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I was diagnosed with stage 4 Large cell neuroendocrine lung cancer. A  large mass in my right upper lung, 3 in my ribs one on my back and a couple in my pelvis.  Last Oct. 2018 i noticed i was coughing up blood for 3 days in row. I went to the VA hospital an x-ray later I had a mass.  2 weeks later and a CT and i had suspected lung cancer. Then came the PET and biopsy, cancer for sure.  It was a shock I felt so powerless.  The doctors all looked so discouraged as the explained the disease to me.  I would not let them give me a prognosis all I wanted was a treatment plan.  I felt like my life was over and everyone I know looked me different now.  Radiation 5 days a week for 6 weeks groundhog day every day.  The next step was chemo and weeks sickness and yuck like i was getting sick for the first time.   The winter was very cold here in the north west and i just prayed it would end. I am 6 months into this and i am grateful i am still here.  I just turned 51 and i was told i had 6 months to live.   The worst part of this is the panic that takes over when i let my guard down.   I decided to find a place like this so maybe I did nit have to feel so lonely.  And if i am being honest i feel  better today than when started this trip.  If anyone can relate to any of this please let me know.

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Hi Loren.  Welcome.  I’m sorry to hear about your diagnosis.  I can relate to the panic that sets in when you let your guard down.  I can also relate to the exhaustion keeping that guard up can bring.  Feeling better today than when you started is amazing.  You are definitely NOT alone in this.  You’ll find plenty of people here willing to answer your questions and support you. 

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Hey Loren, welcome here. You have definitely found the place to help with loneliness - everyone here is in a similar situation or caring for someone in a similar situation.  I'm glad to hear that you are feeling better than when you started your journey. It's hard to feel positive about continuing the fight when, physically, you feel like crap.  May I ask, what, if any, treatments are you having now? Still chemo?

I dislike when people are given their supposed death sentence.  My mom felt the way you do - don't tell me how long I have, just tell me what I need to do so I can get started.  Luckily she maintained that attitude through her original diagnosis in 2015 and her recurrence in 2017.  

You are going to hear from some of the group's longer term warriors.  For me, their stories and support helped me to get through the panic and darkness I felt (and sometimes still feel). Although there are not a lot of large cell folks currently on these forums, you are still in good company.  This is a great place to share your frustrations, fear, and ask questions.  I hope that we can give you what you are looking for. Please don't hesitate to reach out to us. 

Take care,

Steff

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Thanks for the support! I am receiving immunotherapy KEYTRUDA and one more type of chemo.  I cant remember the names of the chemo.  This is the second formulation of chemo I have been on.  The first set of chemo did nothing  good for me.  Right now i am recovering form the last chemo I a covered with an itchy rash. I had to cut back to one chemo because I was starting to have problems with my hearing. I told the doctors that I did not want risk losing my  !  It seems as if i can tolerate this treatment.

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Ugghh, the itchy rash I hear is such a pain.  My mom had it when she was on Keytruda + Chemo...it's probably the most common side effect.  I'm glad to hear that you qualify for immunotherapy and that you are tolerating the treatment so far...it has done so many great things for so many people, my mom included.  

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Hi Loren

Its nice to meet you.  Yeah, I understand where you are coming from. I’m a 51 year old never smoker diagnosed with Stage IV ALK Positive NSCLC. I had bone Mets in the same places you did but other than a persistent cough, there were no symptoms until my diagnosis in September 2018. 

Initially the onc had a very poor prognosis of 6-12 months. We started making end of life preparations.  It was a horrible time.  In October, molecular testing revealed a rare oncogene- ALK. We discontinued the Carbo/Alimta/Keytruda   

I saw an Integrative Oncologist who essentially helped us put life back on track. He gave us lots of reading material including Stephen J Gould’s eassay “ The Median isn’t the Message”.  If this guy could be the odds then so could I.  

Today I’m taking a targeted therapy for which I am so grateful. It’s an effective drug with some side effects that aren’t even worth complaining about given the big picture. 

I believe the will to live is stronger than any physicians prediction.  (See Viktor Frenkel’s Man’s Search For Meaning). Diagnosis is not prognosis! 

Glad to have you here. 

Michelle

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I did the genetic test on my cancer but unfortunately no help there. The docs can only guess how much time.  I will get as much time as i get so I take it as motivation to do get the important stuff done.

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Hi Loren. I'm glad you found us. This site has been my saving grace since my diagnosis. I'm almost 3.5 years into this journey. I've had two recurrences and a second cancer diagnosis during all of this. During my first visit to my oncologist, he gave me the survival stats and I cried for days. I finally wadded up that paper, threw it out and never looked back. He and I have a deal - I think stats are crap so he doesn't give them to me. It's hard not to wonder what if, when, etc. I ended up taking anti-depressants and those have kept me from moving to that dark place. 

Your attitude will be your biggest boost. Medicine can do so much, but your mindset matters more.

We're here so let us know how we can help you.

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Loren,

You are not alone.  Everyone here has heard some diagnosis and, regardless of the stage or type of cancer, felt the shock, despair and loneliness that comes with such news.  But know that you are not alone in this and that your story isn't written until you write it.  I won't tell you to "suck it up" or "tough it out" because I wasn't good at either, but I shared with people both here and with my family and friends and that was a real help for me.  You can also choose to see a doctor about depression, panic or anxiety and treat that as well.  Susan is correct that your mindset matters.  This disease needs to be fought on many levels.  Let us know where we can help you out as there is a lot of experience here in this forum and some of it speaks to wonderful outcomes from terrible circumstances.

You'll also be in my thoughts and prayers (two things I happen to believe in).

Lou

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