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?

@reibur1951

Oh he does ride his bike almost daily 8.6 miles round trip to a country store to have coffee and BS with the local farmers etc. and it is most generally in all types of weather he has missed very few days – only one or two when we had that very bitter extreme sub-zero weather the end of Jan.

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@reibur1951– wowow- do you ride with him? What are his limitations?

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@armstg

Thanks. I think my expectations may be too high. I do fine with normal activities; water aerobics three days a week and walking 2-4 miles most days. I just struggle with physical exertion such as shoveling snow, raking leaves, or packing things up stairs. I had a left upper lobe lobectomy and will be 72 this year.

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@armstg– I agree, but I'm there with you. I always expect way too much of myself. It leads me to a lot of frustrations to be sure. I'm sure that you can empathize with that! lol. Shoveling, raking, packing are all upper body exercises and will tax your breathing more than lower body. You didn't mention weights or pulmonary rehab. Pulmonary rehab is wonderful, it will teach you how to breath efficiently and get you moving better, although you seem to be doing pretty well in that aspect. I'm also 72. I've had an upper left and lower right lobectomy. I use to power walk 4 miles a day. That is history for me but I still walk, lift weights, etc. Do you think that you might be interested in pul. rehab?

Liked by alamogal635

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No he goes alone – its his "thing" He does what he wants and then flops down and sleeps a lot – do not push him. Not been on a bike for years but probably should would be good way to loose weight… not sure if i could even ride one now without killing myself its been 1990/1991 since i been on one – my daughters son left his somewhere/or someone stole it when he was inside a local store – then he took his sisters and again ditto so I never replaced they where 16/18+ at time and no longer interested in bikes

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Try just plain walking–for you. Don't try fro any marathons, or such. Walk a little each day even is it is around your back yard. That will help your anxiety. You can always work up to more walking as your health increases. If you don't have a back yard, walk down the street and in crease your steps weekly, or whatever works for you. Good luck with all you are handling.

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@alamogal635

Try just plain walking–for you. Don't try fro any marathons, or such. Walk a little each day even is it is around your back yard. That will help your anxiety. You can always work up to more walking as your health increases. If you don't have a back yard, walk down the street and in crease your steps weekly, or whatever works for you. Good luck with all you are handling.

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It's my friend and you can not tell him anything 🙁 he thinks he knows it all… won't tell anything but at least he did to the doctor in Jan 🙁 you can imagine my shock but go with the flow… promised his mother (Died Dec 26 2018) and dad (died Jun 28 2018) details of past 2 years in other post on her and In Grief support been a very long 2 year…14 years I be here for him. Me I go till i drop or my body says "sleep" so much to do clean-up etc. and all taking the back seat….

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@merpreb Thank you! This is going to be great to study. I will NOT find it boring. Am getting ready to have the works done at my hair salon–bye bye grey hair and hello very light blond color. I will start working with a woman on Monday who knows a lot about breathing and healing form this sort fo surgery. So, I"m hoping to build up strength, etc. Wish I could rake leaves and all that other stuff, but I have a really bad lower back that will not allow me to do this. So I walk, do stretching exercises. and specific back exercises. I"m 68 years old and feel good for my age. Thank you again for these bis of information about the lungs. Have a wonderful day.

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@merpreb Great job! Many who are diagnosed seem to just accept it and move on…me, I like to understand it!

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@armstg

Thanks. I think my expectations may be too high. I do fine with normal activities; water aerobics three days a week and walking 2-4 miles most days. I just struggle with physical exertion such as shoveling snow, raking leaves, or packing things up stairs. I had a left upper lobe lobectomy and will be 72 this year.

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I had an upper right lobectomy at the end of July last year, so I know what you mean. My cyst was very low in the lobe, so I also had 33 radiation treatments and 4 rounds of chemo which all ended about 4 months ago. My 3-month CT scan showed no sign of cancer, but there is still some "glassiness" in my right chest consistent with that many radiation treatments. Personally, I'm blaming the continued need to sleep an extra hour to an hour and a half on the radiation. The shortness of breath, however, I think is certainly somewhat due to the fact that they cut out 20+% of my lung! Oh, I'm an otherwise healthy 58-year-old male.

