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05-08-2007, 12:46 AM
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#21
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Genentech makes pertuzumab, herceptin and Tarceva
Tarceva is a tyrosine kinase inhibitor of EGFR like IRESSA is. Trying to get different drug companies to cooperate in a clinical trial can be difficult, but perhaps Genentech would be interested in a trial of three of their products.
There is going to be an interesting conference on the biological basis of breast cancer at the end of June with Francisco Esteva, Laszlo Pusztai (sorry about spelling), Carlos Arteaga, Mark Pegram, etc who think deeply about how all the her2 groups interact. It will be held in Santa Monica and will probably be quite
detailed in the molecular biology of breast cancer. These researchers as well as Martine Piccart and Edith Perez as well as George Sledge, Neil Spector and, of course, Dr. Slamon are all truly interested in the multipronged attack necessary in individual breast cancer treatment which is directed and targetted against the molecular "bad actors" driving each particular cancer.
Susan Desmond-Helman(sorry about my spelling--chief scientific officer) and
Pamela Klein (in charge of herceptin) might be good people to ask whether Genentech is interested in starting up such trials
.
Hopefully the length of treatment required with three agents is far shorter than that required with one, or the cost will end up prohibitive.
Am off in the am for Denmark, so may not join back in for a while (until jet lag recovered from and computer setup sorted out)
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05-08-2007, 05:14 AM
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#22
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Hi Full of Beans. I feel like you do about this. I am going to start with a review of the book mentioned in the posts above. You know, we seem to get a report every day of research advances in BC - yesterday there was a local article on Tykerb. I am blown away that this multi-receptor research hasn't made it into the news at all - it really is an important development, and publicity would help to build awareness, and expectations.
Would love to keep chatting about this.
Would seem that in addition to mutual support, a really good function of this forum could be promotion and collective action. Just not sure how to make that happen.
PS - I have a lot of previous career experience as a trade union activist (early career) and more recently a political and policy adviser to State-level Governments, but in industrial relations, social policy and economics, not in Health. I am thinking a lot about how I can make that experience useful, - not a hard prospect in my own State, but most of the decisions that would need to be influenced are private-sector, international and later national here in Australia - it's a challenge but an interesting one. It's important to find people with energy and/or contacts and/or skills prepared to collaborate to build an international campaign. This site is probably a good place to start.
But, women in all walks of life get BC, so surely there are people who can provide complimentary skills and networks - it is just a matter of finding them.
The reason I want to read the book on the history of herceptin, is that I am just not familiar with the processes required to bring new drugs into the marketplace and into the hands of the women that need them. I think that knowledge will be really important.
At least we can tick the "brains trust" box - Lani is already providing us with the knowledge of the science, which is the ight place to start. (Thank you Lani, again!)
PPS Lani - thanks for your most recent post - the conference sounds good and will no doubt be an important professional network-building event for those very important scientists. Have a safe and productive trip to Denmark.
Belindax
__________________
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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06-25-2007, 02:50 PM
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#23
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Well, I finally got Robert Bazell's book - I think it's a very important book. It seems like Herceptin would not be available to us even now were it not for The passionate obsinance of a number of characters, and a whole lot of happenstance. There were so many points at which the process of developing and bringing the drug to market almost went off the rails.
But I am left wondering if it was a freak. The fact that Genentech was a biotech company not a drug company when Trastuzumab was first being explored meant that risks were taken that may not happen in a big pharmaceutical company.
Hopefully not - I know biotech is seen as an 'industry of the future' and I think to be informed and to be able to advocate in the way that many people did for Herceptin (AIDS advocates seemed to be great allies for BC advocates) we need to understand more about biotech companies, and more about how decisions are made about funding for the development of new treatments.
Still exploring.....
__________________
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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06-25-2007, 03:43 PM
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#24
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Ditto for me too!
What do we do to get it rolling fast!
We as a group (I am sure) would love to help!
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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06-25-2007, 04:21 PM
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#25
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Any news in ASCO regarding the progress on this?
Belinda, just saw your response now and your experience is impressive and you can count me on in term of lobbying! I am French so I am naturally good at this :-)
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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06-25-2007, 06:22 PM
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#26
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Jean was kind enough to alert me to this thread. I am replying so that I can hear what all of you bright minds are sharing. Thank-you!
Terri
(spouse of Ruth, dx 5/1, completed 2nd of 6 TCH)
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06-25-2007, 07:56 PM
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#27
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Good to be working together!!!! Full of Beans try and read the book, if you haven't already. The historical account of how Herceptin got out there is just the best - and there are loads of lessons. Especially in relation to how important it is to do this work collaboratively.
The copy I have was from my onc nurse - it was a complimentary copy that says 'with compliments of Roche" (who bought genentech). Anyone got any contacts at Roche? This book is more useful than many of the dead trees I was given in the form of pamphlets.
