HER2 Support Group Forums - View Single Post - her2 breast cancer cured (when transplanted in mice) using triple targetted therapy

Belinda · 05-08-2007, 05:14 AM

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

05-08-2007, 05:14 AM	#22
Belinda Senior Member Join Date: Jan 2007 Location: Adelaide, South Australia, Australia Posts: 144	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.