| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-08-2007, 08:46 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Tykerb/Herceptin Question
I saw my onc for the first time after getting my good news about my CA 27-29 last Friday. He called it a "miracle response" and said I was continuing to be the "miracle patient".
That being said, he wanted to take me off of Herceptin. He thought the Tykerb/Xeloda was what was making the difference, as the TM's had been creeping up while on Herceptin alone. He had kept me on as he was not sure if I would respond to the Tykerb.
Getting off the Herceptin will also be easier on my heart. I was a bit hesitant when he brought it up, as I have been on Herceptin for almost 4 years, and it's been a good friend.
But if the blood tests indicate it, I can always go back on Herceptin. The one really big Woohoo in this is that I'm hoping to lose the Herceptin weight. I've heard from others and they report that they lose the Herceptin weight shortly after stopping it. Wouldn't that be nice!!! Right in time for summer sports too!!!
So I've had my last Herceptin infusion, at least for the forseable future. I wasn't expecting this, but now I'm excited about it.
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05-08-2007, 09:14 PM
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#2
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Esther, I had my last Herceptin 4 weeks ago in preparation for starting Abraxane, and then Tykerb last week, and at my oncs today realized I've lost 5 lbs without even trying! So that's the bright spot for sure.
I was sad to let my old friend go, I've been on it for over 6 years, but we had a good run with it and I'm grateful for that, and GLAD for Tykerb.
Good luck at your weigh-in's!
<3 Lolly
__________________
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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05-08-2007, 09:39 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Yeah Esther! Great news! I, too, was afraid of leaving Herceptin behind as I also considered it my old friend of about a year and a half... but I felt better also knowing we could go back to it later if needed.
__________________
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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