Time for a New Treatment

Friends and Family,

About a year ago, after I had come back from the brink, I asked my oncologist what was the longest she had seen anyone stay on Alimta without progression. She said five years. That was my target, I decided. I wanted to make it five years or more. I lasted fourteen months.

Genevieve and I were both relaxed before this latest oncologist appointment three days ago, one where we would get the latest scan results. I was feeling great, and after sixteen and a half years, we’ve gotten used to dealing with scanxiety. That’s why we were so surprised to learn that two spots on my liver had grown. It means that the cancer has learned to work around my current treatment. It means it’s time for a new treatment.

Getting diagnosed with cancer is crushing. Most of us take months to get over the initial shock, though some never do. Over time, Genevieve and I have learned about how to live with cancer rather than spend our time worrying about my dying from it. However, each time the cancer starts growing again, which has now been five times for me, we are hit with that shock all over again. It means being swallowed up in fear that there won’t be another treatment that will keep me alive. It means going through grief all over again. There are waves of denial, anger, bargaining, depression, and eventually acceptance. All the while, we keep moving forward, at least with our feet.

That step forward isn’t clear. My oncologist took a liquid biopsy to see if I have a new treatable mutation, and I’ll be having a needle biopsy of my liver this coming week . Options include clinical trials in Denver and LA, or doing a harsher chemo to buy time until a slot opens in an amivantamab clinical trial in Portland. This week we’ll be waiting for biopsy results and getting info about the trials before we sit down with my oncologist to decide.

Regardless of how well we’re coping with grief, fear won’t go away until we know if the next treatment will work. If it does, the fear will shift to worrying about how long it will work. We’ve gotten pretty good at managing fear. I just wish we weren’t getting so much practice.

Love,

Dann

Things are Looking Up

Friends and Family,

Breathing and pain management have gotten better since I last wrote, so now I can come up for air and write with a little more hope. Feels good just using the “H” word again.

Dr. Sanborn hooked me up with a pain management specialist, and she is brilliant. Within twelve hours my pain was quite manageable, and she had plans to make it even better. She also had advice for managing chemo better, and is hooking us up with a neurosurgeon to consider using a nerve block in my spine rather than heavy drugs if radiation doesn’t cure the back pain. I have never had palliative care before, but now I’m an instant believer.

I had radiation last week as well, but it wasn’t what we expected based on my other experiences. This was done in a single, high-dose zapping rather than the more-standard ten sessions over two weeks. I suspect my oncologist had a hand in this, since she didn’t want me to start chemo until a week after radiation, and she didn’t want to delay chemo for two weeks. Either way, I’m happy it’s done. I should start feeling the pain relief within days… or weeks…   

I knew there was fluid on my lungs making it hard to breathe, but I had no idea how much fluid until it was drained. Genevieve chased down every provider who had ever even seen my name in print until she was able to get these appointments authorized and scheduled. Since I was getting desperate for air, I have never been happier to see her go all ferocious on these unsuspecting victims until she got action. Things didn’t change much after the fluid was drained from my right lung on Friday, but when they drained the second (left) lobe yesterday, it made a huge difference. Now I see why I couldn’t breathe. Between the two lungs, they drained 2.3 liters of this gunk off my lungs:

More than two full gunk containers! That’s over five pounds of fluid. No wonder I was having trouble breathing. I was drowning!

The next step will be to start chemo (carboplatin + Alimpta) on Friday. I’ll stay on the Tagrisso along with the chemo, and have sessions every three weeks. Unless…

My liver was biopsied on Friday when the fluid was drained from my lung, and the results of that biopsy could change everything. Dr. Sanborn is concerned that the cancer may have converted to small cell lung cancer (SCLC), which is much more aggressive and has far fewer treatment alternatives than the non-small cell lung cancer (NSCLC) I have had until now. I’m not going to look at lab results in MyChart. I’ll just wait until I hear from Dr. Sanborn, who is out of town this week, or my chemo type and schedule is changed, which would tell me everything I didn’t want to hear.

In the meantime, please think non-small cell, or pray for non-small cell, or meditate repeating non-small cell...  

