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Old 04-22-2009, 10:08 AM   #1
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Beckie's Avatar
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!

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
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Join Date: Sep 2005
Posts: 556

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

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
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Join Date: Oct 2005
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).

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

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

MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
Started Tykerb/Xeloda, no WBR for now
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!
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
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
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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.
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