My Nonprofit Reviews
Review for Lung Cancer Alliance, Washington, DC, USA
Lung Cancer Alliance understands what a patient needs. They go above and beyond to help all of us suffering from this exhausting disease.
I was diagnosed in February 2018 with Non small cell lung cancer. It was devastating to me and my family. We went through the typical stages that most go through after learning of the disease that had taken over my whole body without me even knowing. How can this happen? Hiw can something so evil invade your body without you ever knowing?
Lung Cancer Alliance as well as my family and many many friends made a difference. They filled my heart with hope and gave me strength to fight.
The diagnosis of NSLC was real. I'm "one if the lucky ones" they kept saying. I have a mutation that has targeted medicines available to combat this invasion. I have EGFR exon 19. Lol go ahead and google it. That's how I learned about it. I did my research....chose the medicine and course of treatment that I felt was best for me. After all I had 3 months to live if left untreated. What did I have to lose? My Oncologust gave me my treatment options. 4 medicines that may help stop the progression of this ugly invasion. I chose Gilotrif or better known as Afatinib. To me it was the logical solution. It was a very harsh and strong medicine. It works a little different than the other TKIs (google it) that I had the choice of. It has severe side effects like most and is my life saver.
After the diagnosis and then a battle with pneumonia then to top it off several pulombany ambulisms, which landed me in the hospital, it was a obvious decision for me! I must fight! For those who know me.. yes I'm very competitive.. it drives me. Most if that is the need to be a better me. Now I really know this sounds crazy lol but being competitive was the emotion that drove me to will this cancer out of my body.
My little blue pill is a miracle medicine for me but... it was more than the little blue pill. It was family, friends, a community! A TEAM! I always told all of the soccer teams I managed over the last 19 years that it takes a team to run a team. Well.. it's TRUE. The prayers and uplifting moments got me through some pretty rough patches. "Stay positive" I kept saying to myself. Keep eating, keep moving! I have much to live for!
Back to my stats.. diagnosed in February..started Afatinib on April 3rd and on May 24th my pet scan showed NED. Ok I'll give this one to you..you don't need to Google it ;-) No Evidence of Disease. Is that just the craziest news. I made my oncologist repeat it 3 times! 50 days on Afatinib and a life changing regimen, it was going away. How did that happen?
I'ts a daily struggle combatting the side effects and wondering if IT'S back in between the countless blood tests I do weekly and scans every 8 weeks or more often if needed. Every little change in my body scares me. Is it the cancer or is it just me getting old? Is it pain from the cancerthat penetrated my bones? It really takes a toll on your body! Scanxiety is a thing :-(
I'm off of blood thinners ×which was a twice a day I injection to keep the blood clots from coming back. 8m no longer on pain meds like morphine and oxy. They are amazing drugs when you need them but I'm happy to be free of them. I go to the gym several times a week now. I take walks without being tethered to oxygen now. I can out on makeup and go out in public without worrying about everyone looking at that horrific rash that the meds cause. I am adjusting to my new normal but never taking anything for granted. Life is short. Live it!
We all have story's that needs to be heard. Spread the word with hope and change! Technology and advances are our best friends. But we need help and funding to bring awareness. We need to find out why we are getting this terrible invasion.
Spread the word! If you have lungs, you can get lung cancer. Stop the stigma. Don't leave us out! We need just as much help and support as those with other types if cancer!
Thank you LCA!