The Time Has Come

Friends and Family,

About a month ago it became extremely difficult to get food down. Each new bite felt like my stomach was going to explode. We scrambled for three weeks to get the right professional involved before some great accidental timing helped out. I had a routine CT scan last week, which showed that the bile ducts connecting the gall bladder, the liver, and the pancreas to my stomach were swollen. That news bought me a quick trip to the hospital, where a procedure was done to unblock the ducts and put in a stint to keep them clear. That’s where the good news ends.

Today we met with Dr. Sanborn to discuss the biopsy results and find out what was causing the block. The news is not what we were hoping for: Lung cancer has metastasized to the inner lining of my bile ducts.

This cancer can’t be surgically removed, and it can’t be treated with radiation. Since it happened while I have been on patritumab duruxtecan, staying on that drug wouldn’t help. And I don’t qualify for any clinical trials, both because my liver is no longer functioning well enough and because there is no way to measure growth or shrinkage of the cancer in that area. In short, I am out of treatment options.

Within the next few days, I will be enrolled in hospice, which means that I am expected to live for less than six months. I will be on meds for pain and nausea to keep me comfortable, but nothing to treat the cancer.    

I have been extremely fortunate to still be alive almost eighteen years after I was first diagnosed, and I remain grateful for that. Having the support of you, my family and friends, has made an extremely challenging disease a great deal easier to cope with. And I would not still be here now if not for the incredible love and support that Genevieve has provided. I have been blessed with all the key ingredients to make not only surviving, but thriving, actually possible.

I truly appreciate all the calls, emails, texts, visits, and Facebook comments that you all send to me, but forgive me if I don’t respond to what I have shared with you today. I’m too overwhelmed to do anything more at this time.

Love,

Dann  

Over $80,000 Raised for Lung Cancer Research!

Friends and Family,

The results are in, and our lung cancer research fundraiser was far more successful than I could have ever imagined. Including the matching donation from our anonymous donor, 158 people contributed. We raised $40,200!

And I can’t thank Sally Rudney’s family, who supported the Sally Rudney Memorial Fund. THEY HAVE MATCHED OUR ENTIRE DONATION, dollar-for-dollar. That means that together, we raised $80,400 for lung cancer research!

The amount puts the EGFR Resisters over the fundraising goal of $400,000, which is enough to fund two more research grants that benefit people with the EGFR mutation, like me.

You can still donate for the next round of funding projects, and your donation will be doubled until the Sally Rudney Memorial Fund has been successfully depleted. Here’s the link: https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342

Thank you to everyone who contributed to this amazing project. You are making a difference!

Love,

Dann

Eyes on the Horizon

Friends and Family,

Things are looking up, at least enough so that my eyes are on the horizon. Genevieve and I got the results of my first scan since starting patritumab this week, and the results are positive. There has been no growth in the cancer.

There are people close to me who now take it for granted that any treatment I try is going to work. This is not the norm. Even my oncologist told me, “everything we try works for you.” I hadn’t thought of what an anomaly this is, and it gives me even more to be grateful for.

The necrosis in my jaw , the lockjaw, and the related infection are another matter. I lost twenty pounds since the beginning of the year between the lockjaw, the nausea, and the diarrhea (and gained back seven). I went off the antibiotics to help with the nausea and diarrhea, but the infection returned and my jaw tightened up almost immediately. However, there is another solution. If the antibiotics are taken IV, the gut problems go away. It’s taken a while to coordinate, but I had a port put in my chest on Thursday. After more coordination this coming week between docs from three specialties, I hope to start antibiotic home infusion. It will also make getting patritumab infusions, blood draws, and CT scans easier. Even though my veins look like a roadmap, for the past three years it has taken anywhere from 2-6 needle jabs to get an IV started. With a port it’s very hard to miss the target!

Once this is done, it will make it easier to go for longer walks and get out to do some spring yardwork. Quality of life matters, and I can see mine coming back. Eyes above the horizon again!

