Another Kind of Cancerversary

Every year Genevieve and I celebrate my cancerversary, and this July we were thrilled to celebrate my sixteenth. But this year Genevieve and I are celebrating a second kind of cancerversary.

By this time last year, cancer had progressed to my brain, liver, two-thirds of my spine, and the lining in my lungs. I was on oxygen, Genevieve had to wheel me around the hospital because I couldn’t get enough air to walk that far. I slept in a chair for three months because I couldn’t get enough air lying down. I had PleurX drains placed in both lungs so that every other day Genevieve and I could drain the fluid. I was on massive doses of oxycodone and oxycontin for the cancer pain in my spine. Because of the meds, I could barely think.

The first step out of this pit was a “one and done” radiation to most of my spine. Since the radiation travels non-stop in a straight line after it hit the spine, it also nuked my intestines, and I had severe nausea for two weeks. I lost eighteen pounds, and I looked skeletal. My platelet count was so low I couldn’t start chemo. I was sent home with the hope the count would improve by the following week. Instead, my platelets dropped further. That’s when my oncologist had a moment-of-truth conversation with us: I could take a lower dose of chemo and hope the chemo itself wouldn’t kill me, or go home and wait to die.

Of course, I chose to go ahead with chemo (carboplatin + Alimta) plus daily Tagrisso tablets. At that time I thought I had weeks at most to live. Within days I was feeling good enough to ask Genevieve to take me to an indoor mall that was itself on life support, so I could walk a lap. My brother-in-law Lorin stepped in to walk with me as I gradually I increased to two laps around the mall, and then three.

I started tapering off on the pain killers and putting back on the weight. By the time Omicron popped up and made it unsafe to walk indoors the worst of winter had passed and I was feeling just strong enough that Genevieve and I started walking up and down the hills in our neighborhood again every day.

All was going smoothly until a hernia popped up – probably from all that coughing. The surgery pushed back the walking and other exercise another six weeks. Meanwhile, I kept gaining weight and detoxing myself from the oxycodone and oxycontin. It took months, but I was finally free of pain and free of the drugs. When I was also free to exercise, I went back to yardwork and golf along with the daily walks.

Fast forward to last week, when Genevieve and I were in Hawaii for her birthday. It was on her birthday last year that I started chemo. At the time she said she was happy that it was her birthday since it was a gift to her, which should tell you how special she is. This year, we celebrated her birthday and we celebrated my new cancerversary on the same day by walking four-and-a-half-miles on the beach, swimming and body surfing.

Maybe they weren’t this big.

My latest MRI results showed that the brain mets that disappeared six months ago are still gone. My latest CT scan showed the cancer is stable, and the shadows on the liver are behaving themselves. I love seeing my oncologist look so happy because it can only mean I’m doing as well as I feel.

It’s been an incredible year. What a joy it’s been to climb back out, reclaim my health, and celebrate with the love of my life. This isn’t the end of the story, but it’s a pretty good place to stop for now, don’t you think?

Love,

Dann

Spring is in the Air

Friends and Family,

If it seems like a long time since I’ve posted, you’re right. I didn’t mean to keep you guessing. It’s just that I’ve been having too much fun to write.

Let’s start with my latest CT scan results, which are stable- again! We’re grateful, but weren’t surprised because I’m feeling great and don’t have any symptoms. There’s more going on than scan results, though.

Ever since I recovered from last year’s near-death experience, and then got past the doctor-ordered healing period after my hernia surgery, I’ve been stretching my physical limits. There’s the daily yoga (thank you Adriene Mishler for the great YouTube videos) and the hour-long daily walks up and down the steep hills in our neighborhood with Genevieve. But those are just the basics. I’m also golfing every week and working in the yard most days.

But this is no ordinary yard. There is a 55-foot drop between the street and the bottom of the yard. It’s so steep I use switchbacks to get down the hill. For much of the summer I removed a million weeds, which left the yard mostly bare dirt. Next, I added thirteen different types of plants (Next Door is a great resource), filling almost every available inch. Now that the hard work is done, I’m already looking forward to spring! And to make it even better, all this exercise has left me feeling better than I have in years. I’m having my own personal spring!

