Confused: Lung cancer, pulmonary fibrosis and more

Posted by shamrock5jeg @shamrock5jeg, May 4 1:20pm

New to this forum. Actually, never tried any type of forum so I really don't know what I'm doing. Anyhow, after reading some of the posts I guess I am not so bad off. I have lung cancer in my right lung, pulmonary fibrosis, peripheral neuropathy, chronic pancreatitis and just developed shingles last week. Am treating skin cancer on my forehead with fluorouracil cream. Need more radiation for Basel cell on my neck. Left lung cancer was treated with SBRT and is "cured".Right lung is not being treated due to the fibrosis. Still function pretty good, Only take 4 meds. Walking is the biggest problem. Want to dance again, walk, climb stairs, drive a stick shift. Want my legs Back! Sorry I rambled on. My heart goes out the others I read about. Wish they could solve all the problems, it hurts to me to read their stories and makes mine so trivial.

Hello @shamrock5jeg and welcome to Mayo Clinic Connect. This is a forum for and about patients who can encourage and support each other through our journeys with health problems. I can certainly understand how confusing multiple medical problems can be. It would be much easier to deal with just one problem at a time.

I would like to connect you with some others on Connect who share some of the same health problems that you have.

@merpreb is a long-time lung cancer survivor and I'm sure she will invite you to her discussion group. Also, @johnbishop has had neuropathy for many years and will most likely help you to find others in your situation.

Here is a Mayo Connect discussion on pulmonary fibrosis,
https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/
You mention at the end of your post that walking is a problem for you. Is it related to neuropathy or to shortness of breath caused by lung problems?

REPLY

shamrock5jeg- Welcome to Mayo Clinic Connect. It's nice to meet you. You did very well for your first time on a forum. You also picked one that is special and different from any other forum as we are patients sharing our stories and offering support. We are not medical professionals. I'm the Mentor for the lung cancer group at Connect and I hear you loud and clear wanting to dance again! I actually did a few years back.

You have a lot going on at once. There's nothing trivial about cancer and certainly not lung cancer. Our lung's primary function is to take good air in and get rid of H2o. Disease, cancer, and chemicals, to name a few can damage and alter how we do this. Do you have any idea about the origins of your pulmonary fibrosis?

There are two types: The most common type of PF is IPF, which stands for idiopathic pulmonary fibrosis. This means this type of PF has no known cause. Most IPF patients first start noticing symptoms between the ages of 50 and 70 years old. It is more common in men, but the number of cases of IPF in women is on the rise.

Some cases of PF are caused by autoimmune diseases like rheumatoid arthritis, scleroderma, or Sjogren's syndrome. Certain viral infections and gastroesophageal reflux disease (GERD) are also risk factors for PF. GERD is a condition in which acid from your stomach backs up into your throat. Some people who have GERD may breathe in tiny drops of acid from their stomachs, which may injure the lungs.

I can understand why SBRT wouldn't be used for your right lung, there is always more lung damage. It's the nature of the beast. I've had it done twice, once to each lung. What kind of treatment is planned for your right lung?

I'm going to ask @colleenyoung to move this to the Lung Cancer group where you can meet other people who have lung cancer too. Do you know what type of lung cancer you have?

Merry

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@hopeful33250

Hello @shamrock5jeg and welcome to Mayo Clinic Connect. This is a forum for and about patients who can encourage and support each other through our journeys with health problems. I can certainly understand how confusing multiple medical problems can be. It would be much easier to deal with just one problem at a time.

I would like to connect you with some others on Connect who share some of the same health problems that you have.

@merpreb is a long-time lung cancer survivor and I'm sure she will invite you to her discussion group. Also, @johnbishop has had neuropathy for many years and will most likely help you to find others in your situation.

Here is a Mayo Connect discussion on pulmonary fibrosis,
https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/
You mention at the end of your post that walking is a problem for you. Is it related to neuropathy or to shortness of breath caused by lung problems?

Jump to this post

Thanks@hopeful33250. Shortness of breath and balance are the major problems walking. My cane helps.

REPLY
@merpreb

shamrock5jeg- Welcome to Mayo Clinic Connect. It's nice to meet you. You did very well for your first time on a forum. You also picked one that is special and different from any other forum as we are patients sharing our stories and offering support. We are not medical professionals. I'm the Mentor for the lung cancer group at Connect and I hear you loud and clear wanting to dance again! I actually did a few years back.

You have a lot going on at once. There's nothing trivial about cancer and certainly not lung cancer. Our lung's primary function is to take good air in and get rid of H2o. Disease, cancer, and chemicals, to name a few can damage and alter how we do this. Do you have any idea about the origins of your pulmonary fibrosis?

There are two types: The most common type of PF is IPF, which stands for idiopathic pulmonary fibrosis. This means this type of PF has no known cause. Most IPF patients first start noticing symptoms between the ages of 50 and 70 years old. It is more common in men, but the number of cases of IPF in women is on the rise.

