Dale DeSteno | tissue biopsy | lung cancer | thoracentesis | tagrisso | trametinib | targeted therapy

DESCRIPTION

A kickboxer and an ultramarathoner in his early forties, Dale De Steno was in excellent health.  That’s why he was stunned to be diagnosed with Stage IV lung cancer.  Thanks to a targeted therapy regimen, he survived, but 18 months later, the cancer returned.  In the Autumn of 2023, Dale passed away, but his friends and family want you to hear his story, which he shared with the @CancerInterviews podcast.

TRANSCRIPT

Bruce Morton: Not everyone diagnosed with lung cancer is in their fifties, and not everyone diagnosed with lung cancer is a smoker.  That’s what we will learn from our guest on this episode of the @CancerInterviews podcast.  Dale De Steno of Maple Grove, Minnesota survived lung cancer, and did so as one who didn’t fit the profile a lot of people associate with the disease.  This is his story, here he is, and Dale, welcome to the Cancer Interviews podcast.

Dale De Steno: Hey, thanks for having me.  Happy to be here.

BM: Cancer is not the only significant presence in your life.  That’s why we would like to get to know more about, exclusive of your cancer journey.  So, if you would, briefly tell us a bit about yourself, where you are from, what you do for a living and what you do for fun.

DD: I have lived in Minnesota for 46 years, although I like to tell people I am an honorary New Jerseyan.  My folks moved here right when they had me.  I spent about 22 years in the executive recruiting and staffing industry for probably three different companies at that time.  Then, post-diagnosis I have since bought a kick-boxing gym and figured I wanted to fulfill items on my bucket list and that was one of them.  I have got two kids and am married.  Actually, my wife works with me at the gym as well. 

BM: In terms of your cancer journey, all of us have experienced that stage in which we thought our health was normal.  Then something happened that was abnormal, and it triggered a chain of events that led to a cancer diagnosis.  What was the chain of events like for you?

DD: The year 2021.  Fourth of July weekend.  I started realizing something was wrong.  That’s when things were opening back up from COVID and the world was starting to feel normal again.  I swore I had a summertime cold.  Actually the whole house did.  I didn’t get better and everybody else got better.  By August I didn’t get better, in fact I was much worse.  I had been training for a three-round boxing match.  I was training one particular night and I will never forget it.  I got hit in the stomach.  Nobody wants to get hit in the stomach.  I literally thought I was having a heart attack and thought I was going to die.  I packed up my gear that night and went home, started realizing something was seriously wrong.  Four days later, urgent care, then ER, then hospital, the rest is history.

BM: I guessing that as horrific as all that was, if there was any positive component to this, it is that if you were diagnosed with cancer, it was detected rather early.  Is that fair to say?

DD: Let’s put it this way.  The state I was in, they told me if I had waited two days to come in, I would have been able to walk into the hospital.  If I had waited two more weeks, they would have scraped me off the parking lot.  I was that far along.  What had happened was, they discovered my entire right lung was full of fluid.  X-rays barely showed the presence of my right lung to the point that the urgent care doctor asked me if I had had my lung removed.  I said that would be news to me.  That’s when we realized it was crisis lockdown mode.

BM: At that point were you diagnosed with cancer or were there other tests that had to be run?

DD: In urgent care, they basically told me I wasn’t going anywhere, that they would wheel me over to the ER, which was in the same building, and that I was property of the hospital.  Went to the ER and they started doing a lot of tests.  They started draining the fluid out.  I had a thoracentesis, where they drill into your back between the ribs and start sucking fluid out.  You wouldn’t believe how painful this thing is.  It took three days to drain all the fluid out.  On the first day, the fluid they got, they sent it out for testing.  By day three or four, they came to my room.  They didn’t know how severe it was.  They didn’t know anything at that point, but they said the tests showed that I definitely had cancer, and that more testing was needed.  After four days, they said there was no point in keeping me there.  However, the next two weeks was basically nonstop testing, PET scans, CT scans, MRIs, bloodwork, a whole bunch of stuff.  That’s when they determined it was Stage IV Non-Small Cell Lung Cancer.  Those are a couple weeks I won’t forget.  It was very, very intense and very frightening.

BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the bell icon, so you’ll be notified when we release our next cancer interview.  And if you or a loved one are facing a cancer diagnosis, please click in the link the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”

Dale, when you first got cancer, here you were, a guy who was healthy enough to compete in kickboxing, just how stunned were you to learn you had cancer?