People often want to know how I have survived sixteen years with lung cancer. One part is luck. But there are a lot of other things that go into survival, which is why I wrote my book. What surprises me is that people usually only ask about my diet and what supplements I take. Nobody asks about exercise! This is one man’s opinion, but I believe physical activity is at least as important. Not only that, but nothing makes my body feel as good as regular exercise. With this much physical activity, my body is feeling less like winter, and more like spring.

Here’s hoping you put a little spring into your step too.

Love,

Dann

Blue Skies, White Ribbons, and Red Roses

Friends and Family,

It may be too early for the fourth of July, but all the right colors are there. I feel like some fireworks:

BLUE SKIES because I’m feeling great this far out from surgery, I have no physical limitations (freedom!), chemo has been incredibly easy for me, and there are no new scans to tell me things aren’t as good as I think. Yahhhhhh!

WHITE RIBBONS because last weekend our friend and fellow survivor Dawn Horner (below) got our local support group together, along some with amazing family and friends. We spent a few hours making white ribbons to help spread lung cancer awareness. I’ll spare you the gushiness, but the spirit of the project and the togetherness seemed to leave all of us feeling warm and fuzzy.

People are putting these white ribbons on their houses, in their windows, in their clinics and doctor’s offices, and having their pictures taken in all sorts of interesting places, then posting the pics on social media with the hashtag #thewhiteribbonproject, like this:

 If you want to know more, see https://www.facebook.com/TheWhiteRibbonProject. If you live near me and want a ribbon, let me know and I’ll get you as many as you want.

 Finally, I wanted to post about RED ROSES. These are in gratitude to my wife Genevieve for all that she has been through with me in the past year. Genevieve, thank you for being there for me when I dropped down to 138 pounds and you had to wheel me around the hospital because I couldn’t breathe enough to walk. And also for the endless days you spent sleeping on the sofa near me while I slept in a chair using oxygen, because there was too much fluid in my lungs to breathe lying down in bed. For patiently repeating things over and over when I was too stoned on pain meds to remember what you were saying. For (almost) never snapping back at me when I snapped at you out of frustration. And for surviving the trauma of watching your husband come so close to death. Most of all, thank you for giving me a reason to fight like hell to stay alive.

For all of this, and the countless other things you have done for me, I will always be grateful. Thank you, Genevieve!

Love,

Dann

Happy to be Aging, Gracefully or Otherwise

Friends and Family,

There’s so much good it’s hard to know where to start, so I’ll just take it from the top. Six months ago an MRI showed a couple of spots on my brain, the first time that has happened. Despite my brother Mike’s claims that they must have been looking at someone else’s MRI if they found a brain at all, this new scan showed that I have a “spotless” brain. Squeaky clean you might say, even if the radiologist didn’t.

Next, my oncologist was able to convince my surgeon (it took two conversations) that I would only need to skip one round of chemo instead of two, and miss one day of Tagrisso instead of four, to have the hernia surgery. It paid off in all ways. The surgery went very well, I’m healing nicely, and the best part is that my CT scan showed that the cancer is stable, even after those missed meds. If the surgeon wasn’t telling me to take it easy for the first six weeks I’d be doing the happy dance!

Last week I had my sixty-fifth birthday, which is hard to believe, since I was first diagnosed when I was forty-nine. To put that in perspective, the week before I was diagnosed Pirates of the Caribbean was released, George W Bush had just started his second term as president, and there were 1.25 billion less people in the world. We have long hoped to turn lung cancer into a manageable chronic disease, and we’re getting there. I may be on the leading edge, but I’m hoping this will become expected for everyone before long.

Here’s the last thing to share today: I was honored to participate in a podcast along with fellow EGFR Resisters Ivy Elkins and Jill Feldman. I think this would be especially helpful for people who are newer to lung cancer or who want to know more about biomarkers. There are also a number of other podcasts and a blog on the site that I recommend checking out. Here’s the link: upstagelungcancer.org/podcasts/

 That’s all for now! So glad I have good news to share with you today.

