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Old 08-11-2007, 02:10 PM   #1
anotherone
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Join Date: Jun 2007
Posts: 13
lapatinib

Ladies, could you please share your knowledge.
I'm on herceptin currently, I had 5+ lymph nodes, no distant methastasis found for now. I'thinking about adding lapatinib to my treatment. It is not approved for non-methastatic cancer in the UK where I live so it is a big challenge and a big expens trying to get it. Would lapatinib + herceptin be more effective than herceptin alone? Would it be reasonable to do lapatinib after herceptin finished?
Thanks. It is ridiculuos that I ask you about it instead of asking oncologists but they are just quoting NICE guidelines in their replies to me and sound like a prerecorded message "not proven not proven". I don't trust them in this matter as NICE concerned more about costeffectivnes than about my personal chanses to survival.
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Old 08-12-2007, 12:27 PM   #2
hutchibk
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Hi - repost this under the Herceptin/Tykerb forum! There are a few ladies there who are doing Herc and Ty together... They should be able to share lots of info with you.
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Brenda

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 08-12-2007, 02:19 PM   #3
anotherone
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xx done
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Old 08-12-2007, 02:48 PM   #4
Shell
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The trial results are not in to ascertain the effectiveness of lapatinib (tykerb) with herceptin, but as you know there are on some trials commencing about this. You also note it is not US-FDA approved for outside the metastatic setting, so that is hard to say, especially as you note you are in the UK.

I wanted to try tykerb ( and joined the clinical trial) because herceptin is not working for me, and has never worked as far as we can tell. Since tykerb attacked from within the cell, I thought it might help. I was on it after the clinical trial once FDA approved, but actually stopped it due to the high Grade III diarhhea I was experiencing.

I wish you the best of luck, and still try to read all I can about its untapped potential...keep us posted.

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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