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04-16-2008, 01:54 PM
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#1
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Senior Member
Join Date: Jul 2006
Posts: 869
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Many tests done....good results...almost
Hi Everyone, Sisters and Brothers, Well, I just completed quite a series of tests...muga, bone scan, mri of the brain, ct of abdomen and pelvis mammogram--all clear! However that single lung met I had around this time in 06 and was put into remission is back. After I had my mastectomy in November, I was taken off of the navelbine and xeloda and have just remained on herceptin. The lung met showed up on the ct scan, it is small, everything else is clear. Since it first appeared while on herceptin only and now has come back on herceptin only, my onc wants to switch me to xeloda and tykerb instead to hopefully get me back to remission. I guess I am getting used to this cause I didn't even cry...I am scared, but remain hopeful. Any comments on tykerb would be appreciated. Sincerely, Ceesun P.S. This just reaffirms my decision to retire after this school year!!
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04-16-2008, 02:22 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Well, we can celebrate with you all the good news and trust that single persistent lung met will bite the dust with the tykerb and xeloda combo. I'll be praying that the new combo works it's wonders quickly! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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04-16-2008, 02:22 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Sorry to hear your lung met is back. Is it possible for you to get into the Herceptin MCC- DM1 trial. It is very tolerable and is working well for most patients.
Best wishes,
Barbara H.
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04-16-2008, 04:35 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Congratulations on the (mostly) GREAT news! I'm no expert, but is it possible to get a focal treatment on the single lung met? You may have to fight for it, as I know it's not standard of care, but it might be possible.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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04-16-2008, 05:15 PM
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#5
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Ceesun! It's such awesome news that you were able to have so many scans and they all came back clear! As you probably already already know, the Tykerb is in pill form too, and it does tend to cause diarrhea. I wish I could help more, but I do know of a few women and this site who are/were on this combo. Best wishes, Bill
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04-16-2008, 05:50 PM
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#6
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Congratuations on your somewhat happy news!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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04-16-2008, 06:21 PM
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#7
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Ceesun, Despite the lung nodule being back, you are doing really well. Hopefully the new combo will knock it out again for another two years. Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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