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.

Re: Severe breathlessness - heart/herc. or lungs?
 

I have no experience with this except shortness of breath from kadcyla and then switched chemo. Can't give any advice but sending support. Do you meditate? It sounds like something calming may help. Sending hugs and hopes for some answers soon.
Cathy

Re: Severe breathlessness - heart/herc. or lungs?
 

Thanks Cat for your response. I only have very basic meditation skills - which helped I think when hubby (Mike) was with me, just focussing on his calm, regular breathing helped. I have been thinking about also asking the oncologist for something like Ativan, which the nurses give some chemo patients to help calm them, seems to work within a few minutes.
I am seeing him today which is good timing.
Bx

Re: Severe breathlessness - heart/herc. or lungs?
 

Update...I had my onc appointment today, and was scheduled for Herc and Carboplatin. They took one look at me and hooked up every available measuring device...O2, pulse, bp, ecg, ...the curtains were drawn, the Critical Care team called, and hey presto! I am in the Critical Care (IC) Unit with my own personal (and wonderful) nurse, having oxygen therapy.

So many tests - bedside echo, ultrasound, ct, xrays, lots of blood tests, injections,,,,,,,

The Carbo and Herc is not working on one particular tumour which has now compressed my right bronchus to the point where all 3 lobes have collapsed, causing the increased coughing, Soaring BPs, Heart rate 140-160 bpm, leading to scared crazy breathless woman .

Visited by pulomologist this evening, stent and surgery unlikely to help, going to get another procedure to look more closely and asses possible local solutions.

Onc checking new chemo options, and checking with rads onc re whether the situation now means rads is a feasible option.

Meanwhile I have had a busy day and with what's scheduled I have to be here until lungs stabilise, at least 2 nights.

I feel so lucky to have this competent, professional and warm team of people so readily available to help me, (sigh of relief and gratitude).

Bx

Re: Severe breathlessness - heart/herc. or lungs?
 

I am so glad you have found some support and you sound like you feel at least a little more comfortable. Hopefully now you can get treatment that will be more tolerated and work for you. Hugs
Cathy

Re: Severe breathlessness - heart/herc. or lungs?
 

How frightening for you! I'm so happy you got such a swift and efficient response from your team. I hope they put together an awesome plan to get you back in prime shape soon! I will be praying for you Belinda...

Re: Severe breathlessness - heart/herc. or lungs?
 

Belinda what a scary experience you have had. I am so glad that you have a great team helping you through this. The best of luck at getting you better. Prayers to you.

Re: Severe breathlessness - heart/herc. or lungs?
 

Wow, so grateful that you are in such good hands. I was about to respond to your original post about herceptin, but then I realised you had found the answer to your question. Thanks for updating us, and praying that you find a solution to your current challenge. Sending healing thoughts and positive energy.

Re: Severe breathlessness - heart/herc. or lungs?
 

Count me in for my energy sending and support too, Belinda. What a scary experience. So glad you have such a knowledgeable and supportive health team. Please stay in touch and let us know how you're doing.

CA

Re: Severe breathlessness - heart/herc. or lungs?
 

It sounds as if you have a good team behind you, Belinda. After such frightening sensations, it must be a relief. I hope you can get those symptoms under control and can start on a new treatment regime soon.
Sending best wishes from not so far away.....Pam

Re: Severe breathlessness - heart/herc. or lungs?
 

Hi Belinda, You are not alone, me too have experiences shortness of breath and a nasty cough, things are a little better- not the breathing part, but the cough is almost 90% gone which is a relieve. Also, I have a tumor on the rt lung, - I was on chemo break, my choice- and probably that caused the tumor to grow to this level-- have no regrets, I want to enjoy my life and not be tied to a chair for long
periods of time. I love being outdoors, so there you go. We all going to go one day - I prefer to go on my terms, anyway when you get really sick the doctor just will give you a nice combo to put you at ease, you sleep and bye bye.

Hope you don't find this post too blunt, please read my signature then you can judge me. I'm a strong woman -- sometimes I do cry, is good for the soul- but for the most part, I have dealt with this on my own. It feels good!

Sending you hugs and positive vibes from America.

Take care and please keep us posted. Adriana

Re: Severe breathlessness - heart/herc. or lungs?
 

Belinda,

Glad the situation is now under control.

The fact that your husband's sitting next to you had calmed you down made me think that part of your symptoms could be caused by a panic attack. When I had an episode like that 24 years ago, a glass of water and the removal of the cause of anxiety instantly 'cured'/stopped it!

Sending you good vibes.

Re: Severe breathlessness - heart/herc. or lungs?
 

Belinda,

Any update? This is all quite alarming. I'm so sorry you're going through this. Sending prayers. . . .

Re: Severe breathlessness - heart/herc. or lungs?
 

Belinda,

How are you doing now.

Is everything ok. Please send us a line.

Adriana

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

Re: Severe breathlessness - heart/herc. or lungs?
 

Dear Belinda,

I'm so sorry to hear all of this. I also apologize for not responding sooner.

Any news? How are things now?

Prayers,

Re: Severe breathlessness - heart/herc. or lungs?
 

Any updates (on yourself and the TDM1 -Kadcyla- availability), Belinda?

Re: Severe breathlessness - heart/herc. or lungs?
 

Sorry to take so long to reply back. Well, having tried abraxane again with little success, we finally decided to go down the tdm1 route. My mets kept trying to close my airways, so far thi year I've had 8 laser bronchoscopies to clear tumour out. I started tdm1 8 weeks ago ( total cost for 3 doses AUD $15k ). 6 days ago I just woke up feeling great, it seemed as sudden as that. Although really i had been feeling slightly better over the previous 3 days. I had been on O2 24/7, and I haven't had to use it since last Saturday!

My last bronchoscope (4 wks ago) showed the tumour had slowed and less had to be removed than usual. 2 weeks ago I needed a nurse to help me shower, could not get my own food and drink, vomited and got tachi and dizzy if I moved too fast or far.....today I moved furniture, made a cover for my dressmaker dummy, cooked, sorted a wardrobe.....all with a few minutes break to get o2 up and pulse down.

l SO hope that tdm1 keeps working for me. It seems it works well for a few months for many, but the cancer soon becomes resistant.

Health and happiness to us all. Bxxxxxxxx

Re: Severe breathlessness - heart/herc. or lungs?
 

That is wonderful news, Belinda! I hope so too, thanks for posting!

Carol Ann

Re: Severe breathlessness - heart/herc. or lungs?
 

Belinda,

What a huge relief! I'm so happy to hear this.

TDM-1 has been very, very effective for some people, with lasting results. Several folks on the board have been NED for an extended period of time after TDM-1. I hope you're one of those people!

Keep us posted.