September 1, 2025 • 30 mins
When Navy Captain Jeffrey Sapp began feeling unusually fatigued while working in Saudi Arabia, he initially brushed it off. This decision nearly cost him his life. Medevaced to Georgetown University Hospital, he received devastating news—he had primary plasma cell leukemia, a rare and aggressive blood cancer with a typical survival rate of just 7-12 months.
Captain Sapp takes us through his remarkable military career commanding six ships and serving as aide-de-camp to the Chairman of the Joint Chiefs of Staff before sharing the harrowing details of his cancer journey. After five consecutive days of chemotherapy and 24-hour dialysis to address kidney failure, doctors still weren't optimistic about his chances. That's when an experimental treatment called CAR-T cell therapy entered the picture.
This groundbreaking therapy—where scientists extracted his T-cells, genetically re-engineered them to specifically target cancer cells, and reinfused them—has kept him in near-complete remission without chemotherapy since 2023. The treatment, costing approximately $450,000, represents decades of painstaking research that simply wouldn't exist without consistent funding.
"When you cut funding for someone who has cancer, it's like taking a life vest off of someone who is drowning and calling it budget reform," Sapp explains with unmistakable urgency. As we mark Leukemia Awareness Month, his story serves as a powerful reminder of what's at stake when research funding faces cuts—real lives hang in the balance.
Sapp encourages listeners to become advocates by learning about cancer, engaging with those affected, and speaking up for continued research. Even as he now faces a new diagnosis of prostate cancer, his message remains steadfast: "Never give up, never surrender." His journey from military leader to cancer survivor to passionate advocate reminds us all that behind every research dollar are countless stories of hope, perseverance, and lives worth saving.
Be sure to check out Captain Sapp's excellent TED Talk.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Larry Zilliox (00:00):
Good morning.
I'm your host, Larry Zilliox,Director of Culinary Services
here at the Warrior Retreat atBull Run this week.
Our guest is Jeffrey Sapp.
He's a retired Navy captain andhe authored a paper and a TED
Talk that caught my attentionand it's called Cancer Didn't
(00:22):
Kill Me, but DisastrousGovernment Funding Cuts to
Cancer Research Might and Iasked Jeffrey to join us.
He has primary plasma cellleukemia.
September is Leukemia AwarenessMonth, so I wanted him to come
on and talk about his journeyand some of the research that
(00:45):
affected his life and the cutsthat may come to that.
I think.
Jeffrey, welcome to the podcast.
Thank you, larry, pleasure tobe here.
So if you would, for ourlisteners, explain to them what
a Navy captain is, because theymight be used to Air Force, army
(01:06):
Marine Corps captain is alittle bit different.
Jeffrey Sapp (01:09):
A little bit different.
Well, in the Navy we work for aliving.
That's the first difference.
Now Air Force and Army aregreat guys.
It is equivalent to alieutenant colonel Correction, a
colonel in the Air Force, armyand other services.
Okay.
Larry Zilliox (01:25):
So you would be in the Navy, you would be a
commander, would be a lieutenantcolonel and then a captain
would be full bird.
Jeffrey Sapp (01:35):
Yes, sir, Okay good.
Larry Zilliox (01:38):
Talk a little bit about the start of your career
when you joined.
I know you're a graduate of theNaval Academy.
You played football for theNaval Academy, which is really
cool.
When was that?
When did you join?
Jeffrey Sapp (01:49):
1973.
Wow, my dad was focused ongetting one of his sons into a
Naval Academy, into an academy.
My oldest brother went toVietnam.
He's off the table.
My second oldest brother wentto the FBI Academy he's off the
table.
Come to Jeffrey.
He's the last one there.
(02:09):
Now this is high school.
I had over 62 athleticscholarships or letters of
intent you know to go to schools.
I didn't need any of this stuff.
But he really pressed and saidI really want you to do that.
He's an old Army guy and backin the day if you're black you
couldn't be an officer and ifyou did during the war they
(02:30):
would propone them up and thenput them back down to warrant
after that.
So he wanted really to see oneof his sons come out as an
officer and he put the pressureon.
I like to say we took a voteabout if we were going to go or
not.
I won the vote, he vetoed thevote and I went to the Nathan
Academy.
(02:51):
Okay, While I was there I feltoutclassed.
They have some very intelligentpeople there, fantastic faculty
.
I had to struggle and therewere some times they wanted to
invite me to go home, but Istuck in there, got my grades up
, went great, made it tograduation and, by the way, I
(03:11):
didn't graduate at the bottom,which obeys me based on my
performance.
I got out.
I became what they call asurface warfare officer, going
to sea.
You have submarines, you havepilots, you have service warfare
officers.
So I went to sea.
Long story short 11 and a halfyears at sea is what I spent,
(03:34):
which was fantastic.
The best part about that,though, was, as I got more
mature, more senior, I actuallygot command of a ship, and I got
command of another ship, and Igot command of another ship.
Wow, Another ship, Six ships.
The best one was the destroyer,USS Ingersoll DD-990.
Larry Zilliox (03:54):
Wow.
Jeffrey Sapp (03:54):
That's the one that I would die for.
To go back to take command ofWow and being in command of a
warship is a beautiful thingKangaroo Shore, basically
strategy policy things like that.
I did have an opportunity toserve as a senior aide-de-camp
to the chairman of the JointChiefs of Staff, which is really
interesting, and deputydirector of the Navy-wide
(04:15):
personnel system, which was kindof cool with it.
So I've been at some prettygood high levels with my career.
Towards the end, when I decidedto get out to retire after 30
years, I ended up going to do amotivational speaking, which is
that's my main thingmotivational speaking to
(04:36):
encourage people, inspire themto achieve higher levels of
success.
I also did business consultingand leadership consulting and
being a leadership advisor.
Larry Zilliox (04:45):
I was that for Department of Homeland Security,
for National GeospatialIntelligence Agency, Gosh, I
can't think of the other onesthat I was, but it all was
helping federal agenciesincrease the performance of
their workforce, Right, and soit gave me a little bit of
(05:05):
experience there, Tell a littlebit about that period of time
where you started to get sickand my recollection is you're
overseas on assignment and thencame back to the States for
medical treatment and testingand then there's a point in time
where doctors say to you youhave a very serious illness and
(05:26):
it's a very rare illness and ithas a very low mortality rate.
