Who Knew This Was a Leap Year?

Friends and Family,

Yesterday, Genevieve and I got the results of my first scan since starting this new clinical trial two months ago. I’m breathing easier and coughing less, so it was a massive relief but no surprise when we got great results! Many of my spots are stable, and many have shrunk a bunch. I no longer have enough spots to film a new 101 Dalmatians movie inside my chest.

The real magic happens when those spots disappear!

This is my third clinical trial, and my second one that has been successful. I would have died eight years ago without clinical trials. In fact, every survivor that I know of who has lived for at least ten years with lung cancer has been in at least one clinical trial, and some have been in five or six . This is my encouragement to all of you who haven’t considered clinical trials before. I hope you ask lots of questions and give it some thought. You might just live longer.

Every treatment stops working at some point, so the challenge is to have options when that time comes. My oncologist (Rachel Sanborn), whom we adore, is as proactive as we are. We jointly agreed that it made sense for me to get established in Denver at University of Colorado, where I almost ended up before Dr. Sanborn pulled a local trial out of her hat at the last minute. UC runs a lot of trials at once, so it’s a great place to consider. I tried for weeks to get UC to let me meet via Zoom to review and sign their Informed Consent, which had to be done before they could test my leftover biopsy tissue for their trials. Red tape won out in the end, so Genevieve and I flew to Denver to get established in their system. With that step out of the way, they are testing my biopsy tissue. This will save about six weeks (!) when the need for a new trial arises. Since for some people, like me, cancer tends to go wild once it finds a way around the current treatment, the ability to get into a new trial quickly could prevent the cancer from spreading much further. Never mind that I may not go there if something better comes up – My safety net is in place.

For many years I have felt like a frog that jumps from lily pad to lily pad, just as the one I am on starts to sink. The trick is to buy as much time on that lily pad as you can and have another one ready for that next leap. It’s what keeps me from croaking!

Here’s hoping every year is a possible Leap Year for you.

Love,

Dann

Change of Plans

Friends and Family,

This is not the story I had hoped to write.

After my first week in the new clinical trial for BLU-945, my cough had decreased and my breathing was easier. It seemed like a no-brainer that things were going to keep getting better. I had fantasies that this drug was The One. As in, the one that got rid of every bit of cancer and left me with no evidence of disease (NED).

But that’s not how it turned out. Even from the beginning, there was one trouble sign. The pain in my back flared up during the one-week “washout” period, when I had to go off Tagrisso before I could start the trial med. It has been getting worse, to the point where calling it a nightmare is not an overstatement. I am grateful that my oncologist responded to the severity of the pain, but it escalated faster than we could get new scripts authorized by insurance. The other issue was a pharmacy that thought I was a drug addict and put up barriers. For this last prescription, paying pay out of pocket while awaiting insurance authorization wasn’t even an option. Fact #1: I WAS drug seeking. Fact #2: People in severe pain can look just as desperate as drug addicts, but it doesn’t mean they should be treated the same.

The other surprise was that in the two weeks since I wrote about the wonderful improvement in my breathing, I am now panting hard for minutes after doing nothing more than getting into bed.

Fortunately, I switched to a new local oncologist to help with the things that need to be handled in Portland, such as scans and Xgeva shots. Even better, she and Dr. Padda are friends. The two have worked closely to problem solve. As a result, I have had multiple tests in both Portland and Los Angeles in the last week, which has clarified a lot.

First, an MRI showed that seven of the lower eight vertebrae in my lumbar and thoracic regions have cancer, which is the source of my pain. The cancer swells the bones, which then press up against the nerves in my spine and cause pain. I’ll be starting radiation treatment to address this as soon as the radiologists work out a plan.

Next, a CT scan and echocardiogram show that I do NOT have a new pulmonary embolism (whew!), but I do have fluid building up in my lungs and around my heart. This explains the breathing difficulty. I will have that fluid drained off as soon as the procedure can be scheduled, and I should breathe easier again. Is it weird to look forward to a needle in my abdomen?

