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Old 05-26-2014, 07:21 PM   #1
mamacze
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Talking Ten Years Stage 4 … and still A-OK

It is the end of the day - and after celebrating my 58th birthday (gasp!!) my mind is on all of you.
Ten years ago I was diagnosed with Stage 4 breast cancer and mets to all four lobes of my lungs. I felt pretty lousy. I was horrified at the thought of breaking this news and all the awfulness that comes with it - to my 4 children (ages 8 - 18). Many of you too have walked in these stinking shoes.
Well today, 10 years later, my scans last week came back with a “no changes” report - I am stable on Herceptin … and A-OK. (ALMOST NED except for one stinking tiny spot on my lungs that hasn’t changed for many years)
Today, it is my fervent wish and prayer that all of you with mets are given the same chance. NED. A moment when cancer is not on your mind. A few days of feeling pretty darn good. The chance to look to your future with joyful anticipation.
At the very least, I wish for my experience to give you all a small bucket full of hope.
I am not logged in as much as I was in the early years; but I will not let another birthday pass without an update.
Love and Hugs to all of my her2 sisters!
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


2020 On Herceptin and NED continues - WOOT WOOT!

Last edited by mamacze; 06-03-2014 at 07:32 PM..
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Old 05-26-2014, 07:39 PM   #2
suzan w
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Re: Ten Years Stage 4 … and still A-OK

Dear Kim, what a fantastic milestone...10 years! A decade of navigating the unsteady cancer landscape, with all its ups and downs. Thank you for posting your wonderful news!!! Congratulations and hugs!!!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 05-26-2014, 07:54 PM   #3
KaiM
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Re: Ten Years Stage 4 … and still A-OK

Yay Kim! Your story gives me a bucket of hope, thank you! And Happiest of Birthdays!
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)

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Old 05-26-2014, 09:28 PM   #4
crb
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Re: Ten Years Stage 4 … and still A-OK

Happy Birthday and such inspiring news! I have my last chemo tomorrow and bmx scheduled for June 20...looking ahead to 10 years down the road as well
__________________
1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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Old 05-26-2014, 09:46 PM   #5
Bunty
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Re: Ten Years Stage 4 … and still A-OK

Kim, you have made my day with your wonderful post. Such great news, and I love your wishes for us all here - thank you! I feel very happy for you, and wish you many, many years ahead stable and NED.
Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 05-27-2014, 12:19 AM   #6
Pamelamary
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Re: Ten Years Stage 4 … and still A-OK

Great news Kim, giving hope to many of us! Hope you had a wonderful birthday.
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 05-27-2014, 05:18 AM   #7
4angel
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Re: Ten Years Stage 4 … and still A-OK

Happy Birthday and scan results! thank you for sharing. I am approaching year 2 and it is so good to hear of the possibility of many more!
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Old 05-27-2014, 05:44 AM   #8
Becky
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Re: Ten Years Stage 4 … and still A-OK

I am so happy for you. Congratulations and Happy Birthday.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-27-2014, 11:11 AM   #9
annettchen
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Re: Ten Years Stage 4 … and still A-OK

Thank you! Thank you! Thank you!

Kim, this is simply wonderful! I wish you many, many more birthdays to enjoy. And I wish for myself I may be as lucky as you are - I was recently diagnosed with HER2+++ ER/PR- and mets to the bones off the get go.
My daughter is 5, so 10 years sounds just great to me - 15 or 20 would be even better (shooting for the moon, here)!

Thanks again for posting this - it gives me hope!

Annette
----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets)
04/2014: Started 6 cycles of "PHD" (Pertuzumab, Herceptin, Docetaxel)
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Old 05-27-2014, 11:15 AM   #10
'lizbeth
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Re: Ten Years Stage 4 … and still A-OK

Happy Birthday! Congratulations on reaching a major milestone both physical and emotionally.

Wishing you many more joy filled decades!
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Old 05-27-2014, 11:33 AM   #11
DianaMK
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Re: Ten Years Stage 4 … and still A-OK

Happy Birthday! and thanks for sharing your good news. You've give us stage 4 sisters much hope. Coming up on 4 years stage 4 myself. God is good.
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 05-27-2014, 01:33 PM   #12
sarah
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Re: Ten Years Stage 4 … and still A-OK

Yeah Kim, way to go!!! A very happy birthday
health and happiness always
love sarah
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Old 05-27-2014, 01:44 PM   #13
KDR
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Re: Ten Years Stage 4 … and still A-OK

HAPPY BIRTHDAY, Angel! (I love it when you call me "Angel")!! Oh, how I love to see your face and hear your news!
I was thinking about you just yesterday, that I had to call and give you all my news! And I will!
Please come around more often, you are soooo loved!
Enjoy your day, beauty,
Hugs & Kisses
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 05-27-2014, 03:26 PM   #14
Mtngrl
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Re: Ten Years Stage 4 … and still A-OK

Dear Kim,

It's so great to hear from you and to learn that you're still stable on just Herceptin. Hallelujah!