When was that?
What was that like?
Jeffrey Sapp (05:46):
job with the defense contractor to work in
Saudi Arabia, work and live inSaudi Arabia overseeing projects
that supported the Royal SaudiNaval Forces.
So I was in their headquartersand speak with the admiral every
day and other folks like that.
The exciting part of it was itwas like a clean sheet to apply
my knowledge and my skills to,and it was going great.
I made great associations andgreat friends with the Saudis.
(06:09):
Matter of fact, I wouldn't mindgoing back there and living
because they treated me verywell and if you reciprocate it,
they treated you even better.
So that's how I was doing.
And then, all of a sudden, Istarted feeling really tired,
not tired like I woke up in themorning.
I didn't get a good night'ssleep.
I felt fatigued, I was losingweight, I couldn't urinate, I
(06:31):
felt dizzy and confused andeveryone said go see a doctor.
No, not, you know, I'm suckingup buttercup, you know.
Finally, I went to go see adoctor.
They went in Saudi.
They ended up hospitalizing mefor five days.
They said I had something calledmonoclonal gonopathy, of
(06:52):
undetermined source orsignificance, which was it's
like a precursor to cancer.
Not everyone who has it called,mgus, for short, everyone with
MGUS doesn't develop cancer butsome do.
I was one of the some that didso.
When they saw that they figuredthat two reasons Getting lab
(07:14):
work over in Saudi sometimestakes a day a month, a week.
They suggested I come back tothe States where I can get
better treatment, where they doit more often for cancer, in
case I had it.
They thought it was coming onso they medevaced me.
They discharged me on a Fridayafternoon I think it was Friday
(07:35):
afternoon.
They flew me Friday night tothe United States.
I arrived the next day, went toan ambulance, went right to
MedStar Georgetown UniversityHospital where they had a room
waiting for me and put me rightin, and that's when I started to
think that something more wasgoing on.
While I was in the room, theywere doing blood tests to
(07:58):
confirm things.
I developed pneumonia, I hadextreme pain in my body and the
doctors decided that it was lifethreatening, and so they put me
in intensive care, and that'swhere I stayed for the next 45
days Wow, until they let me goand to do more stuff.
When I was in the hospital, thedoctor came out and told my
(08:21):
wife before all of this started.
I got to tell you that he maynot go home, basically, or die
there with it.
It turned out I had so much ofthe cancer in my body.
Primary plasma cell leukemia isa blood-borne cancer.
When it's in you, you can'tradiate it, you can't cut it out
(08:42):
, it is all over the place.
And what had happened?
With me dragging my feet,seeing a doctor and taking my
time?
It started to build up.
Cancer had a very good footholdin my body.
And so what the doctors endedup doing to save my life?
I went through five consecutivedays of chemotherapy.
Try one, not fun, try five.
(09:05):
I also went through a dialysis24-hour dialysis by my midwife
to change out the toxins in myblood because my kidneys had
shut down.
There's something calledM-protein that gets into your
kidneys, kind of shuts them down.
So they zapped me with chemo.
They zapped me, they gave methe dialysis and then they
(09:28):
started to treat me.
I still got chemo every otherday or some frequency there, but
they had to go in and kill whatwas there and chemo, as you
know, wipes everything out.
It's not all a lot of fun, butthat got me on track and went to
the next phase of my treatment.
Larry Zilliox (09:48):
All right, which part of your treatment would you
say was the most successful orbrought you the most relief?
Jeffrey Sapp (09:55):
Brought me the most relief, as easily as called
CAR-T cell therapy.
Larry Zilliox (10:01):
Okay.
Jeffrey Sapp (10:01):
Now this is kind of neat and this is also why I'm
an advocate for researchfunding and why we got to keep
it up.
20, 30 years ago you neverwould have imagined CAR T.
No one did.
And back then you go back about10, 20 years when people got
primary plasma cell leukemia.
The longevity was seven monthsto 12 months, depending on what
(10:27):
story you look at.
And then if you did well andyou got over it, it never, ever
really went away.
It's in your system because thecancer's there.
So what CAR-T does is this theytake your body, they zap it with
chemo, they kill the cellsagain.
This is leading up to thetreatment where I was
hospitalized, I think, for 30days.
(10:48):
While I was zapped, they tookout my T cells, immune cells,
sent them off to a laboratoryand they re-engineered them to
go specifically after cancer.
It's like a special ops team isto the military specifically.
So it doesn't go after my hair,it doesn't go after my liver,
(11:10):
my heart, it goes right there.
And you know what?
It was an interesting way thatthey gave it to me and I had
responded, but in the long andshort of it, it killed the
cancer.
It didn't kill all the cancer.
I'm what they call near completeremission.
I still have cancer.
I will always have cancer.
(11:30):
I'll probably die of cancer,that's not a problem.
But the CAR-T better than thechemotherapy, was able to get me
on steady state.
I have not since 2023, have nothad chemotherapy and up to that
point I've been through one,two, three, four different
treatments, multiple variationsof chemo drugs and anti-cancer
(11:56):
drugs.
It put me in remissiontemporarily, but then it always
come back.
That's when the doctor said wehave a clinical trial.
You should go for and for CAR Ttherapy, explained what it was
and they're very, very carefulabout it?
Larry Zilliox (12:11):
Yeah, so they take these T cells out of your
blood.
Did you feel different?
Jeffrey Sapp (12:19):
No.
Larry Zilliox (12:20):
Okay.
Not at all, and when they putthem back in the new recharged
ones, did you feel any different?
Jeffrey Sapp (12:25):
No sir.
Larry Zilliox (12:26):
No, you don't feel any different.
Jeffrey Sapp (12:27):
One thing about that I got to tell you.
I mean, this is some high-levelstuff.
Taking a sale, reengineering itand giving it back.
I mean you talk death, you talkillness, you talk all sorts of
stuff it could be associatedwith it.
To make sure that it took andalso to make sure that I didn't
suffer from neurotoxicity.
(12:47):
That was one of their mainthings to see.
If they took, if I started toact goofy and my brain power was
starting to die, they had to dosomething else.
So the way they checked that,they gave me a statement to read
and it says I got my supersales at VCU.
