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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Vaccine Trial
Hi everyone
I am in Australia - but keen to find out more about vaccine trials going on in the US. My brother works for Qantas so I can travel quite cheaply and regularly to the States if I can get into a trial. So...any info on trials that you are particpating in, contact details, whether they are still recruiting, and Phase 1 and Phase 2 studies that have been completed and what they show...ie just about any info would help. Also, our hospitals have accommodation (often in a nearby hostel or motel) for people travelling long distances for treatment - do US hospitals have this sort of service?
Any advice would be received, and just your thoughts on whether this would be possible/viable/worthwhile.
There are no trials in Australia, and none on the horizon as far as I can tell.
I wanna try ANYTHING to be around for my wee girl and husband! And just to keep enjoying this precious beautiful life.
Also - An SA company is developing a breakthrough treatment for chemo-induced mucosistis, and trialling this in several hospitals. I know one of the company directors and if I get mucositis he's offerred to get some for me to try. Will let you know how it goes. So far I have only one small mouth ulcer and it's stable. Let's see what Chemo II tomorrow brings!
All the best - Belindax
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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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