I need to learn more about how this whole system works - maybe we can do this together? Maybe we can get enough HER2 women to share knowledge about how trials work, how products are commercialised....
I am in, but it isn't something I can do alone - I need to also build a network of supoprt in Australia. Maybe we need to be exploring more how this wonderful site and medium can be used as a powerful tool for activism!!!
Should we start by posting anything we know about anything at all that might help or any ideas for getting started?
(F.O.B - lol - French people have a formidable history for taking action to sort out problems....with you on board heads might well roll!!!!!!!)
Bxxxxx
__________________
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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06-25-2007, 07:59 PM
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#28
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Promising news. I am worried that all of us who have done Herceptin already won't be able to access the trio, much like 3 years ago where people who had already done chemo had difficulty obtaining Herceptin. BB
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06-26-2007, 12:48 AM
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#29
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Bev - I am doing herceptin now - you know what, most of the activists in the Herceptin story were not bc sufferers. I am not sure how trials would work - perhaps someone who knows about trials could help with this question?
BUT what I can share is the thoughts of a dear friend of my husband and I (he was our Best Man) - he has had n-h lymphoma for well over 10 years and has doggedly sought out trials and experimental treatments. He says
"The longer I live, the longer I am going to live".
He means, the longer he stays alive, the longer it is likely that better treatments or even a cure will come through the work of the scientists and the more likely it is that he will live even longer. His aim is to just keep going!
So Bev - the more we work together to bring on the treatments - the more likely we will be able to have access to them, not only in trials but after the trials have given us new treatments, when our previous treatments no longer matter unless they threaten to harm us.
Belindax
__________________
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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06-26-2007, 06:45 AM
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#30
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Senior Member
Join Date: May 2006
Posts: 85
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Very cool. Great post. Let's hope it continues to be researched.
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06-28-2007, 01:24 PM
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#31
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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reading over and over
make me fell happy and with hope reading this post everytime I wish we know something more about the same .....how we can help ???
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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06-29-2007, 11:55 AM
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#32
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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more info
the Breast Center at Baylor College of Medicine
<!-- InstanceBeginEditable name="content" --> C. Kent Osborne and Rachel Schiff Laboratory
Welcome
Our laboratory is a team effort between C. Kent Osborne, M.D. a clinical scientist and cell biologist, and Rachel Schiff, Ph.D., a molecular biologist, and is one of several basic/translational research laboratories comprising the Breast Center at Baylor College of Medicine and The Methodist Hospital in the Texas Medical Center in Houston, Texas. Both Drs. Osborne and Schiff have Faculty Appointments in the Department of Medicine and in the Department of Molecular and Cellular Biology. Dr. Osborne is the Director of the Breast Center and he has more than 25 years of experience in translational and clinical research in breast cancer. Dr. Schiff has much experience in molecular and cellular biology of breast cancer and is an expert in exploiting breast cancer preclinical models towards the development of novel approaches of targeted therapies.
The research objective of our laboratory is to understand the molecular mechanisms by which breast cancers become resistant to endocrine therapy and then to develop new treatment strategies to block or overcome this resistance. In this research, we combine molecular/genetic analyses with cell biology to answer important clinically relevant questions using cell culture and animal models that we developed two decades ago, along with newly developed ones. Major interests include the crosstalk that we and others have discovered between growth factor receptor and/or other cellular kinase signaling and estrogen receptor signaling pathways, and the role of ER coactivators and corepressors in the development of hormone therapy resistance. We have shown that growth factor receptor signaling such as that initiated by tyrosine kinase receptors of the EGF family play an important role in hormone therapy resistance and that blockade of these pathways represents a new strategy to prevent it. The ER coactivator AIB1 (SRC3) which is often either amplified and/or overexpressed in breast cancer, and the ER corepressor protein FKHR that is often lost in breast cancer are modulated by growth factor signaling and we believe are key to the resistant phenotype.
Various projects include: 1) determine the mechanisms by which receptor tyrosine and serine/ threonine kinases cause resistance to tamoxifen and other endocrine therapies, 2) investigate whether therapies that target these pathways can overcome resistance, 3) identify the role of AIB1 phosphorylation in ER function and hormone therapy resistance, 4) determine if the ER corepressor FKHR functions as a tumor suppressor gene in breast center, and 5) define molecular profiles in human breast cancer specimens that predict selective hormone therapy resistance and, then, identify new therapeutic targets to reverse it.
For more details, please see the research page.
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__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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08-19-2008, 06:19 PM
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#33
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Senior Member
Join Date: Sep 2005
Posts: 589
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I've been unable to find any trials with this exciting triple combo. Does anyone know why this isn't moving forward faster?