DD: I was shocked.  I thought they had the wrong diagnosis, that they had the wrong room, that there had been some kind of mistake, maybe my test got mixed up.  It turns out they don’t make that kind of mistake.  None of it made any sense.  I had been in the best shape of my life.  A year earlier, in 2020, I was doing an ultra marathon, which was in the couple hundred mile range, you do it as a relay with other people.  I did 31 miles in something like 24 hours.  You can’t have lung cancer and have that happen.  I was absolutely convinced this was a mistake.  Shocked?  Yes.  Angry?  No.  Denial is almost the way I would put it. 

BM: Each type of cancer is different.  Some afford the patient treatment options, some don’t.  In your case, did you have options?

DD: I was pretty lucky, early on.  My oncologist said I had pretty much won the lung cancer lottery.  He said I was a candidate for tagrisso, which was an oral chemo pill.  It was $1200 a day.  They said they would start me on this and that I didn’t have to do conventional chemo.  They said they would try this and see how it worked.  Luckily, I took to it and did really, really well with it.  That lasted about 18 months, almost to the point in which I forgot I had cancer.  I felt pretty much back to normal.  Then, a blood clot formed in my right leg.  I was told to go to the ER because this could be bad.  They didn’t if the clot was caused by tagrisso, by cancer or by something else.  I went in, they did all the scans, they found the blood clot in my right leg.  I could hardly straighten my leg.  They found the blood clot, and it should be treatable with blood thinners.  So, 18 months in on the tagrisso, it was a pretty good run, but people have had much better runs.  Some people are six- or seven-year survivors with this pill and I thought for sure that’s where I would end up, and that was not the case.  What they had found during that time was not only had the clot progressed, but it had gone to my stomach and started showing up in the lung again.  Now it had mutated and they had to do extra tests to see if it was the same lung cancer or if it was something else.  That was a fun week, the week after New Year’s, 2022. 

BM: What was the next step after that?

DD: Here is what I would tell your listeners: Get a tissue biopsy.  We had done a liquid biopsy just to detect if there were any new mutations or if anything had happened in the cancer.  It showed that nothing had happened.  When we finally got a good sample of the tissue biopsy, it had shown that I had two different mutations that actually made things a little bit worse, but it helped to clarify what we were actually dealing with.  The big one that they had found was TRIM 24 BRAF, which is a type of cancer that is actually very common in colon and rectal cancer, as well as melanoma.  Very, very, very rare in lung cancer.  We were able to find, around the internet, one person that has the mutation I have.  So, we actually found her and did a phone call with her, and basically modeled my newest treatment regimen after what she was doing because there was no actual track record of how to treatment this type of mutation in lung cancer.  So, this was a pretty scary time.  Incidentally, she knew who I was because she had followed by blog before.  She knew all about me already.  We did a call, wrote everything down that she told us and took everything to our oncologist.  He looked at it and said we should give this a shot.  I am on Week Three of this new medication which I hope will treat this new mutation. 

BM: Dale, at first I was thinking your care team had dropped the ball, but the more I hear from you, it sounds like it was dealing with so much uncharted water.

DD: Probably a little from Column A and a little from Column B, if we’re being honest.  We felt our first oncologist may have dropped the ball and have moved on to our second oncologist, who prescribed this new medication.  But you are right, there is no question that these are uncharted waters.

BM: Now, I have to ask you something relating to lung cancer that has affected just about everybody that has been diagnosed with lung cancer.  We hear about this stigma attached to those with lung cancer.  Those who are uninitiated with the disease, may mean well, but they come from a place of ignorance when they assume those with the disease are smokers.  Has this been your experience?

DD: Yes, I absolutely have.  You are absolutely right.  They are well-meaning.  It is not like they are saying one shouldn’t have smoked.  They do ask, “Did you smoke?”  Being a product of the seventies, we all smoked in some capacity, then.  Any restaurant you went into would have ashtrays.  Historically speaking, I have smoked like two cigars in my whole life, and you cannot be a distance runner and kickboxer and burn heaters at night, it doesn’t work that way.  I appreciate where they are coming from, and I am quick to clear that up.  I think it was the year 2019 that they said non-smokers have exceeded smokers in lung cancer diagnoses.  The tables have turned quite a bit there.

BM: As you go forward, as you have led a very active lifestyle, I am just wondering if you could call pre-diagnosis, 100 percent, these days, how close are you to 100 percent?  What is it physically that these days you can and cannot do?

DD: Right now, on the new medication, I cannot do anything.  So, I just don’t have the energy for it.  I am trying to learn to manage these side effects of the new treatment plan.  A lot of it is more concerns food and nausea, that type of thing, so I don’t do much of anything right now.  At my gym, I am in there most every day, but I just work the front desk, but I don’t participate in any of the workouts or anything.  The group there has been extremely supportive.  There are a couple hundred members and they all know what’s going on.  I am still okay to shout at them and push them a little harder.  What does recovery look like to me?  I am hoping this new treatment plan will keep me stable for a little while.  To me, it would be just getting back in there and training again.  They are not going to let me compete anymore, but being able to get back in there and train would be an accomplishment for me.  During the first two years of my diagnosis, I would say I was about 90 percent of where I was before.  That gap in there concerned fatigue.  A lot of my diet has been restricted quite a bit.  I was still running, still training, but it is way down there now.