I'm an early adopter of a Fitbit, which tracks my steps. I'm up to about 7,000 steps a day, or roughly 3.5 miles. I also climbed a skyscraper last Saturday. Yes, you read that right!

I had a friend die of lung cancer in 2014. I wanted to do something to honor her memory. I heard about these things called Fight for Air Climbs. Turns out they are the signature fundraising event of the American Lung Association. This was my 5th year as team captain of The Lung and the Breathless. Here in the Los Angeles area, we climb the 1,393 steps of the Aon Center in downtown LA. I have a 9-week training program I use to prepare for the climb. I had to modify it this year by adding 1.5 to 2 minute rest breaks which is the only way I made it on Saturday. They also record our times. I've done it in as little as 22 minutes in the past. This year, I expect they'll say it took me an hour!

I was positively impressed with the way my body responded to the training. There was no day-to-day perceptible difference. But the first week I climbed a total of 30 floors in 25 minutes. (I take the elevator to the basement, hit the 5 button, get out, climb to the 5th floor, take the elevator back down to the basement. Repeat.) By the 9th week I climbed 35 floors in 20 minutes. All along, I stop and catch my breath when I feel winded. I didn't feel like I had pushed myself any harder in the 9th week than I had in the first, even though I had climbed 5 more flights of stairs in 5 fewer minutes!

My doctor agrees and recommended that I do this regular exercise or get a personal trainer. Gently pushing your body a wee bit more each week WILL result in long-term progress. Another data point: a co-worker is a distance runner – mostly 10Ks and half marathons. A runner friend of hers had an upper right lobectomy. It took time, but she's running again! Apparently, over time, the other lobes do expand somewhat to fill in the hole that was created by our lobectomies.

So be gentle with yourself. Pick something you like such as walking, biking, climbing stairs — something where you can measure your performance. Very gradually walk faster or walk quicker, rider farther, climb more stairs, whatever. Over time you WILL get stronger! You've probably noticed that we're not in our 20s anymore, so we recover a lot more slowly.

For the record, I still dream of actually being able to jog. I just end up panting too quickly. But I can walk up a shallow hill more briskly than I could 3 months ago! Baby steps.

Hope this helps with your expectations.

Matthew

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@flusshund– Hi Matthew. It's nice tot talk to you again. How are you feeling? I love love love that you are climbing stairs. After my first lobectomy I went to Paris with my husband and I climbed every damn step of Montmartre- outside and in. I took my time, let people pass me and just kept plugging along. Inside the Sacre Coeur, the Church there are over 300 steps to the top of the dome. And there were many many more to get there.
I couldn't do it now but I loved doing it. I was so proud. I'm glad that you have motivation to keep going. With every day, week and month we get stronger. What is your usual exercise for the week when you aren't training?

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Hi Merry.

To be determined! I've never been good about going to the gym just to go to the gym. I've always worked out for a purpose: the annual stair climb, weekend backpack trips, staying in shape for being a wilderness search and rescue canine handler, etc. But when I have no reason to be in shape, I become a slug. That has to change!

I saw a great movie titled "If You're Not in the Obit, Eat Breakfast". In it, Carl Reiner interviews a bunch of folks in their 90s and asks how they did it. And these people are all happy and lively. It's a very positive movie. My favorite phrase was something like, "I'm 93 years old. Half my life is over!" Dick Van Dyke talks about why he works out. He said you work out in your 30s to impress the opposite sex. You work out in your 50s and 60s to prevent a heart attack. And you work out in your 80s to stay out of Assisted Living!

