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Old 04-30-2007, 01:26 PM   #1
julierene
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I asked my onc specifically about some protective notions of the tykerb/xoleda and he said that it didn't cross the blood brain barrier. (I feel like I get dizzy a lot more frequently, and headaches.) Is there something that is showing that it is?
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 04-30-2007, 02:17 PM   #2
bailey
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That is weird because everything you will read about tykerb will tell you that it does cross the brain barrier - that's what is so great about tykerb to hopefully protect the brain from tumors. I have not heard of having headaches with tykerb/xeloda. The biggest side effects I know of are diarhea, nauseau, some vomiting,fatigue, rash on hands and feet - if you look up the drugs you will beable to see the side effects for yourself. You should let your Dr. know about the headaches because you should beable to get something for that. Also, sometimes it takes a few days till your body adjusts - do you have other side effects?
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Old 04-30-2007, 08:49 PM   #3
hutchibk
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In my conversation with my doc on friday he assured me that Tykerb and Xeloda do cross the blood brain barrier. But we don't know if the Ty will eradicate the mets that we see. We have to go after those another way and hope that the Ty helps protect the brain from future mets.
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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 04-30-2007, 09:17 PM   #4
Esther
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When I spoke with Dr. Pegram at UCLA, he specifically said that for responders the Tykerb had a very high rate of success in preventin new brain lesions, and that the success rate in decreasing the size of existing lesions was in the single digits.

So some responders even see reduction in size in lesions already there. Tykerb and Xeloda do cross the BBB, that was evident in the clinical trials. You can do a search and get access to the trial results for further evidence.
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Old 05-01-2007, 05:16 AM   #5
Lolly
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2006 ASCO Data

Here's an excerpt from GSK's web page on the data from Tykerb trials released last summer, along with the link to the site:

Tykerb Activity in Brain Metastases Associated with Breast Cancer
http://www.gsk.com/ControllerServlet?appId=4&pageId=402&newsid=843
"...analysis from the EGF100151 study (Late-Breaking Abstract) suggests that Tykerb may play a role in decreasing the occurrence of brain metastases. Indeed, in the interim analysis, only 4 patients experienced CNS relapse in the Tykerb -capecitabine arm versus 11 in the capecitabine alone arm.1
Another study (abstract #503) being presented today at ASCO provides preliminary evidence suggesting that Tykerb may be effective in treating brain metastases associated with breast cancer. The Phase II trial was conducted by investigators at the Dana-Farber/Harvard Cancer Center, the Universityof North Carolina, and Georgetown Universityand was sponsored by the National Cancer Institute’s Cancer Therapeutic Evaluation Program (CTEP). The trial evaluated Tykerb in 39 patients with ErbB2 positive breast cancer who had developed CNS metastases while on trastuzumab. As reported in the abstract, two patients achieved partial response as measured by RECIST, a linear measure of solid tumors. An additional five patients achieved stable disease for ≥ 16 weeks. Volumetric analysis, which is a more precise three dimensional measure of tumor volume, was performed in 20 patients. Eight of the patients (40 percent) showed volumetric decline in CNS lesions – five patients showed ≥ 30 percent volumetric decline and an additional three patients showed 15-30 percent volumetric decline. Although the trial did not demonstrate the hypothesized level of activity as assessed by RECIST, the study concludes that there is sufficient evidence of preliminary clinical effect to suggest that Tykerb can penetrate the CNS.2 The most common adverse events with Tykerb were diarrhoea (grade 3, 21 percent), fatigue (grade 3, 16 percent), and rash (grade 3, 5 percent).

Following the encouraging results from the CTEP trial, Tykerb is now being studied by GSK in a large, international, randomized Phase II study designed to assess the impact of Tykerb monotherapy on brain metastases by monitoring lesions in the brain using magnetic resonance imaging, a volumetric measure."
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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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