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03-14-2007, 05:00 PM
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#21
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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My questions have been asked by some of the above, but I am assuming you will be posting the answers you receive.
__________________
Andi
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Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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03-14-2007, 09:50 PM
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#22
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Junior Member
Join Date: Mar 2007
Location: Larkspur, CA
Posts: 1
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tykerb/avastin trial
I know there is an Tykerb/Avastin trial open at UCSF under the direction of Dr. Hope Rugo. It just opened last week or so. I imagine there are others around.
You can call the study coordinator:
> Jacqueline Lyandres, MS
> Clinical Research Coordinator
> University of California, San Francisco
> 1600 Divisadero Street
> 6th Floor, Room B612
> San Francisco, CA 94115
> tel: 415.353.7857
> fax: 415.353.9651
Your doctor can also give this combo to you directly.
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03-15-2007, 12:46 AM
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#23
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Junior Member
Join Date: Mar 2007
Posts: 3
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Hi, Just joined the recurrence on a recurrence group this week!! (Damn!!).
I have a small pleural effusion, and wanted to go on Tykerb, however, the EAP states that I must have progressed whilst on Herceptin and Taxol. I don't tolerate Taxol well at all (from adjuvant experience). Is there any other chemo drug (preferrably one where my hair doesn't fall out) that I can go on. Will there be a cut off either of patient numbers or a time limit for the EAP in Australia?
Cheers
Roz
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03-15-2007, 05:27 AM
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#24
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Senior Member
Join Date: Dec 2005
Posts: 148
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what is the best protocol in adjuvant setting for non metastatisc BC :
Tykerb/Xeloda after Herceptin OR Tykerb/Xeloda with Herceptin
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03-15-2007, 05:43 AM
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#25
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Hi Joe - like Caya - would like to know how to get access to Tykerb for EBC outside the US - ie in Australia (stage 11B) - can I get access if I travel to the US? Otherwise I gather it will take several more years for the drug to be listed. thanks for taking on our questions -cheers - B
__________________
Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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03-15-2007, 06:21 AM
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#26
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Senior Member
Join Date: Dec 2005
Posts: 148
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When will Tykerb be approved for sale in India and Canada?
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03-15-2007, 09:00 AM
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#27
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Senior Member
Join Date: May 2006
Posts: 143
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Thanks, Joe. I think this may be Chrissy question, but:
For women who had positive node (s) but no mets, have finished a year of herceptin and are currently NED -- any trials to test returning to treatment on Tykerb for prevention of future recurrance?
THANK YOU
Linda
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03-15-2007, 06:00 PM
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#28
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Thanks for doing this, Joe. My questions concern off-label usage, but I will still be watching this thread for the answers they are able to provide.
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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03-15-2007, 08:20 PM
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#29
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Member
Join Date: Dec 2006
Posts: 5
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Eligibility Restrictions
First, I want to thank you for taking these questions. My sister's oncologist at Memorial Sloan Kettering told us she would not be eligible for Tykerb because she was on Xeloda before ( or Zometa before ). She has advanced liver mets that have stopped responding to any other drugs ( Herceptin, Avastin) and we are out of options. They cannot operate either because of the location of the tumor. She has fought so hard to make it to the Tykerb approval date so we were devastated to hear that she would not be eligible. Tykerb is really our last hope. I am hoping that either her oncologist is mistaken or we misunderstood.
Does anyone know of any eligiblity restrictions?
THANKS SO MUCH!!
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03-16-2007, 05:16 AM
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#30
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Joe--
I thought of a couple things to ask--maybe they're repetitive, so my apologies (I only have a moment this monring).
1. Please comment on the preventative properties of Tykerb with respect to brain mets. Do they feel there is value in taking the drug in situations where there is a high probability of brain mets?
2. Please comment on the value of Tykerb when taken by iteself. What do you feel that the difference in Tykerb's efficacy when (1) taken by itself, and (2) combined with other drugs (which ones)?
thanks!
Val
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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03-16-2007, 10:16 AM
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#31
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Senior Member
Join Date: Apr 2006
Posts: 543
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Joe,
Since in an other post you say that GSK is not going to answer many of the questions in this thread which go beyond the FDA appoval criteria, could you get some responses from oncs not tied to GSK?
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