FUNDRAISING UPDATE: We blew right past my initial fundraising goal of $10,000, so of course I raised it to $15,000. Now we have blown past that! So far, we have raised $16,548! Thank you to everyone who has donated!

I’m hoping we can reach $20,000 by April 23rd, which is my birthday. What an amazing gift that would be! And remember, all donations made will be QUADRUPLED. Donate $1 and you have raised $4 for lung cancer research. That means that as of today, we have raised $16,548 x 4 = $66,192!!!

If we raise another $3,452 by April 23rd, we will reach $80,000! Donate today at https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342.  It helps to know that your donation is tax deductible to the extent allowed by law.

Love,

Dann

Update on Fundraising for Lung Cancer Research

Friends and Family,

I’m thrilled to tell you that my lung cancer research fundraiser has been a fantastic success so far. It’s been a week since we started fundraising and we are already over TWO-THIRDS the way to reaching my $10,000 Goal! Help push us over the top with your donation. Remember, whatever you donate will be QUADRUPLED!

This donation is tax-deductible to the extent allowed by law. Also keep in mind that some employers will match your donation. Imagine that you would then be octupling (is there such a word?) your donation! If you don’t ask, the answer is always no.

Thank you so much to all who have contributed so far. You are helping move lung cancer research forward at a time when new advances are happening faster than even most doctors can keep up with.

Here’s the link: https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342

Love,

Dann

Give to Lung Cancer Research and Your Donation will be Quadrupled!

Friends and Family,

I’m raising money for lung cancer research, and your donation has never had the opportunity to pack such a wallop. That’s because whatever you donate will be QUADRUPLED! For example, if you donate $100, then $400 will go to lung cancer research.

Here’s how it works. An anonymous donor has agreed to match any donations you and I raise together up to $10,000. When the donations are finalized and turned in to LUNGevity, the anonymous donor will double it, turning into $20,000. Then the Sally Rudney Memorial Fund will double THAT donation, turning it into $40,000!

The research is being sponsored by the EGFR Resisters in conjunction with LUNGevity, and the funds go through LUNGevity. The EGFR Resisters direct the research dollars to grants that have the potential for the most impact for people living with the EGFR lung cancer mutation, like me. This work could have a direct bearing on how long some of us live.

I know that good work is being done because I have been involved in one of the research grants. I reviewed clinical trial protocols and recommended changes, and I rewrote the informed consent document to make it was readable by a lay person. Patients direct what research will be done and how it will be carried out.

 I couldn’t be more excited by this opportunity. I hope you are as well. My goal is to reach $10,000 (before any matching funds) by my birthday, April 23rd. That gives us 30 days!

Here’s the link to the donation page: https://fundraise.lungevity.org/index.cfm?fuseaction=donordrive.personalCampaign&participantID=73342

Thank you for anything you choose to contribute to this cause that is so near and dear to my heart.

Love,

Dann

Close Calls and Big Dreams

Friends and Family,

The wild ride continues. After my final chemo round, Genevieve and I got lab results which showed increased fluid in my lungs and new fluid around my heart. Our hopes for me to buy more time by staying on ramucirumab alone for the next 6-12 months went out the window. But a parachute arrived just as it was time to jump out of the plane.

Dr. Sanborn had requested that I receive patritumab duruxtecan, a HER3 drug, through the Expanded Access (compassionate use) program. She made the request eighteen weeks earlier and approval came through just when I needed it. I had to wait two more weeks for the drug to arrive, then started it two weeks ago. Had approval come a little later, I couldn’t have waited. I would have had to start on a less promising early phase clinical trial, the only thing left on the board that I qualify for at this stage. How lucky can we get!

Even though it’s only been two weeks I already have less edema in my legs. The cankles are gone, and now it doesn’t look like every one of my piggies went to market - and ate the market.

