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?

@woodedareas

I started with Dr Cassini in Rochester but chose to have my surgery in Chicago with my family nearby. I am now looking for a doctor in Arizona for the winter. Mayo in Scottsdale will not accept Medicare, unlike Rochester. Happy you are well. Thanks

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Welcome to Connect, @woodedareas. I agree with @llwortman. You may wish to contact Mayo Clinic billing directly to find out if your care can be transferred from one campus to another. Here is the contact information for billing https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

You can also contact your care team through the Mayo patient portal, Online Patient Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

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@woodedareas

I just completed VAT surgery in Chicago for stage 1a lung cancer. I will have to report back in 3 months for a mother CAT scan. I am doing well now 3 weeks later. I would like to visit my home in Arizona but find that Mayo will not accept Medicare. I have been a patient in Rochester with no problem. Since this a Mayo website can someone tell me if I qualify for care at Mayo or if I should look elsewhere. Last year I tried 3 time for anappintment but was denied ar Scottsdale. Thanks

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@woodedareas– Congratulations and welcome to Mayo Connect. I can only address your lung issues as I use and hospital on the east coast. Three weeks is a short time of recuperation so I hope that you are taking it easy. I'm a 22 year survivor of lung cancer. Did you have a lobe removed?

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@mcleslie

What we thought was an on again off again muscle strain/knot in his upper back was likely warning pain. His Dad, who hadn't seen him in awhile said he looked flushed but he has always been an outdoor guy, we thought it was too much fishing. And now his most difficult symptom is fatigue and swelling of his face (we thought it was a sinus infection), shortness of breath. The tumor is pressing against an artery causing the swelling but steroids are helping and radiation should shrink the mass/tumor.

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@mcleslie– Good morning. It's been over a month since you last posted and that we heard from you. I am hoping that your husband's health has stabilized and that the radiation is working. I am a 22 year lung cancer survivor and know first hand the initial emotions that come with those dreadful three words, "You have cancer." How are you both doing? Has you husband had any further treatments?

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@merpreb

@mcleslie– Good morning. It's been over a month since you last posted and that we heard from you. I am hoping that your husband's health has stabilized and that the radiation is working. I am a 22 year lung cancer survivor and know first hand the initial emotions that come with those dreadful three words, "You have cancer." How are you both doing? Has you husband had any further treatments?

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Thank you for checking in. The VA has been simply amazing and thankfully being a Veteran, this is all covered. My husband finished 5 weeks of radiation (69Gy in 23 fractions at 3Gy per) and completed 3 rounds of chemo (port in leg due to SVC), 2 more "mega" doses because everyone keeps saying he is young and can take it. Next up, immunotherapy for a year. Radiologist says he is doing well, and will evaluate by another scan in 3 months but indicates it is working.

So the official diagnosis is T2bN2Mx Stage 3A and most likely stage 3B per records. All I know is that it isn't great… no one really has translated that for us. Frankly I'm not sure I want to know but I guess I should. Right now nothing is operable. He has battled fatigue and nowjust a bit of peeling skin on his chest. We have hope and we don't live CANCER every day. It has been a quick long few weeks. We are coping but struggling financially on only one source of income… denied SS disability but will likely apply again. On to VA benefits compensation.

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@mcleslie

Thank you for checking in. The VA has been simply amazing and thankfully being a Veteran, this is all covered. My husband finished 5 weeks of radiation (69Gy in 23 fractions at 3Gy per) and completed 3 rounds of chemo (port in leg due to SVC), 2 more "mega" doses because everyone keeps saying he is young and can take it. Next up, immunotherapy for a year. Radiologist says he is doing well, and will evaluate by another scan in 3 months but indicates it is working.

So the official diagnosis is T2bN2Mx Stage 3A and most likely stage 3B per records. All I know is that it isn't great… no one really has translated that for us. Frankly I'm not sure I want to know but I guess I should. Right now nothing is operable. He has battled fatigue and nowjust a bit of peeling skin on his chest. We have hope and we don't live CANCER every day. It has been a quick long few weeks. We are coping but struggling financially on only one source of income… denied SS disability but will likely apply again. On to VA benefits compensation.

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@mcleslie– Oh it's great that you answered back! First about the fatigue. Unfortunately, it's the name of the game. Lung cancer takes up room in your lunges and gives you less oxygen to use on top of that radiation and chemo will make him very very tired. That will change as he gets through them. Living cancer every day could very well be your lives for a while. Cancer will stay with your husband as he will be looking over his shoulder to see if it returns, gets worse or is cured. For now, because of his on going treatment it is your lives, but you know that. As time goes by activities will be more of your focus than the illness itself.
I am so glad that the Vet is taking good care of you. Being on one income is tough but it looks as if you are on top of things for nowe link:.
Would you be interested in our caregiver's group? You have a very tough job that requires a lot of patience and love. It's tiring and stressful and you will need support from people who know how you feel and have been "there" Here is the link: https://connect.mayoclinic.org/group/caregivers/
I know that your husband is very tired. Might you ask him if would like to join this conversation himself?

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@merpreb

@mcleslie– Oh it's great that you answered back! First about the fatigue. Unfortunately, it's the name of the game. Lung cancer takes up room in your lunges and gives you less oxygen to use on top of that radiation and chemo will make him very very tired. That will change as he gets through them. Living cancer every day could very well be your lives for a while. Cancer will stay with your husband as he will be looking over his shoulder to see if it returns, gets worse or is cured. For now, because of his on going treatment it is your lives, but you know that. As time goes by activities will be more of your focus than the illness itself.
I am so glad that the Vet is taking good care of you. Being on one income is tough but it looks as if you are on top of things for nowe link:.
Would you be interested in our caregiver's group? You have a very tough job that requires a lot of patience and love. It's tiring and stressful and you will need support from people who know how you feel and have been "there" Here is the link: https://connect.mayoclinic.org/group/caregivers/
I know that your husband is very tired. Might you ask him if would like to join this conversation himself?