Some cases of PF are caused by autoimmune diseases like rheumatoid arthritis, scleroderma, or Sjogren's syndrome. Certain viral infections and gastroesophageal reflux disease (GERD) are also risk factors for PF. GERD is a condition in which acid from your stomach backs up into your throat. Some people who have GERD may breathe in tiny drops of acid from their stomachs, which may injure the lungs.

I can understand why SBRT wouldn't be used for your right lung, there is always more lung damage. It's the nature of the beast. I've had it done twice, once to each lung. What kind of treatment is planned for your right lung?

I'm going to ask @colleenyoung to move this to the Lung Cancer group where you can meet other people who have lung cancer too. Do you know what type of lung cancer you have?

Merry

Jump to this post

@merpreb
The fibrosis is idiopathic. The lung cancer is nsc. No treatment planned for the rt lung due to several factors.The fibrosis will get me before the cancer. Just gonna have fun while I can. Live the Florida lifestyle!

REPLY
@merpreb

shamrock5jeg- Welcome to Mayo Clinic Connect. It's nice to meet you. You did very well for your first time on a forum. You also picked one that is special and different from any other forum as we are patients sharing our stories and offering support. We are not medical professionals. I'm the Mentor for the lung cancer group at Connect and I hear you loud and clear wanting to dance again! I actually did a few years back.

You have a lot going on at once. There's nothing trivial about cancer and certainly not lung cancer. Our lung's primary function is to take good air in and get rid of H2o. Disease, cancer, and chemicals, to name a few can damage and alter how we do this. Do you have any idea about the origins of your pulmonary fibrosis?

There are two types: The most common type of PF is IPF, which stands for idiopathic pulmonary fibrosis. This means this type of PF has no known cause. Most IPF patients first start noticing symptoms between the ages of 50 and 70 years old. It is more common in men, but the number of cases of IPF in women is on the rise.

Some cases of PF are caused by autoimmune diseases like rheumatoid arthritis, scleroderma, or Sjogren's syndrome. Certain viral infections and gastroesophageal reflux disease (GERD) are also risk factors for PF. GERD is a condition in which acid from your stomach backs up into your throat. Some people who have GERD may breathe in tiny drops of acid from their stomachs, which may injure the lungs.

I can understand why SBRT wouldn't be used for your right lung, there is always more lung damage. It's the nature of the beast. I've had it done twice, once to each lung. What kind of treatment is planned for your right lung?

I'm going to ask @colleenyoung to move this to the Lung Cancer group where you can meet other people who have lung cancer too. Do you know what type of lung cancer you have?

Merry

Jump to this post

@merpreb One additional note. Lost 2 daughters and my wife, drank too much after my wife passed away, thus the pancreatitis. No one else to blame. 64 yrs of marriage gone in a month.. Brain cancer is horrible.

REPLY
@shamrock5jeg

@merpreb One additional note. Lost 2 daughters and my wife, drank too much after my wife passed away, thus the pancreatitis. No one else to blame. 64 yrs of marriage gone in a month.. Brain cancer is horrible.

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This is very sad, indeed. Both for them and you. do you also have brain cancer? Are you in pain? Is hospice with you?

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@shamrock5jeg

Thanks@hopeful33250. Shortness of breath and balance are the major problems walking. My cane helps.

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@shamrock5jeg

I admire your Florida spirit! Have had the benefit of physical therapy as well as pulmonary therapy?

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@hopeful33250 Have a great pulmonologist. Keeping me alive. Nothing else has helped at all. Physical therapy was a total waste. Thinking about going back to the gym and working out on my own.

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@shamrock5jeg

@hopeful33250 Have a great pulmonologist. Keeping me alive. Nothing else has helped at all. Physical therapy was a total waste. Thinking about going back to the gym and working out on my own.

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@shamrock5jeg – WHy not a dancing class?

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@merpreb

This is very sad, indeed. Both for them and you. do you also have brain cancer? Are you in pain? Is hospice with you?

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I only have lung cancer and no hospice. @merprep I live alone in a house that is too big on too much land. And yes, I have pain. Before my 2 daughters and my wife all passed away they suffered, my pain is nothing compared to theirs.

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@merpreb

@shamrock5jeg – WHy not a dancing class?

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Great idea! Need to check around. Need to say thanks to all. Been a help already.

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@shamrock5jeg

I only have lung cancer and no hospice. @merprep I live alone in a house that is too big on too much land. And yes, I have pain. Before my 2 daughters and my wife all passed away they suffered, my pain is nothing compared to theirs.

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Oh, dear. I didn't realize that you meant that your daughters had died also. I suspected but wasn't sure. I am so so sorry for this loss of yours. Your grief must have felt horrendous at the time. And I'm sure that it's a weight that you still carry–too much for any man. You mentioned I think, that you took 4 medicines. Do they help with your breathing?

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