The other part that has gone well has been my jaw. The antibiotics are working well. The pain is gone, and I can open my mouth wide enough to eat a sandwich now. It beats the liquid diet! I’m still dealing with antibiotic side effects (nausea and diarrhea), but even that has improved in the past few days. I can’t claim to look or be healthy yet – an elderly woman with a walker that had a chair attached offered me her chair while standing in line at the pharmacy - but I’m getting closer. Spring is just around the corner and I’m starting to think about gardening again. That’s a far cry from a few weeks ago when I couldn’t dream any bigger than getting off pain meds and getting a fork in my mouth.  

 Not my garden! This is a dream, remember?

Hoping my updates will remain cheery for a while!

Love,

Dann

It's More About Cancer Than I Thought

Friends and Family,

We’ve finally gotten to the bottom of my lockjaw and related jaw pain mystery. On Genevieve’s and my most recent visit, my oncology dentist spotted a hole in my gum. That led to a diagnosis that brought me to tears for only the second time ever in a doctor’s office:

osteonecrosis.

A CT scan confirmed that my jawbone is being eaten away.

I was aware that osteonecrosis was possible because I have been on a bone-strengthening drug (to replenish the parts of my spine that cancer ate away two years ago). It’s ironic that bone death is a potential (but uncommon) side effect of a drug (Xgeva) meant to strengthen the bone, but there you are. When we first heard the diagnosis, I had visions that something like this was coming next:

Fortunately, it doesn’t look like that is going to happen. The osteonecrosis is possible because of the Xgeva, but it also requires an infection. The infection came because of the exposed bone, and it is the infection that’s eating away at the bone. If antibiotics can get rid of the infection the osteonecrosis can be stopped or potentially reversed. There is a miniscule chance it becomes untreatable, which would result in cutting out a section of my jaw and replacing it with bone from my leg. That gives me added motivation to make sure treatment works.

The path is not straightforward, however. The infectious disease doctor is only guessing at which antibiotics to use without a bone biopsy, and I can’t open my mouth wide enough to get a bone biopsy from the exposed bone. If the oral antibiotics work well enough to open my mouth more, chances are there won’t be enough infection left in the bone to culture. As an added bonus, my tongue has rubbed raw against the exposed bone, making it painful to talk or even chew a slice of cheese.

This all sounds like a downer, but there is an upside. I started antibiotics Monday and the pain in my jaw has already subsided. Now I can open my mouth wide enough to get one finger in. Progress! If these antibiotics stop working, the next step is to have a central line put in my arm and have home infusion of a different type of antibiotics daily for 4-6 weeks.

Genevieve and I have been trying to get to the bottom of this since the pain began in October. Since then, we have consulted with no less than ten medical/dental professionals in pursuit of an answer. At every step, we had to push to get appointments and not allow them to put us off for a couple weeks. When I was referred to another professional, each time I got the phone number of that office and called them immediately. I have found that if a referral is made it can take days or even weeks before that office gets around to calling. You have to be your own advocate and push for care when you need it. Had we not pushed, we would be three or four steps back and still waiting for answers. I have a lot of compassion for people who don’t know how to navigate the system and get stuck waiting for care. It can make all the difference.

Thank you all for your amazing support. I couldn’t do this without you.

Love,

Dann

Not Everything is About Cancer

There are those occasions when not everything is about cancer. This is one of those times.

 It starts with headaches I’ve had all day, every day since chemo started. I believe it’s the ramucirumab since I had a similar drug (Avastin) eleven years ago and had headaches like this for over a year. I also had intense dental/jaw pain that led to a root canal six weeks ago. That pain never subsided and has morphed into lockjaw. As a result, I’ve been on a liquid diet since Christmas. Muscle relaxers and five sessions of PT haven’t helped, so I’ve seen an oncology dentist who specializes in both TMJ and oncology. A CT of my jaw revealed no necrosis (whew), so I’ll probably get an MRI in a couple weeks to rule out any tumors in the soft tissue. I don’t expect tumors, but I certainly want to get a new treatment plan soon.