You had to read that and simpleenough to do and you also had
(13:12):
to write.
I got my super sales at VCU andthen a nurse would come in and
say what's that on the wall?
A clock?
What's that A desk?
What's that A pencil?
Okay, you're confined with it.
I thought it was kind of silly.
But you know what?
There's a time and I have it inmy book, I'm coming out with an
example of it where my writingwas perfect and then on day five
(13:36):
after the transplant it lookedlike a kidney carmine or Rydland
.
I couldn't read it myself withit, and then I couldn't say what
the T-cells did for me andanything like that, so I was
hinting on the neuroplexicity.
They got on top of it, theyfixed it, discharged me for 30
days.
I had to live next to thehospital for 30 days, going
(13:58):
every single day to be checkedto make sure that the TESOLs
were doing what they're doing,and so when you were writing and
it was going south on you?
Larry Zilliox (14:08):
did you realize it?
Jeffrey Sapp (14:10):
No, yeah, I did not.
I did not at all.
I had trouble doing the letters, but in my mind's eye I was
doing great.
But if you look at it and againI put it in my book you look at
when I first started it looksgreat.
Look at that one day and thatwas a tipping point for me that
one day where I was totallyjacked up.
(14:31):
They got on top of it and gotme back on track.
Larry Zilliox (14:35):
And I did great.
So that was something that theydid every day to just check
cognitively that you weremaintaining a straight line.
Jeffrey Sapp (14:43):
Every single day.
Larry Zilliox (14:43):
And so this program was experimental.
This is not a therapy that isavailable today to anybody who
wants it, needs it, or is itstill in the experimental stage?
Jeffrey Sapp (14:56):
It's still experimental.
The clinical trials is wherethe experiment comes in.
It's experimental through thesense that it's accepted by FDA,
but they're still kind ofchecking it out, and so I'm part
of that.
The one thing with me because Ihad dialysis, I had my kidney
wiped out.
(15:16):
They ended up making my ownunique FDA clinical trial with
CAR T therapy to see how Ireacted to it, with the kidney
not being there, as opposed toother people who didn't have
that kind of situation.
Yes, sir, and it turned out thatit did well.
I went back up follow up.
Larry Zilliox (15:36):
It turns out that they used what they learned
from me as a protocol forhelping other people for helping
other people, and do they, thefolks behind the clinical trial,
have any sort of understandingor maybe an estimate of when
they believe that this might bea therapy that's available to
(15:57):
anybody who needs it, out ofclinical trial but into
mainstream medical treatment?
Never had that conversation.
Jeffrey Sapp (16:04):
Wow, I was just happy to be alive with it.
The only thing that they toldme the doctor said because they
said well, how long is thisgoing to last?
He says T-cells are the giftthat keeps on giving.
Once they're in your system,they should continue running the
course.
If they don't, then we'll go toanother level.
Like I said, since 2023, nochemotherapy I've been feeling
(16:26):
well.
I have days when I'm off alittle bit.
I have part where my cognitivedissonance gets jacked up
because of the cancer.
Yeah, the medication and thecancer, sure, but other than
that, I'm starting to becomemyself again.
I've not been that since I wassick.
I have this energy.
(16:47):
You wake up tired, you go tosleep tired, I can sleep for
five hours or I can sleep foreight or 10.
I still feel fatigued andthat's just something I got to
deal with.
Larry Zilliox (16:56):
Yeah, let's talk a little bit about how critical
funding is for this type ofresearch.
I mean, is it done at NIH or isit done at a university and
funded by NIH?
Jeffrey Sapp (17:09):
It's done at a university.
It's funded, I think, by theprivate sector and NIH.
I would assume I wasn'tinterested at that level, but
the university and I forget thedoctor's name that came up with
this they came up with the CAR Ttherapy.
They ran it through.
(17:29):
Fda got approved to do theclinical trial.
Now they do CAR T therapy forat least three types of leukemia
, plasma cell leukemia being oneof them.
So they kind of ran the wholeshow and I think the money was
part government, part privatesector.
Bristol-myers Squibb was thefolks that kind of stepped up to
(17:53):
the plate for me On thepharmaceutical side.
Larry Zilliox (17:55):
Yes, sir, yeah.
Jeffrey Sapp (17:56):
Yes sir.
Larry Zilliox (17:56):
Well, clearly this type of long-term research
can't take place unless it'ssubsidized.
I mean, it can be subsidizedfor a while by corporations and
maybe universities, but withoutgovernment funding it's
eventually going to dry up, andpart of the problem there is
(18:17):
that when research goes away, sodo research scientists.
Jeffrey Sapp (18:22):
Absolutely.
Larry Zilliox (18:23):
And then they end up going to work in maybe
Canada or Switzerland or othercountries that are opening their
doors and making moving therevery easy, because they value
knowledge and expertise, andit's a drain on this country to
see research end and researchscientists leave.
(18:47):
What's the best way for ourlisteners to alert their elected
officials that this type ofcancer research and all cancer
research really needs tocontinue to be funded?
Jeffrey Sapp (19:01):
Before I ask that, let me tell you one thing about
the funding, why it's socritical.
Based on who you talk to, mytreatment was $450,000.
And you don't find that layingaround.
I was at the hospital for afterthe treatment for 10 days and a
half, for 30 days, coming backin Quite a bit expensive to it
(19:25):
and without that money Iwouldn't have been able to go
through what I went through.
Larry Zilliox (19:31):
Well, insurance is not going to pick that up.
Jeffrey Sapp (19:33):
Oh, hell, heck.
No, no, I didn't with it, butthat's why this funding is
critical.
It's also the research.
You got to keep the researchgoing because you don't just
wake up one day and say, aha, Ihave a solution.
They kind of build on it, buildon it, build on it and I'm
living proof of that and whenthey got something like the
(19:54):
carotid cell therapy, they applyit and it starts to work.
Now they've got to improve that, because the cancer is never
going to go away.
That's a fact.
For someone who is interested inwanting to be an advocate, to
learn more or to be engaged isnumber one learn a little bit
about cancer.
I was one of those guys.
(20:16):
I would never do cancer.
I wouldn't talk with anyone whohad cancer, you know, it's just
.
I felt awkward.
