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?

@bluelagoon

@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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@bluelagoon– This is an excellent post and you are correct, how side effects do not indicate if your chemo is working or if it is. I actually have been thinking about you lately. How have you been this year?

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@merpreb I got busy and stopped following these posts but they started to return to my email in time to know I needed to jump in! My next quarterly visit to Mayo comes up in about 10 days- still far enough off that I'm just thinking about the "roadtrip" and restaurants part and not the tests! And you?

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@mepreb: bluelagoon reminded me that I as well have not been keeping up with posts here. Had my CT scan in Sept. and so far so good–no sign of a return of LC. That was a pleasant bit of news. Lungs do show a little Emphysema, but not much. The latter doesn't surprise me. Then in October had cataracts removed and it is amazing how well I see now. It has been a year of so many medical happenings. The only thing coming up is another CT lung scan in early March 2020. For now, I"m trying to stay upbeat concerning my lungs staying clear of any cancer, or any cancer showing up anywhere else. Realize I was kind of in a post-operative slump for several months after my lobectomy in March of this year. Now I'm walking more and doing more things I want to do. Unless I get sick from something, I'm hoping to have a vacation from physicians until the early months of 2020 when the yearly exam comes up and then the CT scan. I keep you and all on this site in my thoughts and prayers. We are a special group of folks who hare the worries fo cancer in one form, or another. Just sending all my greetings and wishing everyone the best.

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@alamogal635 and @bluelagoon – Hi There! I am so glad that things have been good for you! I know that there is a tendency to pull back when things settle down. It's like, ok now a breather for me. I get that, I really do but it really is important to help share your experience and offer support to new people who come to us too. And your wonderful language of support is always welcome. And I love to hear from you! Maybe both of you can chime in a bit more? I miis you!

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@merpreb Will do so. Not saying all is sunny and bright–the lurk of "what if" IT returns is always there. I guess it will be so from now on. I have found deep breathing to help settle nerves and anxiety hen anxiety arrives. That is probably lemental for many on this site, but for me, actually doing it has helped tremendously.

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@alamogal635

@merpreb Will do so. Not saying all is sunny and bright–the lurk of "what if" IT returns is always there. I guess it will be so from now on. I have found deep breathing to help settle nerves and anxiety hen anxiety arrives. That is probably lemental for many on this site, but for me, actually doing it has helped tremendously.

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@alamogal635– Good morning. "What if" is one of the new you thingies that happens with cancer. I don't "what if" out loud to myself I just fill up with dread and inertia takes me over. Of course it is all about lamenting our own lives. How can it not? I might be better off "what iffing" because then I might come up with some alternatives. I am not a person who has just accepted their own death with ease at all. I fear I might go kicking and screaming all the way. I do know that it is inevitable but I am so not prepared for it at all.

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Thanks for the welcome. My wife suggested the clinic. I suffer wit emphysema and COPD. I inquired about stem cell treatment and does it really work. No answers yet but I will Share if I do. Greg Edwards

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@hgregory

Thanks for the welcome. My wife suggested the clinic. I suffer wit emphysema and COPD. I inquired about stem cell treatment and does it really work. No answers yet but I will Share if I do. Greg Edwards

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@hgregory– Good morning Greg. I must warn you that stem cell treatments for COPD is very new and that there really only trials being offered. It's important to find legitimate information about the trials and those that are just scams. There are a lot of bogus clinics offering all sorts of promises that are just not science based.
https://www.webmd.com/lung/copd/features/copd-new-treatments#2 – This will give you some understanding of your interest.
I would recommend looking into this: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care

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@merpreb

@alamogal635– Good morning. "What if" is one of the new you thingies that happens with cancer. I don't "what if" out loud to myself I just fill up with dread and inertia takes me over. Of course it is all about lamenting our own lives. How can it not? I might be better off "what iffing" because then I might come up with some alternatives. I am not a person who has just accepted their own death with ease at all. I fear I might go kicking and screaming all the way. I do know that it is inevitable but I am so not prepared for it at all.

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@merpreb Am like you–I keep the "what ifs" to myself. Have found that most people are uncomfortable talking about such things. That is why here we CAN discuss such fears. Moreover, I truly have no family left with whom to talk. I do a lot of living in my mind. I think none of us wants to die, even though we can rationalize it as something that will happen one way, or another. We just can't comprehend the idea., i think. We all have our own way of facing our ultimate demise and if we go kicking and screaming, or quietly that is our own choice. I love life and will fight for living it to the fullest until that time comes. I have my piano and my four dogs. Don't know what I'd do without them. Don't know what I'd do without this site where we can truly be honest about things. I"m so glad to have found you. You are such an inspiration to us here.

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@alamogal635

@merpreb Am like you–I keep the "what ifs" to myself. Have found that most people are uncomfortable talking about such things. That is why here we CAN discuss such fears. Moreover, I truly have no family left with whom to talk. I do a lot of living in my mind. I think none of us wants to die, even though we can rationalize it as something that will happen one way, or another. We just can't comprehend the idea., i think. We all have our own way of facing our ultimate demise and if we go kicking and screaming, or quietly that is our own choice. I love life and will fight for living it to the fullest until that time comes. I have my piano and my four dogs. Don't know what I'd do without them. Don't know what I'd do without this site where we can truly be honest about things. I"m so glad to have found you. You are such an inspiration to us here.

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@alamogal635– Awww. You are such a sweetie. Thank you.

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@merpreb

@alamogal635– Awww. You are such a sweetie. Thank you.

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@merpreb I mean what I wrote. Hope you have a wonderful weekend.

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@merpreb

@hgregory– Good morning Greg. I must warn you that stem cell treatments for COPD is very new and that there really only trials being offered. It's important to find legitimate information about the trials and those that are just scams. There are a lot of bogus clinics offering all sorts of promises that are just not science based.
https://www.webmd.com/lung/copd/features/copd-new-treatments#2 – This will give you some understanding of your interest.
I would recommend looking into this: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care

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I'll check out your site recommendations thanks for the input.

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@alamogal635

@merpreb I mean what I wrote. Hope you have a wonderful weekend.

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@alamogal635– I know that you do.

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@lady1lake– Hello. It's been quite a while since I have heard from you about your cancer status. The last the I read was about your successful lens replacements. I love mine. How are you doing?

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Hello Everyone.
I have found this group as I have nobody to talk to in respect to my wife and her terrible scare.( I am sworn to secrecy) About a week ago she had a chest x-ray and we were notified by the Dr's office that they wanted to talk to her ASAP as they had seen something that was of worry. It appeared that they discovered two growths or nodules on her right lung. One being 1.7 cm and the other 3 cm. They immediately booked her in for a CT scan within a week and that was on a Sunday. It is now Tues and the had pre booked us for an appointment for what I believe is to discuss what the CT scans reveled . My wife is the love of my life for over 28 years and I am so scared as she is as well. Does anyone have any encouraging words or advise as I don't know what to do.
HELP!

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