 Love,

 Dann

What's Popping Up Now?

Friends and Family,

It’s been a pretty wonderful six weeks since my last post. It’s not this way for everybody, but for me chemo is pretty easy when it’s just Alimta. It feels almost like I’m having infusions of saline solution. That’s a really good thing, since I will continue on Alimta every three weeks for as long as it works.

I’ve put back on fifteen pounds in the past few months, but for the life of me I can’t tell where they went. Not only that, my latest CT scan results show that everything remains stable, and my lab results are looking great!

The only fly in the ointment came up the day after my PleurX chest tubes were removed. An inguinal hernia popped up, probably caused by all the coughing the past few months. My surgeon wanted me to skip two rounds of chemo and four days of Tagrisso to have the surgery to promote better healing, but we just got this cancer under control, and I don’t want to let the beast loose again.

I think the surgeon needs a little help with his priorities. My oncologist is having a second talk with him. If things go as Dr. Sanborn is suggesting, I’ll skip one round of chemo and one or two days of Tagrisso, which she doesn’t think will be a problem. Once the surgery is over and some healing has taken place, I’ll be back to hill walking (we’re way past mall walking these days), and eventually I can get back working in my yard.

In short, life is almost stable again. Sounds pretty wonderful to me.

Hoping all is well for you, too.

Love,

Dann

Getting Something Off My Chest

Friends and Family,

There’s something I’ve been wanting to get off my chest for a long time, but first things first. I had a CT scan last week, and we met with my oncologist last Wednesday. I will start out by telling you that for us right now, one of the most beautiful words in the English language is “stable.”

Not this kind of stable!

Stable! Those are the results of my latest scan. As in, the massive improvement in my scans from six weeks ago is holding steady. And that’s not the only good sign. My lab work is moving more and more into the normal range. Dr. Sanborn told us she panicked a little when she read in my chart that I had put on weight in the last three weeks, thinking that it was probably fluid building up in my legs again. That’s why she questioned me so carefully about how I was feeling and was extra thorough checking my legs – to make sure. But the weight gain was real, another sign that I’m getting healthier. Part of that is that I’m also gaining some of my appetite back, but beyond that, having a body that reacts normally to food means that my force-feeding program of the last three months is paying off.

 Fattening up (it’s all relative!) is paying other dividends. I’m feeling the cold less. Instead of dreading the frozen moments between getting into the shower and putting my clothes back on again, I’m comfortable with the temperature. I’ve actually worn only two layers of clothing around the house a few times. I think some of it is the added padding, and some of it is my body getting back to normal self-regulation of temperature.

 All of this means that I continue with chemo every three weeks starting last Wednesday, but now the only chemo drug is Alimta. I’m done with my four rounds of carboplatin, and moving on to what I think of in comparison as “chemo lite.” Side effects have been minimal, and I’m already on the road to recovery for this round. Nice and easy!

 And now for what I wanted to get off my chest. It’s not that heavy, but it does have an oversized impact on daily living.

 It’s called PleurX. I’ve had two PleurX tubes draining fluid from my lungs for three months. One of the tubes dried up completely (no more cancer in the interstitial lining of my lung), so we had an appointment today to remove it. Dr. Mary suggested that since the other tube was nearly dry, there was less risk of infection if she removed that tube as well. The rest of the fluid will re-absorb on its own, she said.

 And so I agreed. Both tubes were plucked from my chest today, while Genevieve turned her head to avoid the sight. I’m a free man again! No more pain at night when and my tubes and fat-free ribs collide with what felt like a rock-hard pillow top mattress. No more restricted movement to prevent accidentally pulling out the tubes or tearing off the bandages. No more awkward improvised showers where Genevieve wrapping me in Glad Wrap to keep water away from my bandages.

 The sweet smell of freedom!

 It’s been a long time since I’ve been able to be this naturally upbeat. Three months ago, Genevieve had to wheel me around the hospital because I couldn’t breathe enough to do it on my own. We were having end-of-life discussions with Dr. Sanborn, as in this-chemo-could-kill-you-or-make-you-better, and defining where my bottom line was before I would want my life to be over. For me, it was constantly gasping for air, and I was very close. It brings me to tears to think how close that moment was.

