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Old 07-27-2008, 09:41 AM   #1
Henny
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Tykerb Trial after Completing Herceptin?

Has anyone with "only" locally invasive her2 done a clinical trial with Tykerb after finishing herceptin? My onc mentioned this a few months ago. I see him in October for my 1st 3 month f/u after finishing a year of herceptin.
What about a bone agent to keep bone mets away?
Part of me says to look for any trial that might influence staving off mets and the other part of me says leave well enough alone and don't go looking for more side effects.
I really value what everyone here has gone through and your thoughts and ideas. There isn't another group on the planet who has thought and researched this more than you all here.

Thanks for any input

Henny
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Henny
Dx 3/07 IDC and DCIS Her2+ ER- PR-
Stage IIb 1/15 nodes
A/C, Taxol, Herceptin
Bilateral mastectomies with recon
Zometa 2/yr for 3 yrs- finished 8/2011
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Old 07-27-2008, 02:48 PM   #2
Mary Jeanne Phillips
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Hi henny, I am in the same situation. I have been on Herceptin over 2 years now and have had 5 brain tumors plus mets to other organs. I have been on Zometa the same length of time for the bone mets. I have done well on both with no side effects. Now since the 5th brain tumor and some progression in the lung liver and bone mets we are thinking of TYkerb alone, not with Xeloda. I wanted any info on side effects from people on Tykerb now too. Still taking herceptin and Zometa until I can decide what to do. MJ
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Old 07-28-2008, 02:58 PM   #3
hutchibk
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Mary Jeanne - you are the exact candidate for Tykerb/Xeloda. Xeloda is a chemo that works in the body and also crosses the blood brain barrier with the Tykerb. I would be curious as to the reason your doc is not considering Xeloda. The combo of the two is synergistic and would potentially treat your body mets as well as brain mets. I have been on T/X for 15 months for three 8-9mm and 5 'punctate' brain mets. In my case, it rendered them inactive after just 4 months on the combo and they have remained inactive ever since, as well as keeping any mets in the body at bay. We did discover a very small bone met on my right iliac wing last month and started treating with Zometa as well. If that doesn't attend to that one, we are talking about adding Herceptin back in along with my Tykerb/Xeloda. It was my decision to try this combo first before signing on for Whole Brain Radiation, and I am very happy that we tried this first. I have been able to save WBR for a last resort, if ever necessary. Please talk to your doctor about all of the options and don't wait too long... Best of luck! Let us know what you learn and decide to do.

Also, I had little side effect from the combo for the first couple of months, and ever since have had vitually no side effect. Not everyone has the same experience or result, but it is a powerful option in our fight and well worth considering, in my opinion.
__________________
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; 07-28-2008 at 03:01 PM..
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Old 07-28-2008, 03:06 PM   #4
hutchibk
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Henny - there was (maybe still is) the TEACH trial, which was a Tykerb trial for those who are clear after their Herceptin completion.

Also, talk to your doc about Zometa for your bone protection and it has also shown to improve overall survival.
http://www.curetoday.com/breaking_ne...07182008.1.htm
__________________
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 07-29-2008, 06:47 AM   #5
Henny
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Thanks I'll check out the Teach trial and look into Zometa. It always makes a difference if I go to the onc with information. I like my onc-seems very knowledgeable and compassionate but not a "go getter"
Henny
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Henny
Dx 3/07 IDC and DCIS Her2+ ER- PR-
Stage IIb 1/15 nodes
A/C, Taxol, Herceptin
Bilateral mastectomies with recon
Zometa 2/yr for 3 yrs- finished 8/2011
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Old 08-03-2008, 06:12 AM   #6
Lani
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I googled the TEACH trial and came up with the following

it appears to qualify you must NOT have received herceptin


A Randomized, Double-blind, Multicenter, Placebo-controlled Study of Adjuvant Lapatinib in Women with Early-Stage ErbB2 (HER-2/neu) Overexpressing Breast Cancer (TEACH)
Time frame of study: Ongoing
Location of Study: Beth Israel Medical Center
Contact: Continuum Cancer Center Research Program (212) 844-6286
Summary:
The purpose of this randomized, placebo-controlled trial is to evaluate lapatinib, a new adjuvant treatment for breast cancer, specifically for HER-2/neu-overexpressing breast cancer, which has a high risk of recurrence. While preliminary studies have shown that adding trastuzumab, a drug which is similar to lapatinib, to the adjuvant chemotherapy significantly reduces the risk of recurrence, no trials have tested this type of drug on women who have already completed chemotherapy without trastuzumab. This trial is a randomized trial to compare the patient’s current therapy with the addition of either lapatinib or a placebo.
Eligibility:
Women with early-stage HER-2/neu-overexpressing breast cancer who have not been previously treated with trastuzumab, have already completed primary adjuvant chemotherapy, and currently have no clinical or radiologic evidence of disease. Please call for more information.

Benefits and/or Compensation:
There is no monetary compensation for this study. The information gathered from this study may be beneficial to future patients, and lapatinib may reduce the risk of HER-2/neu-overexpressing breast cancer from recurring.
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Old 08-03-2008, 08:34 AM   #7
hutchibk
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Thanks Lani - for scooping up my poop... LOL. Aren't they doing a trial with Tykerb following Herceptin? Maybe Dr. Winer is involved? or I might be just daydreaming...
__________________
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."
hutchibk is offline   Reply With Quote
Old 08-03-2008, 03:35 PM   #8
Henny
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Join Date: May 2008
Location: Oregon
Posts: 110
Thanks everyone for your input.I was sure my onc did mention a double blind study for those in early stages after completing herceptin but I haven't found much online-(I try not to obsess too much and spend hours online). I guess I'll just chill out until my next appointment. My husband and 90 y/o father are going to Italy in a few weeks to see my brother who lives there so I'm going to try to put my mind into travel books for a while. After reading the thread on the Scary Stuff I'm more determined to have fun today
Henny
__________________
Henny
Dx 3/07 IDC and DCIS Her2+ ER- PR-
Stage IIb 1/15 nodes
A/C, Taxol, Herceptin
Bilateral mastectomies with recon
Zometa 2/yr for 3 yrs- finished 8/2011
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