Diagnosed With Stage IV NSCLC, But Still Bathing By Myself!

by Marven "Biga17133"

Our guest blog post today is from Marven, "Biga17133". He is a stage IV, Non-Small Cell Lung Cancer patient that was given no chances of survival. Diagnosed with an inoperable tumor involved in most of his lung, he wasn't given any real hope. But as he will tell you, he's still fighting it, kicking it, and still taking a bath by himself. That's looking at the positive side of everything! This is his journey in his own words. Editor


My name is Marven but some call me Allen which is my middle name. I am going to be 52 this May. I have a wife, son, 4 step children and 2 step grandchildren (sunshine and buttercup)my nicknames for them. My son and his wife are expecting their first child on May 31, 2018. My Journey with non-small cell lung cancer began in Sept of 2017.

After a month of having a severe cough that would keep me awake, I went to see my primary doctor. I was concerned as I have been a smoker over 35yrs but Dr. P felt that I was having an allergic reaction to my blood pressure medicine. She changed my medicine and assured me that I would feel better in a week and made me a follow up appt. Well, 5 days later I went to the ER because I was not any better and my head felt like it was going to explode. I've never experienced such pain and misery, I couldn't sleep due to the coughing and didn't know how much longer I could take the pain. The ER doctor agreed that my primary doctor's diagnosis was incorrect and felt that I had a sinus infection and gave me antibiotics. Needless to say that by the time that I followed up with Dr. P, I wasn't getting any better. For weeks I've had very little sleep and I just wanted to get help! They did a Strep test, Why not at this point of misdiagnoses. 

Then Dr. P decide to ordered a Chest X-Ray. Immediately the technician, breaking all the rules, told me that it was really bad and that my doctor should have ordered this weeks ago as you could not even see my right lung. The doctor now thinks its pneumonia and starts treating me for that. The very next day she calls me and says that after studying the x-ray with others she can see a mass and wants me to get a CT scan then see a pulmonologist week later this doctor does a scan and orders a biopsy which takes a few more weeks. When the doctor goes in he discovers three masses in my right lung and lymph node. The news is not good, he tells my wife and son that I have non-small cell lung cancer and it is inoperable. I have maybe 3 months to live unless I have treatment. He sent me to the Cancer Center in which it took another week to see my doctor there. I was frustrated to say the least when you're told you have very little time you don't want to waste any treatment time getting to the treatment and the lack of urgency made me feel like my life didn't matter.

Marven And Wife

Dr. S, my Oncologist, gave me an initial plan of chemo and immunotherapy with the hope of extending my life. He told me that I had 6 months to maybe 1 year if lucky and that I might make the birth of my first biological grandbaby. 

When the pathology came back I found out that my PDL1 gene count 100% which made Keytruda a perfect treatment for me. The doctor also ordered Zometa for my bones as we have found at this point that cancer is also in my spine and without Zometa the tumor could damage my spine and I would be paralyzed and also a tumor on hip and decided no chemo but Keytruda infusion would be the path but Before that started he consulted the radiation doctor and I received 5 treatments to my chest to help my cough. This gave me throat burn, chest burns and made eating and swallowing nearly impossible. This is when I experienced my first weight loss.

After my third treatment, my hip started hurting so bad that I couldn't walk. The radiologist thought he could help and I had 5 treatments on it. Still working as I am walking with little pain. In whole the doctor feels that the infusions are working as some tumors have shrunk and others have formed So far I have had 8 Keytruda infusions and they are not to terrible. Sometimes I feel ok and others it takes a day or two to recover from being tired.

Marven The Fighter

It is shocking when you see the bills sent to your insurance. Thank God that I have insurance because at over $12,500 each treatment I would never be able to afford it. Even so, you are left with balances that can break you. At the same time, I am transitioning from short-term disability to long-term and cobra insurance. Talk about stress! And long-term is taking its time approving me. I need to be approved in order to keep my life insurance through my work. I'm only mentioning this because the lesson I've learned is to get your life insurance outside of work so this won't be on you when a crisis hits and you end up losing your job due to illness and then your life insurance as well.

The one thing I have noticed is the need to know more and that there may be options out there if the infusions stop working that were I began my search and found WhatNext a support group with people that are going thru the same thing and even the same type of cancer. What I have learned is that I am in control, I make the decision on what's best for me and to ask questions and not to be afraid to say something if I feel it's not best or to get another opinion. The support I feel from whatnext has been key to keeping me sane just knowing I'm not alone in the fight to BEAT this and others understand my sorrow and fears, and my desire to Win is Priceless, still taking a bath by myself biga17133

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