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

Belinda · 06-25-2007, 07:56 PM

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

06-25-2007, 07:56 PM	#27
Belinda Senior Member Join Date: Jan 2007 Location: Adelaide, South Australia, Australia Posts: 144	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.