Sticking the Landing: A New Option Appears

Friends and Family,

 Things are going far better than we could have hoped, and we’re excited! Once again, I have fallen and landed on my feet.

I must be on about my 16th life.

Genevieve and I were expecting to travel to LA or Denver for a clinical trial until my oncologist got me into a closed trial in Portland. She put me on the wait list fast enough so that when an opening came up, I was at the top of the list. Since the list could include people in South Korea, the UK, and many sites across the US, her speed made the difference. I only wish it didn’t mean others don’t get in.

The trial is for amivantamab, a drug that has already proven effective for my mutation (EGFR exon 19). The trial is to see if injecting the drug into belly fat is just as effective, while causing less side effects, than an infusion. There’s no guarantee the drug will work, but there never is.

 I’ll start the trial on Valentine’s Day. Almost fifteen months ago I started chemo on Genevieve’s birthday, which didn’t thrill me. She saw it differently. She said, “what a wonderful birthday present.” Chemo pulled me back from the brink. I’m hoping this trial turns out to be an even bigger gift.

Thank you to everyone for all of your support.

 Love,

 Dann

Wallowing, Advocacy, and Waiting

Friends and Family,

There should be another stage of grief, the first stage, called wallowing. That’s what I was still doing when I wrote the last story. I’ve gotten past that now, and I’m again remembering just how fortunate I am to even be here. I’m looking to the future again.

We don’t have a clear direction yet, but we do have progress. We were also reminded of the importance of being your own advocate.

Monday morning the hospital scheduler called and said that my records had been sent out to the clinical trial sites and that I had a biopsy scheduled for early Wednesday. So far, so good, right?

I reviewed the MyChart note from my last oncologist appointment to see if I had missed anything. The note included an update from the lab with a FedEx tracking number for my blood biopsy, so I followed up on it. The number was faulty.

Genevieve and I talked over how to track down the problem in a big hospital system, then I left my nurse navigator a message and crossed my fingers. Without the biopsy results, we don’t know what treatment will work for me.

That afternoon the scheduler called to say that a diagnostic imaging tech had cancelled my liver biopsy because there was no order to stop my blood thinner before the procedure. It didn’t matter that I had already stopped it - the order had to be in the chart. By this point our stress levels were mounting, and all our “stay in the moment” mantras were failing.

The last time my cancer started to grow it spread like wildfire, and we are still traumatized by the memories. Now I’m off chemo, so the cancer is growing faster. I called my PCP’s office and gave my best impression of a hysterical patient with that story. She said she would fix it and call back.

Several tense hours went by before a different diagnostic imaging tech called to give instructions for the Friday biopsy. I told her I was holding out for Wednesday, then gave her my hysterical patient story. She took the call to action and called my PCP’s office,  got what she needed, then called me back with a Wednesday appointment. It took advocating for myself and one compassionate person in the right place to solve the problem and prevent a treatment delay.

Next, my nurse navigator called. The lab found my blood biopsy in a refrigerator and put it out for pickup with a new tracking number. My oncologist was notified of the error and the nurse navigator submitted the event for a critical incident review. Given the mistake had already happened, it’s the best outcome we could hope for. The sample arrived Wednesday, so we’ll have the results in a week.

Also on Wednesday, I had my liver biopsy. But just before it started, I learned that this was the diagnostic imaging tech that had been the barrier to my appointment. I calmly articulated the impact her actions could have had on my cancer and the stress they caused for Genevieve and me. She told me how busy she was. When the procedure was over, I was still under conscious sedation from a drug which causes you to forget most of the procedure. Still, I made sure to remember what came next. I stopped the transport person from wheeling me out of the room until I told the diagnostic imaging tech that I wished that she had used the time she spent canceling my Wednesday appointment to call my PCP’s office and solve the problem. She was still defensive, but she heard me. I can only hope she’ll think about it the next time she’s in that position.

