March 2, 2025 • 35 mins
Dr. Galati is back in the studio tonight with two guests. He starts with a quick chat about colon cancer now that we are into March. The disease of the night is amyloidosis. Dr. Galati has two colleagues, Dr. Barry Trachtenberg and Dr. Mahwash Kassi join him to talk all about it.
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Episode Transcript
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Speaker 1 (00:00):
Coming to you live from Houston, Texas, home to the
world's largest medical center.
Speaker 2 (00:05):
In the bunch base of the day, we're.
Speaker 3 (00:09):
Orl Urt and Island r.
Speaker 1 (00:16):
This is your Health First, the most beneficial health program
on radio with doctor Joe Belati. During the next hour,
you'll learn about health, wellness, and the provention of disease.
Now here's your host, doctor Joe Bellotti.
Speaker 4 (00:39):
Well, it is another fine, wonderful Sunday night in America.
Speaker 2 (00:44):
Talking health and wellness.
Speaker 4 (00:48):
That's what we do every Sunday between seven and eight pm.
And you know, as I was driving in tonight, it's March.
I can't believe it's March already.
Speaker 2 (00:57):
And uh, I think it's like.
Speaker 4 (00:59):
Around March thirteenth or fourteenth. I'll be entering my twenty
third year of doing this, So every year that ticks by,
I can't believe that I am still here.
Speaker 2 (01:11):
But it is great to be here every night.
Speaker 4 (01:14):
And as I say, as I've been saying, our mission
is to raise your health IQ and make you better
consumers of healthcare. It is that simple. Our website is
doctor Joegalotti dot com and all of our social media
is there. You can sign up for my newsletter send
me a message. Podcasts are there from years of past programming.
(01:37):
I would say check it out doctor Joeglotti dot com.
A little later tonight, we are going to be talking
with two experts in a rare disease. Now, after they
start talking about it, it may not be so rare.
Speaker 2 (01:54):
After all. The disease is.
Speaker 4 (01:57):
Called amyloid or ameloid osis. And I am in the
studio tonight with two cardiologists from Houston Methodist Hospital, two
colleagues of mine, doctor Barry Trachtenberg and doctor Mahwah Cassi.
They are the team that is leading the charge in
(02:18):
developing protocols and educating physicians and patients on amyloid. And
so don't tune off and say, well, yeah, I want
to hear about ozempic, I want to hear about cancer. Yes,
it's a rare condition. But I would say, you're going
to learn something tonight.
Speaker 2 (02:38):
And as I've been.
Speaker 4 (02:39):
Saying all the time you listen to this program, you're
going to have actionable information. There's going to be things
that you can put into effect for your own health
and wellness immediately. So do stay tuned for that. So
before we get to them. The month of March is
Colon Cancer Awareness Month. And as you know, throughout the year,
(03:00):
there are various health observances from the very obscure to
the very common. So when you look at Colon Cancer
Awareness Month, the statistics are about one hundred and ten
thousand new cases of colon cancer.
Speaker 2 (03:19):
It's a fair amount, and there are.
Speaker 4 (03:21):
About fifty plus thousand deaths a year, and I believe
it's the number three cancer killer.
Speaker 2 (03:31):
So this is really no small change here. The one
change in.
Speaker 4 (03:36):
The last several years is that the screening for colon
cancer used to start at fifty and that was sort
of the joke. You have you fifty at the birthday
party and you get cards about getting your colonoscopy. Well,
for reasons that are not fully understood, screening for colon
cancer has moved up to forty five years old. We're
finding that a lot of young people are developing poll ups,
(04:00):
polyps that are at risk, polyps that are high risk
of turning into cancer, and so the American Cancer Society
and other associations and committees decided to start screening for
colon cancer at forty five years old. Now, if you
watch TV, you are probably going to see a commercial
(04:20):
for a test called colon Guard. Now, colon Guard is
a stool test, and they promote themselves as you don't
have to take this nasty tasting prep, you don't have
to go for anesthesia, you could do it on your
own time, you don't have to miss work. That is
all true, and the technology there is that by sending
(04:43):
in a stool sample, they are checking for DNA of
colon cancer. So it is more than just checking for blood,
which is what we used to do, which is pretty
archaic if you think about that, but it's actually checking
for genetic changes that would raise the likelihood of having
(05:04):
colon cancer. Now, the only problem with that that is
for people that are asymptomatic, those that do not have
a family history of colon cancer, those that have not
had a prior colonoscopy that they had polyps, or those
that do not have any other diseases that put you
(05:26):
at risk for cancer or colon cancer. So if you
have inflammatory bowel disease, you have all sort of colitis
or Crohn's disease, a colon gart is not for you.
