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Old 04-23-2009, 02:55 PM   #1
Kathy T
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Herceptin, Tykerb and Xeloda

Is anyone taking Herceptin, Tykerb and Xeloda together? Comments? Successful, side effects etc?

Kathy T
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Old 04-23-2009, 11:06 PM   #2
gldouglas
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I was on Herceptin but now I am currently on the Tykerb and Xeloda combo. I believe that Tykerb and Herceptin are similar and just attack the Her2++ proteins in differnt ways. Didn't know that people actually were on all three at the same time!
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04/08 FOUND LUMP AFTER CLEAR GYNO VISIT IN MARCH
05/08 HER2+++, 4.2CM LUMP IN RIGHT BREAST; LIVER AND BONE METS AT DX AND DISCOVERY OF FRACTURE IN LOWER LUMBER
05/23/08 TURN 29 YEARS OLD
05/25/08 LUMPECTAMY
06/08 RADS TO LOWER LUMBER AND BEGIN HERCEPTIN
07/08 BEGIN TAXOL, CARBO, HERCEPTIN, ZOMEDA TREATMENT-EXCELLENT RESULTS!
12/08 STABLE IN LIVER AND BONES
01/09 HERCEPTIN EVERY 3 WKS AND ZOMEDA EVERY 6 WKS
01/09 BRAIN METS! NUMEROUS
01/09 WHOLE BRAIN RADIATION - 15 SESSIONS
03/12/09 CAT/PET SCANS SHOW POSSIBLE SLIGHT REGRESSION OF LIVER METS--
03/20/09 BRAIN METS SHRINKING & NO NEW LESIONS
04/10/09 BRAIN SCAN SHOWS REGRESSION AND NEW BRAIN METS
04/16/09 STOP HERCEPTIN BEGIN TYKERB AND XELODA AND CONTINUE WITH ZOMEDA
04/23/09 CAT/PET SCANS: LIVER IS STABLE
04/25/09 FULL MRI OF SPINE SHOWS A NEW 3MM SPOT IN THE ACTUAL SPINAL CORD IN T9 THORASIC SPINE
CONTINUE WITH TYKERB, XELODA AND ZOMEDA
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Old 04-24-2009, 07:25 AM   #3
donalddonald
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Herceptin is a receptor for her2 while Tykerb is a blocker of her1 and her2, so there is different between them.
As I learned from the net, there is Tykerb and Xeloda combo (FDA approved combo) and Herceptin and Tykerb combo (still on trial), but I never heard of all of them together!
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Old 04-24-2009, 06:01 PM   #4
kk1
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I had all three together and it did a nice job and got me back to NED quickly. For me it was fairly easy treatment just some morning bathroom runs on the off week of xeloda. Now I am just on Tykerb and Herceptin w/o xeloda.
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April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-December 2017 scans clear done every 6 months

Miracles do happen
Stage IV 14 years last 8+ NED
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Old 04-26-2009, 08:24 PM   #5
Rich66
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Did your onc have to do this off label? Are you on Medicare?
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Old 04-27-2009, 12:08 PM   #6
Kathy T
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I suppose it is off label--I start Medicare next month so it might create problems--i don't know.
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Old 04-27-2009, 04:05 PM   #7
hutchibk
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I am on Tykerb/Herceptin and I am on Medicare. It all seems to be working out well.
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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 04-27-2009, 05:34 PM   #8
gldouglas
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Well I am happy to see that Xeloda/Tykerb seems to be working...looking forward to my next scans!
__________________
__________________
04/08 FOUND LUMP AFTER CLEAR GYNO VISIT IN MARCH
05/08 HER2+++, 4.2CM LUMP IN RIGHT BREAST; LIVER AND BONE METS AT DX AND DISCOVERY OF FRACTURE IN LOWER LUMBER
05/23/08 TURN 29 YEARS OLD
05/25/08 LUMPECTAMY
06/08 RADS TO LOWER LUMBER AND BEGIN HERCEPTIN
07/08 BEGIN TAXOL, CARBO, HERCEPTIN, ZOMEDA TREATMENT-EXCELLENT RESULTS!
12/08 STABLE IN LIVER AND BONES
01/09 HERCEPTIN EVERY 3 WKS AND ZOMEDA EVERY 6 WKS
01/09 BRAIN METS! NUMEROUS
01/09 WHOLE BRAIN RADIATION - 15 SESSIONS
03/12/09 CAT/PET SCANS SHOW POSSIBLE SLIGHT REGRESSION OF LIVER METS--
03/20/09 BRAIN METS SHRINKING & NO NEW LESIONS
04/10/09 BRAIN SCAN SHOWS REGRESSION AND NEW BRAIN METS
04/16/09 STOP HERCEPTIN BEGIN TYKERB AND XELODA AND CONTINUE WITH ZOMEDA
04/23/09 CAT/PET SCANS: LIVER IS STABLE
04/25/09 FULL MRI OF SPINE SHOWS A NEW 3MM SPOT IN THE ACTUAL SPINAL CORD IN T9 THORASIC SPINE
CONTINUE WITH TYKERB, XELODA AND ZOMEDA
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Old 05-04-2009, 05:09 PM   #9
CourtneyL
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Posts: 260
I just added Xeloda to my cocktail last week so I am now on all three. We are going to give it a few weeks and if all looks good I will probably go off Herceptin. No major side effects yet but I am slowly increasing my Xeloda dosage to find a good fit.
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
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Old 05-08-2009, 06:25 PM   #10
DianaT
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Posts: 23
I am on all three, since February. I am doing well, some issues with skin and bathroom but since I am dancing with NED now, I will endure!
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Old 05-08-2009, 07:22 PM   #11
gldouglas
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Join Date: Apr 2009
Posts: 6
I can't even imagine dancing with NED but just the thought of it is great!!
__________________
__________________
04/08 FOUND LUMP AFTER CLEAR GYNO VISIT IN MARCH
05/08 HER2+++, 4.2CM LUMP IN RIGHT BREAST; LIVER AND BONE METS AT DX AND DISCOVERY OF FRACTURE IN LOWER LUMBER
05/23/08 TURN 29 YEARS OLD
05/25/08 LUMPECTAMY
06/08 RADS TO LOWER LUMBER AND BEGIN HERCEPTIN
07/08 BEGIN TAXOL, CARBO, HERCEPTIN, ZOMEDA TREATMENT-EXCELLENT RESULTS!
12/08 STABLE IN LIVER AND BONES
01/09 HERCEPTIN EVERY 3 WKS AND ZOMEDA EVERY 6 WKS
01/09 BRAIN METS! NUMEROUS
01/09 WHOLE BRAIN RADIATION - 15 SESSIONS
03/12/09 CAT/PET SCANS SHOW POSSIBLE SLIGHT REGRESSION OF LIVER METS--
03/20/09 BRAIN METS SHRINKING & NO NEW LESIONS
04/10/09 BRAIN SCAN SHOWS REGRESSION AND NEW BRAIN METS
04/16/09 STOP HERCEPTIN BEGIN TYKERB AND XELODA AND CONTINUE WITH ZOMEDA
04/23/09 CAT/PET SCANS: LIVER IS STABLE
04/25/09 FULL MRI OF SPINE SHOWS A NEW 3MM SPOT IN THE ACTUAL SPINAL CORD IN T9 THORASIC SPINE
CONTINUE WITH TYKERB, XELODA AND ZOMEDA
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