It looks like at least another week before the blood and liver biopsies are in and we have all the trial information. I’ll keep you posted.

Love

Dann

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

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

Smiling Faces + Get My Book for FREE November 1st - November 3rd!

Friends and Family,

In support of Lung Cancer Awareness Month I have taken on two projects this year:

First, one of the challenges for survivors is helping people without cancer understand that we are just like them. To address this, it’s time we show rather than tell. Starting November 1, 2022, check out two new tabs at the top of this blog, “Faces” and “More Faces.” It makes me burst for joy when I see what people have to share of themselves!

Next, I am offering my book for FREE for the first three days of November.

The book shares the lessons I learned in the first eight or so years of my 16+ year cancer journey. It’s full of hope, positivity, and realistic tips that should make your journey a little easier. It’s called Second Wind: Thriving With Cancer, and you can find it HERE!

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

Free Book this Thursday Only!

Friends and Family,

Second Wind: Thriving With Cancer will be available for FREE this Thursday only! This book shares the lessons I've learned about not only surviving, but also THRIVING with lung cancer for what has now been 16 years. Feel free to share the link. If you've read it already, feel free to share your thoughts about it with others. Here's the link: https://smile.amazon.com/.../B07C.../ref=tmm_kin_swatch_0...

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.

Go with the Force

Friends and Family,

We got an early Christmas present yesterday when we met with my oncologist. All of the news was good! The cancer has shrunk in my lungs, liver, and lymph nodes,  and with the help of the PleurX drains, the lung fluid is greatly reduced, which has left room for my lungs to expand and breathe. The cancer in my spine shows the scarring associated with the cancer dying off in the bones. Everything is going great!

Stronger the Force is becoming for this one, hmm?

Genevieve and I expected a good report because of how much better I’ve been feeling and how much more physically active I have been over the last several weeks, but good results were never a given. As Dr. Sanborn pointed out, few people have lived long enough to go through three different courses of chemo, so it’s not like she can point to research that shows that out of several hundred people, this is what you can expect. She didn’t know how my body would react to having carboplatin for a second time. (For the first course of treatment, in 2006, I had cisplatin, which only works well once for most people).  

I’ve never seen a doctor so excited to share my CT results with us before. Dr. Sanborn said that after all the bad news we were hit with in such a short period of time, it felt great to be able to share some good news. I should let her know that she’s welcome to share good news any time she wants,.

Next I have two more rounds of chemo with carboplatin, which will mean I’m finished with carbo just before Valentine’s Day. After that, I’ll get the the much milder Alimta by itself every three weeks for as long as it continues to work. Genevieve and I know people who have been on Alimta for years, so that’s our next goal: Years of Alimta every three weeks. My treatment plan won’t change as long as it continues to work. As Dr. Sanborn pointed out, if it ain’t broke, don’t fix it This also gives more time for other new treatments to come along. Any way we can buy time, we’ll take it!.

Thank you for all of your, love, encouragement, and support through the roughest time we have had since my cancer journey began fifteen-plus years ago. Your intentions, check-ins, positive thoughts, and healing energy have gotten us through these challenges. We are grateful for you.

                                                                   FREE BOOK!

For the past few years I have offered my book for free for three days in November, which is Lung Cancer Awareness Month. The book is what I have learned about not only living with lung cancer, but also thriving with it since 2006.

This year I didn’t have the energy to set it up in November, so I’m doing it now..

Get the electronic version of my book for FREE from Friday, December 17th through Sunday, December 19th! Just click the link: https://www.amazon.com/Second-Wind-Thriving-Dann-Wonser-ebook/dp/B07C9BWWB7/ref=sr_1_2?keywords=second+wind+thriving+with+cancer&qid=1639695331&sr=8-2

Love,

Dann

On the Rebound

Friends and Family,

Genevieve and I have certainly had our hands full or the past few weeks. Rather than take you through each step, I’ll summarize:

• A one-shot blast of radiation to a good portion of my spine to dampen the pain in my back, and perhaps knock down some of the cancer growing in my bone marrow.

