean scan the week I finished herceptin and five months later, two lesions.

Neither my doctor nor I know if that means herceptin worked for me or not.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 06-19-2011, 07:52 AM   #84
yankeebikachic
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Re: Calling all stage iv sisters

Yes Karen, I am Stage 4 with that involvement--anything outside of that immediate area they consider a 4. Plus, I did the H for a year after all the chemo, rads, etc and I lit up on my PET very shortly after I finished H whereas before I was clean. Did the X and Ty. and started getting great results immediately but stayed on that combo for a long while after I even was scanning clean. Been on Ty ever since and doc does not want me off of it, period, even though I would sure like too, lol! But so very thankful for great results so far and glad I found my inner you-know-what to get to where I am today. You should have great results with that combo, I'm glad you are on it!
__________________
4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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Old 06-22-2011, 12:26 PM   #85
TriciaK
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Re: Calling all stage iv sisters

What a wonderful thread! I hope my post will be helpful also. Most of you probably know my history since I think I may well be the oldest survivor on this site, being age 81 and now fighting my 4th round of BC in 26 years. I was diagnosed in 1985 with in situ stage 1 BC in my right breast. The only treatment was a bilateral mastectomy. The cancer returned in my spine (2 vertebras) in 1990. I assume it should have been considered stage 4 then because it had travelled, but don't know for sure. Again no chemo, just tamoxifen and alternate treatment, including self hypnosis and vegetarian diet. Went for 15 years NED. I stopped seeing an oncologist because I moved away. My last MRI report had read "healed metastatic breast cancer", so I just more or less forget about the cancer! Then I had a heart attack in 2004 and in the testing process a CT scan showed that BC was back, in my right lung, and now her2. I have to be thankful for that heart attack! Six months of Navelbine and Herceptin, then herceptin alone for 11 more months stopped the BC. My ejection fraction dropped to 30 so I had to stop the herceptin. I had a triple bypass in 2006. A year ago the BC showed up again in the right lung, and we have tried 5 kinds of chemo since then. I had some bad side effects to the first 4, and am now on halavan alone. I have become weaker with each chemo but am hoping the halavan will do the trick. I am uneasy about not having herceptin too and am considering seeing another oncologist.
I hope my story will be encouraging, even though I am fighting the Beast for the 4th time. I am thankful for the 26 years I have been fighting and all the blessings received. This last month has been the Month of the Babies: 5 new great-grandchildren born in the last 30 days, 3 boys and 2 girls! I have lived long enough to see my children become grandparents! The total now for my husband and me is 9 children, 32 grandchildren and now 48 great-grands! My prayer is that each one of you may continue to win the fight for as many years as I have! This website has been a blessing I am so grateful for and I am thankful for all I have learned and shared here. My advice to you is to keep being a part of this wonderful caring and informative group, and remember faith and fear cannot coexist. There has never been as much hope as there is now for new treatments, even a cure! Hugs, TriciaK
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Old 06-22-2011, 01:26 PM   #86
CoolBreeze
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Posts: 562
Re: Calling all stage iv sisters

Tricia, I had no idea of your story. I've seen you on the various cancer website but didn't know your age or how long you've been dealing with all of this. You are truly an inspiration - and I sure hope I get to be 81! Only 28 years to go...
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 06-22-2011, 04:19 PM   #87
KDR
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Location: New York, New York
Posts: 1,580
Re: Calling all stage iv sisters

Tricia,
Blue ribbon! You should submit this personal interest story to Reader's Digest!
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-22-2011, 05:08 PM   #88
Mtngrl
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Re: Calling all stage iv sisters

Thank you, Tricia K! What an inspiration.

If I get 26 more years I'll be in my 80's too. I'll take it.
__________________
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 06-25-2011, 12:48 AM   #89
harrie
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Re: Calling all stage iv sisters

Tricia....I truely love your story.....
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 06-25-2011, 07:17 PM   #90
Jean
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Posts: 3,154
Re: Calling all stage iv sisters

Tricia,
Thank you - for deomonstrating great courage and faith. My son will be getting married next year and
I think about the future, how my family will grow etc.
When reading about your great grandchildren and great grands it filled me with such joy.

