Symptoms of stage 4 lung cancer - diagnosed 1 month ago

Posted by stramont @stramont, Oct 21, 2023

I have Stage 4 lung cancer and A-Fib. I’ve been blaming SOB, fatigue, cough, balance issues on A-Fib. During tests at Mayo for Cardiac Ablation, a chest x-ray showed mass in lungs. Diagnosis Stage 4 Sept. after CT scan, PET scan, MRI Brain scan, Bronchoscopy Oct. 13. Scheduled consult 10/24 for treatment options. Since diagnosis I now have pressure in back and chest, no energy, shakiness, loss of balance, and loss of voice. I was hoarse 2 days b4 the bronchoscopy but it’s advanced to loss of voice. Is this a natural progression and does treatment relieve symptoms? Any suggestions to restore my voice? Thanks for any insights.

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@sksnow

Hi! I’m Sandra and am going through almost the same thing. Had bronchoscopy biopsy today, so still awaiting results but the pictures were looking pretty bad. I also have SIADH so 😢. Anyway, i saw your post and would love to know how you and your kids are doing. I have the same support group as you. Kids are the best! Thank God for them!

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Hi Sandra @sksnow, welcome to Mayo Connect. Finding lung nodules or masses is always concerning, rightfully so. It's also easy to let your mind run to the worst scenarios. I'm glad that you've had the bronchoscopy, which will determine what the mass consists of. Try to focus on what you know now; that something suspicious was found, and that you should know more soon once the biopsy is resulted. Most nodules are non-cancerous. Expect some coughing for a few days after the bronchoscopy, as the tissues will be irritated.
I admit, I had to look up "SIADH" (https://www.mayoclinic.org/diseases-conditions/hyponatremia/symptoms-causes/syc-20373711). I'm sure it's hard to know if you don't feel well due to the SIADH or if it's an additional issue.
How large was the mass/nodule that they saw on the CT? How are you feeling after the bronchoscopy?

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@lls8000

Hi Sandra @sksnow, welcome to Mayo Connect. Finding lung nodules or masses is always concerning, rightfully so. It's also easy to let your mind run to the worst scenarios. I'm glad that you've had the bronchoscopy, which will determine what the mass consists of. Try to focus on what you know now; that something suspicious was found, and that you should know more soon once the biopsy is resulted. Most nodules are non-cancerous. Expect some coughing for a few days after the bronchoscopy, as the tissues will be irritated.
I admit, I had to look up "SIADH" (https://www.mayoclinic.org/diseases-conditions/hyponatremia/symptoms-causes/syc-20373711). I'm sure it's hard to know if you don't feel well due to the SIADH or if it's an additional issue.
How large was the mass/nodule that they saw on the CT? How are you feeling after the bronchoscopy?

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Very sore, and extremely tired. The mass was only 1.88 cm but is attached to several “extensive” largely swollen lymph nodes. Doc says metastatic. I fear that it will be bad because the SIADH is associated with small cell and bad outcomes. Sheesh I think I really need to stay off of the internet, I only slept two hours last night because my brain was on hyperdrive.

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@sksnow

Very sore, and extremely tired. The mass was only 1.88 cm but is attached to several “extensive” largely swollen lymph nodes. Doc says metastatic. I fear that it will be bad because the SIADH is associated with small cell and bad outcomes. Sheesh I think I really need to stay off of the internet, I only slept two hours last night because my brain was on hyperdrive.

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@sksnow, try to sleep when you can, your body needs it. I know it's hard to put your mind to rest, so take advantage of those naps. The sedation can make me tired for a few days too. I hope your results come back soon. Having a plan and knowing what I'm dealing with are helpful for me to put my mind at ease.

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@sksnow

Very sore, and extremely tired. The mass was only 1.88 cm but is attached to several “extensive” largely swollen lymph nodes. Doc says metastatic. I fear that it will be bad because the SIADH is associated with small cell and bad outcomes. Sheesh I think I really need to stay off of the internet, I only slept two hours last night because my brain was on hyperdrive.

