Pulling a Rabbit out of the Hat

Friends and Family,

There have been some ups and downs over the past six weeks and two rounds of chemo. Between the antibiotics for the infection in my lungs and the chemo, my breathing has steadily improved over the past six weeks. Where it took me several minutes to climb a flight of stairs six weeks ago, now I’m walking the hills in my neighborhood at a fairly rapid pace. Success is like a breath of fresh air!

This guy may be a wee bit younger and better looking, but you get the idea.

But before starting my second round of chemo three weeks ago, I asked Dr. Sanborn what chemo options are still available. I’m currently on my fourth course of chemo and wanted to know if I still had a safety net for the future. She confirmed my worst fear: There are no more chemo options. Genevieve and I were devastated, and we’ve both been grieving for these past three weeks. Knowing I could fall back on chemo took a lot of the worry away from whatever came next. When the next treatment eventually fails, I’ll have to move to the next trial immediately, before I’m too sick to qualify for another clinical trial.

We went back today for my third round of chemo and to get scan results. The cloudy areas in my scan that reminded me of the Milky Way have improved, which we expected based on my breathing. We also planned to discuss the clinical trials, but that’s not what happened.

There is a drug called patritumab durtuxtecan that is going to be FDA-approved in the near future,. Dr. Sanborn has applied for early “expanded access” so I can get the drug before it hits the market. She is confident it will happen. SUCCESS!!! This is the work of an amazing oncologist who is always on top of things. Dr. Sanborn pulled another rabbit out of her hat just when we needed it most.

I will stay on chemo for another three rounds because you always want to stay on each treatment as long as you can and reserve your options. That should take me through until Valentine’s Day. Around then, I should start patritumab durtuxtecan, and I’ll ride that horse as long as I can, too. By that time, who knows what other options will be available?

I’ve always said I feel like a frog jumping from lily pad to lily pad as soon as the one I am on starts to sink. It looks like I still have a few hops left in me.

Wishing you all a Happy Thanksgiving. There is so much to be grateful for, even if you didn’t just get the kind of news that we got today.

Love,

Dann

Seventeen Candles

Something big has happened, so big that my post is longer than usual today. Read a couple more paragraphs and you’ll see why.

Once upon a time, I had a sore back that wouldn’t go away. After weeks of no improvement, my chiropractor sent me for an X-ray. It didn’t show what caused the soreness, but it did show a spot on my lungs. That spot that turned out to be lung cancer.

That was exactly seventeen years ago. Today is my cancerversary!

The cancer was already Stage III, and the prognosis was not good. With advanced cancer and limited treatment options available in 2006, I was expected to die within months.

I had chemo, a lobectomy, and then more chemo. The “chemo sandwich” approach was revolutionary at the time, and it worked. I had no evidence of disease for another four and a half years. Genevieve and I were almost convinced that I had beat it.

But then countless spots showed up on a CT scan of my lungs. The general oncologist (whom I naïvely accepted as a replacement when my lung cancer specialist left town) didn’t think it was lung cancer. We waited four more months for another scan before he recommended a biopsy, a wait I never would accept now. By that time, the spots had grown – and multiplied.

The same surgeon who did my lobectomy performed the biopsy, using the same VATS (laparoscopic) procedure. (Needle biopsies were not an option back in the dark ages.) He called me a couple weeks later and bluntly told me I had Stage IV lung cancer.  He also told me not to rearrange my vacation plans to start chemo, because “quality of life is the most important thing right now.” That’s when I knew I was going to die. I couldn’t help but start imagining my own funeral 

This was the second time my flame almost went out.

With Genevieve’s help, I found a new oncologist in a different hospital system who specialized in lung cancer. He asked if I would agree to be tested for the 49 lung cancer mutations known at that time for research purposes only, since there were only treatments for two of them, and I had already tested negative for both. I agreed, then started chemo along with Avastin, which prevents the cancer’s blood vessels from growing, which prevents the cancer from growing. That bought me another eighteen months before the cancer progressed and spread to my hips. The new testing showed I did have the EGFR mutation, which we only learned by switching doctors and hospitals. I started treatment on Tarceva, the first-generation EGFR inhibitor that had just come out. But the pain in my hips was so severe that I had to use a wheelchair, so I had radiation. It killed the pain, and life was rosy again.

By the time the cancer started growing again, my lung cancer specialist had moved away, and I was assigned to a general oncologist. Apparently I hadn’t learned my lesson yet, because this doctor’s lack of knowledge almost killed me as well. He had no treatment suggestions other than more chemo and perhaps some radiation, but he looked defeated. Good thing I had learned about a clinical trial for a second-generation EGFR targeted therapy from a friend. I also learned that the trial was closing very soon. I had until the end of the day to get my records faxed (this was 2011) from two hospitals and two clinics. Keep in mind that medical records departments considered two weeks a rush! I pestered them several times each, and called every nurse and doctor I knew at those locations to beg them to apply pressure for me. At 5:30 that evening, I got in.

I got in for the first appointment, that is. I still needed to have the T790M mutation, which was a coin toss. I won that coin toss and got it into the trial for Tagrisso, a drug that works without progression for an average of thirteen months. I was on it six and a half years without progression.