If you had a colonoscopy five years ago, eight years
ago and you had two or three polyps taken out
colon gart is not necessarily the right test for you.
Speaker 2 (05:48):
But if you're.
Speaker 4 (05:49):
Forty five, asymptomatic, clean family history, clean personal history, colon
guard is appropriate. So the meaning, you know, really the
message for tonight, And since it is the the month
of March, we'll be talking about it from time to
time through the month. I would say, first of all,
(06:10):
if you're over forty five and you have not had
either colon guard or colonoscoby, make it this month, make
the appointment, start talking about it. And the other thing is,
so many times people have rectal bleeding, horrible thing. You're
not going to bring it up at the kitchen table
with your family say hey, you know what, honey, I
got blood in my stool. Not the most comfortable thing.
(06:33):
But don't sign it off or blow it off as
it's hemorrhoids. I have done many a colonoscopy on people
that I've had quote unquote hemorrhoids and it turns out
to be either a huge pole up or actually colon cancer.
So diarrhea, cramps, constipation, blend your stool, get it looked at.
Speaker 2 (06:54):
That is the key thing. All right, you're tuned in
New York. Hell. First, this is doctor Joe Glottido. Don't
forget doctor Joeglotti dot.
Speaker 4 (07:01):
Com coming up to outstanding colleagues of mine from Houston
Methodist Hospital. We are going to be talking about amyloit.
See if you know what it's about, or see see
if you can spell it. That'll be my test. Stay tuned.
We're We're right back every Sunday evening between seven and APM.
Speaker 2 (07:21):
I'm here. I hope all of you are.
Speaker 4 (07:26):
Making a point to be part of the program. We're
broadcasting from our world headquarters in Houston seven forty KRH,
but coast to coast on the iHeartRadio app.
Speaker 2 (07:39):
So no excuse to not.
Speaker 4 (07:44):
Follow us wherever you are, or certainly tell your friends
and family to tune in every night, seven Central time.
Don't forget doctor Joeglotti dot COM's our website. All right,
As I was saying earlier tonight, the flavor of the
night is amyloidosis, a disease many of you may not
(08:06):
have ever heard of, but now you're going to be
experts and in the studio tonight with me two wonderful
colleagues of mine from Houston Methodist, doctor Barry Trechtenberg and
doctor Mawash Cassi, both cardiologists, both part of the Debaky
Heart and Vascular Center, the J. C. Walter Junior Transplant Center,
(08:31):
And for both of you, welcome, glad you could come
in tonight.
Speaker 5 (08:36):
Thanks for having us.
Speaker 3 (08:37):
Thank you so much. This is a great opportunity.
Speaker 2 (08:39):
I think you got to turn your microphone on. See
is it on? All right? We'll see, just talk up anyway.
Speaker 4 (08:49):
How you know, cardiology is a huge field, heart failure,
cardiovascular disease, valve disorders, arrhythmias. How how did you both
gravitate to amyloid? How does that fit in?
Speaker 1 (09:06):
So?
Speaker 5 (09:06):
I mean, emiloid is a disease that can be devastating,
especially when I started fellowship, I had two patients with amloidosis.
This is ten twelve years ago, fifteen years ago. And
you know at that time, patients came in with this
terrible disease and we had literally nothing to offer them.
(09:28):
They would, oh, you have amloid We were proud of
ourselves for making the diagnosis, and then we sent to hospice.
And so now it's I mean, we've the field has
moved so far that there's so much we've learned about
how to diagnose these patients better. How many more patients
there are with this disease that are coming out of
the woodworks now that we are becoming more aware and
(09:50):
now we have treatment options, so patients can live, you know,
full lives with this disease. And so that's really you
know what drew me to it was, you know.
Speaker 2 (10:00):
Yeah, doctor Cassie, what do you think? How did you
get involved?
Speaker 3 (10:03):
So I must say that I have to blame Berry
for it because he was my attending and I was
really impressed with what he was doing at the time.
