Fast decline in respiratory capacity

Please feel free to read, share your thoughts, your stories and connect with others!
bar80
Posts: 1
Joined: Tue Dec 22, 2020 1:08 pm
Facebook Username: bruno.rodrigues.5817

Fast decline in respiratory capacity

Postby bar80 » Wed Nov 27, 2024 6:54 am

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?
44, M, Brazil
6/20: CT: rectal mass w/ liver & lungs nodules
6/20: Rectosigmoidectomy - positive adenocarcinoma.
6/20: FOLFOX
8/20: Hepatic metastasectomy.
12/20: FOLFOX.
1/21: Single liver lesion, radioablation.
4/21: FOLFIRI + panitumumab w/PR in lung lesions
7/21: Capecitabine + Avastin
5/22: mFOLFOX6 + Avastin (+ OncoTherad “OT” nanoimmunotherapy) - stable
9/22: Lonsurf + Avastin (+OT)
1/23: FOLFIRI + Avastin (+OT)
1/24: Irinotecan + cetuximab (+OT)
10/24-now: FOLFOX + Avastin (+OT)

zephyr
Posts: 399
Joined: Thu Aug 18, 2016 7:31 am

Re: Fast decline in respiratory capacity

Postby zephyr » Wed Nov 27, 2024 5:25 pm

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.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Fast decline in respiratory capacity

Postby Pagola44 » Thu Nov 28, 2024 3:09 am

zephyr wrote: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.
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

User avatar
beach sunrise
Posts: 1149
Joined: Thu Mar 05, 2020 7:14 pm

Re: Fast decline in respiratory capacity

Postby beach sunrise » Thu Nov 28, 2024 9:41 pm

Don't let your worry get ahead...When was your last scan? How fast have the nodules been growing time wise?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

utahgal7
Posts: 254
Joined: Fri Sep 11, 2020 12:04 pm

Re: Fast decline in respiratory capacity

Postby utahgal7 » Fri Nov 29, 2024 8:12 am

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
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 9 guests