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...
Tom Galli Posted August 11, 2018 Share Posted August 11, 2018 BDB, Welcome here, and an ALKie joins us! Wow, the pace of research has really picked up and thankfully, you are the proof. When I was diagnosed in 2003, Stage IV disease had only one variable. Everyone received a chemotherapy doublet but the variable was conventional radiation. Now, everyone and everything is the variation and you are a walking miracle. We are tickled pink to have you! I'll let others chime in on their targeted therapy experience. My treatments were all "old school". What works for me is living and it obviously works for you. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted August 11, 2018 Share Posted August 11, 2018 Hi Becky and welcome. That's quite a tale of cancer adventure! It sounds like the Alecensa is really working for you. YAY! My cancer was stage 1a, so no treatment other than surgery. Keep us posted about your success. bridget O Link to comment Share on other sites More sharing options...
BDB Posted August 11, 2018 Author Share Posted August 11, 2018 Hi Tom, Wow! 2003! Unbelievable! I'm also periodically on Inspire, and have been seeing more and more Stage IV survivors! Old therapy or new therapy....it worked for YOU! That's all that matters. So very happy you had good results with your treatment. I'm hoping I'll be cancer free when I have my next scan, October 2018. If so, I'm hoping to give my liver a break from this Alecensa for awhile. (Naturopath has seen lately that my liver is very stressed.) However, my oncologist says that if Alecensa does get rid of my cancer, I'll need t take it the rest of my life! So then the question becomes...what do I want to die of? Cancer? Liver damage? Thank you for the warm welcome! It's much appreciated Becky Link to comment Share on other sites More sharing options...
BDB Posted August 11, 2018 Author Share Posted August 11, 2018 Hi BridgetO! You were SOOOO lucky to have caught your cancer at stage 1! The majority of people never know they have lung cancer until they are stage III or IV! YEA for you!!!!!!!!!!!!! Thank you for the YAY! I'm doing the happy dance every 3 months. Just overjoyed at the wonderful results I'm getting on Alecensa! Becky Link to comment Share on other sites More sharing options...
Qnrlene Posted August 11, 2018 Share Posted August 11, 2018 That is amazing I want my dad to go completely vegan but he doesnt understand the importance hes going according to what the dr says what is ok for him to to do. I buy all organic fruits and veggies for him. I really admire your your story it is blindsiding and totally unexpected. Any advice would be extremely helpful you are an inspiration to us all! Link to comment Share on other sites More sharing options...
LexieCat Posted August 11, 2018 Share Posted August 11, 2018 Hi, BDB, and welcome. Like Bridget, I'm an early stage (Ib) cancer survivor--mine was caught by screening (smoking history). So I'm not a lot of help in terms of drug or radiation therapies (I had only surgery and now receiving twice-a-year scans). But I'm so happy to hear your response to treatment has been so great! Qnrlene, welcome to you, too. I've been a caregiver for people with cancer or other serious conditions and it's really important to remember to take care of yourself, as well. I'd suggest not pushing for the "all vegan" for your dad. There's no credible evidence that specific diets (no meat, no added sugar, etc.) do any good. The challenge for most people undergoing cancer treatment is to get enough to eat, considering the nausea and effects on taste that can accompany treatment. I'd suggest encouraging him to eat whatever he finds appealing. Fighting cancer takes a lot out of a person--no need to force lifestyle changes that aren't necessary or helpful. Glad you both found these forums--there are a lot of terrific folk here who can offer a ton of experience, knowledge, and support! Link to comment Share on other sites More sharing options...
LaurenH Posted August 23, 2018 Share Posted August 23, 2018 Hi, Becky, Welcome to LCSC. I'm happy to see that you've already connected with several of our members and moderators. This community is an invaluable source of information and support. We do have a discussion forum dedicated to ALK topics. Here's the link: http://forums.lungevity.org/forum/53-alk/ That may be the best place to post ALK-specific questions. But please feel free to explore the discussion boards and join in on any conversations that resonate with you. I am also happy to provide you with additional information about LUNGevity's support and education resources, should you be interested. We're here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
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