Fast decline in respiratory capacity

[bar80]

Hello everyone. I have been following this forum for years, since my DX in 2020. But I've always been very reserved on the internet, and I ended up never posting anything.

More than answering my questions, which were many throughout my treatment, I come here whenever I need to cheer up, as I spend hours reading posts from those who have faced what we face and won their battles. Long story short, since my DX, I have gone through almost all available treatments. If that metric that 10,000 hours of practice makes you an expert on a subject is correct, I'm almost there when it comes to my experience with chemotherapy and other therapies - be them alternative or not. I've always tried to treat my ilness as a parallel activity, trying my best not to think about it. For years, when I felt down, I felt deep in my heart that the harsh times I had were solely because of the treatment, and not because of the tumors.

However, since October, I have been experiencing a sharp decline in performance: a persistent cough (this week, for the first time, I coughed up blood) and a considerable decrease in respiratory capacity. My blood tests have always been perfect – next week I will know how is my current CEA level - last I checked it was 4.7. If it were not for the lung nodules which insist in not stop growing, I would say that I am in good condition. I don't look sick at all, at least this is what I hear from my colleagues and family.

When I received the diagnosis four years ago, I asked God for10 years more years– my daughter was 8 years old then and I only asked to see her grow up until she was 18 and become an adult. From time to time I see that I asked for too much, and I am always negotiating with HIM an adjustment within what I think HE considers possible. My latest request is that I am given at least two more years. I am totally not afraid of dying, but I am afraid of leaving my daughter without her dad...

Has anyone here experienced a rapid decline in quality of life only to recover afterwards? Should I keep my request for 2 more years?

[zephyr]

Not the same but ... a few months ago, I started having some very troublesome breathing issues. I went from easily walking 2-3 miles at a time to barely being able to walk a block without having to stop to catch my breath. On top of that, I started having chest and back pain, and pain in my left arm. The arm pain spooked me but I'd had a recent shoulder injury so it was easier to discount that - but the breathing, chest, and neck pain was very concerning, to say the least. I have several lung mets so, of course, I assumed the cancer had exploded and this was the early stage of decline. I was doomed. Well, I was wrong, wrong, wrong. The cancer had not exploded; to the contrary, my next scan was filled with "stable" and "unchanged." In my case, my symptoms were caused by a new food allergy and a combination of high humidity and dust that triggered some asthma. Once those issues were addressed, no more symptoms.

Shortly after I was diagnosed, a dear friend gave me a piece of advice: don't get ahead of the data. My experience a few months ago was a reminder of that.

[Pagola44]

Not the same but ... a few months ago, I started having some very troublesome breathing issues. I went from easily walking 2-3 miles at a time to barely being able to walk a block without having to stop to catch my breath. On top of that, I started having chest and back pain, and pain in my left arm. The arm pain spooked me but I'd had a recent shoulder injury so it was easier to discount that - but the breathing, chest, and neck pain was very concerning, to say the least. I have several lung mets so, of course, I assumed the cancer had exploded and this was the early stage of decline. I was doomed. Well, I was wrong, wrong, wrong. The cancer had not exploded; to the contrary, my next scan was filled with "stable" and "unchanged." In my case, my symptoms were caused by a new food allergy and a combination of high humidity and dust that triggered some asthma. Once those issues were addressed, no more symptoms.

Shortly after I was diagnosed, a dear friend gave me a piece of advice: don't get ahead of the data. My experience a few months ago was a reminder of that.

Good advice,

Just a few months ago i was freaking out because I had a "tickly" chest and constant cough, it has now gone away and I believe it was just a common chest infection or something.

[beach sunrise]

Don't let your worry get ahead...When was your last scan? How fast have the nodules been growing time wise?

[utahgal7]

bar80,

Solid advice has been given thus far. I just wanted to add a few things. First, nobody knows how much time we have left. You could live several more years or you could be hit by a car tomorrow (I hope not!). Instead of worrying about how much time you have left, I would focus on the PRESENT. That way you can spend the time wisely with your daughter and make precious memories with her that will last a lifetime. That is what matters, right??? I know you are carrying a huge burden. Have you considered talking to a therapist or a counselor? I'm a huge proponent of therapy. I think it would be helpful to you to talk to someone about your thoughts and feelings.

Good luck to you and keep us updated,

Paige