You know, I had a certain imagein my mind and so I did not
understand anything about it.
Once you understand just alittle bit about it I'm not
talking about writing a thesis,just a little bit about it do a
Google search.
You can understand the setting,the context.
(20:37):
After you do that, I would sayread my paper.
My paper on the CAR-T or thecancer didn't kill me, but these
funding cuts might, because inthere I talk specifically about
the risk that were taken whenthey cut funding.
When you cut funding forsomeone who has cancer, it's
like taking a life vest off ofsomeone who is drowning and
(21:02):
calling it budget reformAbsolutely goofy.
How in the heck they can dothat?
So people who come behind meare less likely to be treated
like I was if there's no fundingfor it.
So people die.
So legislators, basically, aremaking life and death decisions
on who lives and who dies, whenall along all we got to do is
(21:25):
just fund that.
Keep it going, keep thescientists going, keep them in
America where we need them, keepfighting for a cure.
And the one thing I found withthe research scientists I talked
to they get that cure andthey're working on it, but then
they start working on something,a spinoff from it, and thank
God they did, because they foundanother way to combat the
(21:45):
leukemia.
Larry Zilliox (21:47):
Well, september is Leukemia Awareness Month and
that's one of the reasons why wewanted to do this and get it
right out there at the beginningof the month and say I would
bet for most of our listenersthey know someone who has cancer
, someone in their family orsomeone they work with or go to
(22:08):
church with.
And I will have a link toJeffrey's paper in the show
notes and I encourage everybodyto read that because I think all
too often we'd say, okay, youknow, and so-and-so has cancer.
We'd say, okay, you know,so-and-so has cancer.
Oh, that's terrible, but wereally don't know much about
(22:50):
that journey and which is soimportant for people to
understand so that they can puta face and a story to the need
to fund cancer research.
It's not going to go away, likeyou say, and when you have a
clinical trial clinical trialsare based on safety the whole
idea with a medicine and toprove it that it works and that
(23:15):
it's safe and the way that itthey determine that it's safe is
look at the data.
And if you have a data and thenall of a sudden there's a break
and it just stops, then it it'salmost useless in that sense if
you pick it up in a couple ofyears.
You almost have to start over,and so it's vital that the
(23:40):
research for leukemia and allthe different types of cancers
continue out there.
So, listeners, I encourageeverybody to talk to people that
you know, that have made thatjourney you know.
Ask them to tell you what it waslike what, what it was like to
get that diagnosis, what it waslike to go through the treatment
(24:04):
not only the medical aspect,but the insurance aspect, the
Medicare aspect, the VA aspect.
If they are a veteran and weknow that there are a lot of
veterans that have cancer andcancer-related illnesses from
their time in service you,especially the type of work that
(24:28):
you did in the Navy, exposedyou to something that in all
likelihood, impacted yourmedical condition.
But then there are veterans outthere who were exposed to Agent
Orange, to burn pits, to allsorts of JP4 and chemicals
(24:50):
related to their job, whetherit's solvents working on
refinishing aircraft or whetherit's the fuel that goes in the
aircraft.
Service members are around allsorts of chemicals and all sorts
of things that, if notmonitored properly and protected
against they, can really affecttheir health.
So ask somebody that you know,a friend or a relative, to tell
(25:15):
you their story and you would besurprised, you're not.
You're not asking them to dosomething that is going to cause
them to go into you know to, tobring up their cancer again and
all of a sudden they're goingto have it.
It doesn't work like that andmost people, I think, would be
(25:39):
happy to sit down and tell youabout their story and to say you
know I'm glad you're interestedin, because being an advocate
for cancer research is a verygood thing.
Jeffrey Sapp (25:53):
You got to finesse it.
You're absolutely correct.
Everything you say is spot on.
But what I discovered peoplelike me, a lot of folks who have
cancer or find it, don't wantto talk about it because they
think they did something wrong.
Like when they told me I had it, I was embarrassed, I didn't
want to tell anyone.
My God, I did something wrongwith it.
(26:15):
And I found out.
There's a lot of people outthere that are kind of hesitant.
Also, what I found because I'ma big advocate of communicating.
I think if we communicate witheach other, we learn something.
We learn something.
We raise the bar of excellence,if you will.
When I talk with someone and Isay, well, I'm fighting cancer,
(26:35):
oh, you do.
And then, oh, my dog, my cat,my wife, my friend, my wife, my
buddy, he has cancer, and we'llgo on and on and on.
I kid you, not every singletime, probably about 50 times
when I talk with people, it'srelated to cancer.
Then you get into it and theyget comfortable talking with it,
and then they get morecomfortable approaching someone
(26:56):
who has it, because everyone'sconcerned.
What do I say?
What don't I say?
How can I be of assistance?
And all, having someone justtell their story, you know, I
think is a very good way if ithelped them navigate from where
they are to where they've beenand appreciate the whole process
(27:17):
.
But talking, you're right,talking with people, getting
them talking, people who don'thave cancer, being mindful of it
.
That's why I say learnsomething about it.
If you want to get specific,learn something about CAR T-cell
therapy.
Larry Zilliox (27:39):
And then when you talk with someone, you have a
better baseline to discuss with.
I think when you want to talkto somebody about their cancer
journey, I think really the keyis to explain to them your
interest is in learning moreabout it so that you can be an
advocate.
It's not just that you want tofill some time by hearing a
story and say, well, you knowthere, but for the grace of God,
go.
I, you know, it's not that.
(28:01):
It's not about that.
It's about educating me aboutwhat you went through.
Because when, when you want tohave that conversation with a
congressperson or arepresentative or somebody, you
want to be able to talk to themnot only about medication, about
the nature of the illness,about the prevalence of the
(28:22):
illness, but also aboutinsurance, about VA care and
coverage, so all sorts ofdifferent aspects.
When you only talk to themabout one thing, that gives them
a chance to ignore a lot.
And so, yeah, I'm a bigadvocate of just listening to
people and say you know, tell meyour story, what happened, and
(28:46):
you know where are you at nowand what can we do to make
things better for you.
That's what I'm saying.
How can I help?
Jeffrey Sapp (28:53):
Yeah, for sure, how can I?
Larry Zilliox (28:54):
help.
