Visit to the ER
Faith, Family & Friends
by Lysa B
10M ago
As a stage 4 lung cancer patient, I’ve been very lucky. I haven’t had to go to the ER since 2012. Until this week. As many of you know, I traveled to Pensacola on Tuesday to meet Joe and see Godsmack. I had a stuffy nose when I woke up Wednesday morning thinking it was from the AC blowing on my head all night. I developed a slight cough by that night, but otherwise felt fine. Thursday I felt good enough to do a little yard work and cook around 4pm. My cough was getting worse but my temp was still 99⁰ and I tested negative for Covid. Two hours later I decided I should go to urgent care but wasn ..read more
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1st Scan on NVL-520
Faith, Family & Friends
by Lysa B
11M ago
Time flies! It’s been 8 weeks since I took my first dose of this phase 1 clinical trial NVL-520. The trial dictates I have a CT scan of my chest, abdomen, and pelvis every 8 weeks to see if it’s working. I’m able to have scans at home, then I travel back to Nashville to meet the trial Dr and go over results. The results were in my patient portal 2 days earlier and I debated looking at them. Ultimately, you know I did! Many of my lymph nodes shrunk a little and some were stable. The nodules in my left lung, right lung, and abdomen have all shrunk too! I’m so happy! The largest booger in my abd ..read more
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Liver update
Faith, Family & Friends
by Lysa B
1y ago
My trial doctor wanted me to have labs done this week at home to keep an eye on my elevating liver enzymes. After reading on the do’s and dont’s on lowering my ALT, eliminating alcohol and sugar were the only things I could do. Alcohol is fine but SUGAR?! Ugh So I haven’t had alcohol for 2 weeks but only stopped sugar on Tuesday because it was Joe’s birthday week. I had labs on Wednesday. Thanks to all of you that shamed my liver and told it to suck it up my ALT went from 113 to 51 WOOHOOOO!! My AST also dropped from 83 to 55. I did add more veggies but I really think it was just my body adapt ..read more
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Cycle 2, Day 1 begins
Faith, Family & Friends
by Lysa B
1y ago
Today is the last day of Cycle 1 of the trial I’m in (NVL-520). There are 28 days in each cycle. Today was a quick in & out. Up at 4:30AM for our 6:35 flight and we arrived at Sarah Cannon at 8AM. I had labs, saw the PA, then the trial nurse. It usually takes close to 2 hours for labs results, and if everything is OK they give me my meds and I can leave. Overall, it’s quick and painless and mom and I shared a Nashville hot salad. My liver enzymes (ALT & AST)have been rising each week since I’ve started this new drug. That’s very common with these type of drugs. Most of the time the bod ..read more
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It’s been a busy 3 weeks
Faith, Family & Friends
by Lysa B
1y ago
I have so much to tell you! Buckle up buttercup. First, surgery went great, and I recovered quickly with no issues. My incisions are almost completely healed. My mom and I went to Nashville the 15th & 16th to meet with the PI of the trial, Dr. Melissa Johnson. She was great and went over the basics then had me meet Beth, the clinical trial coordinator. She had more details regarding logistics and the trial schedule each week. For the first 4 weeks, we’ll go weekly, then every 2 weeks, then every 4 weeks. Some trips will require an overnight stay and some we can fly in and out the same day ..read more
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Surgery and Trial Update
Faith, Family & Friends
by Lysa B
1y ago
Today’s the day! I’m on my way to Moffitt to have laparoscopic abdominal surgery so they can get tumor tissue. When the surgeon looked at my scans she saw at least 5 other tumors that weren’t noted by the radiologist. What else has he missed? They’re in the omentum which is the lining in the front side of your abdomen. Thankfully they’re fairly superficial and she’s confident she can get enough tissue for both NGS (next generation sequencing) to tell us what is causing this progression and also have enough tissue for the trial. Regarding the trial, after looking at flight options and the ease ..read more
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Resilient little shit
Faith, Family & Friends
by Lysa B
1y ago
It’s crazy to think just 2 weeks after I posted this on Facebook I started having back pain. 5 months later I was told I had lung cancer. I just don’t understand how you can feel so good and so strong but have extensive cancer growing in your body. I feel like that now – I lift weights 3-4 days a week and ride my bike at least 70 miles a week. I may feel a little more tired than normal some days but overall I feel great. But somehow there are at least 7 new tumors growing in my abdomen. If cancer wasn’t such an annoying ass, I’d be impressed by its resilience and adaptability ..read more
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Changes are coming…
Faith, Family & Friends
by Lysa B
1y ago
May 6th will be 10 years that I’ve been on Xalkori – my targeted therapy drug effective at halting ROS1 positive cancers. This was a miracle drug for me. It completely wiped out my 16 tumors that were trying to take over my lungs at the time. It kept my disease dormant for 5 years before a few little boogers slipped through and we had to bring in reinforcements by adding chemo to the mix. I first did 6 cycles of carboplatin and pemetrexed, then have continued with pemetrexed for the last 5 years (on May 16th officially). This drug cocktail has not been easy, but it definitely could be much wor ..read more
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Exciting funding news!
Faith, Family & Friends
by Lysa B
1y ago
EXCITING NEWS! (It’s long but worth it) As most of you know, lung cancer is EXTREMELY underfunded when comparing lives lost. It kills more than the next 4 cancers combined. The Department of Defense funds specific research called Congressionally Directed Medical Research Programs (CDMRP). One of them is the Lung Cancer Research Program (LCRP). A brief history: Since LC was added in 2009 it only received its alloted $20 million for one year. It then went down to $15m, $12m, then only $10 million a year for the next four years. This affects the programs ability to fund innovative research pro ..read more
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Another year and I’m still here
Faith, Family & Friends
by Lysa B
1y ago
“You have lung cancer, and it has spread to your spine.” I’ll never forget hearing those words. I went to the ER for relentless back pain that I’d had for 4 months. I thought maybe I had a herniated or bulging disc, but lung cancer never entered my mind. I was healthy, always tried to take care of my body, and I was only 40. I have been blessed to meet amazing people because of my cancer. Some of which have become close friends. I have worked on advisory panels, speaker’s bureaus, and traveled to dozens of conferences to educate myself so I could help others. This has been my way to feel usefu ..read more
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