Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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01-27-2008, 06:28 AM
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#1
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Member
Join Date: Feb 2007
Location: New Delhi, India
Posts: 22
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Progression on Tykerb+Xeloda in 6 months
Bad news for my Mom... Wanted to share here our experience:
History: her2 3+, ER-, PR- diagnosed in 2001... has had taxol, herceptin, gamma knife, RT twice 40, brain surgery.
Prior to treatment, she had 3 small lesions on liver, small lesion on sternum, recovering from surgery for solitary brain met (which was unremarkable in PET after surgery)
Treatment given :
6 months of Tykerb daily - 1250mg
6 months of Xeloda (2 week on/1 week off) - 2500mg (reduced from 3000mg due to side effects)
Post treatment :
Disease is now more widespread with growth of lesions in liver, large mass on Sternum, spread to collar bone and some axillary/lymph nodes. Also, there is recurrence in the bed of the originally removed brain tumor.
It's clear that Tykerb and Xeloda failed completely.
We are now reverting to herceptin+navelbine for the moment. Her best response was from Herceptin back in 2004 but was taken off by 2005 - so reason to believe it will still work for her.
Any thoughts, suggestions much appreciated.
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01-27-2008, 07:05 AM
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#2
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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I'm so sorry to hear about your mom, but do not loose hope. I too failed on T/X after about 8 months. However, I started on Navilbene/Herceptin in December and I seem to be responding well. Have not had a scan yet but my pain (from liver radiating to back) is gone and my liver enzymes have returned to normal. I am on this regimen weekly (3 weeks on and one week off) and find it pretty easy to tolerate (some fatigue and minor mouth sores controlled with baking soda rinses). So tell your mom to keep on fighting, we have to hang in there as there are many exciting things in the pipeline of development. We just have to stick around long enough to benefit from them.
Good luck to you and your mom, she is lucky to have someone like you on her side.
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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01-27-2008, 07:19 AM
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#3
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Sorry to hear about your mom. T/X didn't work for me,too. I'm on weekly Herceptin/Navalbine since October of last year (weekly herceptin and two weeks on/one week off navalbine). My scans this month showed no new disease. Hopefully, this combo will do the works.
My love to you all.
Hugs,
Gems
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01-27-2008, 06:03 PM
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#4
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Member
Join Date: Feb 2007
Location: New Delhi, India
Posts: 22
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Donna, thank you for your words... was really depressed with the present situation with so much hope on T+X. For the first time in 7 years felt we had slipped into the "running out of options" category.
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01-27-2008, 06:05 PM
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#5
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Member
Join Date: Feb 2007
Location: New Delhi, India
Posts: 22
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Gemma, thanks that is very encouraging. What is your her2, er, pr status? Did your doctor talk to you about Tykerb+Herceptin? My mother has a brain lesion and herceptin does not penetrate the brain, hence concerned about that. Carboplatins are next i guess.
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01-28-2008, 07:58 AM
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#6
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Senior Member
Join Date: Dec 2005
Posts: 148
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I talked to my onc abt Herceptin and Tykerb and he said as they are running the Neo ALTO trial so there has to be some clinical evidence to start the trial.
Plus if you see logically Tykerb + Herceptin should give a double punch to kill the cancer cells from inside and outside.
He was very confident abt it and my onc is the Director of Research for a big hospital in Boston.
Regards,
Rupali
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01-28-2008, 04:11 PM
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#7
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am currently on Herceptin/Tykerb/Abraxane. I have an brain MRI scheduled for tomorrow to see if the combination worked. I have been on Herceptin since June, 2006. My doctor did not take me off it when she added the Tykerb. I hope it is a good combination. Good luck to your mom. I will keep both of you in my prayers.
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01-29-2008, 06:35 AM
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#8
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Member
Join Date: Feb 2007
Location: New Delhi, India
Posts: 22
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Vanessa thanks. The big concern for us is that the Brain lesion has come back despite Tykerb which was the molecule supposed to traverse the BBB. Our onco feels that since it has failed, no point continuing with it. I guess we need to reassess that.
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01-29-2008, 11:56 AM
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#9
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Do not lose heart...
My husband failed on the T/X and had great progression while on it. After WBR and a chemo regime of A/C (on #5=8-9 total treatments) things are better for him. Try not to lose heart, listen to the responses from the friends here. Hopefully they can arm you with questions and ammo that you can take to the doctor's with you both. There are many options and we are now finding out that previous drugs are still options too. We too had great hope for the T/X treatment and it was disheartening to watch it fail. We too felt out of options, it weighed heavy on our hearts. Au contrarire...there are options and new trials. Best of luck to Mom and a special prayer for you and these tribulations. For now I will keep Mom in my prayers with hopes for relief.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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01-29-2008, 03:43 PM
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#10
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Senior Member
Join Date: May 2006
Posts: 3,142
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Hi,
Tell Mom to hang in there !! Keep searching for answers. Tell the doc to keep searching for answers too !!
Peace,
ElaineM
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01-31-2008, 05:18 PM
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#11
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Member
Join Date: Feb 2007
Location: New Delhi, India
Posts: 22
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Herceptin + Carboplatin
Our onco has suggested carbo instead of navelbine. Any of you have had success on this combo for fairly advanced situation like our? thx.
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01-31-2008, 05:58 PM
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#12
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Hi; here's a link to a new web site developed for BC patients with brain mets. Pattyz, one of our long time members who's been battling brain mets, posted it last month. Hope it will give you some information on treatment options. I'm currently on Carbo/Taxol/Avastin for skin and axilla node mets, so don't know how effective it would be for your mom's situation. Look for PattyZ in the members list, then click to find her earlier posts about her current treatment of brain mets with Temodor/Xeloda combo. She has seen some real improvement for multiple mets. Perhaps you could contact her by Private Message, she is very sharing with her experiences.
Brain Mets BC
http://www.brainmetsbc.org/
__________________
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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