Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@hopeful33250

Hello @reibur1951

So good to read your post and update. You continue to be a very loyal friend and I pray, as does @alamogal635, that your car and finances hold up for these upcoming May treatments.

You are a good planner and definitely organized. I get the feeling that your friend's family has not thanked you for your help for this cancer survivor so on their behalf, let me say thank-you for your help.

You are providing more than transportation, you are providing hope! We need more people in our world to provide this essential element of hope.

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Hoopefull33250 … Hello Teresa, Finally I found how to get back on here. Hopefully Colleen shared with you my email to her. I have been going through several things and it has not been fun… Last Wednesday I started coughing and coughing up thick mucus with dark blood. So called my doc and set up a cat scan which will be Wednesday and see my oncologist and radiation doc on Friday. Last Saturday was one year seance my husband passed. It has been a very emotional year. But things are slowly getting better. It just takes ime. I also have been losing some weight which I don't need to do. Will check that when I see the doc's. I have been working on my book, am getting close to having it published. It will be just for the family, but we shall see how that goes…. Will be back to keep you all in the know! Nancy"shortshot"

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@shortshot80

Hoopefull33250 … Hello Teresa, Finally I found how to get back on here. Hopefully Colleen shared with you my email to her. I have been going through several things and it has not been fun… Last Wednesday I started coughing and coughing up thick mucus with dark blood. So called my doc and set up a cat scan which will be Wednesday and see my oncologist and radiation doc on Friday. Last Saturday was one year seance my husband passed. It has been a very emotional year. But things are slowly getting better. It just takes ime. I also have been losing some weight which I don't need to do. Will check that when I see the doc's. I have been working on my book, am getting close to having it published. It will be just for the family, but we shall see how that goes…. Will be back to keep you all in the know! Nancy"shortshot"

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@shortshot80 Hi Nancy,

I'm so happy that you are with us on Connect again. Yes, Colleen did share with me that you were having some problems and had broken your hip. I'm glad that you are back home now.

The one year anniversary of your husband's death must have been difficult for you. I'm glad to hear that you are slowly getting better. You are an amazing person with a strong and determined spirit!

I was thinking about your book and wondering if you were finishing it yet. I'm sure your family will be so happy once it is published! Is it a history of your family and your faith?

I hope your CAT results are good on Wednesday.

I look forward to hearing from you again soon! Blessings to you.

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@hopeful33250

@shortshot80 Hi Nancy,

I'm so happy that you are with us on Connect again. Yes, Colleen did share with me that you were having some problems and had broken your hip. I'm glad that you are back home now.

The one year anniversary of your husband's death must have been difficult for you. I'm glad to hear that you are slowly getting better. You are an amazing person with a strong and determined spirit!

I was thinking about your book and wondering if you were finishing it yet. I'm sure your family will be so happy once it is published! Is it a history of your family and your faith?

I hope your CAT results are good on Wednesday.

I look forward to hearing from you again soon! Blessings to you.

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@shortshot80 – Good morning. I'm a Mentor for Mayo, mainly for Lung Cancer/Health. I also dig into depression and anxiety too. I am a 22 year survivor of lung cancer. I have Multifocal Adenocarcinoma of the lungs. I've had chemo and SBRT.
I've had 22 years and many more CT scans.
I have read some of your history and am very glad that you are back here with us. Losing a husband is something that I can't imagine. You've had a very rough time with losses and different cancers. Being treated for 2 different types of cancer must be incredibly draining. I don't know how you've done it.
I started a blog a year ago about my personal journey. This helped me with fighting my way out of PTSD. So far I've done ok with it. I'd like to share it with you. https://my20yearscancer.com/.
I know that your book is about your family. In all of the grieving that you've had to do on top of your husband's passing have you found that your writing has been cathartic?
Best of luck with your new CT scan tomorrow and your other tests.

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@hopeful33250

@shortshot80 Hi Nancy,

I'm so happy that you are with us on Connect again. Yes, Colleen did share with me that you were having some problems and had broken your hip. I'm glad that you are back home now.