 I’ve also been very concerned about the love of my life. Genevieve was recently diagnosed with temporal arteritis, which can cause blindness or stroke if left untreated. That was scary for a while until the diagnosis was cleared up, treatment got started, and we found a rheumatologist we trust.

 Meanwhile, our heater was out for three days, got replaced, and then the new heater went out for another three days until a faulty circuit board could be replaced. Like some old beatniks, our house was stuck in the fifties both times this happened.

 All of this didn’t seem as serious after someone very close to me had a heart attack. Three days later he had a quadruple bypass. His recovery has started out well, and he’s feeling fortunate this didn’t happen when he was on his recent three-week rafting trip in the Grand Canyon.

 Not everything has been this hard, however. Last week we got my latest scan results, and the cancer is still shrinking! There’s less haziness in my lungs and the fluid has decreased. When I finish my final round of chemo, which will be in five weeks, Dr. Sanborn is recommending that I stay on ramucirumab by itself for as long as it prevents the cancer from growing. If it works like the Avastin did (they are both angiogenesis inhibitors, which stop the cancer’s blood vessels from growing), that could give me another year before I need the next treatment. Despite the headaches, we’re excited! Anything that buys me more time means that there is more of a chance for new treatments to come along while I wait. I’m also hoping the PT can help with the headaches, given they mostly come from the back of my head and seem muscle related.

 So not everything going on in my life has been about cancer lately. But then again, some of it has been, like my recent hairstyle.

  Love,

 Dann

Join Me for a Podcast

Friends and Family,

I had the honor of being interviewed for Lung Cancer Canada’s annual Evening of Hope. The full-length version of that video was turned into a podcast, which I think turned out well.  

Ottawa Hospital oncologist Dr. Paul Wheatley-Price interviewed me about the evolution of lung cancer treatment over the past seventeen years, maintaining hope through treatment failures, the difference between surviving and thriving, challenges for caregivers, and other topics. The interview is heartfelt, vulnerable, and optimistic. Most people who read my blog should find this worth the listen.  

You can access the interview wherever you get your podcasts (Google Podcasts, Apple Podcasts, Spotify, etc.). Just search for “Lung Cancer Voices” and then select A Special Interview with Dann Wonser (2023 Evening of Hope) dated November 14th. While you’re there, check out their other podcasts. Or if you prefer, just follow this link:   https://open.spotify.com/episode/0coPRmXI8hKnwpM6OJoR0J.

I’d love to hear what you think of it.

Love,

Dann

Pulling a Rabbit out of the Hat

Friends and Family,

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

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

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

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

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

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

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

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

Love,

Dann

Free Book

Friends and Family,

I’ve thought about the different things I could do for Lung Cancer Awareness Month and decided I could make the most impact by giving my book away for free to anyone, whether they have cancer or not. From Monday, November 13th through Wednesday, November 15th, go to https://www.amazon.com/Second-Wind-Thriving-Dann-Wonser-ebook/dp/B07C9BWWB7/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1699741635&sr=8-1 for your free copy.

You are welcome to share the link and tell anyone you would like – the more the better. If you have read the book and wish to share your thoughts with others, please do so below. One last thing: It will help other people find the book in the future if you rate it and add a review.

Love,

Dann

I Should Have Been More Specific

Friends and Family,

I should have been more specific when I was sending out my intentions. I should have said, “I’ll take Door Number Three ONLY, Monty.”

We got the results of my bronchoscopy/biopsy yesterday when we met with my oncologist. It showed that I do have a bacterial infection, but it also showed that the cancer has spread.

The progression also means I’m kicked out of the amivantamab trial, so it’s time for Plan B. You know that old saying, “plan for the worst, hope for the best?” Over the past week, I went to www.clinicaltrials.gov and found 243 trials that fit my general criteria (in the US, Stage IV NSCLC) and filtered them.* In the end, I panned eight gold nuggets and put them on my spreadsheet.

