Visit to the ER

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’t sure I could drive so I called Stew to pick me up. We started to urgent care but he thought maybe we should go to the hospital instead. Once I arrived my temp was 103⁰ and my oxygen was 90%.

They took an X-ray which didn’t show anything but said they were admitting me and starting IV antibiotics because my WBC was 18k. The ER dr looked at me like I was dying with pity in his eyes. They see stage 4 lung cancer and immediately think this is fatal for me. It reminded me of when I was first diagnosed at 40. All the residents looked at me like that.

At that point I was negative for COVID, the flu, and RSV. I dreaded being admitted but knew it was where I should be.

My mom got a ride from my aunt and stayed in my room for an entire 24 hours. She just had knee surgery the day before 😞 and had to sit in a hard chair all night long. I’m so lucky she’s my mom.

Long story, slightly shorter, I will be getting out tomorrow evening (Monday). After all the other tests coming back negative (viral panels & cultures) the CT showed a hint of pneumonia in my lower left lobe. He said we caught it early and I might have become septic if I waited another day. They gave me 2 broad spectrum, hard-hitting antibiotics, and I’m doing a 5 day cycle of zosyn. I started steroids yesterday WOOHOO! I love and hate steroids. I feel much better but was up until 3am. I was able to walk a lap around the floor today with O2 and it only dropped to 93 and that was with taking the whole time. So no more oxygen! 😊

Joe was still working in Alabama for a few more weeks so he had to drive 8 hours to get home. Thanks to Dave for finishing his trucks so he wasn’t stressed out. Thanks to Stew for spending the first night with my furbabies and my friends for visiting them and giving them potty breaks until Joe could get there. We have such a great support system.

The hospital staff has been great. The nurses, assistants, and doctors are very nice and accompodating. I’m at Morton Plant which is in Clearwater and I have an amazing view of the intercoastal and 2 bridges. So I can sit by my window and watch the boats all day and the beautiful sunset at night. I’m impressed with the food menu and quality too.

It’s game #1 for the Niners today so Joe brought my earrings, socks, and his gnome for good luck. They looked great! 1-0 🏈

While I know this was a critically necessary stay, I hope I don’t have to visit the ER for at least another 11 years.

Steroid flushed face

My love

Ready for the game

Breakfast

Thanful for zentangle to pass the time

Awesome sunsets

Potassium pills are HUGE

My stash from home

Chicken rice bowl for dinner

Daytime view of the tour boats

Mom in the ER

1st Scan on NVL-520

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 abdomen was 5.0 x 4.8cm and is now 3.3 x 3.1cm. The PA said they have typically been seeing shrinkage in the first few scans so I’m hopeful they might still get smaller. As long as they remain stable I’m happy. We can cohabitate just don’t kill the host.

Also, I feel really good. I thought I felt good before (even with 7 tumors growing inside me) but I have so much energy now. It’s amazing what we get used to and what we accept as normal.

If you’d like to see a little video I put together you can click here (you do not need a Tiktok account to watch it).

As always, thank you for your support, prayers, and love. Carry on!

Liver update

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 adapting to the new drug. It has had to work really hard the past 12 years you know. Of course I asked my oncologist if she thinks this had anything to do with me eliminating my 4 vodka sodas the past two weeks and she said No. She has seen this with several other patients and it’s common to go up and then stabilize. I was hoping for stability but I’m elated it dropped down 55%.

So of course I bought some gummy candy.

For now, I still feel amazing – no side effects and I’ll have a scan at the end of the month.

Cycle 2, Day 1 begins

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 8. I had labs, saw the PA, then the trial nurse. It usually takes close to 2 hours for lab results, and if everything is OK they give me my meds and I can leave.

Overall, it’s quick and painless and today mom and I got to share a Nashville hot chicken salad at the airport. It’s delicious!

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 body adapts and they level off, but sometimes a short break may be needed for the liver to recuperate.

My ALT started at 38 and has consistently gone up 10-20 each week. It’s now up to 113. The high end of normal is 55 so this is so a grade 2 side effect. The trial allows 2.5X increase before requiring a break so my buffer window now only 24.

I don’t have much control over this besides avoiding Tylenol, smoking cigarettes, and alcohol. I didn’t drink anything this last week but I’m going to abstain for a few more weeks to see if it makes a difference. I’m guessing it won’t but it’s worth a try.

ps: Tampa airport has cool art

It’s been a busy 3 weeks

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.