Sure Well, listen, jeffrey.
I can't thank you enough forsitting down with me and telling
your story, and this is aperfect episode to start off
Leukemia Awareness Month, so Ireally appreciate it.
Jeffrey Sapp (29:10):
Absolutely.
One last note I just discoveredI now have prostate cancer.
Absolutely One last note I justdiscovered I now have prostate
cancer, went into MRI CT scanand it's like Lord, give me a
break.
So we got the CAR T, we got theleukemia pretty much where
(29:30):
we're tracking it, and now wegot to deal with this too.
It's going to turn out okay.
Yeah, never give up, neversurrender.
Larry Zilliox (29:37):
Yeah, that's my battle cry, for sure.
Well, we wish you all the best.
Okay, good luck.
Thank you, larry.
Well, listeners, we'll haveanother episode for you next
Monday morning at 0500.
You can find us on all themajor podcast platforms.
We're on YouTube and.
Good morning.
I'm your host, Larry Zilliox,Director of Culinary Services
here at the Warrior Retreat atBull Run this week.
Our guest is Jeffrey Sapp.
He's a retired Navy captain andhe authored a paper and a TED
Talk that caught my attentionand it's called Cancer Didn't
(00:22):
Kill Me, but DisastrousGovernment Funding Cuts to
Cancer Research Might and Iasked Jeffrey to join us.
He has primary plasma cellleukemia.
September is Leukemia AwarenessMonth, so I wanted him to come
on and talk about his journeyand some of the research that
(00:45):
affected his life and the cutsthat may come to that.
I think.
Jeffrey, welcome to the podcast.
Thank you, larry, pleasure tobe here.
So if you would, for ourlisteners, explain to them what
a Navy captain is, because theymight be used to Air Force, army
(01:06):
Marine Corps captain is alittle bit different.
Jeffrey Sapp (01:09):
A little bit different.
Well, in the Navy we work for aliving.
That's the first difference.
Now Air Force and Army aregreat guys.
It is equivalent to alieutenant colonel Correction, a
colonel in the Air Force, armyand other services.
Okay.
Larry Zilliox (01:25):
So you would be in the Navy, you would be a
commander, would be a lieutenantcolonel and then a captain
would be full bird.
Jeffrey Sapp (01:35):
Yes, sir, Okay good.
Larry Zilliox (01:38):
Talk a little bit about the start of your career
when you joined.
I know you're a graduate of theNaval Academy.
You played football for theNaval Academy, which is really
cool.
When was that?
When did you join?
Jeffrey Sapp (01:49):
1973.
Wow, my dad was focused ongetting one of his sons into a
Naval Academy, into an academy.
My oldest brother went toVietnam.
He's off the table.
My second oldest brother wentto the FBI Academy he's off the
table.
Come to Jeffrey.
He's the last one there.
(02:09):
Now this is high school.
I had over 62 athleticscholarships or letters of
intent you know to go to schools.
I didn't need any of this stuff.
But he really pressed and saidI really want you to do that.
He's an old Army guy and backin the day if you're black you
couldn't be an officer and ifyou did during the war they
(02:30):
would propone them up and thenput them back down to warrant
after that.
So he wanted really to see oneof his sons come out as an
officer and he put the pressureon.
I like to say we took a voteabout if we were going to go or
not.
I won the vote, he vetoed thevote and I went to the Nathan
Academy.
(02:51):
Okay, While I was there I feltoutclassed.
They have some very intelligentpeople there, fantastic faculty
.
I had to struggle and therewere some times they wanted to
invite me to go home, but Istuck in there, got my grades up
, went great, made it tograduation and, by the way, I
(03:11):
didn't graduate at the bottom,which obeys me based on my
performance.
I got out.
I became what they call asurface warfare officer, going
to sea.
You have submarines, you havepilots, you have service warfare
officers.
So I went to sea.
Long story short 11 and a halfyears at sea is what I spent,
(03:34):
which was fantastic.
The best part about that,though, was, as I got more
mature, more senior, I actuallygot command of a ship, and I got
command of another ship, and Igot command of another ship.
Wow, Another ship, Six ships.
The best one was the destroyer,USS Ingersoll DD-990.
Larry Zilliox (03:54):
Wow.
Jeffrey Sapp (03:54):
That's the one that I would die for.
To go back to take command ofWow and being in command of a
warship is a beautiful thingKangaroo Shore, basically
strategy policy things like that.
I did have an opportunity toserve as a senior aide-de-camp
to the chairman of the JointChiefs of Staff, which is really
interesting, and deputydirector of the Navy-wide
(04:15):
personnel system, which was kindof cool with it.
So I've been at some prettygood high levels with my career.
Towards the end, when I decidedto get out to retire after 30
years, I ended up going to do amotivational speaking, which is
that's my main thingmotivational speaking to
(04:36):
encourage people, inspire themto achieve higher levels of
success.
I also did business consultingand leadership consulting and
being a leadership advisor.
Larry Zilliox (04:45):
I was that for Department of Homeland Security,
for National GeospatialIntelligence Agency, Gosh, I
can't think of the other onesthat I was, but it all was
helping federal agenciesincrease the performance of
their workforce, Right, and soit gave me a little bit of
(05:05):
experience there, Tell a littlebit about that period of time
where you started to get sickand my recollection is you're
overseas on assignment and thencame back to the States for
medical treatment and testingand then there's a point in time
where doctors say to you youhave a very serious illness and
(05:26):
it's a very rare illness and ithas a very low mortality rate.
When was that?
What was that like?
Jeffrey Sapp (05:46):
job with the defense contractor to work in
Saudi Arabia, work and live inSaudi Arabia overseeing projects
that supported the Royal SaudiNaval Forces.
So I was in their headquartersand speak with the admiral every
day and other folks like that.
The exciting part of it was itwas like a clean sheet to apply
my knowledge and my skills to,and it was going great.
I made great associations andgreat friends with the Saudis.
(06:09):
Matter of fact, I wouldn't mindgoing back there and living
because they treated me verywell and if you reciprocate it,
they treated you even better.
So that's how I was doing.
And then, all of a sudden, Istarted feeling really tired,
not tired like I woke up in themorning.
I didn't get a good night'ssleep.