You are so beautiful Tricia....
hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 06-25-2011, 08:28 PM   #91
Jeana
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Re: Calling all stage iv sisters

Hi ladie's, my name is Jeana, I have been on this site many times but i have never replied. I was diagnosed in June 2010 stage 3a and was doing well until April 2011 and was diagnosed with 4
brain mets. I had surgery to remove the 2 that were in the back and then underwent 4 weeks of wbr. Had scans repeated about 4 weeks ago and were all clean. Ihave been really scared about all this but then i get on here and i feel like i have hope. Thank you all so very much.
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Old 06-26-2011, 12:20 AM   #92
Trish
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Re: Calling all stage iv sisters

Jeana, lots of people on this site are dealing with (or have dealt with) brain mets. Some have already been around a very long time. I'm sure you will be one of those. Good luck with dealing with the treatment,
Trish
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Old 06-26-2011, 01:32 AM   #93
Jackie07
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Re: Calling all stage iv sisters

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for 33 members) back in March. Thought I'd double check and add the ones after 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 (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I 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: 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 oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also 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. 6-15-2011]

Name___________(Initial Dianosis) Stage IV Diagnosis_______________Triumph years since Stage IV NED = No Evidence of Disease

Trish________________(May 2004) Dec. 2006 Liver__________________4 yr 6 month and counting
Pam P___________(IBC June 2001) Sept. 2002 Bone__________________8 yr 9 month and counting
Colleen007____________________Oct. 2005 Liver, spine, femur _______5 yr 8 month and counting
Missyw_____________(Jan. 2001) Aug. 2006 Liver___________________4 yr 10 month and counting
Joan M_____________(Sept.2003) Jan. 2007 Lung____________________4 yr 5 month and counting
Kathy T_________________(1985) Jan. 2003 Bone____________________8 yr 5 month and counting
Nancy L_________________(2004) Feb. 2009_______________________2 yr 4 month and counting NED
Chelee__________ (Dec. 2005 IIIA) Sept2009 Bone___________________5 yr 6 month and counting
Lori R________________________Oct. 2007 Liver___________________3 yr 6 month and counting
Deena H__________(March 2010) Oct. 2010 Lung____________________9 month and counting
Barbara H_______________(1998)May 2004 Brain___________________7 yr 1 month and counting NED
Chrisy______________(June2001)Sept. 2004 Liver____________________6 yr 9 month and counting
Sheila______________(Feb. 2002)Sept. 2003 Neck nodes______________7 yr 9 month and counting
Nsebesta_____________________May 2004 Liver____________________7 yr 1 month and counting NED since 2005
Mamacze ________________(2001)2004 Liver and lungs_______________7 yr and counting NED
Ceesun___________________over 4 years__________________________4 yr and counting
Hutchibk____________(Nov. 2003)Aug. 2005 Chest nodes Bone Brain___5 yr 10 month and counting
Emelie B______________(Nov. 2006)Jan. 2010 Sternum lung liver bone__1 yr 5 month and counting (14m NED)
DEBBIE S______________________Oct. 2004 Liver ____________________6 yr 8 month and counting
Krisvell_____________(June 2009) Jan. 2011 Brain ____________________5 month and counting
SuThorn______________________Sept. 2007 Liver____________________3 yr 9 month and counting NED since 1-2008
CourtneyL ____________________April 2008 Liver Lung (NED) Bone Brain_3 yr 2 month and counting
Hema__________________(2010)March 2011Vert. Liver________________3 month and counting
Schoolteacher_________________Dec. 2007__________________________3 yr 6 month and counting
SoCalGal___________(1996; 2002) March 2007 Lung Sternum 2008 NED in Brain_____4 yr 3 month and counting
Mary L_______________(Oct 2003) July 2004 Skin_____________________6 yr 11 month and counting (NED 3yr 8 m)
PatE__________________________Oct 2007 Liver spine________________3 yr 8 month and counting (NED)
KDR___________________________June 2010 Liver____________________1 yr and counting (4 m NED)
Flossie_________________(Jan 2006) July 2008 Brain Rib neck___________2 yr 11 month and counting
Marilyn___________________(2000) July 2001 Bones__________________9 yr 11 month and counting
Kim in CA______________(Feb 1997)Sept 2001 Liver___________________9 yr 9 month and counting (6 yr NED)
Adriana Mangus________(June 1994)July 2003 Lung___________________7 yr 11 month and counting
Kim in DC______(Aug 1998) 2004IBC Feb. 2008 Skin Sternum____________3 yr 4 month and counting
Fauxgypsy_______________________Feb 2007 Liver___________________4 yr 4 month and counting
DianaMK _____________(Dec 2006) June 2010 Skin Lung_______________1 yr and counting NED
Tonya_________________________Aug 2006 Liver____________________4 yr 10 month and counting
Asahizuru____________(1990, 1996) 2002 Bones______________________9 yr and counting
Vivienne [Mom of]_______________March 2011 Liver_________________3 month and counting
Radiant __________________(2005) 2010 Liver & Soft Tissue Mediastinal nodes____1 yr 6 month and counting
Ahoff __________________IBC May 2010___________________________1 yr 6 month and counting
Sherryg683__________________Dec. 2005 Lungs_____________________5 yr 6 month and counting
Kavy_____________(April 2005)Nov. 2005 Lung Liver__________________5 yr 7 month and counting
DQ1______________(May 2009)Feb 2011 Mediastinal nodes Lung_______4 month and counting
Unregistered________________Jan. 2007____________________________4 yr 5 month and counting
[DMWARN] [wife]______(1999)2000 Spine Lung______________________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 Liver Lungs_________________2 month and counting
Kmswilson _________(Dec 2010) Jan 2011 Liver Bones_________________5 month and counting
Mtngrl (Amy)______(April 2011)May 2011 Liver______________________1 month and counting
Vicky_______________________March 2011 Liver Spine_______________3 month and counting
tammymarie1971___(Dec 2001) 2004 liver 2005 Spine/Hip_____________7 yr 3 month and counting
StephN___________(Sept 2000) Jan 2002 Liver_______________________8 yr 5 month and counting
Yankeebikachic_____(April 2006) July 2008 Nodes_____________________2 yr 11 month and counting (NED)
CoolBreeze_________(Aug 2009) May 2011 Liver______________________1 month and counting
TriciaK_____________(1985) 1990 spine, 2004, 2010 lung_______________21 years and counting
Jenan______________(June 2010) April 2011 Brain____________________2 month and counting


