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?
Interested in more discussions like this? Go to the Lung Cancer Support Group.
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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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1 ReactionNo 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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1 Reaction@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?
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1 Reaction@reibur1951- wowow- do you ride with him? What are his limitations?
@alamogal635 , @armstg- I have been doing some research so that all of us can see what happened inside our lungs before and after lung surgery. I wish that I had done this when I first had lug cancer but today's videos are great.
Please bear with anyone who sounds boring, it's still great info.
https://www.youtube.com/watch
what happens after lung segments are removed: https://www.youtube.com/watch
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1 ReactionPrayers - your expectations is what keeps you going - just do but do not over do. each person is different depending on gender, age, other health issues etc. It is the "person who is ill" that counts and one must remember that others should not push him/her beyond their exceptions of what they can handle etc. but let them do what they want and they will find their limitations but they may not voice them others just have to "read the signs" and be silent, observe and respect the persons and the signs his/her body gives off; notice silently what the person can or will not attempt to do. Above all if they are sleeping that to me is a "Do not disturb" as that is the body's way for some healing time. Rest and nutrition are the most important items beside "quality" medical care and treatment. In the end we all have an appointed amount of time here on earth and when it reaches the end comes reality is that no one can stop it from coming and happening.
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2 Reactions@armstg- Good morning and welcome to Mayo Connect. I'm so happy that your recovery went well. You are now 2 years out. Have you gone to pulmonary rehab? It is the best way to regain as much breathing capacity as you can. I am guessing that you had a lobectomy. My first cancer, 22 years ago this October. It was also a 1b, NSCLC. I did not need chemo. As a matter of fact it wasn't recommended. What about you? Unfortunately lungs do nor regenerate but what is left of your lung will fill in. That doesn't mean that it will be like new but you will not have an empty space. Did you have a wedge or a lobectomy? What activities have you re-engaged in? Are you exercising? Are you using an inhaler? As the summer heats up and the humidity rises you might breathe with more difficulty so your pulmonolgist can prescribe one if you need it.
I'd like to share my blog with you that I have written about my long journey. https://my20yearscancer.com/
Please feel free to ask any questions that you might have.
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1 ReactionThanks. 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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1 ReactionOh 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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2 ReactionsHis involves a rather larger upper right lobe tumor with multiple lymph nodes in the chest cavity; one prominent swollen one in the axillary armpit these all have shrank with the chemo/immunology and the Supraclavicular all these were visible on the PET scan in Oct. 2017 - the surgery /radiation was ruled out because of the multiple locations and was to great of a risk with so much area to cover.
this put in in Stage IVB.
All were shrinking and remaining stable until Jan. 2019 when the Supraclavicular started to re-grow - and still growing - he was on immunology from Apr - Feb 4 - - Feb 25 he started a new round of chemo with immunology but the lymph node is still growing - it is on or near the jugular vein - radiation is next option to see if it can be stopped from growing - and then if necessary surgery.
Can only hope and pray that radiation will help -
the prembo/immunology remain as treatment because of it results on the chest cavity and they are hoping it will have some effect on the Supraclavicular tho at present it seems not to be since it is continuing to grow. thus he was licked off of the 2nd clinical study because the Supraclavicular lymph node is still growing and not responding to the chemo/immunology
Radiologist appointment Monday after noon - got the appointment for the biopsy/Geonmics on Thursday at 9 am means a wake up call and on the road at 5 a.m. this is to help to find if there is treatments after radiation and clinical studies he can participate in but all rests on how he and the lymph node responds to the radiation.
I do not look for radiation to start until after Easter since Good friday is right after the biopsy and they wanted this done before any radiation treatments began.
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