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marc9338

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Everything posted by marc9338

  1. Julie, Great to hear from you... However, sorry about the hurdles you've had. Sounds like things are getting back on track, which is great. I am finishing my 4th week of Crizotinib for ALK mutation and feeling good. I was at MD Anderson today for a second opinion. The MDA Onc felt my local Onc was doing all the right things. The only recommendation was to have a brain MRI to insure no brain mets. He didn't feel like there were any, but wanted to rule out completely. Continuing to be positive and look towards the future. I have met A LOT of people who are doing really well on targeted therapy. I think EGFR+, ALK and ROS1 patients we are going to start seeing the stats change (get better) as more and more people are treated with the new med options and as time continues to pass. Let me know if there is anything I can do for you... Praying for you... Marc
  2. Not taking Opidivo, but sounds like things are moving in the right direction. I am Stage 4, with ALK mutation. Mine had also spread to the hips (pelvic, femur, lower spine). I am taking oral chemo only. All the aching in my hip area had pretty much gone away. I have my next scan in 2 weeks and believing there is going to be BIG improvements. Hope you stay the course and continue to improve. I'll be praying for you. Marc
  3. Randi - How are you and your loved one doing?
  4. Hang in there Dick. Keep your head up. I am praying for you... Marc
  5. Randi - take a look at this website. Might be helpful on the financial front... www.lungcancer.ord/find_support/financial Marc
  6. Julie, Good to hear from you. I am feeling great actually. I've been on oral chemo for 1.5 weeks now and expecting good results. Glad you were able to get in to some alternative therapies so quickly while you wait. Waiting is absolutely the most frustrating part, especially when you feel/know time isn't on your side. I am very interested in your alternative treatments and would like to hear more about what they are and outcomes. Keep me posted. Praying for you... Marc
  7. While preparing breakfast for myself yesterday, I had a thought... The question that triggered the thought was... why does it have to be so hard to eat healthy? After pondering on the question and figuring out what I would ultimately eat for breakfast, it hit me... There are a lot of cancer patients, ex-cancer patients, people who have cancer in their family, etc. (millions and millions). Why isn't the market place doing more to help us eat better. With that in mind, I've decided to tackle this problem. But, before I dive in to far, I wanted to see if anyone knows of other people/organizations which might also be trying to solve for this? I work in the Consumer Packaged Goods industry (big fancy words for food) and want to kick off an initiative to challenge the industry (food companies and retailers) to help us eat better. A few thoughts... 1) carve out a section in grocery stores for food choices/options approved by notable cancer centers (i.e MD Anderson, etc.) 2) encourage food manufacturers to create/distribute foods that are cancer friendly (preventive, chemo complimentary, etc.) 3) put simple and cost effective ideas/recipes in our hands (mobile app, kiosk, in aisle,etc.) 4) encourage manufactures/retailers to donate product/dollars to help those less fortunate eat healthy (control the controllable) Through and initiative/challenge like this, greater awareness of lung cancer (all cancers) could be achieved. People are watching less and less commercials on tv these days due to TiVo and the like, however people are still walking the aisle of grocery stores everyday and are a captive audience. Any thoughts? Any advice? Any connections (retailers, manufacturers)? Anyone interested in the endeavor? Thank you, Marc
  8. Julie, Checking in... How are you doing/feeling? Hope you are getting things figured out and on a path forward. Let me know if I can do anything for you. I am praying for you and your family... Marc
  9. Randi, Checking in... How is your loved one doing? Was he able to get medical treatment? Anything I can do for you? I am still praying for the two of you... Marc
  10. Great news... Keep the faith and positive attitude and you will keep winning! Marc
  11. I am in Dallas, TX. Thank you for your prayers.
  12. Julie, Thanks for joining/sharing. I was diagnosed with stage 4 about 6 weeks ago. I tested positive for ALK mutation and began targeted therapy the end of last week. I feel great... the fight is on... I love your attitude and your faith... Our God is BIG and MIGHTY and I have been on fire since day 1. I would encourage you to read the book of Mark. On the spiritual front, one thing I noticed in Jesus's teaching was... many of the people Jesus healed, he would say "your faith healed you". I believe our faith (attitude) is an equal factor in our cure. Keep the faith... Also, I love your reference of the Holy Spirit. Romans 8:26 "the Holy Spirit helps us in our weakness. For we don't know what to pray for as we ought, but the Holy Spirit prays for us with groaning that cannot be expressed in words". I heard this, this week. The Holy Spirit lives in you as a Christian and know the Holy Spirit is interceding on your behalf. Pretty awesome stuff... I will be praying for you and your family. Keep your head up and take focused on the end goal... Marc
  13. Thanks Lauraen... I've been on crizotinib for 4 days now. No side effects so far. Had a follow up with my Oncologist today. She continued to be optimistic and confident in the plan. Every day my eyes open is a gift from God. Marc
  14. Anyone have trouble swallowing the Crizotinib capsules? I am not a great pill swallower, but I have to get past this. Any recommendations? Thank you, Marc
  15. My referral from Texas Oncology was accepted by MD Anderson. I have an appointment for Aug 10th. Does anyone have any experience with MD Anderson? What to expect? I appreciate any feedback... Thank you, Marc