• A biopsy to my liver while we were simultaneously draining the fluid from my right lung.

• A second procedure to drain the fluid from my left lung. We found out after the first lung that they won’t do both at one time due to the risk of having a collapsed lung on both sides at the same time.

• I started chemo two and a half weeks ago, and received a full dose of Alimta and 80% of the usual dose for carboplatin. We did this and crossed our fingers that my platelet count wouldn’t crash.

• Two days later I had a procedure to add two semi-permanent drains to my chest, one for each lung. These are designed for Genevieve and me to drain my lungs at home every other day for as long as my lungs keep producing extra fluid.

• I now have oxygen at home to use as needed. I occasionally use it at night when I’m struggling for air.

Despite all those hits to my body, I’m feeling better than I expected. This is me on the upswing!

The first big hit was the radiation, which left me nauseous within minutes of getting zapped, and along with fatigue, stayed with me for another 10-11 days. This surprised the radiologist, who acknowledged that it was probably because the radiation also zapped my intestines. A couple of days after the worst of those effects passed, I started chemo and fell back into fatigue and nausea. The first week after chemo, my platelet count remained low but relatively stable, so we had passed the first big hurdle.

Last week is when we got the good news. My platelet count shot back up to over 100,000, back to the normal “safe” range for giving the standard dose of chemo. Dr. Sanborn is confident now that the radiation is what was zapping my platelet count, and we are out of the woods (for platelet counts) from here.

The biggest remaining issues are that it is still hard to breathe, and while the fluid buildup in my lungs isn’t getting worse since we keep draining it, the fluid buildup isn’t slowing down, either. We’re hoping the next round of chemo this Wednesday will attack both of those problems, now that the rest of my body is cooperating better. If it doesn’t work, I’m not sure what options we might still have.

I’m doing my best to give my body all the help I can. Last week I started taking walks whenever possible. But these are not the hour-long hill walks that Genevieve and I have done daily since the pandemic began. These are flat ground, slow motion affairs. If we go up a very slight incline, Genevieve leaves me in the dust before she realizes it’s even happening. Breathing is that challenging for me at the moment. To compensate, and to stay out of the cold (I’ve lost what little meat I had on the bone, so I chill quickly), we have begun mall-walking in a nearby mall that is on its last legs. It’s not wonderful that the poor mall is struggling, but in the meantime it’s perfect for our purposes.

I’m still taking Tagrisso, and that has been approved by my insurance company for at least the next year, so it looks like we are attacking this cancer with everything we can for right now. There’s no new treatment on the horizon – just the hope that what we have already started works better when my body is doing everything it can to help out.

Thank you for all of your ongoing support – the cards, the meals, the texts and emails, the FB comments I confess I haven’t looked at in weeks. It all brings tears to our eyes, and lets us know that we are in this together. You are helping us get through the hardest parts I have experienced since this cancer journey began in 2006.

Love,

Dann

Evolving Plans

Friends and Family,

I’ll start off with the good news. Thank you for all your prayers and positive thoughts – we got the result we were hoping for. The cancer did not convert, so it is still non-small cell! Thank goodness for not-so-small favors. 😊

Our plans have otherwise been shaken up since I last wrote. I planned to start chemo last Friday, but my platelet count was too low, making chemo unsafe. Genevieve and I came around to the idea that it wouldn’t be so bad that we would have to wait another week until my body had time to recover from having fluid drained off both lungs, and from the one-and-done radiation to such a large section of my spine the week before.

Chemo was rescheduled for today, but this time my latest platelet count was even lower. That’s when Dr. Sanborn spelled out the realities of where we are at this point.