Total: 57 members (in the order of their postings on this thread) and 261 years as of June 26, 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; 06-26-2011 at 05:48 AM..
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Old 06-26-2011, 04:50 AM   #94
Lauriesh
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Posts: 199
Re: Calling all stage iv sisters

This post gives me so much hope. I was diagnosed almost a year ago (July 19) I have been NED for 4 months, after doing chemo and RFA for two liver mets.

Hoping for many more years- My husband said he had a dream that we were dancing at our daughter's wedding (she is 9), so that is my goal.

Laurie
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Old 06-26-2011, 06:21 AM   #95
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
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Re: Calling all stage iv sisters - in Alpha order

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after 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 (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I 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 oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also 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. 6-15-2011]

Name_________(Initial Dianosis) Stage IV Diagnosis_________Triumph years since Stage IV ___
NED = No Evidence of Disease

Adriana Mangus_____________(June 1994) July 2003 Lung_________________7 year 11 months and counting
Ahoff ________________________________May 2010 IBC___________________1 year 6 months and counting
Angela R_______________(2009)April 2011________________3 months and counting
Asahizuru________(1990, 1996) 2002 Bones_______________9 years and counting
Barbara H______________(1998)May 2004 Brain___________ 7 yrs 2 months and counting NED
Ceesun (Cathy)______________ 5 years__________________5 yrs and counting (as of 6-27-2011)
Chelee_________(Dec. 2005 IIIA) Sept2009 Bone___________5 yrs 7 months and counting
Chrisy______________(June2001)Sept. 2004 Liver__________6 yrs 10 months and counting
Colleen007_____________________________Oct. 2005 Liver, spine, femur ____5 yrs 9 months and
counting
CoolBreeze_________(Aug 2009) May 2011 Liver____________2 months and counting
CourtneyL ___________________April 2008 Liver Lung (NED) Bone Brain____3 yrs 3 months and counting
DEBBIE S____________________Oct. 2004 Liver ___________6 yrs 9 months and counting
Deena H_________(March 2010) Oct. 2010 Lung____________9 months and counting
DMWARN] [wife of]________________(1999)2000 Spine Lung________________11 yrs and counting
DianaMK ___________(Dec 2006) June 2010 Skin Lung________1 yr 1 month and counting NED
DQ1_______________(May 2009)Feb 2011 Mediastinal nodes Lung___5 months and counting
Emelie B_____________________(Nov. 2006)Jan. 2010 Sternum lung liver bone______1 yr 6 months and counting (14m NED)
Fauxgypsy___________________Feb 2007 Liver______________4 yrs 5 months and counting
Flossie_____________(Jan 2006) July 2008 Brain Rib neck______3 yrs and counting
pibikay (Hema) _________(2010)March 2011Vert. Liver_______4 months and counting
Hraby73 ____________________April 2011 Liver Lungs________3 months and counting
Hutchibk____________________(Nov. 2003)Aug. 2005 Chest nodes Bone Brain_______5 yrs 11 months and counting
Jenan_____________(June 2010 IIIA) April 2011 Brain________3 months and counting
Joan M_______________________(Sept.2003) Jan. 2007 Lung_____________________4 yrs 6 months and counting
Kathy T________________(1985) Jan. 2003 Bone_____________8 yrs 6 months and counting
Kavy_______________(April 2005)Nov. 2005 Lung Liver________5 yrs 8 months and counting
KDR_________________________June 2010 Liver____________1 yr 1 month and counting (4 m NED)
Kim in CA____________(Feb 1997)Sept 2001 Liver_____________9 yrs 10 months and counting (6 yr NED)