And when I started training, that was the first year
that we actually started having some treatment for amloid. Yeah,
So it was exciting from a clinical trials perspective. It
was exciting from a patient perspective. The ability to transform
(10:24):
a disease where you are not going to live at
all and or die within a year. Now you could
live a healthy life.
Speaker 2 (10:30):
Yeah.
Speaker 4 (10:31):
Now, when you see patients with amyloid, how long do
you think they're walking around with symptoms before either you
and your team figure it out, or a referring doctor
or the family doctor figured it out. What is a
(10:52):
timeline here?
Speaker 5 (10:53):
I mean, this is this is the problem with the
disease and This is why, you know, we're so grateful
for the opportunity to talk to patients about this, because, right,
it is a treatable disease if you catch it on time, right.
But time and time again, we hear stories of patients
that have been to doctors for three four years, you know,
some even more, some have been to five six doctors,
(11:13):
and they still don't get to that diagnosis because the
physicians are not aware of it. They think it's this
you know, very rare disease that they're never going to
see in their practice. And the reality is it's it's
in everyone's practice. It's being missed, and so you know, really,
you know, we need to make people more aware of
it so that we can not have people waiting years
(11:34):
to get the diagnosis.
Speaker 4 (11:35):
Now, when you look at fellow cardiologists or internal medicine
doctors or family medicine doctors, because that's really the front line,
what what do you think is the most common misstep
in making the diagnosis where they were thinking rightfully, so
when this is you know, we're not throwing anybody under
(11:55):
the bus here tonight. This is a rare disease that
is sometimes tough to diagnose. What was the thinking or
what was the patient thinking up to the point that
they came to see you.
Speaker 3 (12:06):
So basically, I think it's the fact that we disregard
the patient's symptoms. So they're feeling short of brad, they're
feeling fatigued and tired. But because the echo says the
heart function is normal, because in this disease, the heart
just becomes really thick and it becomes really stiff. So
most people think that, you know, there's nothing wrong with them,
(12:27):
and for years that's what they're told, that it's all
in your head. Basically that's really the problem.
Speaker 4 (12:32):
Now you know we're talking that this is rare, so
put it in perspective, how rare is this or how
common is it?
Speaker 3 (12:42):
I actually don't think of it as a rare disease
anymore because literally we're seeing patients coming out of the
word works. Now we can say that I am biased
or buries biased because be are disease experts, but I
will tell you that we've done just surveys and found
out patients who are actually young. It's not just older
patient's disease, and there's so many more that you're diagnosing.
Speaker 2 (13:04):
Now, So young how young.
Speaker 3 (13:06):
Can be as low as forty five. I think that's
the young as I've seen you Bury, what about you?
Speaker 5 (13:10):
Yeah, I mean it depends on so let's I mean,
I guess we should take a step back. What you know,
what is amoid dosis and what are the different types.
So when we say emiid doses, we're talking about a
broad you know, many types of disorders that we've grouped
together called amoi dosis, and it just means that there's
this protein that misfolds in an abnormal way and it
(13:31):
can your body can't get rid of it, so it
goes into depending on the type of amoid, it goes
into your heart, goes into your nerves, it goes into
your joints. So when the two of us think about amoid,
we're thinking of the types that cause cardiac emoid. And
really there's two broad types for that. One is called
al which is light chain and that's a you know,
(13:51):
disease of the bone marrow often is associated with cancers
like multiple maloma. And then the and for that one,
it's about three thousand to four thousand new cases you're
in the United States. That's a fair amount, but that's
you know, compared to the the other type we're going
to talk about. It's, you know, which is you know,
a rare disease in the United States, by the way,
is two hundred thousand or less cases, and so we
(14:12):
think it's more than that, even though it is listed
as a rare disease.
Speaker 2 (14:16):
The other type of.
Speaker 5 (14:17):
Amoid, other than a l or systemic light chain is
called at TR and that's for trands thy reid. And
it's a protein that we all make in the liver,
and there's.
Speaker 2 (14:27):
Got to the liver, absolutely absolutely the liver.
Speaker 5 (14:30):
The liver you know, dishes out this damage, but this
actually doesn't get damage itself, right, so that this there's
two types. There's a genetic type of this called hereditary attR,
and there's wild type attR that's that's non genetic, and
those are the kinds that really, you know, we're underdiagnosing tremendously.