I'm happy for you, of course, but I'm also happy that people just starting down this road can see stories like this. It's good to have reason to hope.

Thank you.
__________________
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 05-28-2014, 12:51 AM   #15
Pray
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Re: Ten Years Stage 4 … and still A-OK

Gods blessings to you and your family�� I'm sure every birthday is filled with sheer joy��
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-28-2014, 08:26 AM   #16
Ceesun
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Re: Ten Years Stage 4 … and still A-OK

Kim, Happy Healthy Birthday....BRAVO! Cathy
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Old 05-28-2014, 01:32 PM   #17
Ellie F
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Re: Ten Years Stage 4 … and still A-OK

Happy birthday, sorry a little late but so pleased to hear your news! May it continue forever!

Love from England

Ellie
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Old 05-29-2014, 02:29 AM   #18
michka
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Re: Ten Years Stage 4 … and still A-OK

Congrats Kim! this is good news. We love good news! Thank you for posting.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 05-29-2014, 12:11 PM   #19
DizzyDo
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Re: Ten Years Stage 4 … and still A-OK

Wow that is great, you give me so much hope! Thanks for posting!
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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Old 05-29-2014, 12:21 PM   #20
FLfrost
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Join Date: Apr 2014
Posts: 47
Re: Ten Years Stage 4 … and still A-OK

I celebrate your fantastic news and thank you for sharing it is such an encouragement. Also a slightly belated Happy Birthday, I look forward to wishing you an on time birthday in 2015, hopefully by then I'll be finished primary treatment with my year of Herceptin maitenance. I am just in the middle of neoadjuvant treatment then surgery ? radiation ? reconstruction.
__________________
HX: left breast IDC T1a node negative 1999. Lumpectomy, sentinel node biopsy, radiation therapy, 5 years of Tamoxifen, 1 year of Femara discontinued due to intolerance.
3/21/14 almost 15 years later abnormal mammogram 2 cm right breast mass deep in the breast by the chest wall, mammogram last year was normal. Ultra sound confirmed highly suspicious for malignancy.
3/26/14 needle biopsy proven IDC grade 3, ER+ PR+ Ki67 75%, Her 2 in process.
3/31/14 Consult with Breast Surgeon. Bilateral mastectomy discussed along with referral to plastic surgeon for planned surgery with reconstruction.
4/4/14 Her 2 +. My Oncologist explained that this is a new primary and unlike before in 1999 very aggressive. Surgery put on hold.
BRCA testing done. Results were negative for gene mutation.
4/7/14 PET CT for staging for possible neoadjuvant treatment. Results indicate 1.3 cm tumor and a positive lymph node.
4/9/14 lymph node biopsy. Pathology documented metastasis.
4/14/14 cardiac echo result Ejection Fraction 60%
4/16/14 Port placement
4/17/14 1st chemotherapy treatment
with Herceptin, Perjeta, taxotere and carboplatin.
4/18/14 1st treatment done yesterday with no events whatsoever!
4/23-4/25 Dreaded D hit really hard.
Daily visits to the Oncologists office for hydration and neupogen injections.
4/24/14 Started on Cipro for seriously low WBC count.
4/25/14 Results of blood count at MD office so low (ANC 0.08) I am hospitalized in isolation for neutropenic precautions. One treatment wiped out my immune system!
4/28/14 home recovering. 4/30/14 MD's new plan of treatment: reduced dose weekly taxotere, carboplatin, Herceptin with Perjeta every third week.
5/7/14 Cardiac echo > than 60% and the breast ultra sound showed 2 cm lymph node now only .5 cm. mass in breast is unable to be palpated!! treatment is a go.
5/9/14 Partial 2nd treatment, full dose Herceptin and Perjeta 1/3 dose taxotere and carboplatin.
5/13/14 lab check and fluid infusion.
5/14/14 Appointment with my Oncologist. The lab results are great and the dreaded "D" not as severe as 1st round. Then I mention that my left calf and foot are swollen and painful to the point of limping, could be the drugs but to be safe I had a venous doppler study. I have a clot in my left leg. It wasn't totally occluding the vessel and she really didn't want me in the hospital. Now I will be on Arixtra shots in my tummy till the chemo is complete sometime in August, 2014
5/16/14 continuation of 2nd treatment taxotere carboplatin only.
5/23/14 continuation of 2nd
treatment taxotere, carboplatin only
Amazingly no horrid "D" or nausea!!
5/28/14 visit with the oncologist, great news she can no longer feel a breast mass or the malignant lymph node Yippee!!
5/30/14 started 3rd chemotherapy cycle had full dose Heceptin, Perjeta ans 1/3 dose taxotere and carboplatin.
6/6/14 next dose of taxotere carboplatin for 3rd cycle
6/13/14 last dose taxotere carboplatin 3rd cycle
6/16/14 I am scheduled again for another breast ultrasound to see extent of response to chemotherapy. results will direct continued chemotherapy of directly to surgery!
6/20/14 tentative 4th chemotherapy cycle



"Zumokato Toku" is my Chemo Ninja Cancer Assassin name!
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