Lung cancer? Me? No way.......

[Lalukie]

A few months ago if you would have asked me to list 10 things from which I might die, I would have listed heart failure from watching the New Orleans Saints way before lung cancer. I've never smoked, never been around second hand smoke, and never had a direct relative with lung cancer who didn't smoke. I watched my weight and exercised. In fact, last year I ran the Crescent City Classic, a 10k race here in New Orleans, in under 60 minutes, and as a nurse practitioner, I actually counseled smoking cessation patients.

Then one day after jogging about 4 miles, I happened across an enlarged lymph node in my neck. Two weeks later, I was told I had Stage IV Lung Cancer with a low percentage 5 year survival rate. It was surreal, like the movie the Matrix with Keanu Reeves. Everything I had come to believe about my life and my future was wrong. I expected to live into my 80s like my mother and grandmother. It was a sucker punch to the gut and I was angry. I was 55 years old, and may not get a chance one day to hold my grandchild or peacefully retire and spend the 401k that I had saved for all my life.

I was even more angry at the stigma on lung cancer patients, like we are all chain smokers and somehow deserve this fate. I was angry that so much emphasis was on breast cancer when lung cancer kills not only more women but more people all together.

My mutations are negative and so are my tumor receptors so both targeted and immunotherapy are not an option for me. There will be others like me, and we need more research to find out more about curing this deadly disease. I trust in God, and together with God's help, I will get through this.

[Kmkat]

I want to say (write) something great to you but I cannot gather the words. I understand your anger because I feel the same way. I also put my trust in God and hope, I have hope.

[Lalukie in reply to Kmkat]

Thanks. Cancer just plain sucks but things could always be worse. I am working and actually feel pretty good. And with a lot of prayers and a miracle, I will be okay. I do stay prayerful and hopeful.

[Horselover13 in reply to Lalukie]

I hope you get that miracle.

[Simpy57]

Hi, I am sorry you are in this journey. Like you, i went through a lot of the same emotions and feelings as you. Your sentences could be coming from my mouth. I too have never smoked, exercised and was I thought, healthy. Last year when I was dx it was because I had some sore spots on my right leg. If it wasn't for a very caring nurse practitioner in th ER, I would have probably been sent home that night with just a treatment for my leg. I mentioned about a slight cough that I had been having and she sent me for an X-ray and that was when the masses were found. I was lucky though because I am ALK+ and am currently in a phase 1 clinical trial doing targeted therapy. And immunotherapy. It has saved my life. As of today, I currently only gave one active tumor in my liver. I am praying that my my drugs keep me stable for a long time. If you ever need to talk, I am here. Mary

[Lalukie in reply to Simpy57]

Thats so good for you. I wish it was as good for me. I hear immunotherapy is amazing and I hope the best for you. No one deserves this and it sounds like you are on your way to beating it. Good luck and God bless.

[FtB_Peggy]

You have had quite an amazing several months, so much to process and understand! I am so glad you have faith to help carry you. Let us know how things are going. Don't hesitate to call the Free To Breathe Support Line if you need any resources or information, or would just like to chat. (1-844-835-4325)

[Lalukie in reply to FtB_Peggy]

I am really having trouble with support groups or support websites like this. I see no other Stage 4 Adenocarcinoma with negative mutations and negative PDL1 receptors that are not eligible for either targeted or immunotherapy. I remain on avastin every 3 weeks to prevent growth of the small tumors I have. I am happy for so many whose tumors are operable or whose cancer has regressed or in remission.That is so awesome, but this will never be me. I know the people with stage 1 or 2 cancers are devastated but I cannot relate since there is treatment and hope for them. I am healthy now since my tumors are small but should I fail the avastin, there are no other options and no new cancer breakthroughs. So God bless you all and I will keep all lung cancer patients in my prayers but I am signing off. It really only depresses me to know that I will never be as fortunate as many of the people on this site who are so upset about their stage lung cancer which is curable when I know mine is not. I would trade places with any one of them. I try to always remember that things can always get worse and I thank God for every day I have on this earth. And for me with Stage 4 Adenocarcinoma, I have to remember Pancreatic cancer is much worse, and mine, at least, is static right now and it's not in my brain, which would be worse. That is, until the avastin fails, and they tell me it will, one day.

[Denzie Moderator Volunteer in reply to Lalukie]

Its been 5 years 10 months since my diagnosis of high grade, poorly differentiated adenocarcinoma. No known mutations. PDL1 testing wasn't even in the picture then.

From what I have read of your story you are doing the best things you need for recovery. With one exception. The bell cannot be unrung. You need to accept it for what it is and let go of your anger.

Had they discovered this at such an advanced stage as heart or cardiovascular disease you would most likely be dead. Yes, even runners and people who live healthy life styles have massive heart attack, strikes and anyeurisms and die without warning of disease. No one is promised a tomorrow.

With this dx you have an opportunity to heal broken relationships and make amends where you need.

Healing starts with you.

[Lalukie in reply to Denzie]

Thanks, I just had a melt down. I am doing better, facing life with as much hope and trust in God as I can, but most of all, I have found so much love for others in this journey. I seem to appreciate life so much more than I used to.

[GainesH in reply to Lalukie]

I'm on this same journey with you. Hang in there. We can talk, help each other. It's ok to be mad & angry. I get that way too. I'm stage 4 not going to survive. Prayers we will live longer is all I ask God for now.

[FtB_Peggy]

Lalukie, I am so sorry that you haven't found the comfort you deserve within our community. However, I completely understand your choices, you need to do what feels best to you.

I do wonder if maybe it would be helpful to try to work through one of the one-on-one peer-to-peer support lines? If you are interested let me know (you could call the support line 1-844-835-4325, or email ([e-mail]) and I could send you that contact information.

Just a thought. Whatever you choose to do, bless you on your journey.