(14:51):
The wild type, or the non genetic type, happens with
typically with aging, but you know, we can see that
even in patients in their you know, middle ages. The
genetic type there's over one hundred and twenty mutations. Just
to put it in perspective, The most common mutation here
in the United States is called that is the v
one forty two I mutation. Three to four percent of
(15:11):
African Americans are carriers of that mutation. So if you
think about about fifty million African Americans in this country, right,
three to four percent carrying that gene, which is about
eighteen million or so. And if you think about the penitrance,
which means how many of those people that have that
gene develop the disease. We don't really know. The best
(15:33):
estimates I've seen are about thirty percent. We're talking hundreds
of thousands of patients with that with this disorder.
Speaker 2 (15:40):
Yeah, that are just sort of out there that.
Speaker 5 (15:42):
Are out there being underdiagnosed or diagnosed as something else.
Speaker 2 (15:45):
Yeah, And just to.
Speaker 3 (15:46):
Add to a berries, like just going back to the
amyloid part, to make it simple, the way I explain
it to patients is basically, the misfolded proteins become GUNGK
and they basically deposit in the heart and in your nerves,
basically causing organ dysfunction. So the heart becomes you start
having heart feeder symptoms, or you develop neuropathy. So there's
(16:07):
very common symptoms that can be misdiagnosed for other diseases.
Speaker 4 (16:11):
But I would say it's for everybody listening tonight, it's
fair to say if you have a problem with amyloid,
you're going to have some symptoms, correct, okay, Which again
a big part of this program is there are so
many patients and within the cardiology space, I'm sure you
(16:32):
see this every day. Outside of amyloid. Of course, people
come in with shortness of breath, chest pain, they think
it's heartburn, they have swelling in their legs, they have
palpitations at night, and they attribute it to something else.
Speaker 3 (16:48):
So there's some red flags that I guess we can
touch upon. So not just having symptoms of shortness of
breath and chest pain, but these patients usually have carbilateral
carpalton and a lot of people have really, so if
you've had bilateral carpal tunnel release surgeon, it's a very
common symptom or a red flag. Other red flags are
neuropathy or numbness or dingling sensation in your hands and feet. Now,
(17:09):
there are some visions who have diabetes and they think
they sure have diabetes, But if you don't have diabetes,
you have neuropathy, you may want to think about those
type of symptoms. And another one is a popeye arm,
which is biceps standard rupture. So basically, you have a
rupture for no rhyme or reason. That's one of the
red flags.
Speaker 2 (17:27):
I want to hear about that more.
Speaker 4 (17:28):
All right, we're going to take a quick break for news, traffic,
and weather. Doctor Joe Galatti talking with doctor Cassie and
trakten Berg about amyloid You're all going to be experts
at the end of this program.
Speaker 2 (17:42):
I'm doctor Joe Glotti. Stay tuned. We'll write back.
Speaker 4 (17:44):
I want to thank my man Dave in the control
room for pulling the music tonight.
Speaker 2 (17:50):
Not only do we give you.
Speaker 4 (17:54):
Good health and wellness facts, we have great music. That's
what I like to think. All Right, Doctor Joe Golotti
back with your health First every Sunday between seven and
eight pm. Don't forget doctor Joeglotti dot com is our website.
Signing for our newsletter all Things Helped and Wellness. You
(18:15):
could find there and on the program if you just
joining us.
Speaker 2 (18:21):
We are talking.
Speaker 4 (18:22):
About a condition called amyloidosis. It is a disease that
is pretty widespread in the different organs in the body.
And I'm here with two experts from Houston Methodist Hospital,
Doctor Barry Trachtenberg and Mawash Kassi, both cardiologists, both experts
(18:42):
in this really leading the charge with their team at
Houston Methodist on the really patient care research, community education.
So when we finished with the last break, we wanted
to get a little bit more into the symptoms. And
what I would say here for everybody listening tonight, whether
(19:03):
you're sitting around the fire, whether you're driving home from work,
or you're making sandwiches for the kids tomorrow, what are
the symptoms that we need our listeners tonight to start
thinking about.
Speaker 3 (19:22):
So we can think about the symptoms in two ways.