The CT also showed that the cancer has expanded in my liver, but so far my liver function tests remain normal. The last thing the scan showed is that there has been some improvement in the cancer in my lungs. Dr. Padda believes that the BLU-945 is working on some mutations but not others. There is also a question of whether a higher dose would make a difference, but Phase I of the trial, which I am part of, is about determining what dose can be tolerated, not what dose is effective. My dose can’t be adjusted. 

For those of you wondering if BLU-945 might work for you, keep in mind that I have EGFR but do not have T790M or C795S mutations, which are the primary targets of this treatment. None of my experience applies if you have those mutations.

Not surprisingly, I am out of the BLU-945 trial. In the short term I am back on Tagrisso until the next step is in place. Last week Genevieve and I talked with my local oncologist, Dr. Sanborn, about potential next steps if I washed out of the trial. We are in agreement that I will go back to chemo, possibly along with Tagrisso. The Tagrisso is clearly doing something. Research in the last several years shows that chemo is more effective after radiation, so I may be on Tagrisso by itself until radiation is done.

Our friend Donna was on Tagrisso for just two months before it stopped working. Her doctor kept her on it and added chemo. Remarkably, on that combination she now has no evidence of disease. We’re hoping that I will have the same outcome, though we would settle for a lot less. 😊

Thank you for all of your love and support through what has been the most challenging time in my fifteen years with lung cancer. Even when I have been too overwhelmed to respond, your words and acts of kindness have meant everything to me.  

Love,

Dann

Bullseye!

Friends and Family,

I started my clinical trial for BLU-945 last week, and this targeted therapy already looks like it’s hitting the bullseye.

But getting here hasn’t been easy. When we went over my latest scan results the day I started the trial, we found out that there was “significant worsening” of the cancer including the lymphatic system in my lungs, fluid buildup, and “ground glass” opacities in the lungs. No wonder I was feeling worse. But it didn’t stop there. There are two small spots each on my liver and brain, which I’ve never had before. My breathing had gotten extremely challenging lately, to the point where walking up a flight of stairs left me gasping for air. My cough had progressed to being almost constant. It seemed bad enough that I don’t know if I could have gotten on a plane if this trial had started a couple weeks later for me. This was not good.

At this point I don’t mind saying I was pretty scared. What if the trial doesn’t work? Will I have time to get going on another treatment before it’s too late? I normally try to focus on the present, but I also had to think of a Plan B if things got any worse. Would the best option be to try another trial, which is a gamble, or go with chemo, which works but not all that well?

But the good news came quickly. After just a week in the trial, the results couldn’t be better. Within one day, after just one pill, my cough was almost gone. My breathing has gotten so much better that I can climb that same flight of stairs and just keep walking. I’m breathing hard, but not gasping for survival. The results happened so fast I had to question whether it was a placebo affect.

For those of you interested in this medication for yourself, side effects have been minimal. A few days with an overactive gag reflex and some nausea are about it. Another thing to be grateful for!

It’s early days, and we don’t know if this new wonder drug will hit all the trouble areas, but so far we’re almost as happy as this: 

It’s always more complicated than that, however. A few days before starting the trial I developed a back pain severe enough that a long plane to LA is excruciating. I’m up every hour or hour and a half at night to take heavy duty pain meds, ice my back, use a menthol rub, or try levitation – whatever it takes to distract me from the pain. Finally my PCP prescribed a med for nerve pain, which is helping, and my oncologist ordered an MRI. The pain is likely caused by cancer in my spine, so if BLU-945 doesn’t take care of it very quickly, I’ll probably have radiation again.

Despite the pain, this is another time when I feel extremely fortunate. The trial had almost filled up for people with EGFR by itself, which I have, but remains wide open for people EGFR plus T790M or C795S. It’s a lot like when I got into the clinical trial for Tagrisso three days before the trial closed. That drug worked wonderfully for me for seven years.

Let’s hope this one works for just as long!

Love,

Dann

Feeling BLU is a Good Thing!

Friends and Family,

Just when it seemed like all of my treatment options were either a) nasty & not very promising, or b) even nastier and not very promising, things are looking up!