BM: Are you optimistic you can one day return to 100 percent?

DD: Cautiously optimistic, yes.  I think of what my life is going to look like in say, six months.  At the same time I am also a realist, and I know there is a ways to go.  You hear about people who their life is over when they get diagnosed and that is not the case with me.  It doesn’t have to be the case. 

BM: We have talked about the support that you have provided folks at your gym.  Now I would like to bring up an organization that has provided support for you.  It is the Twin Cities-based A Breath of Hope Lung Foundation.  If you would, tell us a bit about what A Breath of Hope has done for you and what it can do for others.

DD: A Breath of Hope has been absolutely fantastic.  They run a lot of charitable events, walks and runs, dinners throughout the year, stuff like that.  Two weeks after I was diagnosed, they knew who I was.  The executive director there called me out of the blue.  It was a bizarre thing.  She said she knew about the hospital where I was being treated, that the foundation had all these resources.  So, I jumped right in.  I didn’t know which way to turn.  I thought it would be a good group and it turned out to be fantastic.  It is a great group. 

BM: And A Breath of Hope offers a wealth of information through its website.  If you go to www.abreathofhope.org, that’s where you will find just all sorts of stuff that can be of help.  You don’t have to be in the Twin Cities to take advantage of these resources.  All right, Dale, we are going to wrap up now, and we conclude our interviews in pretty much the same way.  Specifically, we want you to envision your encountering someone who has just been diagnosed with lung cancer.  There might be lots of things you would want to say to this individual, but if there was one thing you really hoped would resonate, what would it be?

DD: That’s an easy one for me.  You’re right about the tissue biopsies.  I would also stress the importance of self-advocacy.  I think that with the internet and with telehealth visits all across the world, you can visit doctors in Japan, if you wanted.  Get out there, do a lot of research.  There is plenty of information online.  It used to be that one might be told, “You have cancer.  We have to give you chemo and shave your head.”  The joke is that the chemo is a success, but the patient died.  Those days are gone.  You can find targeted treatments, but you do have to be your own spokesperson, knowing that your priority is getting better, and nobody can make you do anything.  You are the boss of this journey, put it that way.

BM: Excellent.  Dale, thanks very much for your story, a story that has yet to be written in full, and we hope that the rest of the story goes just great.  Dale, thanks for being with us on Cancer Interviews.

DD: Hey, thanks for having me.  Fantastic.

BM: And as we always say when we conclude, if you or a loved on are on a cancer journey, you are not alone.  There are people like Dale and organizations like the A Breath of Hope Lung Foundation that can make that journey a bit easier.  Again, that web address for a Breath of Hope is www.abreathofhope.org.  So, until next time, we will see you on down the road.

Additional Resources:

Support Group:

A Breath of Hope Lung Foundation  www.abreathofhope.org

SHOW NOTES

TITLE: Dale De Steno – Lung Cancer Survivor – Maple Grove, Minnesota, USA

A kickboxer and an ultramarathoner in his early forties, Dale De Steno was in excellent health.  That’s why he was stunned to be diagnosed with Stage IV lung cancer.  Thanks to a targeted therapy regimen, he survived, but 18 months later, the cancer returned.  In the Autumn of 2023, Dale passed away, but his friends and family want you to hear his story, which he shared on the @CancerInterviews podcast.

Additional Resources:

A Breath of Hope Lung Foundation  www.abreathofhope.org

Time Stamps:

02:25 Dale got kicked in the stomach in a kickboxing match, which resulted in severe pain.

03:31 Doctors discovered his right lung was full of fluid.

04:40 Underwent thoracentesis, which led to a cancer diagnosis.

06:41 Couldn’t believe he was diagnosed with lung cancer.

08:40 Doctors prescribed tagrisso, an oral chemo pill.

09:32 Tagrisso worked well for 18 months, then a blood clot formed in Dale’s right leg.

11:54 A tissue biopsy revealed a mutation, TRIM 24 BRAM.

18:35 He’s cautiously optimistic about one day returning to pre-diagnosis health.

22:43 Dale stresses the importance of self-advocacy.

KEYWORDS (tags):

cancer

chemo

cancer interviews

tissue biopsy

bruce morton

thoracentesis

cancer survivor

tagrisso

dale de steno

trametinib

jim foster

non-small cell lung cancer

targeted therapy