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Old 05-27-2016, 09:39 AM   #1
Kim in CA
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Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Smile Re: 12 years Stage 4 - Still A-OK
Dear Kim,

What fabulous news! You are always not far from my thoughts, and this news just makes me beam.

I wonder if I can reach NED again on the Kadcyla, if I too might get a booster. Guess I will get in touch with Drs. Disis and Salazar and see what they have to say.

In the meantime, I'm still enjoying life and trying to squeeze the most out of every day. Off to Dru Barner campground in the El Dorado Nat'l forest tomorrow with my trusty steed for a dose of nature!
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 05-27-2016, 06:28 PM   #2
mamacze
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Location: Madison, Connecticut
Posts: 638
Re: 12 years Stage 4 - Still A-OK
Becky!! Kim from Ca! This is like old home week! I am so happy to see you are all doing well. And Marie thank you for your good wishes. Kim call the TVG - you just might get into a booster trial and it can't hurt to ask. The one I am entering is the second part of my original trial from 2005. Tell Doreen we have been chatting - it will make her laugh! In the meantime I know nature is your soul food and I think the National Forest is right where you need to be.
XO
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

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

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

2011 - Still Herceptin only and NED

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

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

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

2022 On Herceptin and NED continues - WOOT WOOT!
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