My two oncologists couldn’t agree on what to combine with chemo (Tagrisso vs. immunotherapy + Avastin). Trying to prepare myself in advance, I started fattening up a little and bought some Ensure-type drinks to keep the weight on during chemo. However, before meeting with the “tiebreaker” oncologist, I did my own search for clinical trials, and then went to my go-to crowdsourcing resource, a Facebook group called EGFR Resisters. I keep saying that you have to be your own advocate if you want to stay alive.

Armed to the teeth, Genevieve and I met with oncologist #3. She preferred her own band-new clinical trial rather than either of the chemo options, told me that one of my clinical trials had just filled up, and wouldn’t offer an opinion on the other. We had an appointment right after that with Dr. Patel, who was excited about the trial I found through EGFR Resisters. That option, BLU-945, is supposed to be the next-generation EGFR targeted therapy that covers the most common ways lung cancer mutates around treatment. If it works, I’ll be feeling BLU, just like these guys – though maybe a tad less athletic.

I have already made the cut, so I don’t need to wait for another biopsy to see if I qualify. Our first appointment is this coming Friday. Based on my last clinical trial, it could take a couple more weeks to jump through the hoops before starting. This is another pill, just like Tagrisso, and should have minimal side effects. We’ll see.  

The trial is at Cedars Sinai in L.A, which is 800+ miles away. It could be worse. In fact, it almost was. When I first looked up the trial, the closest location was in Houston. That’s a thousand miles and two time zones further away, not to mention having triple the COVID rate – a huge consideration, given my health. By the time we talked to Dr. Patel, L.A. had magically been added to the list!

This has a familiar feel to it. I got into the Tagrisso clinical trial three days before it closed, and it has worked for me for seven years! Timing is everything!

We welcome your thoughts and prayers, or just wish us luck!

Love,

Dann

PS for anyone wanting to find clinical trials: Try https://clinicaltrials.gov/, or use a clinical trial finder, which searches clinicaltrials.gov based on your criteria. This one is through LUNGevity, and also has the option of getting help from a human being: https://app.emergingmed.com/lcctal/home

Latest CT Results: My Streak is Over

Friends and Family,

After six years and four months on Tagrisso, there has been a small amount of growth in one of the spots in my lungs. The change is small, but packs a wallop. This oblong tumor is now just a millimeter longer than four months ago.  For comparison, a millimeter is about the thickness of a credit card.

That small change isn’t even noticeable in my breathing, so the only issue is what it means for the future. The drug will still work to some degree for a while, but now there is an end in sight. Before this, Genevieve and I could dream about how much longer this good luck streak could hold out.

The plan from here is to get a PET scan in another 6-8 weeks. For this type of scan, radioactive sugar molecules will be injected into my veins. Those molecules congregate where there is cell hyperactivity … meaning where there is active cancer. They “light up” the cancer, so the radiologist can see if it has spread to other spots in my lungs, or other parts of the body.

The best case scenario would be if the scan shows that just the one spot, or even a few spots, are growing. If that happens, I’ll get radiation only to those spots, and we’ll kick the can down the road a little further.

If there are too many spots for radiation, I will be pressing my oncologist for a new biopsy. This is because the only way to know how the cancer is mutating, and what treatments may work, is with a new biopsy.

It’s slightly comforting to know that usually when the cancer starts growing again for people on Tagrisso, it grows slowly. This takes some of the panic out of figuring out what the next treatment will be. It also gives more time to look into clinical trials and get a second opinion if there isn’t a clear course of action after the biopsy.

I’ve been extremely fortunate to go more than five years longer than the average time on Tagrisso before having progression. The goal is always to buy more time, and make each treatment last as long as possible, so the next treatment will be developed by the time I need it. New lung cancer treatments are coming out so fast that I just need some luck and some time to keep outrunning the monster. So far, this has worked incredibly well. Here we are, almost fifteen years after I was first diagnosed. At that time, my life expectancy was months.  

This has been hard news for us to take, but not completely devastating. Each time cancer starts growing again, it’s like a mini-grief episode, combined with fear of what will happen next. That’s why it has taken me a week to write to you. I’ve needed time to process it. But I think I’m getting there. The word that keeps coming up for me these past few days has been “grateful.” I’ve had so much more time and quality of life than most with this diagnosis, and I’m not done yet.

So that’s my word for the day: Grateful.

Feel free to make it yours.

Love,

Dann