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Thanks Merry, I joined the Caregiver group. I have family who check in on me to make sure I'm taking care of me. I will share this website with my husband. He actually went to the bowling alley for a mental health night out and met up with an acquaintance who is down the road a few months and he really got to share so now this will be his weekly night out, if he is up to it.

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@colleenyoung

Welcome to Connect, @woodedareas. I agree with @llwortman. You may wish to contact Mayo Clinic billing directly to find out if your care can be transferred from one campus to another. Here is the contact information for billing https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

You can also contact your care team through the Mayo patient portal, Online Patient Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

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Mayo in Arizona will. It accept Medicare or other governmental insurance. I have tried before but they are a separate corporation from Rochester. Most seniors in Arizona have given up on Mayo there and I also am very disappointed. I am receiving excellent care in Chicago and when I go to Arizona this fall I will go elsewhere At this time I am very disappointed in Mayo Arizona. For $8,000 they will provide concierge health care. That should tell you something.

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I miss typed. Mayo in Arizona will NOT accept seniors with Medicare.

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I think maybe they won’t accept Medicare for a new patient. If you are an existing patient that transitions to Medicare, you can continue to be a patient.

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@cwm1

I think maybe they won’t accept Medicare for a new patient. If you are an existing patient that transitions to Medicare, you can continue to be a patient.

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@woodedareas the acceptance of out-of-state medicare differs between the MN, AZ and FL campuses. You can read more about Mayo and Medicare on these pages:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Mayo Clinic accepts new Medicare patients. Mayo Clinic is one of the largest Medicare providers in the country. Unfortunately, Mayo Clinic cannot honor all requests they receive from Medicare patients who want to come to Mayo Clinic. Medicare patients are accepted in all practice areas where there is capacity (appointments available) to accommodate them and most importantly, as the medical needs of these patients require.

@woodedareas it must be very frustrating to not be able to continue the care you received at Mayo Rochester at the Arizona campus when you go to Arizona this fall. How long will you be in Arizona?

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@colleenyoung

@woodedareas the acceptance of out-of-state medicare differs between the MN, AZ and FL campuses. You can read more about Mayo and Medicare on these pages:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Mayo Clinic accepts new Medicare patients. Mayo Clinic is one of the largest Medicare providers in the country. Unfortunately, Mayo Clinic cannot honor all requests they receive from Medicare patients who want to come to Mayo Clinic. Medicare patients are accepted in all practice areas where there is capacity (appointments available) to accommodate them and most importantly, as the medical needs of these patients require.

@woodedareas it must be very frustrating to not be able to continue the care you received at Mayo Rochester at the Arizona campus when you go to Arizona this fall. How long will you be in Arizona?

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I go to Arizona for about 6 months but periodically return for business reasons.Most seniors in the Phoenix area have given up on Mayo and there are some very hard feelings. I tried again and they usually respond by saying they are not taking any new patients, then if pressed it really is that they will not accept government insurance (Medicare).There are a few departments that will accept but very very few. Further when I reviewed their staff physicians they do not have the same high quality educational backgrounds in residencies and fellowships as the major health care facilities in Chicago where I live or as in Mayo Rochester. Ironically for $6,000-$10,000 they will accept you as a concierge patient.So I will continue to be treated in Chicago where we have far larger and more comprehensive health care providers including Northwestern, U of Chicago, and Rush. I will simply fly back as needed. I respectively disagree with you comment that Mayo takes patients based on capacity as my past 12 months of research and numerous telephone calls, and emails proves that to be incorrect. It is predominately cash flow. If you lived in Arizona you would hear the same thing from allonym senior neighbors.

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I am new to the site, Diagnosed Stage IV adenocarcinoma lung cancer. Had obe chemo treatment Keytruda, Carboplatin & Alimta. Having no side effects and wondering if it is working. Just feeling a little tired.

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Enjoy the tiredness. Only had that once. Had trough up and diarrhea 8 times. 3 pet scans two were fine and third one was about 2 hours ago. No results yet. Same meds you’re getting.

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@rlmaronye

I am new to the site, Diagnosed Stage IV adenocarcinoma lung cancer. Had obe chemo treatment Keytruda, Carboplatin & Alimta. Having no side effects and wondering if it is working. Just feeling a little tired.

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@rlmaronye– Good morning and welcome to Mayo Clinic Connect. Unfortunately we can not diagnose or tell future forecasts. However what you describe as your symptoms sound very normal. Did your oncologist tell you that you will be getting regular (maybe every 3 months or so) scans to see how you are doing? This is the way, with blood work that your doctors can tell the efficacy of your therapy.

Each person reacts differently to chemicals. Some people like @richcolleen can be ill and others have it very easy. When I had chemo it was a while ago and it was rough for me but I was never really ill. I took meds to help with that.
Would you mind me telling me more about when you were diagnosed and how long you have been treated?

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@rimaronye Last year I went through 4 rounds of Cisplatin & Alimta and remember reading in "the fine print" that how you feel is not related to how it is working, even though people always think if they are sick it must be working or if you aren't then it must not be working. I was like you with very few issues so I remember being glad to see there wasn't a correlation. Anyone on your oncology team should be able to confirm that for you- I recall those who did the injections were well versed in side effects of the different meds, such as most people with my combo didn't have hair loss (which I had just assumed would happen and was happily surprised to not experience!)

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