The one year anniversary of your husband's death must have been difficult for you. I'm glad to hear that you are slowly getting better. You are an amazing person with a strong and determined spirit!

I was thinking about your book and wondering if you were finishing it yet. I'm sure your family will be so happy once it is published! Is it a history of your family and your faith?

I hope your CAT results are good on Wednesday.

I look forward to hearing from you again soon! Blessings to you.

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Tereasa/ (Nancy-shortshot) Good Morning all, CT results tomorrow and I will let you know. My book is in the last stages before printing. I just have to get it in "the right time line" When I was talking and my friend typed, I did not think of the year and I just put things in the right order. So am working on that now. Memories are at times all mixed up. Anyway it's a start. I want to get this done. It is a beautiful day today and my youngest son is out in the ocean fishing. He fished yesterday also and we had fresh cod for dinner last night. He also put crab pots out yesterday so hopefully we will have a crab salad tonight too. Also with fresh strawberries and sliced tomato will make a great dinner. Don't know if you remember me talking of my granddaughter's husband with the horrible rare cancer he had in his sinus' cavity, anyway he had gone through a rough series of chemo and everything, anyway he is cured and doing well. They are trying to have a baby. They may have to use the frozen sperm. Not sure yet. Also the cancer was behind his left eye and now his vision is coming back, praise God on that and being cured of the cancer. More later….. Nancy

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My name is Wally and I recently was diagnosed with Adenocarcinoma in both lungs. It has not metastasized and my first meeting with a oncologist is May 16. What are some questions I can ask?

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@wally1940– Welcome to Mayo Connect. This must have been devastating to hear. It was for me. I am a 22yr lung survivor. My lung cancer is called Multifocal adenocarcinoma of the lung. I also get more than one cancer at a time. Mine begin as ground glass- nodules actually look like ground glass on a CT scan.
What tests have you had so far that this diagnosis has been made? This will help guide me in helping answer your excellent question.

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@shortshot80

Tereasa/ (Nancy-shortshot) Good Morning all, CT results tomorrow and I will let you know. My book is in the last stages before printing. I just have to get it in "the right time line" When I was talking and my friend typed, I did not think of the year and I just put things in the right order. So am working on that now. Memories are at times all mixed up. Anyway it's a start. I want to get this done. It is a beautiful day today and my youngest son is out in the ocean fishing. He fished yesterday also and we had fresh cod for dinner last night. He also put crab pots out yesterday so hopefully we will have a crab salad tonight too. Also with fresh strawberries and sliced tomato will make a great dinner. Don't know if you remember me talking of my granddaughter's husband with the horrible rare cancer he had in his sinus' cavity, anyway he had gone through a rough series of chemo and everything, anyway he is cured and doing well. They are trying to have a baby. They may have to use the frozen sperm. Not sure yet. Also the cancer was behind his left eye and now his vision is coming back, praise God on that and being cured of the cancer. More later….. Nancy

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@shortshot80 Hi Nancy:

I will be waiting to hear from you after you get the CT scan results. I hope that all is stable. How nice that you can have fresh fish and crab for meals, I envy you! How far do you live from the ocean?

How wonderful that your granddaughter's husband is doing so well. Rare cancers can be difficult to treat so it sounds like he had a good medical team. I do hope that his vision continues to return.

I'm sure you will have a wonderful dinner, you have always sounded like a remarkable cook!

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@wally1940 – Wow…So sorry for your diagnosis!
I am not a doctor and not a cancer patient…but I have been a caregiver for my wife who had two adenocarcinomas removed surgially in 2015 (two lobes)…Non Small Cell Lung Cancer.
She is doing very well today, but not until going through some unusual circumstances.
Some of the key things I think are important to unerstand:
1) Is this Non Small Cell Lung Caner or Small Cell?
2) What are the size of the tumors
3) Are you a candidate for surgery?
4) If so, is a VATS procedure possible? Much quicker recovery than open chest…
If not, what type of treatment is available…radiation, chemo, etc?
5) Have you had Biopsies? If so, what type of mutation is it?
6) Is a Molecular study in order to identify exactly what mutation it is?
In my wife's case, they did not do this until after she did not respond to the typical NSCLC immunotherapy (Opdivo) and her cancer advanced from stage IIIa to stage IV. They then did the Molecular study and determined her's in a Erbb2 mutation.
7) Where is the best Cancer Center? Not necessarily the nearest, but the best!
Best of luck! Keep asking questions!!!