One is cardiovascular and which is the heart basically, and
then one is the non heart. So it's talking about
the heart first. So there's shortness of breath, like you
start feeling more short of breath with walking, or you're
climbing up stairs and you can't take a breath, that's
shortness of breath. You start feeling like your heart's racing,
or conscious awareness of your heart that's palpitations. Basically, if
(19:46):
you start having chesspain with exertion, that's one of the
science symptoms that we worry about. But then there is
non cardiovascular symptoms. So The non cardiovascular symptoms are things
like numbness or tingling, or inability to do find more work,
or things falling off your hand, or not being able
to sleep at night because you have so much pain
(20:07):
in your legs from the neuropathy of the pins and needles.
Bilateral carpal tunnel is a red flag. Back pain, Spinal
stenosis is a red flag.
Speaker 2 (20:17):
Okay, believe it or not.
Speaker 3 (20:20):
Drop in blood pressure or even erectile dysfunction is a
red flag.
Speaker 2 (20:24):
Right.
Speaker 3 (20:24):
So there are very non specific symptoms, but they pile
together and if combined with the cardiovascular symptoms, these are
red flags that we should take very seriously.
Speaker 4 (20:35):
So doctor Trachtenberg, when somebody like this comes in and
they may be referred for the shortness of breath, maybe
an abnormal EKG something their primary care says, you know what,
sixty years old, go see a cardiologist and he sees
your smiling face and you start the work up.
Speaker 2 (20:56):
What's the clue to say?
Speaker 3 (20:59):
This?
Speaker 4 (21:00):
Is it like the last five hundred cases I saw this,
This could be amyloid.
Speaker 5 (21:04):
Yeah, that's an important question. So I think you know
a lot of the things that doctor Cossi just mentioned,
But also if you have. You know, you know, one
condition we call heart you know, heartflul with preserved ejection
ejection fraction, meaning your heart is you have heart filure,
but your heart's pumping fine, it's pumping blood. It's just
a little bit stiff and you're not able to fill
with fluid. And that's over six million Americans have that
(21:27):
and at about fourteen percent of those will have amoids.
So so you know, it's shortest of breadth, it's a
vague symptom. A lot of people have it. That's why
these things get missed. So if you have a patient
that has a thick heart, the heart muscle is the
one muscle in the body you don't want to be thick.
And the most common reason that stick is due to
high blood pressure. But if they are having a valve issue.
(21:48):
But if you don't have either of those and your
heart's thick, that's you know, especially for you know, we
think about the genetic types. The middle aged African Americans
that you know might have the most the common gene
that we have here.
Speaker 2 (22:02):
You know.
Speaker 5 (22:02):
By the way, also there's a lot of you know,
Irish population also have a genetic variant. There's Japanese Swedish
and Portuguese or some other of the populations that have
a more likelihood of having a genetic mutation. So people
that have you know, shortness of breath with a thick heart,
they're also have you know, dizziness when they stand up,
(22:23):
or they have a family history of any of these things,
of you know, people dying suddenly in their family, all
having heart failure with a thick heart. These are just
some of the red flags that you should be aware to.
But one of the keys is that they have heart
failure and they're not getting better with the medications their
doctors giving them same thing for their neuropathy. They have neuropathy,
(22:43):
but they've been told it's diabetic neuropathy or here all
the time it's cid P, and they're on these you know,
you know, expensive medications for these other types of neuropathy,
and they're not getting better. So that's a big flag
for me that they might have amoid.
Speaker 4 (22:58):
Yeah, so, doctor Cassie, you see this page and you
put them on diuretics, they fix their diet, control the
blood pressure. How quickly do you start seriously thinking that
this might be amyloid.
Speaker 3 (23:16):
Well, typically when we see patients and we have certain
things that we look at, for example, the EKG. The
voltage if that's low, or if the heart's thick on echo,
which means if the heart muscle usually is around point
nine to one point one millimeters, but if it's thicker
than that, like especially if it's greater than fifteen millimeters,
then we worry about amyloid from the get go, and
(23:38):
if the symptoms are really out of proportion. So that
is one part. And as experts in this field, I mean,
we always ask about the red flags. Unfortunately, that's part
of my routine to just ask everybody. So for us
to diagnose it, it is a lot, you know, sort
of we ask directed questions. But I've seen in the
(23:58):
you know, in some people who don't necessarily see amyloid,
very often it's missed because either they didn't think about
it even though it had been happening for a while.
I've seen echoes from a decade for a patient where
the heart muscle get got thicker every single year, but
the cardiologists and the patient never talked about.
