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Old 04-22-2009, 10:08 AM   #1
Beckie
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Join Date: Mar 2007
Location: Norco, Southern California
Posts: 53
A question about what can be taken with Tykerb.

I have been doing well on Tykerb/Xeloda for 18 months, but then had to change to Navelbine and Herceptin when my lung mets started growing. I was off Tykerb for 4 months and my MRI showed 2 small (3, and 4 mm.) lesions in the cerebellum (already taken care of). The MRI before I went off Tykerb was clean. I want back on Tykerb, but my oncologist says he likes me on Navelbine. We have agreed on 3 weeks for research and of course, you all are the best source I know! What have you taken with Tykerb to control other mets? Do you think Tykerb protects your brain as much as I do? Thanks for any information you can give me.

God bless you all!

Beckie
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Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today


I know Who holds the future, and I know He holds my hand.
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Old 04-22-2009, 12:50 PM   #2
Julie2
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Join Date: Sep 2005
Posts: 556
Beckie,

I am taking Herceptin and Tykerb. Looks like it is working for me.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 04-22-2009, 06:51 PM   #3
hutchibk
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Posts: 3,519
I was on Tykerb/Xeloda for 18 months and it worked fantastic for me, knocking back my brain mets with a complete response, allowing me to put off having brain rads for those 18 months. Once we saw a little activity, I had IMRT on my 5 brain spots. We switched me to Tykerb/Herceptin after that (7 months ago, so I have been on Tykerb for 25 months) and I am still enjoying clear brain MRIs... the only met that we've seen in the torso is a bone met on (pelvic) illiac wing bone, and it has remained stable with no progression for 20 months, so both Ty/Xel and Ty/Herc have been keeping the extra-cranial mets in check. I plan on enjoying this combo for as long as possible! I love Tykerb.

One thing to consider is this regarding Tykerb and effectiveness that we learned at SABCS in December. It appears that down-regulation (low expression) of PTEN (phosphatase and tensin homolog) predicts a good response to lapatinib (Tykerb). On the converse, a low expression of PTEN and PI3Ks predicts resistance to trastuzamab (Herceptin).
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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."

Last edited by hutchibk; 04-22-2009 at 07:01 PM.. Reason: add info
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Old 04-22-2009, 07:19 PM   #4
donalddonald
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Join Date: Mar 2009
Posts: 36
Hi Beckie:
My wife is having Vinorelbine injection with long term Tykerb, basically Vinorelbine is the same with Navelbine. For the first 3 injection, it bring down the tumor markers, and this week she will have a MRI to check on the little spot on her lung!
Just for your reference and hope this help you.
Donald.
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