Thread by @LauraEsfeller

So I realized it might be good to do a recap here of my story, otherwise known as, “No, really, I promise I almost died six years ago.”

(I guess this is probably a good time to warn you all that I have a warped sense of humor. #thankscancer )

May 2016, five days after my 29th birthday, I am diagnosed in an @StRoseHospitals ER when a CT scan finds a 13 cm tumor that has taken over my right kidney. The amazing ER doctor & PA had already called a local urologist so I can see him first thing in the morning.

My local (Vegas) urologist says, “I’ve got one surgeon in town who *might* be willing to take your case.” Yikes! He encourages going to CA instead, specifically to @UCLAHealth. He steps out of the room & calls the surgeon who did *his* nephrectomy on his cell phone to get me in.

Dr. Robert Smith & Dr. Ronald Busuttil take on my 5.5-hour surgery in June 2016. They remove my right kidney, right adrenal gland & 7 lymph nodes. Oh! And, bc my primary tumor had completely occluded my IVC, they remove the blocked portion & leave collateral veins in place.

While recovering from surgery @UCLAHealth oncology pays me a visit. Do I have any suspicious bumps that hurt on my skin? Do I have any uterine fibroids? This is the first time I hear about #HLRCC. (Weirdly enough, I am very fortunate=my bumps don’t hurt)

August 2016: Surprise! Despite the heroic efforts of my surgeons, the cancer has metastasized to my liver, lungs & lymph nodes throughout chest. I am officially Stage IV. Oncology notes my file in bold: “Patient understands this disease is terminal and care is palliative only.”

UCLA oncology recommends Votrient (pazopanib) if I stay with them but encourages me to transfer care back to Vegas, specifically to Dr. Nick Vogelzang @CCCNevada. Mentions that Dr. V is involved in clinical trials & may have something different for me.

I see Dr. Vogelzang for the first time later that month, and he immediately adopts me.

Just kidding. 🤭 We had a running joke where I’d ask him to adopt me, he’d say he couldn’t, then I’d say, “But you can at least admit I’m your favorite patient, right?” He’d say, “Girl!” 😂

In all seriousness, Dr. Vogelzang comes into my 1st appointment armed w/ options. He’s got Plans A-D already lined out. His 1st choice is a new trial run by @SWOG called SWOG S1500. There’s one drug in the randomized trial called Cabometyx that he REALLY wants me on.

I sign the consent forms in September 2016 & get approved to join the trial. My clinical trial nurse announces I’ve been assigned Cabometyx (cabozantinib). “YES!” Dr. V shouts & pumps his fist in the air. “You’ve hit the jackpot!”

Well, Dr. V was 100% right. I *did* hit the jackpot. My first scan in December 2016 shows an 80% burden in my tumor burden. Stunned, shocked. I had been praying for just stability. It’s the first good news I’ve received in 7 months.

I receive my first NED scan in August 2017. No evidence of disease = they can’t see any cancer at all. 🎉

I continue on Cabo & the trial because we’re not sure if this complete response is durable. Dr. V is concerned I’ll have a recurrence. I stay on Cabo for another almost 3.5 years until the side effects are outweighing the benefits of me staying on drug.

In the meantime, my mom is diagnosed with stage IV clear cell RCC (I have papillary) and B cell lymphoma in August 2018. She 1st has R-CHOP for her B cell, then switches to Opdivo (nivolumab) for the RCC. She also receives SBRT for a skull RCC met.

After a round of Opdivo doesn’t show what we want to see, Cabo is added. Unfortunately, Mom catches the flu in January 2019 while neutropenic. This quickly becomes sepsis & despite the heroic efforts of the ICU team @BRGeneral she passed away on 1/31. I miss her every day.

In April 2020, Dr. Vogelzang encouraged me to stop Cabo and come off the trial. While I wasn’t sure how I felt about losing my security blanket, I agreed. I’ve had regular surveillance scans ever since, and as of July 2022’s scan, I’m still NED.

I relocated to SoCal in 2021 for work but kept my care with Dr. Vogelzang until he unfortunately got sick earlier this year. I’ve now moved my care back to @UCLAHealth with Dr. Brian Shuch, who I’m incredibly fortunate to have as my onc now.

Dr. Vogelzang passed away last month & I’m still wrapping my head around that. Oncologists, I hope you know just how much your patients really care about you. I could’ve told Dr. V thank you every single day for the rest of my life & it wouldn’t have been enough.

So, I’ve been NED for 5 years now. Why am I still so involved in patient advocacy? A few reasons:

1) In memory of my mom & the countless patients I’ve been fortunate to call friends.

2) Patients need to be their own best advocates. Knowledge is power. If you understand your disease, you will be a better patient. If I can help someone in layman’s terms, or give them a safe place to scream into the void, I want to do it. Angels did that for me.

3) I’m selfish. I know I’m high-risk for recurrence. I know the more research that happens, the better outcomes that happen for patients (and me too). However I can help, I’m all in. If it doesn’t benefit me, it benefits the larger field, and we all win when advances are made.

So, that’s me. I am so optimistic about where the field of renal cancer is headed. I really mean it. I’ve seen so much change just in 6 years. I know we’ll get there. I don’t want to be the “rare” complete responder. I want CR for every patient in every type of renal cancer.

#clinicaltrialssavelives #renalcellcarcinoma #renalcancer #HLRCC #clinicaltrials #cabometyx #cabozantinib #targetedtherapy #metastaticsurvivor

Oh, about that humor? Well, some of my cancer buddies started calling me the Cabo Queen. So when we went to Cabo San Lucas a few years ago, well… I had to take a picture of Cabo in Cabo.

Don’t forget to smile.