Speaker 4 (24:18):
It, or they just thought it was the natural history
of whatever that high blood pressure. So we're going to
be taking a break in a second, now, but testing screening.
What are the blood tests that you would sort of
go for first, And we'll pick this up after the break,
but just to start off.
Speaker 3 (24:35):
So, just as Barry mentioned that there is a plasma
cell dyscrasia or al amyloid, So we first usually test
for something called light chains to discriminate whether it is
coming from the plasma or is it coming from the liver.
And then we do some biomarkers like troponin and B
and P, which is basically biomarkers for the heart. We
(24:55):
try to make sure there's no other overlaps syndron right,
and then go ahead and do the phecific imaging that's
for amyloid, which is BYP. Skins.
Speaker 4 (25:03):
Okay, all right, we'll get into that final segment of
your Health First coming up. I'm here with doctor Cassie
and doctor Trechtenberg from Houston Methodist Hospital amyloid experts.
Speaker 2 (25:15):
We'll be back in a minute. Don't go anywhere. I
think we have a directory of every.
Speaker 4 (25:21):
Song ever made that mentions doctor part there's no not
a single song ever written about the liver. But we'll
have to work on that. Doctor Joe Glotti, this is
your health First, every Sunday between seven and a pm
continuing the conversation on amyloid with doctor Trechtenberg and doctor
(25:48):
Cassie from Houston Methodist Hospital and doctor Trechtenberg. As we
were going to the break, you want to jump in
on a symptom that we may not have talked.
Speaker 5 (25:56):
About, recurrent atrial fibrillation. It's a common symptom with aging,
but patients that have repeated ablations and are not having
success that should be another red flag. Ertic stenosis is
a lot of patients with arigstenosis might have this as well.
A couple things that just wanted to highlight.
Speaker 2 (26:12):
I mean that a fib story.
Speaker 4 (26:15):
It's endemic, you know, so you figure that the huge
amount of people that have atrial fibrillation just one a
little more box to tick.
Speaker 2 (26:25):
To say could this be amyloid? You know.
Speaker 4 (26:27):
The other question that was raised here in the studio
is again briefly, what questions should the patient be asking?
Because we want to IMpower all of you to not
just sit there and take whatever the doctor tells you,
but be proactive.
Speaker 2 (26:43):
So what what are two or three questions that they
should ask their doctor?
Speaker 3 (26:49):
I think they can you know, be should ask that
if their symptoms are out of proportion and the doctor
tells them that your echo looks fine, just go home.
I do think that at that time you have to
be your own advocate and push and be like, can
you think of something else? Or should I be referred
to a specialist. We have multiple heart field caryologists that
are in the Houston area. Should one of you? Should
(27:12):
one of them see that patient?
Speaker 2 (27:14):
Right?
Speaker 4 (27:14):
And I for those that have been listening, I am
a huge fan an advocate for getting second opinions. It
does not mean that your doctor is no good. It
does not mean that you should stop going, but you
need to get another set of eyes.
Speaker 2 (27:27):
And especially here in Houston.
Speaker 4 (27:29):
We are blessed to be in the Texas Medical Center
where experts galore like like both of you, all right,
so we went over you know, the symptoms and be
your own advocate. And the testing mostly blood.
Speaker 3 (27:43):
Any urine, sometimes urine for just looking at some proteins.
Speaker 4 (27:48):
Okay, And the genetic testing that that sort of is
a big part.
Speaker 3 (27:52):
Here, correct, And I just do want to mention that
genetic testing is usually may not be covered by insurance.
But now given that we're trying to promote awareness about
this disease. There is free genetic testing available.
Speaker 2 (28:04):
Good.
Speaker 4 (28:05):
Okay, Now you mentioned something about a scan. What is
that all about.
Speaker 3 (28:10):
So there's a specific scan that basically you can think
of it. The molecule binds to the protein in the heart,
So we do that scan to diagnose the T tr amyloid.
But if it's a la amoloid, then you usually go
ahead and do biopsies of either the heart fat pad
or the bone marrow.
Speaker 4 (28:27):
Right, okay, and that should cinch the diagnosis.
Speaker 3 (28:31):
Heart biopsies. Just want to mention, non painful, very short
procedure does get you diagnosis ninety nine percent of the time.