But what I hadn’t counted on was how fast the cancer is progressing. Since I wrote nine days ago, it has become much more difficult to breathe. Now it takes about two minutes to catch my breath after rolling over in bed. Dr. Sanborn is worried that by the time I started a new trial, it would be too late. I can’t argue.

The new plan is to take a course of antibiotics for the bacteria and to start chemo tomorrow (docetaxel and ramucirumab) and do four to six rounds, three weeks apart, to knock the cancer back. After that we’ll go on to a new trial. Dr. Sanborn will filter through my spreadsheet and the six options that her research nurses generated and make a recommendation.

I would be lying if I told you that the news wasn’t a blow. I feel even worse for Genevieve. She was holding back the tears when she told me that she wouldn’t blame me if I refused chemo. I told her I am determined to live and get through this, so we can return to better times. Skipping chemo is not up for debate.

Last week she was choking back more tears when I was being wheeled in for my bronchoscopy. What I felt was nothing compared to what I saw on her face. She can’t stand to see me suffering on chemo (this will be my fourth course), but those nasty side effects are just part of the package to give me a fighting chance. I don’t see chemo as suffering at all. It’s just the price of admission. And I’ve gotten pretty good at bouncing back.   

I’m holding out a little ray of hope for rapid improvement in my breathing. I started the antibiotics yesterday, and today it seems easier to climb stairs without breathing like I just finished a marathon. It could be wishful thinking, but I’ll take it.

Thank you for the incredible love and support you give. It makes all the difference.

Love,

Dann

* For those of you who want to know my clinical trial criteria, they are: 1. Large enough to be more than proof-of-concept, which I guessed meant more than about 80 participants; 2. If trial is Stage I, trial has been open long enough that it’s likely past the dose escalation phase; 3. Trial site is in a major cancer center that has lung cancer specialists; 4. Treatment works with my EGFR mutation, which excludes any trials that use a PDL-1 inhibitor; 5) Trials that include the chemo drugs I’ve already been on; and 6. In the Western states. I’ll expand the states only if there’s no good alternative.

You can get one-to-one support finding trials or just use the trial finder tool at LUNGevity https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/find-clinical-trial or Go2 for Lung Cancer https://go2.org/treatments-and-side-effects/clinical-trials/. I’m sure there are other tools like this available.

I'll Take Door Number Three, Monty!

Friends and Family,

For the past month or more it has become increasingly difficult to breath, which has been a major concern for both Genevieve and me. My pace on our daily hill walks is much slower, and our mild yoga workouts seem more like cardio boot camp lately. I wanted this to be anything other than progression.

Leading up to last week’s CT and appointment with my oncologist, I tested myself for Covid, hoping to find an alternate culprit. No dice. Next, I looked up symptoms for RSV, but that wasn’t a fit either. Genevieve and I both were losing sleep, but held out some hope, even if we couldn’t think of what else it might be.

Our worst fears made it easier when my oncologist told us the scan results were unclear. None of the cancer spots had grown, and one in the liver had shrunk. On the other hand, some fluid has built up in my lungs. But the biggest puzzle was a cloudy haze on the scan that looked a little like the Milky Way.

It could be cancer, but it could also be inflammation caused by the amivantamab. If it is inflammation and I were to get another amivantamab injection, it could cause a lethal pneumonitis. Either cancer progression or inflammation would mean I was done with this clinical trial. But there is a third option. It could be some kind of infection, possibly bacterial. That would be treatable, and I could stay on amivantamab.

I was in the first generation whose parents discovered that television made a great babysitter, which is probably why I watch so much TV now. I grew up watching Let’s Make a Deal. I want to play that game now and say, “I’ll take Door Number Three, Monty.”

Except I don’t get to choose which door opens. For that, I will have a bronchoscopy this Wednesday and we will wait for the results.

