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sashjo

I am new. I have NSCLC Stage IV. Need support.

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Having a hard time feeling anywhere near normal. Looking for support. 

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Where are you in treatment? Have you started? Do you have a plan?

Peace

Tom

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Welcome sashjo,

If it is support you want, you have come to the right place.  We all understand what it is like to not feel normal due to lung cancer.  Feel free to share as much or as little as you like about yourself and your lung cancer.  These forums are great resources for information on current treatments and survivorship, so also feel free to look around.  Let us know how we can help.

Take Care,

Steff

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Hi Tom. I live in upstate New York. My oncologist is associated with Norther Dutchess Hospital in Rhinebeck, NY. I've been in treatment for two years. They originally started me off with chemo but found I had a high marker for immunotherapy. Keytruda is what I'm being treated with. When you ask if I have a plan. In what sense? The thing I'm finding very challenging is with the diagnosis I received, for the first year I just thought about dying. Not in a morbid way but in a way that I could assimilate it, accept it, and still go on feeling hopeful for whatever time I have left. All along my scans have looked good which I'm incredibly grateful for. I've had a few serious bumps in the road but at this point at two years survival I don't feel like the same person. I feel like using my time correctly is kind of an urgent thing while at the same time I feel kind of lost and don't know exactly what that means. Now during this pandemic I feel like I'm floating through life almost as if I'm in a dream. Motivation and structure feel difficult. I live on my own. Got divorced 20 years ago. My son is grown and out of the house. So your question, do I have a plan. That's hard for me to answer. I'd say spiritually to live fearlessly, be a better man, learn to give and receive love more openly. These are internal goals. The external ones are more daunting. Thanks Tom. Peace - Josh

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Josh,

Welcome here. I'm another Tom on the forum.

Survival is daunting, especially in these days of COVID-19 isolation. While I'm not in treatment, I have but 30% pulmonary capacity as a result of my many treatments and have been confined to quarters by all my physicians. It is hard to see these glorious days of summer roll out through a window, so I understand what you feel.

To your question, what is a near normal lung cancer survivor's lifestyle? Well for me, it was vastly different than my pre-cancer lifestyle and more challenging, I had to make a new life, my own new normal.  Acceptance of this reality was my hardest barrier.  Many things kept tugging me back to my very active pre-lung cancer lifestyle. I went back to work after a year's worth of surgical mayhem only to encounter multiple recurrences that debilitated me and increased my stress level. Coping with side effects and chronic pain joined the difficult and stress inducing challenge of design, development and production on a schedule. I toughed it out for six years and finally ran out of tough. So obviously, trying to live a pre-lung cancer lifestyle with post treatment limitations didn't work for me. Moreover, because everything work-wise was vastly harder and because I was no longer meeting my standard of performance, depression stepped into the party. I guess advice based on my experience is learn to accept there will be a new normal life and you'll need to make it.

What are elements of my new normal. Before COVID, they were once-a-year odyssey trips to Europe starting with a transatlantic cruise. This year, COVID required we cancel our Greek Isle cruise. I also am writing a novel and for an engineer, that is a very challenging endeavor. But it requires me to engage my mind in meaningful activity and that seems to be my key ingredient to new lung cancer survival normal lifestyle. I also find this forum to be very therapeutic. Helping people cope with treatments, side effects and outcomes makes me feel good and needed. These are important also. I could continue the list but one defining characteristic of my pre and post lung cancer life style is that my activities are mostly all new. Is survival worth it? For me, absolutely and I hope you quickly find your stride.

There are many long tenured survivors here and each has had to remake a life after lung cancer. I'm sure many more will offer their insight.

Stay the course.

Tom

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Hi Josh,

Welcome to the forums. I was diagnosed about a year and a half ago with stage 4 Squamous cell lung cancer and man, was that a shock. I went through all the testing and scans and meetings and doctors and hospitals and all that stuff. I was lucky to find an amazing oncologist who has taken my hand through this journey. Together we have done a pretty good job of kicking the beast's *ss for the moment. I was on chemo and Keytruda for the first 6 months of my treatment and it's been just Keytruda every three weeks since then. I did have 5 treatments of super radiation which seems to have zapped it and my next scan will tell me if it's dead. 

Like Tom, I had a very active life before my diagnosis. I am a yoga teacher who had classes and privates every day. I taught in yoga studios and also out of my home studio. I was either teaching or taking classes. I also did a lot of traveling as my daughter lives in Salt Lake City and I'm in South Florida. I was constantly flying out to be with her. I was there when Covid really hit and had to come home early or not at all. 