I didn’t know that my last biopsy showed that the cancer had gotten into my bone marrow. The cancer is now interfering with platelet production, which occurs in the bone marrow. Without chemo, we can’t kill the cancer in the marrow, and the platelets will continue dropping. That would put me at risk of an unstoppable nose bleed (I had one last week for three and a half hours), or some other bleeding event. However, if it works, it will kill the cancer in the marrow, and I will start to recover.

We had reached a now-or-never moment. If I didn’t do chemo today, there could be no other treatment options.

Genevieve and I agreed to take the risk. Today I had two chemo drugs, including a reduced dose of carboplatin along with Alimta. I’ll have a blood draw each week to see how my platelets are holding up. If all goes well, in three weeks I’ll have the next round of chemo.

Just to complicate things, this Friday I will have a drain put into my chest so that we can drain the fluid off as needed. It’s building up again.

Today is the birthday of the love of my life. When chemo got rescheduled for today, plans for lunch with her son, our granddaughter, and her twin sister were instantly set aside. I felt sad about taking away from Genevieve’s special day. But Genevieve reacted in a way that reminded me again just how amazing she is.

She instantly said, “What a great gift for my birthday!”  

Genevieve is the most incredible human being I have ever been privileged enough to have in my life.

Happy birthday, my 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

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

Dodging a Bullet

Friends and Family,

It looks like we dodged another bullet. The fun never stops, does it?

Last Tuesday, when we met with my radiologist before radiation treatment wrapped up, I asked one more time why I was having such difficulty breathing. He did everything he could to ignore the question, and even tried to blame it on anxiety, but this was a tug-of-war we weren’t’ going to lose. Finally, he said I should get a CT to see if I had a pulmonary embolism.

I had the CT last Friday. An hour after the scan I got a call from the resident who had been with the radiologist. He sounded rattled when he told me that I did have a pulmonary embolism, and that I should go straight to the ER to get started on blood thinners.

Of course it’s more complicated than that. Because of my cancer history and advanced age (slightly insulting), The ER doc wanted me to spend the night to get stabilized. After eight hours in the ER, I had my bed. Genevieve finally left the hospital at 2 AM.

We did learn a few ER tricks, however. Bring food, a cell phone charger, meds, and if you think you might spend the night, a change of clothes and a toothbrush. Lesson learned. We live close enough that Genevieve went home and got those things while we were waiting for the bed.

Because I had very minor pain in my calf they did an ultrasound on my legs, and discovered more blood clots. The treatment is the same, so it was just proof that I was in more of a mess than we thought.

The extremely fortunate part of all of this is that without getting the CT scan, we would have been sitting on a plane for six hours, which could have been fatal with blood clots. Of course, it’s not just good luck. If we had not demanded that the radiologist figure out what was wrong, we would have been on that plane, and Genevieve might have been writing the next blog.

The best explanation for why I got the blood clots came from my oncologist, Dr. Patel. I already knew that people with lung cancer (and it turns out cancers in general) get blood clots easily. But why now? Dr. Patel said that the steroids I have been taking since the onset of radiation may have been one last “blood thickener” that tipped me over the edge. Four days after starting steroids, the shortness of breath started.

It’s remarkable I could get blood clots anyway, since every day I take a low dose aspirin plus mega-doses of turmeric and cinnamon, which are all blood thinners. It’s a wonder I didn’t spring a leak like geyser if my skin was pricked. The combination probably kept me from getting a clot before now, but I’ve had to stop all of them while I take this medication.

There was a wonderful bonus to the CT scan. While they were poking around for blood clots they also looked at the cancer. The cancer in my lymph nodes has shrunk a little, and all of the nodes in my lungs are the same or slightly smaller! How can this cancer be shrinking, when it has been growing for the last few months? I give credit to all of you, and of course Genevieve, for your love, thoughts and prayers. Thank you so much! This doesn’t change what we need to do next, but it makes the waiting far easier when we know the cancer isn’t running rampant while we wait for the biopsy results. We should know more in a couple weeks.

Love,

Dann