I felt fatigued, I was losingweight, I couldn't urinate, I
(06:31):
felt dizzy and confused andeveryone said go see a doctor.
No, not, you know, I'm suckingup buttercup, you know.
Finally, I went to go see adoctor.
They went in Saudi.
They ended up hospitalizing mefor five days.
They said I had something calledmonoclonal gonopathy, of
(06:52):
undetermined source orsignificance, which was it's
like a precursor to cancer.
Not everyone who has it called,mgus, for short, everyone with
MGUS doesn't develop cancer butsome do.
I was one of the some that didso.
When they saw that they figuredthat two reasons Getting lab
(07:14):
work over in Saudi sometimestakes a day a month, a week.
They suggested I come back tothe States where I can get
better treatment, where they doit more often for cancer, in
case I had it.
They thought it was coming onso they medevaced me.
They discharged me on a Fridayafternoon I think it was Friday
(07:35):
afternoon.
They flew me Friday night tothe United States.
I arrived the next day, went toan ambulance, went right to
MedStar Georgetown UniversityHospital where they had a room
waiting for me and put me rightin, and that's when I started to
think that something more wasgoing on.
While I was in the room, theywere doing blood tests to
(07:58):
confirm things.
I developed pneumonia, I hadextreme pain in my body and the
doctors decided that it was lifethreatening, and so they put me
in intensive care, and that'swhere I stayed for the next 45
days Wow, until they let me goand to do more stuff.
When I was in the hospital, thedoctor came out and told my
(08:21):
wife before all of this started.
I got to tell you that he maynot go home, basically, or die
there with it.
It turned out I had so much ofthe cancer in my body.
Primary plasma cell leukemia isa blood-borne cancer.
When it's in you, you can'tradiate it, you can't cut it out
(08:42):
, it is all over the place.
And what had happened?
With me dragging my feet,seeing a doctor and taking my
time?
It started to build up.
Cancer had a very good footholdin my body.
And so what the doctors endedup doing to save my life?
I went through five consecutivedays of chemotherapy.
Try one, not fun, try five.
(09:05):
I also went through a dialysis24-hour dialysis by my midwife
to change out the toxins in myblood because my kidneys had
shut down.
There's something calledM-protein that gets into your
kidneys, kind of shuts them down.
So they zapped me with chemo.
They zapped me, they gave methe dialysis and then they
(09:28):
started to treat me.
I still got chemo every otherday or some frequency there, but
they had to go in and kill whatwas there and chemo, as you
know, wipes everything out.
It's not all a lot of fun, butthat got me on track and went to
the next phase of my treatment.
Larry Zilliox (09:48):
All right, which part of your treatment would you
say was the most successful orbrought you the most relief?
Jeffrey Sapp (09:55):
Brought me the most relief, as easily as called
CAR-T cell therapy.
Larry Zilliox (10:01):
Okay.
Jeffrey Sapp (10:01):
Now this is kind of neat and this is also why I'm
an advocate for researchfunding and why we got to keep
it up.
20, 30 years ago you neverwould have imagined CAR T.
No one did.
And back then you go back about10, 20 years when people got
primary plasma cell leukemia.
The longevity was seven monthsto 12 months, depending on what
(10:27):
story you look at.
And then if you did well andyou got over it, it never, ever
really went away.
It's in your system because thecancer's there.
So what CAR-T does is this theytake your body, they zap it with
chemo, they kill the cellsagain.
This is leading up to thetreatment where I was
hospitalized, I think, for 30days.
(10:48):
While I was zapped, they tookout my T cells, immune cells,
sent them off to a laboratoryand they re-engineered them to
go specifically after cancer.
It's like a special ops team isto the military specifically.
So it doesn't go after my hair,it doesn't go after my liver,
(11:10):
my heart, it goes right there.
And you know what?
It was an interesting way thatthey gave it to me and I had
responded, but in the long andshort of it, it killed the
cancer.
It didn't kill all the cancer.
I'm what they call near completeremission.
I still have cancer.
I will always have cancer.
(11:30):
I'll probably die of cancer,that's not a problem.
But the CAR-T better than thechemotherapy, was able to get me
on steady state.
I have not since 2023, have nothad chemotherapy and up to that
point I've been through one,two, three, four different
treatments, multiple variationsof chemo drugs and anti-cancer
(11:56):
drugs.
It put me in remissiontemporarily, but then it always
come back.
That's when the doctor said wehave a clinical trial.
You should go for and for CAR Ttherapy, explained what it was
and they're very, very carefulabout it?
Larry Zilliox (12:11):
Yeah, so they take these T cells out of your
blood.
Did you feel different?
Jeffrey Sapp (12:19):
No.
Larry Zilliox (12:20):
Okay.
Not at all, and when they putthem back in the new recharged
ones, did you feel any different?
Jeffrey Sapp (12:25):
No sir.
Larry Zilliox (12:26):
No, you don't feel any different.
Jeffrey Sapp (12:27):
One thing about that I got to tell you.
I mean, this is some high-levelstuff.
Taking a sale, reengineering itand giving it back.
I mean you talk death, you talkillness, you talk all sorts of
stuff it could be associatedwith it.
To make sure that it took andalso to make sure that I didn't
suffer from neurotoxicity.
(12:47):
That was one of their mainthings to see.
If they took, if I started toact goofy and my brain power was
starting to die, they had to dosomething else.
So the way they checked that,they gave me a statement to read
and it says I got my supersales at VCU.
You had to read that and simpleenough to do and you also had
(13:12):
to write.
I got my super sales at VCU andthen a nurse would come in and
say what's that on the wall?
A clock?
What's that A desk?
What's that A pencil?
Okay, you're confined with it.
I thought it was kind of silly.
But you know what?
There's a time and I have it inmy book, I'm coming out with an
example of it where my writingwas perfect and then on day five
(13:36):
after the transplant it lookedlike a kidney carmine or Rydland
.
I couldn't read it myself withit, and then I couldn't say what
the T-cells did for me andanything like that, so I was
hinting on the neuroplexicity.
They got on top of it, theyfixed it, discharged me for 30
days.
I had to live next to thehospital for 30 days, going
(13:58):
every single day to be checkedto make sure that the TESOLs
were doing what they're doing,and so when you were writing and
it was going south on you?
