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Old 05-04-2007, 12:34 PM   #1
Esther
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Tykerb Update

I finished a 3 week cycle of Tykerb and a 2 week cycle of Xeloda on Tuesday of this week, the 1st of May. When I went in for my Herceptin infusion, I had my blood drawn for my labs.

My CA 27-29 had been at 398 three weeks prior to this. I just called to see if they had the results, and my CA 27-29 results were 90. So they went from 398 to 90 in just 3 weeks of being on Herceptin, Tykerb and Xeloda.

The TM's have always been very accurate for me, so this was good news that something positive is happening. I was hoping for good news, but this was better than what I'd expected.

My liver and bone mets have continued to stay in remission, so this may be very good news regarding my 3 brain lesions. I'm due for a brain MRI in about a month, so will have more input then, but for now, this was very good news indeed.
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Old 05-04-2007, 12:50 PM   #2
hutchibk
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Esther! I am so happy to hear this. You are a true inspiration. You and I have a few similarities right now, TMs that are typically very accurate, switching to Ty/Xel, and watching 3 small brain mets...

My doc isn't ready to do Herceptin with the Ty/Xel right now, but I know he is keeping an eye on the Ty/Herc trials for the future.

I am tolerating the Xel just fine so far (and I took it today without a Zofran preventative dose ahead of time - no nausea!!). I will know more after the Ty arrives in the mail and I add it to the mix. But knowing that you are tolerating it well and in combo w/ Herc is amazing and truly inspirational!

Keep up the good work! That is such awesome news. I think you deserve to treat yourself... go buy some new shoes or something!
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 05-04-2007, 08:29 PM   #3
Lolly
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Esther, that's incredible news! Thanks for the update, and encouragement for those of us just starting Tykerb.
Enjoy your weekend, I hope you're going for a spin in that new sports car!

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-05-2007, 08:15 AM   #4
Andi
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Esther - that is so good to hear! Let's hope the combo knocks the socks off those brain mets.
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Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 05-05-2007, 10:51 PM   #5
chrisy
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Wow

HOLY MOLY (or should I say mole as it is cinquo de mayo) that's fantastic! I'll be hoping this is VERY good news for you and the others watching brain activity. Thanks for posting!
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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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Old 05-06-2007, 06:57 PM   #6
koolmom
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Wink

I'm new to the board, but wanted to say CONGRATTTTSSSS!!!! I feel like I have a new family.
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Old 05-06-2007, 09:06 PM   #7
Sherryg683
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Glad to hear the good news and that the Tykerb is working!!!..sherry
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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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Old 05-07-2007, 06:24 AM   #8
Shell
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Esther-

what fantastic news - and what a comfort knowing TMs are an indicator for your response.

regards,
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Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 05-08-2007, 01:55 PM   #9
Joy
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Esther

Chalk it up to chemo brain, but in my mind I posted a celebratory note to you, but that doesn't really help to communicate to you how happy I am to hear of your news. How wonderful to know that this actually works and from here seems so manageable for you. I'm inspired and confident that I can do this and have results-so thank you for the encouragement. Most importantly, though, this is great news for you and I am excited for you and look forward to more great updates.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-08-2007, 05:33 PM   #10
Carolyns
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Esther,

That is great news. I am glad to hear that the markers are dropping so fast. I hope you gave yourself a little treat!

Love, Hope, and Peace,

Carolyns
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