After the Super Bowl, I bought Tom Brady's TB12 book. He won his 6th Super Bowl at 40, so he must know something about keeping the body functioning! I've got a couple physical problems including osteoarthritis in the base of my left thumb that makes pushups impossible and a lot of traditional weight lifting painful. Some of the TB12 stuff is too extreme for me, but I like the workouts. He emphasizes working with bands instead of weights and makes a good argument. The hard part is that he lists 12 separate exercises for upper body, lower body and the core. And he recommends you do ALL of them at every workout! So I have 36 exercises to learn. Not that I feel like I HAVE to do all of them with every workout. I've definitely learned to just do what I can.

After that skyscraper, I'm going to take this week off and just stretch and walk at least my 7,000 steps a day. I have some shoulder impingement that friends have told me is the beginning of rotator cuff damage. I've just started carefully swinging Indian Clubs and the movement is helping. My initial plan will be to start doing my band "weight lifting" twice a week on Wednesdays and Saturdays and see how it goes from there.

Matthew

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MAtthew- I was just looking at his bands today! My husband and I need new ones and his look far better than what we have! Keep it up and have a great day

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Hello Colleen, here is a link to my youngest son’s utube video that helps with meditation & relaxation that is very good to listen to for calm & reducing stress.

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@lady1lake

Hello Colleen, here is a link to my youngest son’s utube video that helps with meditation & relaxation that is very good to listen to for calm & reducing stress.

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@ladylake– This is awesomely beautiful. I signed up to get notified by his you tube account when he puts up new music. Thank you so much for sharing.

Liked by alamogal635

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Hello all,
I have shared in this group and continue to share in a few others as well. Today I'm hoping that someone here might have some insight or suggestions for me regarding my husband's cancer diagnosis.

I am a breast cancer survivor, so not new to cancer tests, diagnosis or treatment options but my husband's situation is quite unusual and frustrating, so here's hoping someone may have some helpful thoughts or resources.

In January 2018 my husband was diagnosed with cancer, a tumor in his lung and the same cancer type in his subcarinal lymph node. Multiple biopsies, scans and tests and a second opinion from our largest, most respected cancer hospital in the area – the diagnosis was: Cancer of Unknown Primary. CUP is a cancer that doesn't match the area where it is found. The tumor is in my husband's lung and the lymph node nearby. There is no other metastasis of the cancer. The pathology doesn't match lung cancer and it does not match cancer of the upper GI tract, but it has elements of each.

We have been doing PET scans every 3 months to see if the cancer might present itself elsewhere (other than the lung) but it has not. It has been 16 months now. When he was diagnosed they gave him less than a year to live, Stage IV terminal cancer. We have organized our lives accordingly, which has caused great stress. They have now downgraded the cancer to Stage III. The tumor has remained mostly stable over the past year. The PET scans show increased activity in the lymph node on some scans and less activity on others.

The good news is that the cancer is stable and my husband is still here. The bad news is that we still don't know what we're dealing with or what, if anything, can be done. My husband has had no surgery, no radiation, no chemo, no targeted or immunotherapy……they don't know what to use unless they use everything, as in several kinds of chemo, to stop it. My husband has refused chemo without knowing what type of cancer we're facing.

At the time of diagnosis my husband had an undiagnosed heart condition that caused considerable symptoms and made him appear quite ill. That has been resolved. He was misdiagnosed with Parkinsons (he does not have that) and the surgery to correct the heart defect resolved the symptoms that looked like Parkinsons. He does have moderate COPD, which is fairly well controlled with his medications, O2 and other treatments.

So here we are at 16 months (thank goodness) and my husband has this odd cancer diagnosis. He doesn't feel well and we're trying to figure out if that's the result of the COPD or the cancer. The cancer is spreading via the lymph node through his body but his symptoms, according to the doctors, are not specific to the cancer. He does cough up some brown stuff every day now (COPD or cancer?) and has considerable fatigue. He also has some heartburn and takes prescription meds for that, which control or remedy it. That's it………..

