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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Re: Severe breathlessness - heart/herc. or lungs?
Hello wonderful women. I am so sorrynot to have logged in and posted an update. It's been a challenging few months. The collapsed lung in May had me in hospital for a week, then home with O2, followed by 2 rounds of laser bronchoscopy to remove tumours blocking my airways (the cause of all the coughing, breathlessness and lung collapse). Changed chemo to abraxane/herceptin, hoping it would work as well as it did for me jn 2011.
I july spent another week in hospital, triggerred again by severe breathlessness and at the encouragement of my pal care team. Turns out to have been a severe infection or 2, likely kidney infection as well as chest infection.
Had a couple of good weeks, then MORE coughing and breathing problems. Had a fourth laser bronchoscope yesterday. They removed "lots of tumour tissue" and have booked me for yet another in 2 weeks as there was more that they couldn't safely remove yesterday.
So my anxiety levels have escalated because all of that growth has happenned while I have been on abraxane and herceptin. I feel like I am running out of options. I have signed up anyway for the Roche TDM1 compassionate access program, which for the first 3 months will cost about 14k. But the program was due to end Aug 31 (now Oct), and there is still no sign our govt will support it getting public funding.
Just trying to keep air in my lungs and put one foot in front of the other. Bxxxxxxxxxx
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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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