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Hi Sandra @sksnow, welcome to the boring world of SIADH. I've been dealing with it for over three years now. I have non-small cell adenocarcinoma with the EGFR mutation, Exon 19. I take a pill a day, and no recurrence for over 3 years.

How's your blood work? My SIADH caused low sodium levels -- very low at 126. My Oncologist referred me to a Nephrologist (kidney specialist) who restricts me to a maximum of 50 to 60 oz of fluid a day. I do let myself have 1 cup of coffee in the morning and an occasional cocktail in the evening, but I count the ounces. As long as I keep it around 55 oz a day, my sodium level stays around 131. (I'm fortunate to have bloodwork records dating back to before I had cancer which show I've always been on the low side.) I'd had some cramping before, but that's gone away with the fluid restriction.

So there. Now you've read something on the Internet that says SIADH can be no big deal. Personally, I believe the positive news until I'm forced to do otherwise. I'm a lot happier, more active, and more productive this way.

I wish you all the best and a Happy, Healthy New Year!

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@flusshund

Hi Sandra @sksnow, welcome to the boring world of SIADH. I've been dealing with it for over three years now. I have non-small cell adenocarcinoma with the EGFR mutation, Exon 19. I take a pill a day, and no recurrence for over 3 years.

How's your blood work? My SIADH caused low sodium levels -- very low at 126. My Oncologist referred me to a Nephrologist (kidney specialist) who restricts me to a maximum of 50 to 60 oz of fluid a day. I do let myself have 1 cup of coffee in the morning and an occasional cocktail in the evening, but I count the ounces. As long as I keep it around 55 oz a day, my sodium level stays around 131. (I'm fortunate to have bloodwork records dating back to before I had cancer which show I've always been on the low side.) I'd had some cramping before, but that's gone away with the fluid restriction.

So there. Now you've read something on the Internet that says SIADH can be no big deal. Personally, I believe the positive news until I'm forced to do otherwise. I'm a lot happier, more active, and more productive this way.

I wish you all the best and a Happy, Healthy New Year!

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Thanks for the information, I am so lost and confused. My results came back and its SCLC. I as worried about it being that one. I am being fast tracked for treatment and have port surgery scheduled for Tuesday already, brain MRI, and another needle biopsy all within the week. A whirlwind of activity for sure and i am thankful they’re all over it, but also scared to death. My total ignorance about managing my SIADH is a biggie for me. Mine always reads 125 sodium every time i have bloods done. Now I'm only having one cup of coffee and one 20oz Gatorade per day. Im scared to drink anything. Am I dehydrating myself? Guess ill see when i do labs again tuesday. Thanks again for talking with me, it helps alot.

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My sodium started running below normal. It can definitely make me feel weak and lethargic. A kidney dr recommended I take a sodium tablet every morning and keep liquids about 60 oz per day. A nurse gave me sample packets of DripDrop I mix in water to drink when I exercise at the gym. It's an electrolyte mix. Ask your dr if a sodium supplement would be helpful or harmful in your situation. Side note, people who take some medications, ex beta blockers, often have low sodium.

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@jessicamc

My sodium started running below normal. It can definitely make me feel weak and lethargic. A kidney dr recommended I take a sodium tablet every morning and keep liquids about 60 oz per day. A nurse gave me sample packets of DripDrop I mix in water to drink when I exercise at the gym. It's an electrolyte mix. Ask your dr if a sodium supplement would be helpful or harmful in your situation. Side note, people who take some medications, ex beta blockers, often have low sodium.

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I am taking a beta blocker for my newly developed high blood pressure. I always had low BP until I got Covid one year ago this month actually. Been having a time finding something that works that doesn’t end up sending me to ER for bad side effects. So far it’s been Metoprolol ER. But I want it out of my body! I am at a loss as to why my dr tells me to keep taking it even when my sodium is at a steady 125 every time i do labs.