Larry Zilliox (14:08):
did you realize it?
Jeffrey Sapp (14:10):
No, yeah, I did not.
I did not at all.
I had trouble doing the letters, but in my mind's eye I was
doing great.
But if you look at it and againI put it in my book you look at
when I first started it looksgreat.
Look at that one day and thatwas a tipping point for me that
one day where I was totallyjacked up.
(14:31):
They got on top of it and gotme back on track.
Larry Zilliox (14:35):
And I did great.
So that was something that theydid every day to just check
cognitively that you weremaintaining a straight line.
Jeffrey Sapp (14:43):
Every single day.
Larry Zilliox (14:43):
And so this program was experimental.
This is not a therapy that isavailable today to anybody who
wants it, needs it, or is itstill in the experimental stage?
Jeffrey Sapp (14:56):
It's still experimental.
The clinical trials is wherethe experiment comes in.
It's experimental through thesense that it's accepted by FDA,
but they're still kind ofchecking it out, and so I'm part
of that.
The one thing with me because Ihad dialysis, I had my kidney
wiped out.
(15:16):
They ended up making my ownunique FDA clinical trial with
CAR T therapy to see how Ireacted to it, with the kidney
not being there, as opposed toother people who didn't have
that kind of situation.
Yes, sir, and it turned out thatit did well.
I went back up follow up.
Larry Zilliox (15:36):
It turns out that they used what they learned
from me as a protocol forhelping other people for helping
other people, and do they, thefolks behind the clinical trial,
have any sort of understandingor maybe an estimate of when
they believe that this might bea therapy that's available to
(15:57):
anybody who needs it, out ofclinical trial but into
mainstream medical treatment?
Never had that conversation.
Jeffrey Sapp (16:04):
Wow, I was just happy to be alive with it.
The only thing that they toldme the doctor said because they
said well, how long is thisgoing to last?
He says T-cells are the giftthat keeps on giving.
Once they're in your system,they should continue running the
course.
If they don't, then we'll go toanother level.
Like I said, since 2023, nochemotherapy I've been feeling
(16:26):
well.
I have days when I'm off alittle bit.
I have part where my cognitivedissonance gets jacked up
because of the cancer.
Yeah, the medication and thecancer, sure, but other than
that, I'm starting to becomemyself again.
I've not been that since I wassick.
I have this energy.
(16:47):
You wake up tired, you go tosleep tired, I can sleep for
five hours or I can sleep foreight or 10.
I still feel fatigued andthat's just something I got to
deal with.
Larry Zilliox (16:56):
Yeah, let's talk a little bit about how critical
funding is for this type ofresearch.
I mean, is it done at NIH or isit done at a university and
funded by NIH?
Jeffrey Sapp (17:09):
It's done at a university.
It's funded, I think, by theprivate sector and NIH.
I would assume I wasn'tinterested at that level, but
the university and I forget thedoctor's name that came up with
this they came up with the CAR Ttherapy.
They ran it through.
(17:29):
Fda got approved to do theclinical trial.
Now they do CAR T therapy forat least three types of leukemia
, plasma cell leukemia being oneof them.
So they kind of ran the wholeshow and I think the money was
part government, part privatesector.
Bristol-myers Squibb was thefolks that kind of stepped up to
(17:53):
the plate for me On thepharmaceutical side.
Larry Zilliox (17:55):
Yes, sir, yeah.
Jeffrey Sapp (17:56):
Yes sir.
Larry Zilliox (17:56):
Well, clearly this type of long-term research
can't take place unless it'ssubsidized.
I mean, it can be subsidizedfor a while by corporations and
maybe universities, but withoutgovernment funding it's
eventually going to dry up, andpart of the problem there is
(18:17):
that when research goes away, sodo research scientists.
Jeffrey Sapp (18:22):
Absolutely.
Larry Zilliox (18:23):
And then they end up going to work in maybe
Canada or Switzerland or othercountries that are opening their
doors and making moving therevery easy, because they value
knowledge and expertise, andit's a drain on this country to
see research end and researchscientists leave.
(18:47):
What's the best way for ourlisteners to alert their elected
officials that this type ofcancer research and all cancer
research really needs tocontinue to be funded?
Jeffrey Sapp (19:01):
Before I ask that, let me tell you one thing about
the funding, why it's socritical.
Based on who you talk to, mytreatment was $450,000.
And you don't find that layingaround.
I was at the hospital for afterthe treatment for 10 days and a
half, for 30 days, coming backin Quite a bit expensive to it
(19:25):
and without that money Iwouldn't have been able to go
through what I went through.
Larry Zilliox (19:31):
Well, insurance is not going to pick that up.
Jeffrey Sapp (19:33):
Oh, hell, heck.
No, no, I didn't with it, butthat's why this funding is
critical.
It's also the research.
You got to keep the researchgoing because you don't just
wake up one day and say, aha, Ihave a solution.
They kind of build on it, buildon it, build on it and I'm
living proof of that and whenthey got something like the
(19:54):
carotid cell therapy, they applyit and it starts to work.
Now they've got to improve that, because the cancer is never
going to go away.
That's a fact.
For someone who is interested inwanting to be an advocate, to
learn more or to be engaged isnumber one learn a little bit
about cancer.
I was one of those guys.
(20:16):
I would never do cancer.
I wouldn't talk with anyone whohad cancer, you know, it's just
.
I felt awkward.
You know, I had a certain imagein my mind and so I did not
understand anything about it.
Once you understand just alittle bit about it I'm not
talking about writing a thesis,just a little bit about it do a
Google search.
You can understand the setting,the context.
(20:37):
After you do that, I would sayread my paper.
My paper on the CAR-T or thecancer didn't kill me, but these
funding cuts might, because inthere I talk specifically about
the risk that were taken whenthey cut funding.
When you cut funding forsomeone who has cancer, it's
like taking a life vest off ofsomeone who is drowning and
(21:02):
calling it budget reformAbsolutely goofy.
How in the heck they can dothat?
So people who come behind meare less likely to be treated
like I was if there's no fundingfor it.
So people die.
So legislators, basically, aremaking life and death decisions
on who lives and who dies, whenall along all we got to do is
(21:25):
just fund that.