Kim in DC____(Aug 1998) 2004IBC Feb. 2008 Skin Sternum______3 yrs 5 months and counting
Kmswilson __________(Dec 2010) Jan 2011 Liver Bones________6 months and counting
Krisvell________________________(June 2009) Jan. 2011 Brain _________________6 months and counting
Lauriesh (Laurie)________________(July 2010) 2 Liver mets(RFA)________________1 year and counting (4 months NED)
Linda b_______________________Jan. 2007_________________4 yrs 6 months and counting
Lori R________________________Oct. 2007 Liver_____________3 yrs 7 months and counting
Mamacze _________________(2001)2004 Liver and lungs_______7 yrs and counting NED
Marilyn___________________(2000) July 2001 Bones__________10 yrs and counting
Mary L________________(Oct 2003) July 2004 Skin____________7 yrs and counting (NED 3yr 9 m)
Missyw________________(Jan. 2001) Aug. 2006 Liver__________4 yrs 11 months and counting
Mtngrl (Amy)___________(April 2011)May 2011 Liver___________2 months and counting
Nancy L___________________(2004) Feb. 2009_______________2 yrs 5 months and counting NED
Nsebesta_______________________May 2004 Liver____________7 yrs 2 months and counting NED since 2005
Pam P________________________(IBC June 2001) Sept. 2002 Bone___________________8 yrs 10 months and counting
PatE___________________________Oct 2007 Liver spine________3 yrs 9 months and counting (NED)
Radiant __________________(2005) 2010 Liver & Soft Tissue Mediastinal nodes___1 yr 7 months and counting
Schoolteacher (Amelia)____________Nov 28. 2007_____________3 yrs 7 months and counting (NED since 4-16-2008)
Sheila______________(Feb. 2002)Sept. 2003 Neck nodes___________________________7 yrs 10 months and counting
Sherryg683__________________Dec. 2005 Lungs______________5 yrs 7 months and counting
SoCalGal___________(1996; 2002) March 2007 Lung Sternum 2008 NED in Brain_____4 yrs 4 months and counting
StephN___________(Sept 2000) Jan 2002 Liver________________8 yrs 6 months and counting
SuThorn______________________Sept. 2007 Liver_____________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971___(Dec 2001) 2004 liver 2005 Spine/Hip_______7 yrs 4 months and counting
Tonya__________________________________Aug 2006 Liver_______________________4 yrs 11 months and counting
TriciaK_____________(1985) 1990 spine, 2004, 2010 lung_______21 years and counting
Trish__________________________(May 2004) Dec. 2006 Liver______________________4 yrs 7 months and counting
Unregistered_________________Jan. 2007___________________4 yrs 6 months and counting
Vicky_______________________March 2011 Liver Spine_________4 months and counting
Vivienne [Mom of]____________March 2011 Liver______________4 months and counting
Yankeebikachic_____(April 2006) July 2008 Nodes______________3 yrs and counting (NED)

Total 60 members* and 284* years as of July 9, 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."

*Including Christine and AndiBB and those who have posted 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

Last edited by Jackie07; 07-26-2011 at 12:54 AM..
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Old 06-27-2011, 03:10 AM   #96
pibikay
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Join Date: May 2010
Posts: 432
Re: Calling all stage iv sisters

wow it is heartening
__________________
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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Old 06-27-2011, 08:49 AM   #97
Ceesun
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Posts: 869
Re: Calling all stage iv sisters

Jackie you are amazing with your tally just checkin in with Ceesun now at a full five years! Cathy
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Old 07-10-2011, 12:01 AM   #98
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. [60 members* and 284* years as of July 9, 2011.]