Your thoughts, prayers and meditations are much appreciated.

Love,

Dann

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

The Party's Over

Friends and Family,

We knew it wouldn’t last forever, but we got a really good run out of it, didn’t we? I have been incredibly fortunate to be on Tagrisso for six years and nine months with no growth until recently.

We just got the latest CT scan results and learned that the cancer has grown a tiny bit again (1mm, the thickness of a credit card) in one of the spots in my lungs, a change so small that many oncologists consider that within the margin of error. Except this time lymph nodes near my abdomen and clavicle grew ten times that much, and the cancer in the rib in my back is now involving surrounding soft tissue and more of the bone. In short, it’s time to do something. It may be that I stay on the Tagrisso, since it still seems to be doing a lot of good, and add a second med.

The next step is to get a biopsy of the lymph nodes to see how the cancer has mutated, because if the cancer is growing again, there’s a new mutation. They will have me lie down in a CT scan machine, insert a needle, scan me again, adjust the needle and push it in a little more, then rinse and repeat until they hit the target and get the sample. I’m told I won’t even need sedation for this one, so it’s a pretty minor procedure.

I’ve also asked for a liquid biopsy, which is when they take a blood sample and look for the cancer’s DNA circulating in the bloodstream. That way we will know if there is any new mutation elsewhere that isn’t showing up in the lymph nodes. We want no surprises!

We’re hoping to get this done next week. It will take 2-3 more weeks to get the results. At that point we will see what approved medications or clinical trials are promising for my mutation(s). Meanwhile, one oncologist is urging me to get radiation treatment for the cancerous rib, while the other is suggesting I wait until I can’t manage the pain with Tylenol. The hope is that in time, the new medication will attack the cancer in my rib. Since I’ve been golfing and doing some pretty physical yardwork with no significant pain, I’m going to avoid radiation as long as possible.

Genevieve and I have made one other decision. We’re going to take it one step at a time, and not worry about what might or might not work until we get to that point. No need to worry about the future until we get there, is there?  

Love,

Dann

Denial Will Only Take You So Far

Friends and Family,

Okay, so the party is over. I tried to convince myself that six years and four months after starting Tagrisso, maybe the first sign of “growth” in one of my tumors was actually not growth at all. I hoped it was a measurement error caused by using a different (new) CT scan machine this time, but the PET scan told me I’m not fooling anyone.

The scan revealed suspected progression in a few places. My lung spots are looking active for cancer activity, but they haven’t grown in two months, so we don’t have to run around like our hair is on fire looking for an emergency fix.

Strings of lymph nodes were also suspicious. The last trouble spot explains why my back has been sore for the past three months: I have a broken rib. Go figure. As a bonus, it looks like there is cancer at the break. We’re not sure if the cancer caused the break, or if the break opened the opportunity for the cancer to invade.

Now that we know what is happening, we don’t know what to do about it. Protocol dictated that we see my local oncologist first, since that’s where I got the scan. He wasn’t sure what to do next, so we will be seeing (via Zoom) Dr. Patel, my UCSD clinical trial oncologist, on Tuesday to discuss a plan. He’s very sharp, so we’re feeling good about meeting with him. Now at least we have a plan to make a plan.

My guess is that I will have some radiation and a biopsy, since the only way to pick the right treatment is to know what you are treating. My mantra for everyone with cancer is that when there is new growth, get re-tested, because the growth means that there is a new mutation.   

It always takes a few days after big news to process it before I can write about it. Genevieve and I finished our telemed appointment Friday confused and frustrated with the lack of answers. Now that we’ve had time to think about it, we’re in a better place. We’re seeing this as an opportunity to create the best path forward. As unsure as he was, this oncologist was ready to set me up with a one-size-fits-all treatment approach, but we are not passive. We’ll make the decision when we have all the facts. If we’re still not sure after talking with Dr. Patel, we’ll get another opinion. It’s one of the important lessons we have learned in the almost fifteen years we have been living with cancer: You have to be your own advocate.

Thank you again for your love and support. Today I’m telling you about the practical side of this experience, but what you do, and particularly Genevieve, gives me the passion to push for answers.

Love,

Dann