Keep it going, keep thescientists going, keep them in
America where we need them, keepfighting for a cure.
And the one thing I found withthe research scientists I talked
to they get that cure andthey're working on it, but then
they start working on something,a spinoff from it, and thank
God they did, because they foundanother way to combat the
(21:45):
leukemia.
Larry Zilliox (21:47):
Well, september is Leukemia Awareness Month and
that's one of the reasons why wewanted to do this and get it
right out there at the beginningof the month and say I would
bet for most of our listenersthey know someone who has cancer
, someone in their family orsomeone they work with or go to
(22:08):
church with.
And I will have a link toJeffrey's paper in the show
notes and I encourage everybodyto read that because I think all
too often we'd say, okay, youknow, and so-and-so has cancer.
We'd say, okay, you know,so-and-so has cancer.
Oh, that's terrible, but wereally don't know much about
(22:50):
that journey and which is soimportant for people to
understand so that they can puta face and a story to the need
to fund cancer research.
It's not going to go away, likeyou say, and when you have a
clinical trial clinical trialsare based on safety the whole
idea with a medicine and toprove it that it works and that
(23:15):
it's safe and the way that itthey determine that it's safe is
look at the data.
And if you have a data and thenall of a sudden there's a break
and it just stops, then it it'salmost useless in that sense if
you pick it up in a couple ofyears.
You almost have to start over,and so it's vital that the
(23:40):
research for leukemia and allthe different types of cancers
continue out there.
So, listeners, I encourageeverybody to talk to people that
you know, that have made thatjourney you know.
Ask them to tell you what it waslike what, what it was like to
get that diagnosis, what it waslike to go through the treatment
(24:04):
not only the medical aspect,but the insurance aspect, the
Medicare aspect, the VA aspect.
If they are a veteran and weknow that there are a lot of
veterans that have cancer andcancer-related illnesses from
their time in service you,especially the type of work that
(24:28):
you did in the Navy, exposedyou to something that in all
likelihood, impacted yourmedical condition.
But then there are veterans outthere who were exposed to Agent
Orange, to burn pits, to allsorts of JP4 and chemicals
(24:50):
related to their job, whetherit's solvents working on
refinishing aircraft or whetherit's the fuel that goes in the
aircraft.
Service members are around allsorts of chemicals and all sorts
of things that, if notmonitored properly and protected
against they, can really affecttheir health.
So ask somebody that you know,a friend or a relative, to tell
(25:15):
you their story and you would besurprised, you're not.
You're not asking them to dosomething that is going to cause
them to go into you know to, tobring up their cancer again and
all of a sudden they're goingto have it.
It doesn't work like that andmost people, I think, would be
(25:39):
happy to sit down and tell youabout their story and to say you
know I'm glad you're interestedin, because being an advocate
for cancer research is a verygood thing.
Jeffrey Sapp (25:53):
You got to finesse it.
You're absolutely correct.
Everything you say is spot on.
But what I discovered peoplelike me, a lot of folks who have
cancer or find it, don't wantto talk about it because they
think they did something wrong.
Like when they told me I had it, I was embarrassed, I didn't
want to tell anyone.
My God, I did something wrongwith it.
(26:15):
And I found out.
There's a lot of people outthere that are kind of hesitant.
Also, what I found because I'ma big advocate of communicating.
I think if we communicate witheach other, we learn something.
We learn something.
We raise the bar of excellence,if you will.
When I talk with someone and Isay, well, I'm fighting cancer,
(26:35):
oh, you do.
And then, oh, my dog, my cat,my wife, my friend, my wife, my
buddy, he has cancer, and we'llgo on and on and on.
I kid you, not every singletime, probably about 50 times
when I talk with people, it'srelated to cancer.
Then you get into it and theyget comfortable talking with it,
and then they get morecomfortable approaching someone
(26:56):
who has it, because everyone'sconcerned.
What do I say?
What don't I say?
How can I be of assistance?
And all, having someone justtell their story, you know, I
think is a very good way if ithelped them navigate from where
they are to where they've beenand appreciate the whole process
(27:17):
.
But talking, you're right,talking with people, getting
them talking, people who don'thave cancer, being mindful of it
.
That's why I say learnsomething about it.
If you want to get specific,learn something about CAR T-cell
therapy.
Larry Zilliox (27:39):
And then when you talk with someone, you have a
better baseline to discuss with.
I think when you want to talkto somebody about their cancer
journey, I think really the keyis to explain to them your
interest is in learning moreabout it so that you can be an
advocate.
It's not just that you want tofill some time by hearing a
story and say, well, you knowthere, but for the grace of God,
go.
I, you know, it's not that.
(28:01):
It's not about that.
It's about educating me aboutwhat you went through.
Because when, when you want tohave that conversation with a
congressperson or arepresentative or somebody, you
want to be able to talk to themnot only about medication, about
the nature of the illness,about the prevalence of the
(28:22):
illness, but also aboutinsurance, about VA care and
coverage, so all sorts ofdifferent aspects.
When you only talk to themabout one thing, that gives them
a chance to ignore a lot.
And so, yeah, I'm a bigadvocate of just listening to
people and say you know, tell meyour story, what happened, and
(28:46):
you know where are you at nowand what can we do to make
things better for you.
That's what I'm saying.
How can I help?
Jeffrey Sapp (28:53):
Yeah, for sure, how can I?
Larry Zilliox (28:54):
help.
Sure Well, listen, jeffrey.
I can't thank you enough forsitting down with me and telling
your story, and this is aperfect episode to start off
Leukemia Awareness Month, so Ireally appreciate it.
Jeffrey Sapp (29:10):
Absolutely.
One last note I just discoveredI now have prostate cancer.
Absolutely One last note I justdiscovered I now have prostate
cancer, went into MRI CT scanand it's like Lord, give me a
break.
So we got the CAR T, we got theleukemia pretty much where
(29:30):
we're tracking it, and now wegot to deal with this too.
It's going to turn out okay.
Yeah, never give up, neversurrender.
Larry Zilliox (29:37):
Yeah, that's my battle cry, for sure.
Well, we wish you all the best.
Okay, good luck.
Thank you, larry.
Well, listeners, we'll haveanother episode for you next
Monday morning at 0500.
You can find us on all themajor podcast platforms.
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