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One Year and counting with stage IV with NSCLC...


moto

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When I moved back home from Canada over two years ago to be closer to my biological family I had no idea what the universe had planned for me and my family - certainly not the surprise that we received on March 15, 2004 when I was diagnosed at age 38 with non-small cell lung cancer with metastisies to the spine. At that point my only symptom was some back pain which i thought was from sleeping on an old mattress. My health had actually never been better I thought, so the shock was even greater when my GP told me. He referred me to my current doc who as it turned out is someone I went to grade school with and hadnèt seen for over twenty years. He is a great oncologist and I have been very happy with his care and the nursing care at Chester County cancer centre. In the past year I have undergone two rounds of radiation therapy for my spine and I am just starting my fourth chemo protocol. My chronic pain from the spinal metastisies is being managed with pain meds and steroids (the steroids have in turn blown me up like a balloon, gaining twenty pounds in less than a month ) and beyond some nausea,vomiting,nueropathy and hairloss I have been fairly fortunate when it comes to having minimal side effects. For the first time since my diagnosis I am getting a second opinion from Fox Chase Hospital in Philly. I do not feel a real urgency yet to have alternative choices for treatment but I thought it was a good time to get a new perspective on what my tests and films have to say.

My biggest challenge these days I find is dealing with being on long term disability and having so much control taken away from me in terms of my finances and future plans. It is hard to see beyond the present day to day survival to making plans for a new beginning in the future. I do not really feel like I have a future at the present and that is scary. I feel like I need to find a future for myself if i am to fight and survive this unwanted house guest called cancer. I havent been able to talk to many people who are going through what I am going through, which is why i have come to this site. I hope to find some emotional support and some new perspectives. I hope to be able to share my own experience too and to hopefully help support others like myself. I will look forward to hearing from others and opening up this world of support which I know is out there.

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Hi Michael-

We were dx about the same time only I was Stage 3A back then, in 02/05 my cancer came back and I am now Stage 4.....at the age of 37, I turn 38 next month.

I has been a long hard journey and I agree about the loss of control of your life! My daughter asked me about a concert she wanted to go to in July (she is 13 so her father or I would have to go with her). I broke down and told her wecouldn;t plan that far in advance because we didn;t know how I would be feeling.

Although you had some pain at dx, I didn't. I went in cause I feel down the stairs and thought I better be checked out just in case.

You picked a good place to come for support! Keep us posted on your progress.

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Welcome Michael,

What a wonderful place you have found here. There are heroes and experts, there are huggers and the urger onners (is that a word?)Whatever support you need - it is here for sure.

You will see I am from PA too. I am not too far from West Chester - less than an hour's drive actually - so we are neighbors.

Make sure to come often and let us all know what you need. Keep us posted on progress and decisions.

Kasey

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Hi Michael,

Welcome to the site. You will find lots of folks here in the same battle you are in. You were dxd about three weeks ahead of me last year. I also just passed my one year survival date.

Sounds like you are on top of things with a plan but I was glad to see you going to Fox Chase for a 2nd opinion. Never hurts to have the experts look at the situation and possibly get some new ideas. I also go to a Cancer Institute for all my treatments and have been really satisfied.

Keep us posted on how things are going and I think you will be amazed at the support and encouragement you receive here. Been a life saver to a lot of us.

Take care and God Bless.

CharlieD

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Hi Michael.

So glad you found this site. I hope that you will be able to give some perspectives on this subject of loss of control over the future, the finances, and the what life used to be like.

I have my own perspectives and it has been a journey. Like you, I have found this part of the effects of cancer more devastating than the cancer itself. I don't know why that is for me, but it is. Maybe because I am single and self-supporting, I don't know. For me, it has been my biggest challenge. I went through all of the treatments, emotional and physical side effects of the treatments and a part of me said okay, I am doing this and it better work. But, another part said, if it doesn't work, that's okay too, because then I won't have to worry about anything! (crazy thinking, huh?) I am on SSDI since 6 months after diagnosis. I will start medicare May 1 after 30 months of wait. Now I find out that they will not pay for medications for me and I am on high dollar drugs for this and that. I worry about these things. I worry about recurrence and if chemo would be covered under medicare.

I used to be good about letting go of what I cannot control, but I am in survival mode here and some of my basic needs I worry are not being met.

I don't mean to sound doom and gloom, but these things frighten me. I find too, that almost it is a social tabu to talk about these fears. It makes some others uncomfortable. So I am glad that you posted about this.

You are not alone. I would like to hear about your coping skills and about how you manage to make it through.

It is a heckuva ride, isn't it?

Welcome, Michael.

Cindi o'h

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Welcome Michael, Sorry you had to come to this site but glad to meet you. There are so many young people here that you will be able to talk to whenever you feel the need. Most will know just what you are going through. Best of luck with your treatments. Paddy

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Hi Michael and welcome! Boy can we identify with most EVERYTHING you said. The hardest part for my husband has been the dashing of many financial and future plans we had. He has finally come to terms with the fact that he will never be able to return to work (he has severe tremors due to his WBR)and, in turn, we will most likely not be able to build our dream home as planned. Our Memorial Day One Year anniversary date for diagnosis is approaching and it has been one memorable year. We are now looking forward to each and every day and trying not to plan too far ahead, as it may keep us from appreciating what we have right now! Well, that is how we're coping...today anyway; ask me again tomorrow and I'll likely take your head off in a fit of anger raging at the lot we've been given. Go figure! Anyway, again, welcome and please keep us posted on your victories in this battle. We're all here for each other!

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Hi, Michael, and a hearty welcome! Sorry you have to battle this disease at such a young age. You are the same age as my youngest child (of 3). My wife also has NSCLC, Stage IV. The major tumor, when discovered, was on her upper spine at C7-T1. She also had four other bone mets on rib, skull, hip and leg. The spinal damage caused her to lose some function in her left hand (fortunately, she is right-handed), but she has no other functional problem from that. She received radiation to the spine, hip and leg while undergoing chemo. That took care of the original bunch.

She has had to have radiation several times since as well as another chemo protocol. She is now 2 1/2 years out and going strong. We battle and battle and win each one so far.

There is plenty of info and warm support here so take advantage of that. Good luck to you. Don

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:) hello-michael and welcome. i am new here too-but i love the support and friends i have met on this site. they are wonderful and i always look forward to reading their posts. they are very informative people and share many different wonderful tips, stories etc with you. they absolutely are the most caring and encouraging people have ever had contact with. you will love their input and concern. god bless, and keep in touch,nancy c
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Hi, Michael,

As Beth says, it is a long and hard journey....but for me I prefer this journey to the alternative. Welcome to you. I am very sorry that someone so young is dealing with this. I'm sorry for all of us, but it does get to me when someone very young is diagnosed.

You're in excellent company, though. Looking forward to getting to know you.

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Hi Michael,

Sorry I did not post earlier, for some reason I missed your post. But I just wanted to welcome you here. I know you would rather not be here (none of us would) but you have found a great support site with soooo many caring and knowledgeable people.

You are going to Fox Chase for another opinion, that is an excellent facility.

Keep us posted on your progress. :wink:

Maryanne

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