  16. I wasn't angry... It was a BIG (ok HUGE) shock. I was a marathon runner and a husband and dad of 2 teenagers, so for where I am in life it was a bit of a reality check. The morning after I was diagnosed I was laying in bed praying (probably crying a little) and I heard God's voice. Some people might think that sounds crazy, but I did. He said 3 words... "Peace, Be Still". I knew it was in the bible, but didn't know where and didn't really remember the story. So, I jumped up, grabbed a bible and looked it up. It was Mark 4:39. Mark... That was awesome. I thought when Jesus said "Peace, be Still" he was telling the people to chill out, but no... He was talking to the situation. Jesus was on the water with the disciples and a bad storm had come up. Jesus was sleeping and the disciples came and got him and said "do you not care we are about to die". Jesus got up and said "do you have no faith?". He then commanded the wind and the waves to stop and they did. The disciples where in amazement. At that point a BIG smile came on my face and a peace like I have never experienced before. I knew I was going to be ok no matter the outcome. I made a decision right then to live and live to the fullest. I stopped researching Lung Cancer and started reading Stage 4 Lung Cancer Survivor stories. By the way, there are ALOT of amazing stories out there of people who are living and have overcome their cancer. So, no... I haven't had a bad minute. I think I get on my wife's nerves a little as she can't figure out why I am walking on sunshine everyday considering my situation. I just say "its a God thing" and smile. In addition to how I feel, there have been many doors opened in this very short period. I've had the opportunity to partner with an old friend from high school to work social media for cancer patient care package donation. We will be making a HUGE donation the end of July to Texas Oncology. I can't wait to overwhelm them with the care package. They better find some storage . I've also had the opportunity to share my story with a hundreds/thousands of people across the US. I have a lot of great friends who attend large churches in a number of cities from Dallas to Charlotte to Cleveland to Minneapolis and beyond. My story is getting out and people our reaching out for support, prayer, inspiration, to help and everything in between. All I can say is... Pick up your head... Think BIG... Get moving... Life is short and there is a lot do... On the medical side, I was found to have the ALK mutation. I will begin taking Oral Chemo this week and I am believing (I have faith) it is going to work and work for a very long time. I can't wait to post on this site I am NED (no evidence of disease). And yes, I firmly believe I will get to post that. I believe... I am praying for you and your friend... Let me know what I can do for you... Marc
  17. Randi, I am not sure exactly what to say... I was diagnosed with Stage 4 Lung Cancer several weeks ago, which was a BIG shock. For me, I've done a lot of reading, reflecting and most of all prayer. Through that God has given me a unbelievable peace. An unexplainable peace. I am believing the God who made the heaven and the earth can also heal my body and make me whole again. In addition, I've tried to "control the controllable". I changed my lifestyle dramatically. I have always been relatively healthy. I was (and will be again) a marathon runner. But I didn't eat like I should. So, I have made dramatic changes in my diet. I have gone to almost being a vegetarian with the exception of small amounts of chicken and fish. I cut out the coffee, tea, sodas, etc. I am trying to exercise as much as possible. I can't run right now, but I am taking 2 - 3 mile walks a few times a week. I feel much better since I changed my eating behaviors. As for money to get treatment. That's one area I have been blessed (at least at this point). I am not sure what to tell you there, however this is a great place to get advice from others who might have a similar experience. You might also want to reach out to local faith based organizations, which might be able to provide some kind of monetary/financial support. With that said... Know I am praying for you and your friend along with many other people who will read your post. Encourage him to keep his head up and stay focused on the fight, whatever that fight might look like for him. Sincerely, Marc
  18. Looking to see if there are any support groups in the North Dallas (Frisco, McKinney, Allen) area. Thank you, Marc
  19. Great feedback guys. Thank you for all your input. Hope to start in the next day or two and having BIG faith the meds will have a long term impact.
  20. That's awesome... Really glad to hear of your good results! I am walking on sunshine today... Don't want cancer at all, but if I have to have it I am glad its a known mutation with available options. God is doing something BIG! Thank you for sharing... Marc
  21. My oncologist just called with lab results. I tested positive for the ALK mutation. She was very upbeat and positive about the targeted therapy options. I am going on Crizotinib immediately. Anyone else on Crizotinib? Side effects? Success to date? God is good... Praying this med does the trick! For a long time Marc
  22. Thanks Tom... I am feeling great, just trying to understand and anxious to get moving. By the way... Noticed you were a fellow Texan. I am up in the McKinney/Propser area. Small world...
  23. Thanks guys. I appreciate the quick feedback. One more question... In regards to the Targeted Therapy, can it shrink/eliminate tumors or does it only keep them stable? Thanks Marc
  24. Curious on types of treatment plans... My Oncologist has not yet decided on treatment plan, but seems to be leaning towards a targeted therapy option. I've heard people say they've had chemo and targeted therapy together. Does it sound right to only go down a targeted therapy path?
  25. My oncologist has sent my biopsy for testing. I am a little disappointed as to how long its taking to get answers back. How long did it take to get your mutation results back? I had a PET scan on Friday. I would say the results were good. The cancer is still in my lungs, pelvic/femur bones and has jumped into lymph nodes around the lungs. However, everything is very small and has not moved to any other organ. I am hoping we can get moving on some meds very soon in hopes it can knock some of this small stuff out. Also, I have changed my eating habits dramatically. I've gone to mostly fruits and vegetables, with some chicken and fish. I've also increased supplements focused on immune system. Marc
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