I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I 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 - 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 oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also 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. 6-15-2011]

Name (Age at I.D.) ____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) July 2003 Lung _____________________________ 7 year 11 months and counting
Ahoff (Ann) _____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R __________________________ (2009) April 2011 _________________________________3 months and counting
Asahizuru _____________________ (1990, 1996) ....... 2002 Bones Spine ________________________ 9 years and counting
Barbara H _____________________ (May 1998) May 2004 Brain _____________________________ 7 yrs 2 months and counting (NED)
Ceesun (Cathy) __________________________ June 2006 Lung _____________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _____________________________ 5 yrs 7 months and counting
Chrisy______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1_______________ 6 yrs 10 months and counting
Colleen007____________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ___________________ 5 yrs 9 months and counting
CoolBreeze_____________________ (Aug 2009) May 2011 Liver _____________________________ 2 months and counting
CourtneyL ___________________ Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ___________ 3 yrs 3 months and counting
DEBBIE S_____________________ Er- Pr- Her2+ Oct. 2004 Liver _____________________________ 6 yrs 9 months and counting
Deena H___________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ______________________________ 9 months and counting
DMWARN [wife of]_________________ (1999) ......... 2000 Spine Lung _________________________11 1/2 yrs and counting
DianaMK _____________________ (Dec 2006) June 2010 Skin Lung ___________________________1 yr 1 month and counting (NED March 2011)
DQ1__________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung _______________ 5 months and counting
Emelie B__________________ Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _______________ 1 yr 6 months and counting (NED)
Fauxgypsy __________________ Er+ Pr+ Her2+ Feb 2007 Liver______________________________ 4 yrs 5 months and counting
Flossie ________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______________________ 3 yrs and counting
Hraby73 (Holly) _____________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________________________ 3 months and counting
Hutchibk (Brenda) ___ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1 ______ 5 yrs 11 months and counting
Jenan ____________________ (June 2010 IIIA) April 2011 Brain (WBR) ________________________ 3 months and counting (all clean)
Joan M ____________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain__________________________ 4 yrs 6 months and counting
Kathy T__________________ Er+ Her2+ (1984) Jan. 2003 Bone _________T-DM1 (2 yrs) _________ 8 yrs 6 months and counting
Kavy _______________________ (April 2005) Nov. 2005 Lung Liver _________________________ 5 yrs 8 months and counting
KDR (Karen) _______________ Er- Pr+ Her2 + June 2010 Liver_______________________________ 1 yr 1 month and counting
Kim in CA ____________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ________ UW [Seattle]vaccine ______ 9 yrs 10 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 5 months and counting
Kmswilson __________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
Krisvell ___________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA)_________________1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine ________7 yrs and counting (NED)
Marilyn_______________________________(2000) July 2001 Bones____________________________10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin______________________________7 yrs and counting (NED since Oct 2007)
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver ______________________________4 yrs 11 months and counting
Mtngrl (Amy) (56) _____________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)______________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ________________________3 yrs 9 months and counting (NED)
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver _________________ 4 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 7 months and counting (NED since 4-16-2008)
Sheila (49.99) ___________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes_______T-DM1(3)________7 yrs 10 months and counting
Sherryg683__________________________________Dec 2005 Lungs ____________________________ 5 yrs 7 months and counting
SoCalGal_____________(1996; 2002) March 2007 Lung Sternum 2008 NED in Brain_______________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver (NED) 2005 Brain (NED)_______8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver__________________________ __________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ____________________________7 yrs 4 months and counting
Tonya ___________________________ Aug 2006 Liver_______________________________________ 4 yrs 11 months 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 7 months and counting
Unregistered _____________________ Jan. 2007 ____________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine________________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver______________________________________ 4 months and counting
Yankeebikachic (34)________(April 2006 IIIC) July 2008 Nodes in sup. clav.______________________ 3 yrs and counting (NED)

Total 60 members* and 284* years as of July 14, 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."

*Including Christine and AndiBB and those who have posted 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

Last edited by Jackie07; 07-31-2011 at 04:52 PM..
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Old 07-10-2011, 08:28 AM   #99
Jean
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Location: New Jersey
Posts: 3,154
Re: Calling all stage iv sisters

Jackie you are amazing!!!!!! Just amazing...220
Very impressive.
It is extremely moving to read all the different stories from our sisters. The strength, courage and fighting spirit and beating the odds. God Bless Each One each day.

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-10-2011, 07:18 PM   #100
Catherine
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Posts: 715
Re: Calling all stage iv sisters

Great thread...great positive ladies! And it seems there are a lot of very good doctors and nurses out there helping everyone. Congratulations! I feel so lucky to be part of this site.
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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