Think Treatable Mutation

Friends and Family,

Things have evolved pretty quickly. First, the non-existent pain in my cancerous rib went from zero to sixty in the middle of a game of golf. I made it through the game, but pain has been a problem for the past week. I activated the referral that I delayed two months ago for radiation. The radiologist told me that the T-4 vertebrae is also involved, and apparently the cancer is pushing on a nerve. I’m now on steroids to shrink the swelling to take pressure off the nerve, and hoping it kicks in soon. I can’t tilt my head to look down at my phone or read a magazine, or bend over to reach into a shelf, and I can’t do a thing to help around the house.

This is bringing flashbacks to both Genevieve and me of when I was in chemo (both times) and she had to do everything. I’m appreciating just how much work is involved now that she has to do everything again, and she is appreciating how much of the work I’ve taken on around the house since I semi-retired last year. We each found a little gratitude. But that’s enough of this lesson, thank you. We’d both rather go back to our normal give and take as soon as possible.

I had my pre-radiation appointment, which is called a “simulation.” They had me lie on a bean bag on the CT table, then vacuumed the air out of the bean bag so that it retains my body shape. They set it aside for me, so that every time I come in I will lie down and be in almost exactly the same position. After they scanned me, the tech gave me five tiny tattoos. Along with the two from my first time having radiation eight years ago, I now have seven tats. Does that qualify me to be a Millennial, or is it just proof I’m from Oregon? There is one on each side of my rib cage, and three down my chest. They will use these to line up the lasers, so that when they zap me it will be in exactly the right spot each time. We’re hoping to hit close enough to the spine to kill the pain, but since a vertebrae is involved, and the spinal chord is in the middle of the vertebrae, there is a “less than one percent chance” of neurological damage. The radiologist considered that insignificant. Us, not so much. But the alternative of waiting until a new treatment kicks in and hopefully killing off the cancer in the right spot is even less desirable.

So far, this has not been as entertaining - or embarrassing - as when I had radiation to my hips. Click HERE to read that story. Meanwhile, between bulging ‘roid-fueled muscles and the tattoos, this cancer is apparently intent on turning me into a badass.

Representative image only. Actual results may vary. Considerably.

It took daily MyChart messages of increasing forcefulness for a week just to get the biopsies ordered, but yesterday (finally!) I had both the tissue and the liquid biopsies. Since the lymph nodes are close to the surface, they were able to guide the needle with ultrasound in real time rather than CT-guided. The lymph nodes were between my carotid artery and jugular vein. I tried to get Genevieve to take pictures, but once they had a needle near my neck she was looking the other way. I felt fortunate that I had to turn my neck toward the video screen, so I got to watch the whole procedure close-up. The radiologist was surprised I looked. Why would I not want to watch? It was fascinating, and gave me a lot of reassurance that they took good samples. Not only that, but this is one of those ultra-intense experiences in life. Why would I not want to be fully present and aware? I’m making the most of this.

Here’s as much as Genevieve would capture in a picture:

Once that was done, we went to the outpatient lab to get the liquid biopsy done. One of the perks of doing them in the same day was that the locations were a tram ride apart. You’ve got to stop and smell the roses along the way, right? Living life to the fullest! This was our view:

Now we’re at the point where the rubber meets the road. We should get liquid biopsy results back in about a week. Tissue samples may take 2-3 weeks. If you were thinking of sending thoughts and/or prayers our way, this would be a very good time. The outcome we are hoping for is a treatable mutation. Ideally one with a treatment that has already been approved. If not, we’re definitely open to a clinical trial.

Think treatable mutation.

Love,

Dann

Confessions of a Smuggler

Friends and Family,

I've written a lot about our trips to San Diego, but there is one part of it I've never shared. It's that I'm actually in two clinical trials. 

On our first trip down to San Diego, Dr. Hussein, a researcher, asked me if I would join a second study. This one was simple: All I needed to do was spare a little extra blood and urine. He was working in conjunction with other clinics to develop "liquid biopsies." 

The plan was to track cancer cells in blood and urine, with the goal of being able to identify when the cancer was dying off or growing. If successful, this could decrease the need for CT scans dramatically. So why wouldn't I want to help this effort? 

"There's more," Dr. Hussein said. Then, as part of his sales pitch, he showed me a CT scan of someone's lungs a week before starting AZD9291 (AKA Tagrisso), and a week after. The difference was remarkable. The amount that the cancer had shrunk within the first seven days was stunning. Now that I was properly motivated, he asked me if I could give him consecutive samples, so they could track the dying cells in my urine. Twenty-four days in a row. 

Sounds easy, right? Did I mention this was in San Diego? We were flying Spirit(less) Airline at the time, the airline that even charges extra for a middle seat in the back row if you so much as ask to choose your seat. You can bring a SMALL carry on bag, but even a medium bag brings a hefty penalty. So my first challenge was smuggling a case of 24 urine bottles onto the plane without getting hit for a baggage fee. I put my backpack on, and stayed facing the gate attendant until I was almost walking backwards to get on the plane, so the thickness of my backpack stayed hidden. Yes, I admit it. I'm a big, bad, urine bottle smuggler.

After that, all I had to do was collect a daily sample, and keep it in my refrigerator. For three and a half weeks, we made sure to grab anything needed out of the fridge, so our guests wouldn't open it and be tempted by the little bottles of apple juice. Or think something crazy, like that we were storing urine in our refrigerator. Then we had to ship it. I was pleased to find out that there is no law against shipping a case of urine by UPS or FedEx.

All this has now paid off. I am pleased to say that a liquid biopsy has recently been approved for testing for EGFR, and the approval for my mutation. The test for T790M has now been proven to be effective based on my trial, so approval should be coming along soon. So how will this be used?

This is the exciting part. Dr. Hussein told us that, so far from his experiences, the liquid biopsy has detected the growth of the cancer one to four months BEFORE it showed up enough to be visible on a CT scan. 

Once the full compliment of these tests is available, the possibilities get even more exciting. When someone is stable, they may be able to go off all meds, and not start again until the cancer starts growing. No pills means no side effects, which is fantastic. Also, with pills that cost $200-$300 each, this is no small savings.

Better yet, we won't have to wait six to twelve weeks before having a CT scan to see if a new med is working. We'll know almost in real time. As it is, if the med doesn't work, the cancer continues to grow. One or two unsuccessful treatment attempts in a row can be fatal, because the cancer has too much time to grow and metastasize before we know that treatment didn't work. There will be more room for multiple trials when the results come back before the cancer has grown much.   

We'll know which med to give without needing a new, invasive biopsy every time. This will also speed up research, since we'll get feedback on what is and isn't working much quicker. That means new and better meds will get on the market faster. I love where this is going! 

For all these reasons, I'm glad I made the sacrifice to become a big bad urine smuggler, and to keep all that apple juice in our fridge. And if you come over to visit, just know that our fridge has been scrubbed very, very carefully.

Love,

Dann