 We are so far from this now that it seems surreal. My strength is coming back, and our daily hour-long hill walks are just as challenging now as they were before my decline last summer. Life is almost as normal as it gets again.

 I am grateful for the encouragement that all of you have given me. Some of it has been practical, such as the wonderful meals. Much of it has been verbal, and based on your own experiences. All of it I treasure deeply. Of course, I owe every breath I take to Genevieve, the greatest gift of my lifetime.

 Here’s hoping you find many things for which you, too, are grateful.

 Love,

 Dann

It Was All Smiles Yesterday

Friends and Family,

It was all smiles yesterday when Genevieve and I met with my oncologist before my infusion today. First was my own report to the doc: I feel better, I’m breathing easier, I’m coughing less, and when we drain my chest tubes, it’s obvious I have far less fluid in my lungs.. I reduced my pain meds by 75% in the last three weeks, and I am not having daytime pain. For the past four nights I have finally been able to sleep in bed, rather than mixing it up between my recliner and our sofa. It’s almost incomprehensible that two months ago I was on oxygen, and needing a wheelchair to get around the hospital. I’m so grateful to be where I am now.

Next, Dr. Sanborn gave her report to us. In short, the bloodwork numbers that were too high are dropping, and the numbers that were too low are rising. There’s a sense of normalcy within sight!

Dr. Sanborn said that seeing the smile on my face made her day. Considering that just two months ago we were discussing whether I was healthy enough to survive chemo, getting to this point feels pretty miraculous. At that time I relied more on determination to keep going than I had optimism. That, and the love and support of Genevieve and all of you, my friends and family. If not for all of your support, I wouldn’t have turned the corner. Thank you for all you do!

Of course, I’ve been doing my part, with some help. I’ve been mall-walking an increasing number of laps every day with my good friend and brother-in-law Lorin, right up until the worsening pandemic caused us to rethink the plan. As a result, for the past five days I’ve gone back to walking up and down the hilly streets in my neighborhood for an hour with Genevieve. It’s far more physically challenging, and I’ve found I’m up for it. Also, at the suggestion of my palliative care doc, I’ve been using an inspirometer (4X/day, fifteen reps) to clear out the junk in my lungs and improve breathing capacity. It’s working!

In a few weeks I’ll have another CT scan and we’ll see how much more the cancer has shrunk. It’s the first scan I have looked forward to for nearly a year.

I’ll update you after the next scan. In the meantime, keep smiling

Finding hope in new places: First, in the chemo itself. Next, in this book by Jane Goodall given to Genevieve and me by our friend Linda.

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

Free Book, Panting, Patience, and Glowing in the Dark

Friends and Family,

I’ll try to be brief, but there’s a lot to tell you.

Four weeks after the decision to do tissue and blood biopsies was made, today my tissue sample made it to the Tempus lab for diagnostics. Bureaucracy and dropping the ball are the only explanations. Without my terrier self-advocacy, the sample would still be at the hospital. Teeth may have been bared once or twice, but I kept the growl low.

The question is always how far I can push before it becomes counterproductive. I think I toed right up to the line. In ten to fourteen days we’ll get the results, I’ll learn what mutations I have, and we can make a treatment plan. In short, the waiting coupled with frustration has not been easy, but at least there’s light at the end of the tunnel.

 Yesterday I finished my tenth and final radiation treatment to my spine. This stuff fascinates me. The piece above my head shoots radiation through a template targeted to my spine. The template was aligned by lasers to my tattoos. I got zapped for about thirty seconds, and then there were three more short bursts. Each burst was a more narrowly focused beam designed to get through thicker parts so there are no “cold spots” in the radiation pattern. See how the machine is mounted on the wall? After the first part is done, the entire machine rotated under me, and then I was zapped from underneath just the same. Didn’t feel a thing. After the last session, I was invited to celebrate by ringing the gong.

I didn’t expect the gong to mean much to me, but I got choked up. It’s a rite of passage. We just made it through one more step in this incredible journey, and I’m still standing. In fact, at this point I’m positively glowing.