Eric
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08-20-2008, 05:47 AM
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#34
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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I wrote to them about a year ago, they answered that they were thinking about it..
There might be the issue of lvf problem i suppose but yes I agree eric it seems to be taking time. I hope Lani sees this as she may have more answer for us.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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08-20-2008, 12:29 PM
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#35
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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It seems as if the trial is going to be designed only for those who are newly diagnosed.
I wonder whether anyone will do a trial for women with advanced HER2+ bc.
"A clinical study using drug combinations in newly diagnosed patients with HER-2 positive breast cancer will start soon under the direction of physicians at BCM's Breast Center, said Osborne."
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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08-20-2008, 01:37 PM
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#36
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Senior Member
Join Date: Sep 2005
Posts: 589
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That would be very disappointing.
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08-22-2008, 03:17 PM
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#37
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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off trial
Our onc told us she and others were giving Herceptin "off-label" before trial was done for early stage. Perhaps some oncs would be willing to give this trio to those that don't qualify for the trial in the the same manner.
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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08-22-2008, 06:02 PM
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#38
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Lani,
As always big heartfelt thanks on your recent posting.
Now, dear one what can we do to push this forward?
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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08-22-2008, 07:08 PM
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#39
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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TSund and Jean
First TSund--the reason herceptin could be given off-label adjuvantly for bc was that herceptin was already approved for metastatic bc. That is the point of the term "off-label" use--it is use of a drug already approved for a different
indication for another disease/affliction for which it is not yet (or ever) approved.
Jean--I thought the way to move this forward was to help the researchers at Baylor get a hold of specimens and histories of her2+ patinets--especially her2+ER+ patients. When I last spoike up about this at an ASCO poster exhibit
I think it was with the Susan Komen people, they offered me a handout regarding how Komen could help with this and what they were already doing.
It had been many many months since I had heard from/tumor repository" and only about 5% or those who read the original post about how many would donate their specimen and give access to their records responded, causing me feel my efforts were better directed elsewhere.
I have been in touch with the Baylor people (saw them at ASCO and the Era of Hope), pointing out to them some interesting work being done by Jose Baselga's group in Spain(poster at ASCO) on how giving herceptin and tykerb "turbs" up the ADCC immune reaction against her2 and am aware that Mark Slikowski at Genentech has been supplying the samples to the Baselga group for their studies and is cooperating with them.
I also attended THE annual AACR meeting and heard Axel Ullrich, whom they
lauded as the true "inventor" of herceptin and provided with a "lifetime achievement award" explaining that her3 will be the key to curing her2 breast cancer.
I have heard Max Wicha at both AACR and ASCO describe how her 2 regulates the percentage of and invasiveness of cancer stem cells in breast tumors and, in general, asked lots of questions and alluded to the fact that
a repositiory of sample awaits interested researchers if the finances, legalities and logisitics could be worked out.
Max Wicha is starting a multicenter trial with a gamma secretase inhibitor (already FDA approved for Alzheimers I believe) trying to eliminate the cancer stem cells and thus the reucrrences of breast cancer.
I posted earlier an article which unfortunately should some increased cardiotoxicity adding pertuzumab (not FDA approved) to herceptin--I am sure Genentech, which has been on a roll with its products, is hesitant to begin a trial with the indication that there may be increased cardiotoxicity of the combination.
Another problem is that Iressa is approved but only for a VERY narrow indication and it is made by a different drug company than the other two drugs (which are made by Genentech). Genentech also makes an oral EGFR inhibiting TKI, Tarceva. It is very diffcult to get different drug companies to cooperate in a clinical trial.
The best hope would be Genentech--but they are about to be bought out by their majority stockholder, Roche --a much less innovative compnay who spend much less of their income on basic research and have a very different corporate "behavior" it would seem.
I don't know what her2 support as a group can do other than write letters to Roche, should they get their way, urging them not to change the governance or modus operandi of Genentech (but money talks, not letters!)
After attending 7 maor meetings in the last 12 months, I may only attend one more before San Antonio. I will continue to try to find out what is
holding up this trial and get back to your on what might be done to speed it up.
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08-23-2008, 06:27 AM
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#40
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Senior Member
Join Date: Sep 2005
Posts: 589
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re: Roche purchase of Genentech
Lani - I'm very thankful for the time you invest with us. The following is an article discussing the company purchase...
http://www.medicalnewstoday.com/articles/118446.php
Roche said that if it acquired Genentech, it would allow Genentech to maintain its creative independence and that patients would benefit from the acquisition. Barbara Brenner, executive director of Breast Cancer Action, said, "Genentech has actually gone out of its way to engage conversations with the activist community." Brenner added, "We rarely agree, but at least we can talk to them. I have trouble imagining that will continue if Roche owns the company" (Chase, Wall Street Journal, 8/14)
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