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03-19-2011, 09:09 AM
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#1
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Calling all stage iv sisters
Hi Jean,
I just saw the posting.
I guess so far am the oldest stage IV on the site.
July 2003. Only God know how long I had the tumor, just not dx'ed.
Stage I -- June 1994. Found a lump on my way to Hawaii--my honeymoon!
Waited until November to see a doc. Oficially dx in December 94.
Currently doing well on the TDM1 Trial.
Love,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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03-19-2011, 07:05 PM
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#2
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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Re: Calling all stage iv sisters
I was diagnosed stage IV in February of 2007. There is some doubt as to whether I was stage IV or not but so far I'm still here!
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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03-23-2011, 12:56 PM
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#3
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Senior Member
Join Date: Mar 2011
Posts: 70
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Re: Calling all stage iv sisters
I have been stage 4 since June 2010 and am currently NED. I was looking for information on staying on herceptin forever. I see many of you have been on it for a long time and are NED. I'm so encouraged. Its been a scary year.
-------------------------------------------------------
Diagnosed 12/06 - Stage 1 - IDC - Her 2 +++
Lumpectomy; A/C; Rads; Herceptin for 1 year
6/10 - Stage 4 - skin and lung mets
7/10 - lung wedge resection
6 - TCH cycles continuing on 3 week herceptin
12/10 Mastectomy
3/17/11 - NED
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03-23-2011, 04:43 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Calling all stage iv sisters
DianaMK,
For us that are stage IV the standard of care is to stay on Herceptin for the rest of our life. And yes...you should be encouraged by that as we have so many ladies on this board that have done their chemo and maintained and stayed NED on Herceptin alone. 
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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03-23-2011, 05:13 PM
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#5
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Calling all stage iv sisters
I'm not great at math, but it seems that (33) of us have lived over 145 years with stage 4.
Just sayin'...
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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03-23-2011, 05:55 PM
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#6
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Member
Join Date: Feb 2007
Location: n.c.
Posts: 9
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Re: Calling all stage iv sisters
Stage 4 Since Aug 2006. Mets to the liver. I have been on four different combinations with herceptin and tykerb. Started Halaven Dec 2010, and now adding tykerb back in to the routine. Still working and making the most of life. God is faithful.
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03-24-2011, 04:26 PM
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#7
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Member
Join Date: Jul 2007
Location: Surrey (UK)
Posts: 9
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Re: Calling all stage iv sisters
I haven't got round to setting out my journey - it seems to have been so much part of my life. It all started out in 1990 with first recurrence in 1996 and from then on seemed every couple of years till I moved to stage IV in 2002 with extensive spread to my bones. Have been through so many chemos and by 2002 I was on xeloda and had to come off that after 2 cycles because of too many se's. Went on to Navelbine which seemed to work (this could be seen by the reduction of the lymph node swellings all around my neck. But at end of chemo they were back  . It was then that they checked out my her2 status and found it to be her2+++ and I went on herceptin. The effect was instant - those lymph nodes all went down - even to the point that I got full movement in my neck back again - I had probs turning side to side. Since 2004 I have been on just herceptin & pamidronate and latterly zometa every 3 weeks. Generally keeping ok but last 3 years problems with a tumour next to my lumbar spine causing nerve pain problems. But given I have clocked up 21 years with bc I am not doing too badly living with it.
asahizuru
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03-28-2011, 10:24 PM
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#8
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Junior Member
Join Date: Mar 2011
Posts: 1
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Re: Calling all stage iv sisters
Dear all ladies,
I am here for my mom , she is 63 years old and newly diagnosed as BC , stage4 and liver mets ( multiple), the biggist one is 7cm .
But she is also a Hepatitis B Virus(HBV) carrier , she is asian .
My question is : the diagnosed date is on March 17 and hosipital will start the chemo therapy on April 16 , will this time too late ?due to we want to join a clinical trail.
I feel much better when i know there are so many stage 4 women hanging over there , because my mom gets so upset and depressed once the dr. said she only got 2-3 months to live.
Thank you all .
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03-29-2011, 07:52 AM
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#9
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Calling all stage iv sisters
Hi, Vivienne,
I'm so sorry to hear about your mother's diagnosis. But tell her to hang in there! Through you, she can get a lot of inspiration from our stories and successes. It's such a blow to get a diagnosis such as this. Where are you located? I think treatment is starting within a reasonable amount of time, that's about how long it took me to get started. Is mom HER2+? I'd be depressed if my doctor put a timeline on me, too...I'd tell your mom to tell the doctor, "Watch me!"