The radiation keeps killing cancer cells for a couple weeks after finishing treatment, so I’m hoping for more complete pain relief by then. If not, I’ll have to wait three months to try again.   

 There’s also the heavy breathing – and don’t go there– I’m only talking about shortness of breath. It takes a couple of minutes to stop breathing hard after taking ten steps from the bathroom to my bed at night, so something has to change. It began around when radiation started, but the radiologist doesn’t think radiation is the cause because they avoided 95% of my lungs and no other symptoms line up. Unless the insurance company has their way, I’ll have a CT tomorrow to see if a blood clot in my lungs (embolism) is the cause. We don’t have a Plan B yet.

 Let’s move on to the happy stuff! In recognition of World Lung Cancer Day this Sunday, August 1st, I will be giving away FREE digital copies of my book. I can remind you that lung cancer kills more people than the next three leading cancers (breast, ovarian, and prostate) combined, that 60-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers, and that lung cancer receives just one-fifth of the research funding of breast cancer, but there’s a better story to tell. Chris Draft, the most extraordinary lung cancer advocate the world has ever seen, met with our local survivor group in Portland last month for the #WhiteRibbonProject. He was passionate in saying that the best thing we can do is let people realize that people with lung cancer are just like them. So that’s what I want to do, and I’m asking for your help. Send me a picture of YOU, my cancer survivor friend, living your life of joy. Include friends, family, and pets if you like. I’ll post every one of them, so people can see the faces of lung cancer look just like they do. Just include your first name, cancer stage, and year diagnosed. Send your pics to dannthrives@gmail.com.

Back to the free book. Follow this link on August 1st and the book is yours: Second Wind: Thriving With Cancer  I hope the book speaks to you, regardless of cancer.

 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

The Streak is Back On!

Friends and Family,

My six and a half year streak on Tagrisso is not over! Genevieve and I have never been more grateful for Dr. Patel, my UCSD oncologist, and for his expertise. If we had listened to my general oncologist, we would have abandoned ship and been ready to start a new one-size-fits-all treatment, plus get radiation. Instead, no changes are needed for now. We’re doing the happy dance!

When we met online today Dr. Patel looked at the same diagnostic images and the same radiologist report that made it seem like my entire body was being taken over by cancer, and said it looked encouraging to him. What is going on here???

The area of most concern to us was the lymph nodes. Dr. Patel thinks there is a strong chance that the lymph node “hot spots” are my body’s immune response to the COVID vaccine, and not cancer at all. This is important info for all women and all of my cancer friends to know: He sees a lot of inflamed lymph nodes in PET scans and mammograms after COVID vaccination, so he is giving anyone with inflamed lymph nodes a “Mulligan” (a do-over). If your oncologist wants to make treatment changes based on enlarged lymph nodes, it might be worth reconsidering. Dr. Patel expects it to take four to six months after vaccination for anyone’s body to adapt and the lymph nodes to settle down to normal.  

He noted that the tumors in my lungs hadn’t grown at all, even if they looked “hot.” In fact, one of my tumors had shrunk! I’m still scratching my head over that one. How does that happen, six and a half years after starting a treatment?

That only leaves the “hot spot” at the break in my rib. He didn’t address cause, though Genevieve and I wonder if inflammation in a healing bone is typical. He said we should avoid radiation unless I need it for pain relief, which I don’t.

This is a reminder about slowing things down and getting help from a lung cancer specialist. All doctors are not good at all things. If we had not gotten the second opinion, I would have given up on the most successful, easy-to-tolerate treatment options I could hope for long before I needed to, which likely would have shortened my life. 

I often tell people this, but all of the ultra-long-term survivors I know that are still in active treatment are strong advocates for themselves, and all have been in at least one clinical trial.

Thank you to every one of you who has reached out to Genevieve and me to offer your love and support. I am grateful beyond words. Doing the advocacy part is important, but without you I wouldn’t still be here. Love matters.

Genevieve and I are beside ourselves with excitement at this turn of events. My head is spinning and I’m exhausted. What a ride this has been.

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

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