| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-01-2007, 10:03 PM
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#1
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Anyone, Please Comment/share Info With Me
Today, I could have started tykerb+herceptin, due to progression of disease,( it has grown a little for the last 4 months and CA2729 reading is up to 58 from 44), normal CBC, heart, liver, brain etc.; but I opted to go back to navelbine+herceptin since this combo worked really well for me. I have been reading everyone postings about Tykerb and the side effects; based on that, (and my gut feelings) decided to postpone its use.
I'd like to add that I have been pretty lucky since recurrence in 2003, with no major problems, or annoying side effects. It will be four years in August...
My onc and I decided that if this does not work, then we may switch to tykerb and herceptin, not xeloda.
Esther: I took your posting regarding tykerb+herceptin use post-clinical trialsto my oncologist; he will be doing some homework regarding this combo, since he said he's never heard of this combination. His opinion his that Tykerb should do the job that Herceptin is currently doing for us. Basically he' s saying Tykerb+Xeloda would be a better and effective combo w/o Herceptin. Thank you for sharing the info with us.
Any toughts/comments will be very much appreciated.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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05-02-2007, 07:18 AM
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#2
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Senior Member
Join Date: Apr 2007
Location: Arizona
Posts: 29
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Adriana - although I have not started the ty/xel. combo I am still doing it. Everything I"ve read about it is so positive and I know the onc. can adjust your xeloda so that the side effects aren't too bad. I was on Herceptin and now just the ty/xel. starting next week - I"ll deal with whatever I have to I guess and talk to my onc.
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05-03-2007, 03:25 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Adriana; My onc started me on Herceptin/Navelbine in 2001 when I first recurred. Like you, this combo was very good for me. I've had a total of three recurrences, each time treated by adding Navelbine, for 6 months, to my maintenance Herceptin. However, each response was less "vigorous" and by the third recurrence I was "only" stable on the combo but we strung it out as long as possible before finally saying goodby to Navelbine last year when I started Xeloda. I think if you have a chance of getting another run with Navelbine, in my experience this tactic has worked well so far.
Good luck, and keep us posted.
<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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05-03-2007, 03:32 PM
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#4
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Senior Member
Join Date: Apr 2007
Location: Arizona
Posts: 29
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Lolly (or anyone plse.) - I am starting xeloda and tykerb next Wed. Did you loose your hair with xeloda? They tell me there is a possibility one time when I called the company and the next time they said there were no reported hair loss stories.
I'd appreciate your comments.
Thanks
B
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05-04-2007, 08:39 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Bailey, hi. No, I didn't lose my hair with Xeloda, although it seemed it thinned a bit. However, it remained healthy enough that I carried on with getting highlights, so hope your's does as well! I've known several others at my treatment center who also didn't lose their hair on Xeloda. Good luck!
<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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05-05-2007, 08:06 AM
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#6
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Senior Member
Join Date: Apr 2007
Location: Arizona
Posts: 29
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Lolly - thank you so much for that. My Onc said I MAY loose some but not alot - I haven't heard of anyone else even mentioning it thinned a bit so not sure who else that has happened to. I'll keep you all posted.
B
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