Speaker 2 (28:40):
Okay, getting into treatment. So I just want to.
Speaker 5 (28:45):
The biopsy. Most of the time, we don't need to
do the biopsy. I mean we used to always have
to do the bioes. Right now we have the technology
where the vast majority of the time we can do
this with just imaging and blood and urine.
Speaker 2 (28:56):
Right, and you make the diagnosis. Okay.
Speaker 4 (28:59):
So everybody's say, I think, okay, what's the punchline here?
Speaker 2 (29:02):
Treatment?
Speaker 4 (29:03):
So is it strictly medical therapy? Is there a surgical option?
Of course, transplant may be an option. Briefly, what's the
options here.
Speaker 5 (29:13):
So if it's the al which we haven't talked a
lot about, which is sort of like a bone marrow
disease that can be associated with some cancers, there's chemotherapy
type medications or aminotherapy. These have been huge advances where
patients are now surviving a decade or more with the
new technology. For the attR type, there was zero, no
(29:34):
options prior to twenty seventeen except a heart and or
a liver transplant.
Speaker 2 (29:39):
Now we have.
Speaker 5 (29:41):
Four approved medications and a couple more in the way,
and then we can also talk there's two research trials
that we have active ongoing.
Speaker 3 (29:50):
So the one that I'm really excited about is something
called depleter So we did not have the technology to
actually deplete or take away the protein deposits from the heart,
and right now we have a clinical while that's going
on in Houston Methodist where we're recruiting. This is the
fastest recruiting AMMELOD clinical trial. And the other exciting one,
which doctor Trackenberg's leading, is the one with our gene
therapy trial, which is the first Also you can just
(30:13):
knock out the DTR gene and stop production of familyoid altogether.
Speaker 2 (30:16):
So that'll halt it where it's at.
Speaker 5 (30:18):
Absolutely one infusion.
Speaker 2 (30:20):
It's wow. Wow.
Speaker 4 (30:23):
Now at Uston Methodist there is the Bradley z NAPI
Amyloid Treatment and Research Program. Tell me about that.
Speaker 5 (30:32):
This is a program that we're very grateful to the
Navy family. This is a gentleman from Oklahoma City, a businessman, philanthropists,
who came to Houston, you know, in twenty seventeen, twenty
eighteen for treatment for alm oy. He was very sick,
a similar story to what you hear. Multiple doctors, delays, delays, delays.
By the time he got to us, extremely sick. We
(30:54):
put him on the transplant list. Unfortunately, he could not
survive until the time of transplant and the family, you know,
it's incredible to to make a donation when you're let
one gets this amazing gift of life, but when someone
doesn't make it, and they really wanted to create more
advocacy and create a program to help generate more awareness,
(31:18):
more research. So they've helped us do that and so
that program that we're able to do along with our
colleague doctor Arvind Bemraj, we have this program where we
have a multi disciplained working group of all the specialists
that this disease requires, and we have a conference that
(31:39):
we've led for three years. This is the third annual
conference that we've had with experts from all over the world.
We have one day for physicians talking about you know,
the best incoming trials and all the state of the
art evidence, and we have one day for patients to
learn more about the disease. And it's incredible. We have
our patients come, you know, to learn more and they
(31:59):
get to other patients that have survived, you know, multiple
years and.
Speaker 2 (32:03):
Get to share their stories. So we have that March.
Speaker 5 (32:05):
Twenty first as vocations at Houston Methodists and if you
google Houston Methodists, Nathy nai f e h Emilid.
Speaker 4 (32:15):
I'll post it all on our Facebook page and get
that information out. So in the last minute or so,
this has been very very quick, very informative.
Speaker 2 (32:24):
You both are.
Speaker 4 (32:25):
Fantastic for doctor Cassie. People listening tonight. What is if
you had one or two take home messages And don't worry, Barry,
I'm going to get to you one or two take
home messages on thinking about amyloid.
Speaker 3 (32:42):
So the main thing is stiff hart heart failure symptoms
but with concurrent red flags that we mentioned earlier, neuropathy,
bilateral carpal tunnel back issues, very common things that go
hand in hand, and it is basically the crux of amyloid.
Speaker 4 (33:04):
Right, And I would say again, regardless of the disease
or condition, don't be afraid to speak up. Absolutely, Yeah,
that's tracting bag. Doctor Trektenberg. What what's your thought for
everybody listening tonight.