Hugs and welcome,
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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04-02-2011, 08:49 PM
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#10
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Senior Member
Join Date: Oct 2008
Posts: 88
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Re: Calling all stage iv sisters
Hi Ladies:
I was dx Stage 3C in beginning, 2005. I'm triple +. Surgeon said my bc was missed for 4-6 years on mammo's due to dense tissue. Devastating for sure. I went to mets (liver and soft tissue) in 2010.
End of 2010, major progression in liver and onc wanted ALOT of tx to stop it. Per signature below, I did and it's working. I was in a tight, tight spot last Christmas, but now feel there's hope - especially w/all the new her2+ drugs coming out.
Onc wants me to stay on this tx for 4 more rounds - as it's going well. Ixempra/Avastin first tx to touch my medistanil mets (by the heart) in 2 years - reduced it 40% in 4 rounds, and reduced liver mets by 50% as well.
It's not easy, but there's hope.
- Kim
__________________
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Dx Stage 3C 2005, triple +, tons of lymph nodes as well. FEC, surgery, TCH, rads, herceptin 1 year. And, Aromasin.
2007 - recurrence to medistinal lymph node, Abraxene and Herceptin - took it down 50%
2008 - on Arimidex/Herceptin - stable lymph node.
2009 - stable on Arimidex/Herceptin
2010 - lymph node progression and liver mets.
2010 - went on Gemzar, Navelbine, Herceptin - Navelbine and Herceptin took liver mets down. lymph node slightly progressed.
2010 - did Xeloda & Tykerb - MAJOR progression in liver in only 6 weeks.
Dec 2010 - present - Ixempra/Avastin/Herceptin/Fasoldex - regressing
June 2012 - chemo break
Sept 19, 2012 - start t-dm1. Chose this over going back on Ixempra.
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04-03-2011, 02:08 PM
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#11
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Junior Member
Join Date: Feb 2011
Posts: 3
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Re: Calling all stage iv sisters
Diagnosed stage 4 IBC 5-28-10. Received 5 chemos treatments, mastcetomy, then three more chemo treatments. Went for radiation after and will be on Herceptin the rest of my life and zometa for 2 years. Recent pet scan 4-01-11 shows no sign of cancer at this time. I missed one day of work. Enjoy life.
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04-03-2011, 03:12 PM
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#12
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Calling all stage iv sisters
Vivienne
I was diagnosed with multiple liver mets (largest 9cm) in 2006. I'm still enjoying life but have had lots of treatment since then. There is plenty of reason to hope. All the best,
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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04-03-2011, 06:40 PM
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#13
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Senior Member
Join Date: Oct 2008
Posts: 88
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Re: Calling all stage iv sisters
Wow Trish - thanks for posting your update. Congrats!
__________________
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Dx Stage 3C 2005, triple +, tons of lymph nodes as well. FEC, surgery, TCH, rads, herceptin 1 year. And, Aromasin.
2007 - recurrence to medistinal lymph node, Abraxene and Herceptin - took it down 50%
2008 - on Arimidex/Herceptin - stable lymph node.
2009 - stable on Arimidex/Herceptin
2010 - lymph node progression and liver mets.
2010 - went on Gemzar, Navelbine, Herceptin - Navelbine and Herceptin took liver mets down. lymph node slightly progressed.
2010 - did Xeloda & Tykerb - MAJOR progression in liver in only 6 weeks.
Dec 2010 - present - Ixempra/Avastin/Herceptin/Fasoldex - regressing
June 2012 - chemo break
Sept 19, 2012 - start t-dm1. Chose this over going back on Ixempra.
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04-04-2011, 08:41 PM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Re: Calling all stage iv sisters
I was diagnosed stage IV in December 05. I have been NED now for 5 years and continue on with Herceptin indefinately. My oncologist doesn't do tumor markers, I have PET scans every 6 months. Glad to see all the stage IV survivors coming out. ..sherryg
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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04-20-2011, 01:16 AM
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#15
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Senior Member
Join Date: May 2006
Posts: 157
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Re: Calling all stage iv sisters
Diagnosed in April 2005 with stage 3C, then stage IV in November 2005, with mets to lung and liver. Have been on different treatments all these years. Liver mets are gone, but lung mets are still here. Now on Halaven and Herceptin.
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05-08-2011, 01:37 PM
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#16
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Guest
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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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05-08-2011, 07:28 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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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
__________________
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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05-09-2011, 10:25 PM
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#18
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Junior Member
Join Date: May 2011
Location: Melbourne, Australia
Posts: 2
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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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06-15-2011, 04:54 PM
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#19
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
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.]
__________________
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; 06-17-2011 at 10:18 PM..
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06-16-2011, 09:28 AM
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#20
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Junior Member
Join Date: Jun 2011
Posts: 4
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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!
__________________
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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