When it grew again I found myself another clinical trial, this time for BLU-945. Unfortunately, by the time I got in, the cancer had gone wild. It progressed to my brain, my liver, and then my spine. The pain was severe and uncontrolled, which led to Walgreens treating me like a drug addict. Fluid filled my lungs and I had to sleep in a chair for four months because I couldn’t breathe lying down. I flamed out of the trial in weeks. The timing was bad; I was in the early part of the dose-escalation phase and was given one-tenth of what turned out to be the therapeutic dose.

I was back to using a wheelchair, this time because I couldn’t breathe enough to walk around the hospital. I fired my general oncologist and switched to a lung cancer specialist. At my first appointment she referred me for radiation to two-thirds of my spine, arranged to have the fluid in my lungs drained, referred me to palliative care, and put me on oxygen. My pain was under control within a day of seeing the palliative care doc. I was scheduled to start chemo, but my platelet count was too low so they sent me home for a week. When I returned, my platelet count was even lower. My oncologist offered me the choice between no treatment except end-of-life care, and “threading the needle,” as she called it. That meant having a reduced dose of chemo and hoping it didn’t kill me. I had the chemo (of course!) and within a week I started feeling a little better. I had PleurX drains implanted in both lungs, and Genevieve drained the fluid for me every other day for months. I remained on chemo plus Tagrisso for another year and a half.

Threading this big needle looks way easier!

When that stopped working, my oncologist immediately put my name on a waiting list for a local clinical trial and called her oncologist buddies in the top clinics in the West to find other options. I researched trials on my own through www.clinicaltrials.gov and checked my Facebook lung cancer groups for other ideas. Dr. Sanborn and I pooled our ideas and discussed options. I was within days of scheduling an appointment in Denver to get tested for mutations to qualify me for four different trials when a spot opened in the local trial. Good thing, too. After that I went to Denver as a backup, and I didn’t meet the criteria for any of the four trials. If I had started in Denver, I would have had cancer progression for five or six weeks before learning I would need to start over in another trial. The cancer might have progressed too much for me to qualify for another trial by then. 

I’ve now been in the amivantamab trial (no other drug with it) for over five months without progression, and I’m feeling great. I’m doing daily yoga, four hours a day of yardwork on a steep slope, golfing, and walking for an hour a day up and down steep hills. Feeling good!

There has been a tremendous amount of dumb luck involved in staying alive for seventeen years when the prognosis at the time was months. There’s also been a lot of self-advocacy and Genevieve’s advocacy on my behalf that isn’t listed here. Attitude plays a huge part, and so does being proactive and having excellent lung cancer specialists at the right times. But even more, the love and support of family and friends like you have been tremendously helpful. Most important, and the main reason I am still alive, is the love and support of Genevieve, the love of my life.

As if a picture could do her justice!

I’ve never written a summary of my cancer journey like this before. It feels dry since I haven’t written about the joy that has come along the way. But it would take a book to write about all of the things that have made life so amazing over all these years. Speaking of…

I will be giving away FREE COPIES OF MY BOOK Second Wind: Thriving With Cancer on August 1st, which is World Lung Cancer Awareness Day. In it, I share not only what has kept me alive, but what has helped me thrive with lung cancer.  I’ll post a link a few days in advance.

Thank you for being part of the most extraordinary journey I could have hoped for.

Love,

Dann

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

Surviving Another Clinical Trial

Friends and Family,

I’ve been on my trial for almost four weeks now, and the best part is that the drug seems to be working. Forget about the snow still melting in my yard; It’s another beautiful day in paradise.

I say this even though we got off to a rough start. Most trials involve a “washout period.” Scientists who clearly aren’t living with a disease that is trying to eat you alive decide that you must be off a drug like Tagrisso, which has a 48-hour half-life, for two weeks before starting the new drug. During that time, the cancer is free to grow and metastasize as it pleases for the sake of scientific purity. For a week before the trial began and for two weeks after, my breathing got progressively worse, which meant the cancer was growing. That led to a quick X-ray to find out if fluid was building up in my lungs again. And no, I have absolutely no feelings about washout periods.

Sorry - this is a No Smoking zone.

Thankfully, fluid wasn’t building up, and my breathing got easier again over time. This is the important part – the drug seems to be working. Success!

I think I had every symptom listed as a possible side effect and maybe added a couple of new ones to the list in the first couple of weeks. If the symptoms were on a Bingo board, I would have won Bingo Blackout in the first week. I’ll spare you the details but suffice it to say that large doses of pain killers, meds for itching and nausea, and creams and lotions were involved. I don’t remember much of that time because I slept through most of it.

Now, almost four weeks in, I can climb hills and stairs easier. Many of the side effects have faded away, which I understand is typical for amivantamab. I’m left with just a handful of side effects. Most are manageable except an uncommon one, which is throat sores.  That one caused a ten-pound weight loss before Genevieve and I got a better idea of what foods I could eat.

The hope is that the sores will go away soon. If not, we may have to reduce the dose and hope the drug works anyway. Timing could be better, since the dose is scheduled to double and move from weekly to monthly starting on Tuesday.

We don’t know if the harsher symptoms will come back with the higher dose, or if the throat sores will go away with less frequent dosing. What we do know is that amivantamab is buying me time, and that’s what it’s all about.

I hope you are doing well.

Love,

Dann