But not everything is out of my control. Since I can’t have amivantamab as scheduled, the cancer will be growing until this is resolved. I prodded my oncologist to take a liquid biopsy sample last week and send it out for genetic testing immediately.

If I do need to find a new treatment, last week’s biopsy will shorten the time I am without cancer meds by about two weeks, which will limit the chance that the cancer will flare out of control. I share this part of the story with you because it is so important to take every opportunity to take fate into your own hands and be your own advocate. Sometimes, like needing to find a new oncologist, the need to do something can be obvious. Other times you have to think through every angle and see if there is more that can be done.

Here’s another one. The trial has a rule that makes sense from a bureaucratic perspective but is clinical lunacy. If you miss an injection date by a week, you must skip a cycle and wait until the next month. I’ll miss this window., but I wondered. If being a week late is OK, could I be a week early? I would be untreated one less week, assuming I can restart the treatment at all. I asked my trial nurse if we can schedule a tentative appointment a week early and cancel if I can’t stay on the meds. No word back yet, but this is just one more way to fight for my own health.

I hope those of you with cancer or other health problems will take heart, and that if you don’t have health problems, you keep it in mind. Everyone has health issues at some point.

Love,

Dann

Grieving

Friends and Family,

I avoid negativity. I try to be uplifting to other people through my blog and personal connections. I do the same for my own benefit because we could all use more realistic positivity. But sometimes bad things happen, and not talking about them doesn’t make them go away.

Even meditation doesn’t help sometimes.

I just lost a friend to lung cancer. I’ve known Helen for almost five years through our local survivors’ group that meets every month. She was a good human being who cared about others, worked for causes greater than herself, and fought like hell to stay alive. It hurts so much to lose her. Nine months ago, we lost Dawn, and I still think about her almost every day. I do a double take every time I see a picture of her daughter Nikki on Facebook because I see so much of Dawn in her.  A couple of years before that there was Carla, and before that Lyn. There have been others I’m afraid I can’t remember, but chemo brain still causes me memory problems. And there are many other friends from everywhere else whom I have also lost to lung cancer. Yet despite all the losses that pile up, I hope that you, too, can find a local survivor group to be a part of. The reason it hurts so much to lose these people is because of how much they all meant to me, because of how much I benefited from being with them. It has been worth the hurt.

One of the reasons many elderly people get depressed is that they outlive the people they care about, so they are in a near-constant state of grief. It’s like that with lung cancer, except it doesn’t matter what age you are, and we lose people faster. Knowing we may also have to say goodbye one day makes it harder to get close to people with the disease.

But I keep trying, keep reaching out. My world is richer – and I’m a better person – because of each of these people, and the pain is tempered by the good memories. And I’m convinced that every one of them lived better, richer, longer lives because they were part of our community. That brings some solace.

Early on, I struggled with survivor’s guilt. Why should I get to live while another person, perhaps one more worthy than me, doesn’t?

This is something I struggled with for years before my therapist pointed out the obvious: “So you think that this is a zero-sum game? That because you’re alive, someone else isn’t? That you’re taking their place?” I thought about this, along with something else he said that was thought-provoking: “Maybe it’s the opposite. Maybe because you live longer, you inspire others to live longer, too.” I think he’s right. I think that’s a good part of why I write my blog.

I had my scan last week, and the cancer is stable. I’m going to celebrate that, even as I think about the losses, because that’s how we make it through this.

Love,

Dann

Get a FREE Copy of My Book on August 1st

Friends and Family,

To celebrate World Lung Cancer Day I’m giving away FREE copies of my book, SECOND WIND: THRIVING WITH CANCER on Tuesday, August 1st. In the book, I share my experiences learning to not only live with lung cancer, but to thrive with it.

This offer is open to everyone. I ask a small favor in return. If you could take a minute to rate the book on Amazon after reading it, and better yet, write a review, it will make it easier for other people to find it. If you already have a copy, that review would still be helpful!