The doctors (several of them) can't give us any answers or plan other than PET scans every 3 months. My husband has been using medical marijuana as his only treatment for the cancer (at the direction of his doctors). That could be reducing inflammation and possibly some of the cancer activity.

Has anyone had a similar situation or have any thoughts from things you may have researched. The doctors are leaning toward lung cancer now because the cancer isn't forming any tumors or causing any symptoms outside the lung??

If you got through this long email (thanks) and any thoughts are appreciated.

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@cindylb

Hello all,
I have shared in this group and continue to share in a few others as well. Today I'm hoping that someone here might have some insight or suggestions for me regarding my husband's cancer diagnosis.

I am a breast cancer survivor, so not new to cancer tests, diagnosis or treatment options but my husband's situation is quite unusual and frustrating, so here's hoping someone may have some helpful thoughts or resources.

In January 2018 my husband was diagnosed with cancer, a tumor in his lung and the same cancer type in his subcarinal lymph node. Multiple biopsies, scans and tests and a second opinion from our largest, most respected cancer hospital in the area – the diagnosis was: Cancer of Unknown Primary. CUP is a cancer that doesn't match the area where it is found. The tumor is in my husband's lung and the lymph node nearby. There is no other metastasis of the cancer. The pathology doesn't match lung cancer and it does not match cancer of the upper GI tract, but it has elements of each.

We have been doing PET scans every 3 months to see if the cancer might present itself elsewhere (other than the lung) but it has not. It has been 16 months now. When he was diagnosed they gave him less than a year to live, Stage IV terminal cancer. We have organized our lives accordingly, which has caused great stress. They have now downgraded the cancer to Stage III. The tumor has remained mostly stable over the past year. The PET scans show increased activity in the lymph node on some scans and less activity on others.

The good news is that the cancer is stable and my husband is still here. The bad news is that we still don't know what we're dealing with or what, if anything, can be done. My husband has had no surgery, no radiation, no chemo, no targeted or immunotherapy……they don't know what to use unless they use everything, as in several kinds of chemo, to stop it. My husband has refused chemo without knowing what type of cancer we're facing.

At the time of diagnosis my husband had an undiagnosed heart condition that caused considerable symptoms and made him appear quite ill. That has been resolved. He was misdiagnosed with Parkinsons (he does not have that) and the surgery to correct the heart defect resolved the symptoms that looked like Parkinsons. He does have moderate COPD, which is fairly well controlled with his medications, O2 and other treatments.

So here we are at 16 months (thank goodness) and my husband has this odd cancer diagnosis. He doesn't feel well and we're trying to figure out if that's the result of the COPD or the cancer. The cancer is spreading via the lymph node through his body but his symptoms, according to the doctors, are not specific to the cancer. He does cough up some brown stuff every day now (COPD or cancer?) and has considerable fatigue. He also has some heartburn and takes prescription meds for that, which control or remedy it. That's it………..

The doctors (several of them) can't give us any answers or plan other than PET scans every 3 months. My husband has been using medical marijuana as his only treatment for the cancer (at the direction of his doctors). That could be reducing inflammation and possibly some of the cancer activity.

Has anyone had a similar situation or have any thoughts from things you may have researched. The doctors are leaning toward lung cancer now because the cancer isn't forming any tumors or causing any symptoms outside the lung??

If you got through this long email (thanks) and any thoughts are appreciated.

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@cindylb my heart goes out to you and your husband.
My wife is a stage 4 lung cancer patient, having had a double lobectomy in 2015. After not responding to opdivo treatments, her Mayo oncologist ordered a fresh lung biopsy and sent it off for a molecular study to determine the exact type of mutation.
The results were that her molecular study of the biopsy identified amplification of HER-2…common in breast cancer patients, but rare in lung cancer.
Treatment was changed to a trial doublet of meds…which she has responded to well.
Therefore, my only suggestion is to consult with your Husband’s oncologist about whether it might be worth pursuing a molecular study to define the exact mutation to better establish the correct treatment path.
Good luck!

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