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@sksnow

I am taking a beta blocker for my newly developed high blood pressure. I always had low BP until I got Covid one year ago this month actually. Been having a time finding something that works that doesn’t end up sending me to ER for bad side effects. So far it’s been Metoprolol ER. But I want it out of my body! I am at a loss as to why my dr tells me to keep taking it even when my sodium is at a steady 125 every time i do labs.

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@sksnow, the whirlwind you're going through is standard. I've been giving talks on lung cancer awareness and pre-screening, and have teamed up with a nurse from our local cancer institute. We start with an outline of my journey, and I describe "The Whirlwind" that always follows a cancer diagnosis. It makes sense. Once the doctors know cancer is in there, they want to get rid of it as fast as they can.

Unless you graduated med school, you're not supposed to know what to do. That's why we go to our doctors. Your Oncologist needs to be your friend. Tell them about your concerns and ask his or her advice. Don't wait for your next appointment; call his or her nurse. If you're plagued by questions and don't know your Oncologist nurse's first name, you're not calling often enough. 😉 If you're worried about your sodium level, which IS low, ask if you should get a referral to a Nephrologist.

As to dehydrating yourself, my Nephrologist tells me to "drink to thirst". In other words, don't drink because you think you should; drink when you're thirsty. He says thirst is one of the most powerful human needs. Trust that your body won't let you dehydrate.

Lastly, you can't raise your blood sodium level by taking in more salt. The Mayo Clinic, Cleveland Clinic, Johns Hopkins, my Oncologist, and my Nephrologist all agree on this issue. Low sodium means you're peeing out your salt. At my stage, I can keep my sodium level at 132 even with a cup of coffee in the morning and about 1 qt of water the rest of the day. But when I was 126, I stopped coffee because it made me pee.

I know, firsthand, that what you're going through is hard. But hang in there and keep smiling. Laughter really is the best medicine. Trust your doctors and take everything you read on the Internet with a GIANT grain of salt.

Except for what I write. You should absolutely take everything I write to heart. Lol! 🙂 All the best to you.

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@sksnow

I am taking a beta blocker for my newly developed high blood pressure. I always had low BP until I got Covid one year ago this month actually. Been having a time finding something that works that doesn’t end up sending me to ER for bad side effects. So far it’s been Metoprolol ER. But I want it out of my body! I am at a loss as to why my dr tells me to keep taking it even when my sodium is at a steady 125 every time i do labs.

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I’m 77. Jan 23 was diagnosed with Afib. A cardiologist put me on 50 mg losartan,50 mg metoprolol, and Elequis. I could barely walk thru my house. I also started sleeping issues. The cardiologist said “you are having nightmares. Let’s cut metoprolol to 25 mg.” I didn’t think I was having nightmares but added a sleep app to my cell phone. Sure enough, I was calling for help, moaning in my sleep. Finally he said no more metoprolol. I told my GP and he had never heard of it. Looked it up and said, “yes, it can cause nightmares.” It also causes fatigue. Discuss your symptoms with the Dr. There may be options.

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@jessicamc

I’m 77. Jan 23 was diagnosed with Afib. A cardiologist put me on 50 mg losartan,50 mg metoprolol, and Elequis. I could barely walk thru my house. I also started sleeping issues. The cardiologist said “you are having nightmares. Let’s cut metoprolol to 25 mg.” I didn’t think I was having nightmares but added a sleep app to my cell phone. Sure enough, I was calling for help, moaning in my sleep. Finally he said no more metoprolol. I told my GP and he had never heard of it. Looked it up and said, “yes, it can cause nightmares.” It also causes fatigue. Discuss your symptoms with the Dr. There may be options.

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Yea I had to give metoprolol the axe as well. Made me want to sleep around the clock. And I just felt weird. Can’t explain it.

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