Seventeen Candles

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

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

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

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

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

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

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

This was the second time my flame almost went out.

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

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

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

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

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

Threading this big needle looks way easier!

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

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

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

As if a picture could do her justice!

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

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

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

Love,

Dann

Fireworks, Bureaucracy, and Super Docs

Friends and Family,

We got the scan results last week from my latest CT. Anyone with cancer knows that no matter how good you feel, you can’t always tell when the cancer is on the move again. I was feeling good, but still not confident we were going to hear the magic word, “STABLE.”

And we didn’t.

Instead, the cancer had shrunk again! We’re still smiling, a week later. Cue the fireworks! No need to wait until the Fourth of July!

Now I’ll tell you what else we’ve been up to. I was ready to schedule a flight to Denver to get into one of four trials at University of Colorado when I got into the amivantamab subcutaneous trial in my hometown of Portland. Even after I got in, Genevieve and I flew twelve hundred miles to sign informed consents and have my tissue biopsy tested in Denver. Why would I do that when I was already in a new trial? Because we didn’t know if amivantamab would work, or for how long.

I’m glad we did it. I’m four months into this trial. But if had not worked, or if it stops working soon, starting over takes time. That time can be life-critical once the cancer starts growing.

This will show you how critical time can be. It takes a week or two to get an appointment in Denver. Once I had the appointment and signed their consents, it took more than a week for the hospital to request my tissue biopsy be sent from Portland. It then took another three weeks to find out that I didn’t qualify for any of the four trials. That means it would have taken five or six critical weeks while my cancer was growing to find out I didn’t qualify and would have to start over elsewhere. I’d like to tell you that the bureaucratic delays I experienced are rare, but I have run into the same kinds of issues in two other hospitals. I’ll spare you the details, but it took two months from when one oncologist told me he would order a liquid biopsy to the day I received results, even though I was prodding every day to keep the wheels turning.

In the future if I need a new trial, I already have a foot in the door in Denver. This will hopefully can cut weeks of delay out of the process when timing becomes critical and I’m trying to stay alive.

A huge factor in all of this is your oncologist. Here is what I think makes an excellent oncologist:

  1. THIS IS THE MOST IMPORTANT THING: THEY NEED TO BE A LUNG CANCER SPECIALIST. I have had seven oncologists, and the two that almost got me killed were the only ones that were not lung cancer specialists.

  2. They react quickly. As soon as your cancer shows progression, they order a new biopsy. (Always get a new biopsy!) As soon as the biopsy results are in, they search for treatments that are a fit.

  3. They collaborate with you. You discuss the options together and make a plan. This may mean that they call you and not wait for your next appointment. Time is critical!

  4. They are open to clinical trials. Every survivor I know with active cancer that has lived for at least ten years has been in at least one clinical trial, and some have been in six or seven! I’m on #3.

  5. They strategize when to stop your current treatment. If you are entering a trial, that trial will have a “washout period,” which is the time you must be off your old treatment before starting the new one. If they discontinue your old treatment but it takes six weeks (like my Denver example) to get into a new trial, your cancer could be going wild. You want to remain on the old drug as long as possible before starting the new.

  6. They make contingency plans. Ask your oncologist, “What do we do if this treatment fails?” and don’t let them leave the room without giving you an answer.

  7. They really care. Nothing has made me feel safer than hearing my oncologist say that even if I was in a trial somewhere else, she would always have my back.

I’ll get off my soapbox now. I hope treatment is going well for you, and if not, that you have a plan of attack.

Love,

Dann

Who Knew This Was a Leap Year?

Friends and Family,

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

The real magic happens when those spots disappear!

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

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

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

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

Love,

Dann

Surviving Another Clinical Trial

Friends and Family,

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

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

Sorry - this is a No Smoking zone.

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

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

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

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

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

I hope you are doing well.

Love,

Dann