Next, NGS (next generation sequencing) FINALLY came back Friday but my dr was out of town and I was told it would take days to get the report uploaded to my portal. Why bother telling me it’s in?

So Wednesday, (when my doctor was returning to the office) I sent a message begging them to send me the report. This is the detailed analysis of my tissue’s DNA and RNA to tell us why my treatment stopped working and what is likely to work best moving forward. My onc called to say it showed S1986F as my resistance mechanism and that NVL-520 will be a good option. That’s the Nuvalent trial I’ve been accepted into, so YAY! This is great news and we seem to be on the right path.

I had my CT and my brain MRI last week. Thankfully, my brain remains “unremarkable” but not only have the tumors in my abdomen grown but my lung tumors have decided they needed to grow too. Not great news. My last chemo was 4/24/23 and even though it probably wasn’t doing much to control the cancer, it’s been a little stressful without it. I feel like things are growing like a wildfire and I’m anxious to start a new drug. I also took my last targeted therapy pill today. I’ve been on it for 10 years and I have mixed emotions about letting it go.

I got the call earlier this week with a date to do more screening – an EKG, labs, and an eye exam. So we will be flying to Nashville on Monday June 5th at 6am for an 8:45 appointment. Then they submit those results to the sponsor, wait for final approval, THEN I should be taking my first pill of the new drug on Thursday the 8th. It will be a LOOONG day of labs every few hours. I will also have to do labs Friday, 24 hours after I’ve taken the first pill. So mom and I will be there Monday – Friday this trip. I’m so thankful she is able to go with me and keep me distracted and help me absorb it all. We plan on laying around the pool for a few days in between. And of course, eating yummy food.

We just went through the dates for the next 3 weeks and booked all our flights. Sarah Cannon books the hotel for us so that’s nice. It’s a lot! But I’m so happy things are finally happening. It took 5 weeks from the 1st day I contacted them to get all my records sent, reviewed, and accepted and I’m told that’s fast. I was literally emailing every few days to keep things on track. How does someone that’s sicker than me, or not as savvy, even deal with this shit?

I will keep you posted on the events of next week. Thank you all for your love and support.

Please pray, chant, dance, or send good vibes my way. This drug needs to give me at least 10 more years on this earth.

Surgery and Trial Update

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 of getting in and out of the city, we decided Sarah Cannon Research Institute in Nashville was our top pick.

After reviewing my medical records they called to set up an appointment with Dr. Melissa Johnson who is leading the trial there. I will be meeting with her on May 16th and hopefully officially be accepted.

I’m not sure how quickly I’ll begin the trial at that point. I’m hoping the following week. It will then require weekly travel to Nashville.

Having progression is scary but I’m hopeful this trial is a good fit for me unless something crazy pops up from my biopsy.

Physically I feel good except for some occasional bloating and fullness that just started. Some of the tumors are near my intestines. But I was able to go on a 24 mile bike ride yesterday.

Mentally I’ve been good until Monday when my dog was sick and ultimately died. That just brought all the shitty feelings back out but I feel good today. I’m confident things will go well today I’ll be home sleeping in my bed tonight.

Thank you to everyone that called and texted and sent me your love. Thank you to my parents, husband, and kids for always supporting me while dealing with their own scary feelings. Thank you to my aunt whose going to stay the night with me and be my nurse. I love you all so much!

I’ll keep you posted.

resilient little shit

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.

Changes are coming…

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 worse, and it has given me a great quality of life (minus 4 days after infusion). I’ve learned how to deal with the side effects and have become very attached to my little pink pills.

I have chest and abdomen CTs every 3 months and a brain MRI every 6 months. Thankfully my brain has remained “unremarkable” since diagnosis. In February, the radiologist noted 2 nodules in my peritoneal cavity. The peritoneum is the large membrane that lines your entire abdominal cavity – it basically holds all your organs in place so they don’t just flop around when you move.

They always compare your current scan to the previous scan and measure any tumors for growth. Well, looking back those 2 nodues were present in November as well but were harder to see because of the small bowel. There’s a lot of stuff in there and of course your bowels are always moving so it’s possible for things to be hidden occasionally. Based on the new measurements, one of those nodules has grown approximately 50% in just 3 months. So after talking with my new oncologist – that I just convinced I’ll only need to see him every 3 months- we decided I should go to Moffitt Cancer Center in Tampa and look into my next treatment options.