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@wally1940 – I should have included this link in my earlier post…a great web site to try to get answers!
https://www.cancer.org/cancer/lung-cancer.html

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@burrkay

@wally1940 – Wow…So sorry for your diagnosis!
I am not a doctor and not a cancer patient…but I have been a caregiver for my wife who had two adenocarcinomas removed surgially in 2015 (two lobes)…Non Small Cell Lung Cancer.
She is doing very well today, but not until going through some unusual circumstances.
Some of the key things I think are important to unerstand:
1) Is this Non Small Cell Lung Caner or Small Cell?
2) What are the size of the tumors
3) Are you a candidate for surgery?
4) If so, is a VATS procedure possible? Much quicker recovery than open chest…
If not, what type of treatment is available…radiation, chemo, etc?
5) Have you had Biopsies? If so, what type of mutation is it?
6) Is a Molecular study in order to identify exactly what mutation it is?
In my wife's case, they did not do this until after she did not respond to the typical NSCLC immunotherapy (Opdivo) and her cancer advanced from stage IIIa to stage IV. They then did the Molecular study and determined her's in a Erbb2 mutation.
7) Where is the best Cancer Center? Not necessarily the nearest, but the best!
Best of luck! Keep asking questions!!!

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Thanks!

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@burrkay

@wally1940 – I should have included this link in my earlier post…a great web site to try to get answers!
https://www.cancer.org/cancer/lung-cancer.html

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Thanks

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@reibur1951

Update – Biospy -& that it was consistent with his lung primary sent to Nantomics which was the goal of Precision Genomics 5-6 weeks for results; they said the LT Axilla Lymph node was okay to do even tho it is RT supraclavicular neck lymph node that is the problem this still mystifies me since its not the one responding to the treatments had so far and the LT Axilla Lymph node has responded and remained stable and not started to re-grow like the RT supraclavicular neck lymph node

the radiation making mask/simulation was yesterday back on May 1 for whatever and then treatments begin for 10 days on May 5-10; 13-17. Drs appointment/infusion canceld for 29th because of radiation and re-scheduled for May 24th Dr. / Infusion of Prembro / KEYTRUDA® (pembrolizumab) There will be an appointment somethine in June for the Genomics.

Going to try to do a daily trip as motel room & boarding the dog & cat will be 967 not counting a meal a day – for a week – can do a daily trip gas/meal/valet parking for 453 and if works out like yesterday the valet parking is "validated" so give $50 to play on SO far no help on expenses has been offered there was offer for finding motel room but the options they had could not bring the dog (dachshund) and cat (siamese) with us…. So $ wise its cheaper to make daily trips….

Only concern is the car but it goes to pot in hand basket no loss for what paid for and whats wrong with and friends father being lied to about the condition we more than got our use out & what we paid for it
besides having to withing first week of have to buy a battery & alternator & then the brakes & left rotor & drum and
Medically its made
41 trips to Plymouth (53 miles round trip)
12 trips to Culver (20 miles round trip)
1 tp South Bend/Mishakawa (100 miles round trip)
55 to Indianapolis (200 miles round trip)
besides all the local trips for Grocery and shopping.

Just praying that the car and me can out last the month of May and really the car has to hold on till after October…

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I done it 1000 miles under my A$$ this week for 252.14 for gas/snack and one meal per day did without the meal today; and saved 714.14 if had gotten a motel & boarded Aries (the dog) & Lucy Lou (the cat) and t did not figure in the meals for the week. Reprieve for 2 days and start over….