Many things have changed for me now that Covid is here. I am teaching classes online and taking them online too. I am watching a lot of TV and surfing the internet. I don't go out much anymore other than to see my amazing doctor BUT I am alive. I do my best to stay busy and live the best life I can. I have come to realize that everyone is doing the same thing. If you are stuck in the house like me there are so many things to do online to help keep busy.. I read books, watch videos of The Beatles (I'm such a sick Paul McCartney fan) and other things like my Miami Heat Basketball team. I take yoga classes and other classes too. I was going to start a walking routine but it's so hot down here that it's hard to do so I workout in my home studio. I email friends and talk on the phone and before I know it it's bedtime. 

I realize that this is not the best life I ever lived but at least I'm living a life and I am basically a happy person thankful for my life and these forums. There is a life out there for you. It's just not the same old life. Sometimes change is good or so I have heard. Good luck with your treatment and let us know how you are doing.

Peace, light and good scans to all,

Claudia

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Hi Josh,

I’m also a two year Stage IV survivor, diagnosed with the ALK Positive mutation.  Like the others, I had to make a new life post cancer, with all of it going out the window when COVID set in.  
 

I founded a support group for lung cancer and I’m surprised how well our group has stayed together for almost 18 months.  It’s a lifeline to be connected to them and the people here.  Finding these friends means never having to explain yourself.  
 

Everyday I try and focus on what I can do, rather than what I used to do.  Having this cancer means having to hit the reset button frequently.  I choose to live and am making the best of this situation- sometimes I give myself permission to mope around a bit but then put the breaks on it.   Baby steps every day can take you pretty far with persistence.  
 

Nice to have you here with us. 
Michelle
 

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20 hours ago, sashjo said:

Hi Tom. I live in upstate New York. My oncologist is associated with Norther Dutchess Hospital in Rhinebeck, NY. I've been in treatment for two years. They originally started me off with chemo but found I had a high marker for immunotherapy. Keytruda is what I'm being treated with. When you ask if I have a plan. In what sense? The thing I'm finding very challenging is with the diagnosis I received, for the first year I just thought about dying. Not in a morbid way but in a way that I could assimilate it, accept it, and still go on feeling hopeful for whatever time I have left. All along my scans have looked good which I'm incredibly grateful for. I've had a few serious bumps in the road but at this point at two years survival I don't feel like the same person. I feel like using my time correctly is kind of an urgent thing while at the same time I feel kind of lost and don't know exactly what that means. Now during this pandemic I feel like I'm floating through life almost as if I'm in a dream. Motivation and structure feel difficult. I live on my own. Got divorced 20 years ago. My son is grown and out of the house. So your question, do I have a plan. That's hard for me to answer. I'd say spiritually to live fearlessly, be a better man, learn to give and receive love more openly. These are internal goals. The external ones are more daunting. Thanks Tom. Peace - Josh

I was thinking treatment plan, but I really like the responses you got from everyone else. Sounds like your getting standard care and its working. Take that significant accomplishment and build on it.

I'm fairly new to LC but have read many posts from the past on the forum. In my mind my plan is to move on to the next treatment, then the next, then the next if that's what required (as long I am healthy enough to take it). Other than that my sole focus is developing a life plan. I have no desire to return to my job, yet want to work. First task is to generate some income which I am confident I can via unemployed till I find a nice low paying desk job. I have steeled myself to be a cancer patient for the rest of my life, even if every scan is clean, because there will always be another scan in the future.

You have found the right place and I wish you the best.

Peace

Tom

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21 hours ago, Tom Galli said:

Thank you so much Tom. Your advice and experience really help me to understand what other people feel which in turn makes me feel less alone. As a prequel to talking about other things I wanted to say that I never looked at getting cancer as a time to give up. I love this world and I love my family and friends. The true ones. You figure that out pretty quickly. I also have a 21 year old son whom I adore and he's amazing about my cancer despite the fact that I fall apart whenever I think about what he's going through in relation to his father. On the other hand you need to let go of the things you can't control. I've learned acceptance of my impermanence and similarly of all things. I don't think most people like to take a look at that reality. One that comes for us all. In the most non-morbid way I mean mortality. What it teaches us. Those who feel its mysterious wind blowing in sooner do feel the difference. Reality has a different feeling. I'm a musician. So my live performances are all gone for the moment. So I built a small home studio to try and write, play, and keep my creativity alive. Like you I love to travel  and I'll miss that this summer too because of Covid19. But that's the least of my worries. There is much more I'd like to say but I'm actually sitting in the hospital right now getting my treatment. I feel like I write very circuitously so it is important to me to say in these two years since I was diagnosed I've had many beautiful experiences. That said feeling like a man who's landed from a different planet is something I want to learn to deal with. Or at least get accustomed to. I thank you for your reply and look forward to talking more. Peace and warmest regards - Josh

 

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