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02-22-2013, 01:07 PM
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#1
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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I've Been Deported! (and re-ported and my liver met updates)
Hi Everyone,
Just wanted to check in and post an update.
Got my new power port last Monday, and had my 12th weekly Taxotere 2 days later.
That last Taxotere really slammed me, so I'm taking a chemo break and will just continue with Herceptin, and as of yesterday, we've added Perjeta!
The good news is that I was able to get the Perjeta through Genentech because my insurance company has denied coverage.
This couldn't have come at a better time because my last MRI of my liver on Friday, showed reduction of the mets, but not I'm not NED yet.
My tumor markers have come way down too. The Her2 Serum is now at 9.0 yeah! and the CA15-3 is at 43.
So, I'm getting there.....but am praying that the Herceptin and Perjeta will not let things progress while I take this much needed chemo break.
Please keep your fingers crossed for me and maybe your toes too!
Kim
__________________
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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02-22-2013, 04:13 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: I've Been Deported! (and re-ported and my liver met updates)
Super great news on getting Perjeta. Genentech does have a good reputation for helping us get drugs when the insurance people drag their feet.
How do you like your new port? Is it about the same size as the old style one?
Now get on your beloved horse and take a victory lap!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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02-23-2013, 06:18 AM
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#3
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: I've Been Deported! (and re-ported and my liver met updates)
And the winner...
for clevesest thread title on the HER2 sight...goes to...
KIM in CA!!!
Congrats on getting the award...but more important for Perjeta. Can't wait to read more good news in the near future!
Rest, and then go get 'em!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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02-23-2013, 08:02 AM
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#4
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: I've Been Deported! (and re-ported and my liver met updates)
Kim,
I agree with Denise! When I read your "I've been deported" I thought, "oh no! What did she do?" You know how to get us to read your post.
I am really glad to hear Genentech is helping with the Perjeta. That is a wonderful blessing. I hope your SEs are not too wicked with that stuff. Please keep us posted and good luck with it!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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02-23-2013, 08:30 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: I've Been Deported! (and re-ported and my liver met updates)
WHAT?!?
UGH, I Take a few days off from the boards and now I see my beloved alter ego in California is back in the saddle fighting off mets when here I am in Connecticut blissfully bragging about you to my oncologist about how long you have been NED!!
I knew your markers were on the rise but I didn't realize your set back was so significant!!
Kim, why did they put you on Taxotere when your mets returned? And why Perjeta? (vs Tdm1 ? ) Or is it the same? Details please!!
Have you had tumor profiling done on your biopsy?
My new nodule in my lungs has shown NO activitiy now between the last two scans and I have NEVER been sensitive to tumor markers; so of course they are of no help to me. I am hanging on with Herceptin only and giving some thought to just excising the one lung nodule.
I am so glad you are OFF the Taxotere now - I am sure it won't take you - the master of Zen and nature's energy - any time at all to get back in the saddle. You go sister - I love your zest for life and your optimistic attitude. YES you will get back to NED. Please stay with us and keep us posted on how the Perjeta works out.
Love and Hugs,
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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02-23-2013, 12:45 PM
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#6
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: I've Been Deported! (and re-ported and my liver met updates)
Ha ha ha ladies,
Glad my title "gotcha"!
A little levity goes a long way sometimes, in keeping all this cancer stuff manageable.
To answer your question Kim, I was actually the one that suggested going back on the Taxotere after it was apparent that being back on the Herceptin alone was not bringing my tumor markers back down.
Back in 2001/2002 the Taxotere brought me to NED when my liver was fully engulfed with tumors. It wasn't til near the end of treatment that the side effects became really bad. I didn't even lose my hair back then, just thinned quite a bit.
I also thought about the TDM-1, but since it has only just been approved as of yesterday, I would have had to travel quite a ways to get treatment at a faciltiy doing the expanded access. So, I asked my doctor to pursue getting me approved for the Perjeta.
As it turned out, the Taxotere has been a real "bugger" for me this time. So, I'm taking a chemo break and just doing the Taxotere and Perjeta for now.
We will be discussing the game plan going forward when I meet with my new oncologist after we've made the big switch to Kaiser on March 1st. I already had a
consultation with her before we made the decision to change health plans, so am feeling confident that she will guide me in the right direction.
So.....stay tuned,
Kim
__________________
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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02-23-2013, 02:36 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: I've Been Deported! (and re-ported and my liver met updates)
I will stay tuned and thank you for those updates!
God willing, Perjeta will be the magic bullet for you - and
it stands to reason it will. I just brushed up on its actions and
it seems to work like a more potent Herceptin - which you have been
very responsive to.
Well, in any case please keep us posted.
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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