So far so good really not tired… even been up each day before the alarm went off…

He seen dr. (radiologist) wed after treatment said some noticeable change… not really sure I do notice he holds that arm differently than the other ; sees dr. (radiologist) on wed not sure if again but scheduled for regular oncologist/lads/infusion no schedule for June as yet –

Not got anything done here at home but will try to without over doing….

Still ceases to amaze me somewhat the sister and brother-in-law has never bothered to calling once this week to see how things are going if car is holding up, if anything is needed – oh i know the both work but….

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@reibur1951

I done it 1000 miles under my A$$ this week for 252.14 for gas/snack and one meal per day did without the meal today; and saved 714.14 if had gotten a motel & boarded Aries (the dog) & Lucy Lou (the cat) and t did not figure in the meals for the week. Reprieve for 2 days and start over….

So far so good really not tired… even been up each day before the alarm went off…

He seen dr. (radiologist) wed after treatment said some noticeable change… not really sure I do notice he holds that arm differently than the other ; sees dr. (radiologist) on wed not sure if again but scheduled for regular oncologist/lads/infusion no schedule for June as yet –

Not got anything done here at home but will try to without over doing….

Still ceases to amaze me somewhat the sister and brother-in-law has never bothered to calling once this week to see how things are going if car is holding up, if anything is needed – oh i know the both work but….

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@reibur1951 I'm exhausted just reading about your week! I just got back from my first local Relay for Life by American Cancer in Noblesville, IN. The speaker at the beginning mentioned that one of the beneficiaries of the funds are the Hope Lodges across the country. I went up to one of the organizers after to ask if we had one in Indy since I knew someone in Northern IN who had been driving back and forth to Indy. She said no, but when that's the case they work with local hotels to provide options for reduced or free stays. Not sure if that's been info you got that was still out of price range or might help. She said to call 1-800-227-2345 and select option 1 to ask for details. I wish I lived in your area- I'd volunteer to come in to let the dog out and feed them both. It was refreshing to see all the people in our area that provide various assistance I never knew about. If you had any luck with staying in Indy I wonder if they, or even your Vet or one of the local churches or charities (United Way, Senior Services, Meals on Wheels, etc.) would know of anyone that could do that?

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Thanks for the info. Its not really been as bad as I thought it would be… Someone worse off than us needs the help as long as I can do it… there may come the day or time I can not but will cross that bridge when it comes. I bought a fabric/mesh/wire play pen for the cat as she likes at times to bounce off the walls… Its worked out better than I thought I did into even sleep in past 9:30 today…

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@reibur1951

Thanks for the info. Its not really been as bad as I thought it would be… Someone worse off than us needs the help as long as I can do it… there may come the day or time I can not but will cross that bridge when it comes. I bought a fabric/mesh/wire play pen for the cat as she likes at times to bounce off the walls… Its worked out better than I thought I did into even sleep in past 9:30 today…

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Last day of radiation – have been home between 3-5 each day of the 10 days – gave 4 hours travelling time with the construction work along the way there was a couple days they moved appointment up from 2 – to 1 & 1:40 of course we made time and arrived early think there was only one time had to wait very long most generally we were in and out before the scheduled time they are the greatest. done it for gas/snacks and a meal only 3 days did not stop for sandwich/meal the one day before i splurged stopped for Kentucky Fried Chicken family meal so there was plenty of leftovers for the next day – other 2 days said he did not want to stop done it for $495.18 – just the room board for the dog & cat and motel room for us these day days would of been $1933.10 not sure if we would of have to pay for transit while there or not; the valet parking was validated for all visits including initial dr visit too. Not sure if have helped still visibly swollen go back to radiologist on the 17th – his reg dr/labs/immunology next Friday still awaiting the Genomic reports… Amazingly it went very well except for a close encounter with a deer last week and this week… of course the Indy traffic but that's becoming old hat now.. started this journey in Oct 2017 (started with only an initial chest x-ray to see why was coughing so much then they ordered a ct which had to wait a week plus for results at local hospital in Sept – when family dr. only comment result was Thoracic surgeon & biopsy I said IU Medical center tried to get us to go locally but stuck to my guns not been sorry its been well worth all the travel time) God will only how much longer

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