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Confused: Lung cancer, pulmonary fibrosis and more

Posted by shamrock5jeg @shamrock5jeg, May 4, 2021

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.

Interested in more discussions like this? Go to the Cancer Support Group.

Karen | @duckduck2020 | Jun 13, 2021
In reply to @loribmt "@duckduck2020 Hi, you’ve been in my thoughts lately. With our last little chat there was concern..." + (show)
@loribmt

@duckduck2020 Hi, you’ve been in my thoughts lately. With our last little chat there was concern with the lingering infection and your chemo hadn’t been resumed because of it. Has there been any improvements with getting information and help? It seemed like your doctors weren’t very forthcoming with information. Time for a second opinion?

I know this past week was the family fishing trip. Were you able to join them? Any good tales of the ‘one that got away’?
Let me know how you’re doing. 😉 Lori

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Thanks Lori
I did get up here and that is where we are right now . Yes I got out a couple of days . My stomach has bothered me some but I have been drinking a lot up here . It is like Ivan hungry but to eat is hard ! I go see my doctor on Tuesday but I donnot see him I see his nurse practioner . I think he had washed his hands of me ! That darn surgeon I feel really screwed things up ! She was me to go into hospice and I donnot feel I am ready yet !
We will see on Tuesday what they say !
My wife says I need to seek a second opinion also but I feel it is too late ! No idea even where to go

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 13, 2021
In reply to @duckduck2020 "Thanks Lori I did get up here and that is where we are right now ...." + (show)
@duckduck2020

Thanks Lori
I did get up here and that is where we are right now . Yes I got out a couple of days . My stomach has bothered me some but I have been drinking a lot up here . It is like Ivan hungry but to eat is hard ! I go see my doctor on Tuesday but I donnot see him I see his nurse practioner . I think he had washed his hands of me ! That darn surgeon I feel really screwed things up ! She was me to go into hospice and I donnot feel I am ready yet !
We will see on Tuesday what they say !
My wife says I need to seek a second opinion also but I feel it is too late ! No idea even where to go

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Yes! Fist pump!! I’m so happy for you and your family to be able to have some quality time together! These past several months have been so stressful and worrisome with your illness and the loss of your brother. So this is wonderful news and little precious moments of normalcy.

I am sorry that you feel written off by your doctor. This is when you need the guidance of an oncologist the most! I’d say something to the NP at your appointment. See if you can’t get some answers! Be assertive if need be because this is your life you’re fighting for. They’re an integral part of your army in this war. And to feel abandoned by your doctors doesn’t feel like they’re on your side.

Are you on Medicare by any chance? If so you don’t need to stick with Thedacare if you want to try another provider such as Green Bay Oncology. They’re connected with Ascension in Appleton. (St Elizabeth’s) Also, a possible consult with Froedert would be a good chance for drug trials with a teaching hospital.

You don’t like sound like you’re ready for hospice and you’ll know IF the time comes. But I can tell you’re a fighter, a hardy Wisconsin guy and not one to let others make the decisions for you. So go with your ‘gut’ on this one…despite the fact they’re a little growly right now.

Clink a couple cold bottles together for me! I still can’t drink any alcohol and it’s been a hot summer…missing my Leinie’s Summer Shandy. Have fun! Lori

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Karen | @duckduck2020 | Jun 13, 2021
In reply to @duckduck2020 "Thank you Lori for your concern" + (show)
@duckduck2020

Thank you Lori for your concern

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I donnot drink aclohol I only drink protein shakes and water Gatorade

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 13, 2021
In reply to @duckduck2020 "I donnot drink aclohol I only drink protein shakes and water Gatorade" + (show)
@duckduck2020

I donnot drink aclohol I only drink protein shakes and water Gatorade

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Ohh my bad! When I read you that you’ve been ‘drinking a lot’ up in vacationland…well, you can imagine where my mind went! ☺️ I was thinking, heck good for you!! Giggle. Gatorade and protein drinking is drinking responsibly. 😉

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 13, 2021
In reply to @duckduck2020 "Thanks Lori I did get up here and that is where we are right now ...." + (show)
@duckduck2020

Thanks Lori
I did get up here and that is where we are right now . Yes I got out a couple of days . My stomach has bothered me some but I have been drinking a lot up here . It is like Ivan hungry but to eat is hard ! I go see my doctor on Tuesday but I donnot see him I see his nurse practioner . I think he had washed his hands of me ! That darn surgeon I feel really screwed things up ! She was me to go into hospice and I donnot feel I am ready yet !
We will see on Tuesday what they say !
My wife says I need to seek a second opinion also but I feel it is too late ! No idea even where to go

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Duckduck, should you wish to contact Mayo Clinic to seek a second opinion, here is the contact information for all 3 campuses http://mayocl.in/1mtmR63

Did your doctor suggest palliative care or hospice? There is a difference. Palliative care may be worth considering.

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1 reply
Karen | @duckduck2020 | Jun 13, 2021
In reply to @colleenyoung "Duckduck, should you wish to contact Mayo Clinic to seek a second opinion, here is the..." + (show)
@colleenyoung

Duckduck, should you wish to contact Mayo Clinic to seek a second opinion, here is the contact information for all 3 campuses http://mayocl.in/1mtmR63

Did your doctor suggest palliative care or hospice? There is a difference. Palliative care may be worth considering.

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What is Palliative care all about ?

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1 reply
Karen | @duckduck2020 | Jun 13, 2021

I do believe his liver is growing big tine because his eyes are starting to get yellow

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 14, 2021
In reply to @duckduck2020 "What is Palliative care all about ?" + (show)
@duckduck2020

What is Palliative care all about ?

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@duckduck2020
Do you have a case manager from your insurance company or a social worker from the oncology center who’s been working with you? It seems you’re really not getting the assistance you need throughout this journey.
You’re not ready for hospice but palliative care could be a good alternative for you. When you have your visit with the NP this week, talk to her about the possibility. Below is an excerpt from the Mayo Clinic site:

“Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. Palliative care teams aim to improve the quality of life for both patients and their families. This form of care is offered alongside curative or other treatments you may be receiving.

Palliative care is provided by a team of doctors, nurses and other specially trained people. They work with you, your family and your other doctors to provide an extra layer of support that complements your ongoing care.”
https://www.mayoclinic.org/diseases-conditions/breast-cancer/expert-answers/palliative-care/faq-20058051
https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 22, 2021
In reply to @duckduck2020 "I do believe his liver is growing big tine because his eyes are starting to get..." + (show)
@duckduck2020

I do believe his liver is growing big tine because his eyes are starting to get yellow

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@duckduck2020 Hi, haven’t heard anything from you for a while and wondering how you’re feeling. I hope everything is ok.
Thinking of you, Lori

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