BDB Posted August 10, 2018 Share Posted August 10, 2018 My name is Becky (BDB on this forum). I was diagnosed with NSCLC, Stage III, ALK adeno in September 2017. (Like many of you, I was blindsided by my cancer diagnosis!!! I've been healthy as a horse, with NO MEDICAL ISSUES. The only pill I took daily was a multi vitamin!) I went to one of our local Urgent Doc facilities, because I knew I was getting a sinus infection (which I seemed to be doing yearly). The doctor confirmed I had a sinus infection, but said my X-ray inconclusive. (I had asked for an x-ray to be done, because I was having shortness of breath. So I thought I might also have pneumonia.) I went home, took my z pack and felt somewhat better in about 2 days. However, about 5 days later I started running a fever...between 100 and 100.8. A sure sign my body was trying to fight something. SOOO....back I went to Urgent Doc. Luckily this time, the doctor suggested we just go ahead and do a CT scan instead of an X-ray. I was very agreeable to this. He sent me to the hospital and said they'd be in touch with me as soon as they got the results. The next day/morning, Urgent Doc called and said the doctor needed to talk to me, and gave me an appointment time later that morning. (Knew this wasn't good news if the doctor wanted to talk to me.) I went in at my scheduled time, along with my husband, and the doctor said there was a tumor on one of my left bronchi. He then said I really needed to be in the hospital. So, while the doctor sent admission orders to the hospital, I went home and pack a bag. Off to Nacogdoches Medical Center we went. I was then put under the care of Dr. L. Whitley, a pulmonologist. The hospital did CT scans AGAIN, plus X-rays and blood work. Later that evening, I found out I did have pneumonia. It was behind my tumor. I was then given 2 different type of antibiotics IV (needless to say I ended up with a urinary tract infection...because of all the antibiotics). Finally the next day around noon, I saw Dr. Whitley. He said I needed to have a bronchoscopy ASAP, so they'd know if this tumor was cancer. This was Saturday, and he scheduled the bronchoscopy for Monday. He then said I could go home, if I'd be back Monday for the bronchoscopy, OR I could stay in the hospital until Monday. I chose to go home. But before I went home, Dr. Whitley brought me an inhaler option to help with my shortness of breath. ANORO ….and it seem to help the best. I was back at the hospital at 7am Monday morning, and had the bronchoscopy at 8:30am. While in recovery, and with my husband at my side, I was told it was NSCLC-adeno. I was then given an appointment to see Dr. G. Ventura/Oncologist. It was about a week or so later that I had my appt with Dr. Ventura. He said he'd scheduled me for a PET scan and a Thoracentesis (Dr. Whitley). Heck! No one told me I have fluid in my pleural cavity! The following week, Dr. Whitley did my thoracentesis (no fun), and I got the results of my PET scan …. which showed a met (1) to brain. SOOO...the next week I go to my appointment with my oncologist. He hasn't gotten my molecular testing back, paper wise. But he had understood it was done. So he was in the middle of recommending chemo + immune therapy when the nurse came in with my molecular testing results. He then changed his mind, and said his recommended treatment was Alecensa 150mg, 4 caps/2 times a day. In a couple of days the speciality pharmacy called me, and we did all the paperwork needed/got approval from insurance for 2 yrs. So (trick or treat) on OCTOBER 31, 2017 I started my first dose of Alecensa. I went to see my oncologist every 2 weeks, to have blood drawn to check my liver, for the first 3 months I was on Alecensa. Then I went monthly for 3 months. Now I'm only having to see my oncologist every 2 months. On Feb. 2, 2018 I had my first 3 month MRI and CT scan since starting Alecensa. It showed NO BRAIN MET and a 55% reduction in tumor/lymph nodes. Then at 6 months, my CT scan showed a 10% reduction in cancer. Then my 9 month CT scan showed a 20% reduction in cancer. :) Happy dances every 3 months!!! Also, NO MORE PLEURAL EFFUSION! Next scan due October 2018. I'm tickled pink I've found this forum. I'd like to be here for others starting this journey, and to also hear from other cancer patients that have already been on this journey. What meds or treatments have worked for you? What treatments did not work for you? Have you followed Dr. Campbell's/Dr. Kelly's advice and stayed away from animal protein? (I've been vegan since April 2018.) Those of you that are ALK and take Alecensa, have you gained weight? has it affected your thyroid? Link to comment Share on other sites More sharing options...
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