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Old 05-04-2014, 07:28 AM   #1
Belinda
Senior Member
 
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
Severe breathlessness - heart/herc. or lungs?

Hi

I haven't posted for ages - but do check in and lurk a bit. Thanks so much for all the info I have gleaned from this site when I have needed it.

This time I have a direct issue that I am looking for advice on. I have checked previous posts to the best of my capability, so sorry if I have missed relevant posts.

Over the past 6 months I have been increasingly breathless, coughing constantly, sometimes with mucous (sometimes bloody) other times a dry hacking cough that occurs together with a panting/gulping and sometimes panic about whether my breath will come back or whether I will pass out.

This has been treated both as symptoms of a nasty mediastinal tumour that I am having chemo for (which seems to have stopped the bleeding at least), and as symptoms of pulmonary fibrosis which is clearly obvious on my ct's, but which has been stable over this time.

Today I had 2 episodes that scared the life out of me - eg I showered (that got me coughing and panting) then came upstairs to get dressed. By the time I got to the top of the stairs I felt like I was breathing deep and fast but I couldn't get my breathing to actually work properly, and my heart felt out of control (I didn't think to check my pulse). I felt like a sea fish flapping on the sand unable to breath, which made things worse because I was scared and panicked. Hubby came and sat on edge of bed with me (I had been pacing) and his nearness, over several minutes, and listening to his calm breathing helped to bring me back "down".

I was wondering if anyone has experienced these symptoms? If chemo is doing its thing on the tumours, and the radiation fibrosis appears stable, then why has my breathing deteriorated so quickly?

For those of you with very low LVEFs that had to take a Herceptin holiday - did you experience any of these sorts of symptoms? Could it be Herceptin causing heart damage ?(which I know would be uncommon going by the literature available) What treatments - apart from abstinence from Vit H - were you offered?

Anyone else with radiation - induced lung damage with these sorts of symptoms? What sort of treatments were you offered?

I am due for another heart check and will ask my oncologist for a referral tomorrow.

Meantime, I am suddenly and quite uncharacteristically quite afraid of being alone, in case some minor exertion causes an episode and no-one is here in case I pass out. Our house used to be a chapel so it is stair heaven - nearly every room is tucked into a space that requires at least 3 steps up into it.

Love and courage to you all

Any thoughts, shared experiences and wisdoms very welcome.
__________________
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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