Greetings,
I'm Stage IV, ER+, HR2+...Doc wants me to participate in trials for Lapatanib/Herceptin. Does anyone have an opinion? Who has taken Herceptin, and did it work, etc...?
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Denny123 Joined: Jan 2004 Posts: 2,486 |
Nov 6, 2009 05:57 pm
Denny123 wrote:
In Jan 2004, I went on a clinical trial of Gemzar and Herceptin for very aggressive liver mets. After 9 months, my liver went into remission. I have continued on Herceptin alone and my liver has continued to be in remission now for over 5 years. It is so easy for me with absolutely no SE and totally responsible for keeping me in remission. Denise Diagnosis: 12/14/2002, IDC, 5cm, Stage IV, 4/40 nodes, mets, ER+/PR-, HER2+ |
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LuAnnH Joined: Aug 2006 Posts: 8,741 |
Nov 6, 2009 06:59 pm
LuAnnH wrote:
I have been on herceptin for a couple years now and doing well. Genetech has some really good drugs going. When we are HER2 positive we overexpress this protien. And Genetech has found some interesting ways to shut down this overproduction of HER2 which in turn makes a very aggessive cancer not so aggressive anymore. Herceptin works by attacking the HER2 protien on the outside of the tumor cell to destroy the cancer. Tykerb (Lapatanib) works the opposite way, it attacks the HER2 protien from the inside of the cancer cell. So the theory is combining the two will allow them to destroy the cancer tumor from both directions . This should shut down the cancer big time. There is no harm in participating in those trials. In my thinking I wonder is it worth it to use both drugs at once, you may eliminate one of those drugs not working at a later point in time. But on the other hand, doing them together could throw you into remission and it won't matter. So I guess I'm saying nothing really....LOL I say go for it if you want to. Participating in a trial helps open doors for others and there is never any harm in that. LuAnn -- www.luannsblog.typepad.com
Diagnosis: 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+ |
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Fitztwins Joined: Dec 2004 Posts: 7,731 |
Nov 6, 2009 07:03 pm
Fitztwins wrote:
Herceptin can be a miracle drug for many. Go for it. SE are minimal. I have been on it for almost 16 months. Doing well. Wash away my troubles, wash away my pain, with the rain of shambala
Diagnosis: 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+ |
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JeninMichig
Joined: Feb 2009 Posts: 477 |
Nov 6, 2009 08:50 pm
JeninMichigan wrote:
I am on Herceptin and Tykerb. I have been on Herceptin for 18 months and Tykerb for about 10 months. It is really a pretty easy combination. Herceptin is super easy and Tykerb has a few more side effects but pretty tolerable. As far as if it works... yep. I have been NED since June 2008. I had bone and liver mets. Jennifer Diagnosis: 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER-/PR-, HER2+ |
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chainsawz Joined: Sep 2008 Posts: 259 |
Nov 6, 2009 11:21 pm
chainsawz wrote:
I have been on herceptin once every 3 weeks since 09/08 and it have been very tolerable and has kept my lung mets stable. I know it has been a miracle drug for many. I have added tykerb for the last few months due to brain mets, but it is also not that bad. I hope you also have great results in the trial! lisa Lisa -mets to lungs & brain.....the weakest step toward the top of the hill, toward sunrise, toward hope, is stronger than the fiercest storm.
Diagnosis: 7/21/2008, IDC, 3cm, Stage IV, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2+ |
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Chelee Joined: Dec 2005 Posts: 1,012 |
Nov 7, 2009 03:58 am
Chelee wrote:
I was stage IIIA, Her2/neu, 3+++, 5 pos nodes. NED for 3 yrs 9 months...now recurrence to rt axilla, illium, sacrum. (Possible liver...their not sure.) I have compromised lungs & had rough time with TCH the first time around. So I recently had a 2nd opinion with Dr. Slamon...pioneer of Herceptin. Because of my family history & lung issues he wanted me in the TDM1 trial...and if that couldn't happen they said Tykerb/Herceptin/Zometa. Well my onc and ANOTHER 2nd opinion onc I went to BOTH said they did NOT understand the recommendation for Tykerb/Herceptin? They said you HAVE to add chemo or it would NOT work. (Period.) They both disagreed with Dr. Slamon. I called Dr. Slamon's office and told his NP that both onc's are telling me this won't work? She said matter of fact that it WOULD work because I am SO "HER2" positive. Since I have gotten this recommendation and done alot of research on it...I'm finding out most woman that have used just these two drugs together have been thur clinical trials only. (So it's like the oncologist don't all know about the Tykerb/Herceptin combo and the good results they are getting?. I know of one woman on the Her2support board that had a 2.2 cm tumor and she went on a 3 month clinical trial of Tykerb/Herceptin to shrink her tumor before mastectomy. No trace of tumor...she had a complete response. I would be all for a clinical trial with these two drugs...results have been good. I wish onc's would get up to speed. Chelee Dx 12-05, Stage IIIA, Her2/Neu, 3+++, Er & Pr pos, 5 of 16 pos nodes.
Diagnosis: 12/20/2005, IDC, 3cm, Stage IV, Grade 3, 5/16 nodes, mets, ER+/PR+, HER2+ |
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JeninMichig
Joined: Feb 2009 Posts: 477 |
Nov 7, 2009 08:59 am
JeninMichigan wrote:
My onc feeling is that they are seeing very good results from Herceptin/Tykerb combination. I am not in a clinical trial. I was NED when she added Tykerb but she said she wanted to give me that extra protection for the first year after I finished chemo when reoccurance would be most likely. She said Tykerb has not yet proven itself to be as effective as Herceptin but she is afraid that if it does document to be as good, the insurance companies might push that patients take Tykerb verus Herceptin due to costs. She hopes this is not the case as Herceptin is a much more tolerable drug than Tykerb. I also have heard that the more highly HER+ you are the better your respond to these drugs. Jennifer Diagnosis: 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER-/PR-, HER2+ |
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ElaineD Joined: Feb 2008 Posts: 979 |
Nov 7, 2009 11:11 am
ElaineD wrote:
Herceptin worked well for me when combined with taxotere. But used alone, the tumours quickly regrew, so my on decided to try xeloda and tykerb-and this achieved nothing at all. I'm on clinical trials at the moment (PARP inhibitors), but he's said that once this ceases to be effective for me he'll put me back on to herceptin. Again, we all respond so differently, it's hard to give useful advice other than to warn of potential side effects. I had high hopes of lapatanib, so was absolutely devastated when it failed. Diagnosis: 11/4/2007, 5cm, Stage IV, Grade 3, ER+/PR-, HER2+ |
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RebeccaAnne
Joined: Nov 2009 Posts: 4 |
Nov 7, 2009 12:20 pm
RebeccaAnne74 wrote:
Thank you for these responses...I have my Muga scan this Friday, so if I pass that (and I will), then I'm going to go for the study...I didn't know this website was around. I am learing more here than I have learned anywhere else. ![]() Diagnosis: 1/25/2008, 5cm, Stage IV, mets, ER+, HER2+ |
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