If you know me AT ALL, then you know of course I’ve been researching for weeks – talking to other patients on various trials, reading scientific journals, and weighing all the potential side effects and efficacy of each treatment available. Did you catch that last part? “EACH TREATMENT AVAILABLE” means I have more than one option! Just a few years ago this wasn’t the case and I needed chemo to buy me more time until more drugs were developed. And that is EXACTLY what it did. Thank you science for giving me more time.

My mom and I met with Dr. Ben Creelan at Moffitt yesterday. He looked at my scans, discussed a biopsy (which is crucial to have upon progression) and he called a surgeon to look at my scans with him. She agreed she could do a laparoscopic surgery to get the tissue we need to do NGS (to determine any resistance mechanisms), send tissue to the trial, and hopefully have enough left over for the ROS1ders to use to develop cell lines (this will help with future treatments and resistance issues).

That’s a lot of tissue to go to a lot of places, but it’s over 3cm so I pray it can happen. We will meet with the surgeon on Tuesday and I’m hoping to get a surgery date quickly so I can still go to DC on May 4th. Please pray, cross all your fingers and toes, or do a rain dance that this trip can still happen.

I think the best option for me will be a phase 1 trial by Nuvalent, NVL-520. Other ROS1ders have been responding well to it and the best part is it seems to have no/minimal side effects for everyone so far. I will have to travel for this trial and after looking at flight options and the ease of getting in and out of the airport and to the cancer center, we have decided that Sarah Cannon in Nashville is my top choice.

Having progression always sucks and I’ve been SOOO lucky that this is only the 3rd time for me in 11 1/2 years. All my treatments have worked exceptionally longer for me than average and I’m hopeful the next one will too.

Like I said, I’m VERY attached to xalkori. We’ve gone through a lot in the last 10 years. It’s going to be like mourning a relationship when I have to take that last pill. It’s helped me see my daughter graduate high school, watched my son find his way, and allowed me to travel and LIVE this amazing life I have. I still have so much to do… boats to drive, trails to ride, beaches to walk, and family to love.

I’m grateful for all of your love and support on this crazy journey. I will keep you updated as I get more info and a plan is in place.

Exciting funding news!

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 proposals. They had to reject 70% of proposals rated “excellent” by consumer peer reviewers. This is costing lives.

Thousands of advocates including organizations, patients, and caregivers, came together to slowly increase that number. Usually by $2 million a year and eventually getting back to $20 million in 2021.

This was huge! Lung cancer research has come so far in the last 10 years. Imagine what we can do with this additional research money for the deadliest cancer.

In 2022, we made a bold ask of $60 million for the Lung Cancer Research Program. We held over 200 meetings with Members of Congress in May at the GO2 Foundation for Lung Cancer’s Voices Summit and had several other meetings over the summer. Other cancer advocacy organizations joined us in urging Congress to prioritize cancer research, early detection, preventive services, palliative care and telehealth services in the year-end legislative package to accelerate progress against the disease. 

They just approved $25 million for 2023!!
This is because we fought hard, we shed tears, we told our stories, and they listened.

I’m so excited to see what discoveries this brings and how many lives will be saved because of it.

RESEARCH FOR THE WIN!

Another year and I’m still here

“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 useful and contribute to society. Not being able to work anymore was really hard for me mentally, so I needed to find my new purpose. I think I was born to advocate for others.

Looking at my memories for this date makes me smile. I had a party to celebrate year 5, I went to Niagra Falls, lobbied in DC, and celebrated with family. It is not lost on me how I lucky I am that today marks 11 years since my diagnosis.

There was not a lot of hope for survival in 2011. Most died within a year. There are so many new treatments now which give me incredible hope. I have a rare biomarker driving my cancer to grow so there are fewer options but in the last 11 years three new drugs have been developed and another one is in trials. Some are more effective for ROS1 than others depending on your tumor’s genetics, but there ARE options.

I would love to raise $1100 this week for ROS1 specific research.

The ROS1ders, Inc was created by survivors to help further develop a greater understanding about ROS1 positive cancers and more treatment options. They’ve worked with researchers to help create NINE ROS1 cell lines through tissue and pleural fluid donations, which has more than doubled the number of ROS1 cell lines available for research. These cell lines are shared freely (for the cost of shipping) with academic researchers to accelerate research. Any donation amount will be greatly appreciated.

Here is the link

I thank all of you for your love, prayers, and support. I have an awesome tribe and I could not do this without you.