Speaker 5 (33:21):
Yeah, I mean I agree with all of that, but
and I think you know, the only thing I would
add to that is, you know, if you're if you
have any of those symptoms that we were describing, don't
be afraid to ask your doctor could I have amoid dosis?
And if the doctor looks at you like you're crazy,
say you know, can you refer me to a specialist
in emoidosis or go ahead? And if they're not willing to,
(33:42):
then you know, there's there's websites you can go to.
You can google it. A couple good websites that Amoid
doss Support Group dot org or the AMILOI Doss Support
dot org or a ARCI dot org can help you
navigate that as well.
Speaker 2 (33:57):
Right, all right, well, this I do believe will.
Speaker 4 (34:01):
Be an eye opener for everybody listening tonight and people
that listen to it in the future. But the key
crux here is listen to your body. If you have
symptoms that seem a little adult whack that aren't getting better,
you really have to speak up and really ask to
be referred to, be evaluated, evaluated by somebody that's an
(34:24):
expert in emiloidosis.
Speaker 2 (34:26):
All right, well, look, you both survived the hour here.
Speaker 4 (34:29):
I want to thank you both Dr Barry Trachtenberg and
Dr Mawash Kassi from Houston Methodist Hospital. It really was
awesome having you tonight. Thanks so much for having us
all right, and for everybody listening.
Speaker 2 (34:40):
Thank you again.
Speaker 4 (34:41):
Don't forget go to doctor Joe Glotti dot com and
we'll see you next Sunday night at seven o'clock.
Speaker 2 (34:48):
Take care.
Speaker 1 (34:50):
You've been listening to your Health First with doctor Joe Galotti.
For more information on this program or the content of
this program, go to your Health First dot com.
Coming to you live from Houston, Texas, home to the
world's largest medical center.
Speaker 2 (00:05):
In the bunch base of the day, we're.
Speaker 3 (00:09):
Orl Urt and Island r.
Speaker 1 (00:16):
This is your Health First, the most beneficial health program
on radio with doctor Joe Belati. During the next hour,
you'll learn about health, wellness, and the provention of disease.
Now here's your host, doctor Joe Bellotti.
Speaker 4 (00:39):
Well, it is another fine, wonderful Sunday night in America.
Speaker 2 (00:44):
Talking health and wellness.
Speaker 4 (00:48):
That's what we do every Sunday between seven and eight pm.
And you know, as I was driving in tonight, it's March.
I can't believe it's March already.
Speaker 2 (00:57):
And uh, I think it's like.
Speaker 4 (00:59):
Around March thirteenth or fourteenth. I'll be entering my twenty
third year of doing this, So every year that ticks by,
I can't believe that I am still here.
Speaker 2 (01:11):
But it is great to be here every night.
Speaker 4 (01:14):
And as I say, as I've been saying, our mission
is to raise your health IQ and make you better
consumers of healthcare. It is that simple. Our website is
doctor Joegalotti dot com and all of our social media
is there. You can sign up for my newsletter send
me a message. Podcasts are there from years of past programming.
(01:37):
I would say check it out doctor Joeglotti dot com.
A little later tonight, we are going to be talking
with two experts in a rare disease. Now, after they
start talking about it, it may not be so rare.
Speaker 2 (01:54):
After all. The disease is.
Speaker 4 (01:57):
Called amyloid or ameloid osis. And I am in the
studio tonight with two cardiologists from Houston Methodist Hospital, two
colleagues of mine, doctor Barry Trachtenberg and doctor Mahwah Cassi.
They are the team that is leading the charge in
(02:18):
developing protocols and educating physicians and patients on amyloid. And
so don't tune off and say, well, yeah, I want
to hear about ozempic, I want to hear about cancer. Yes,
it's a rare condition. But I would say, you're going
to learn something tonight.
Speaker 2 (02:38):
And as I've been.
Speaker 4 (02:39):
Saying all the time you listen to this program, you're
going to have actionable information. There's going to be things
that you can put into effect for your own health
and wellness immediately. So do stay tuned for that. So
before we get to them. The month of March is
Colon Cancer Awareness Month. And as you know, throughout the year,
(03:00):
there are various health observances from the very obscure to
the very common. So when you look at Colon Cancer
Awareness Month, the statistics are about one hundred and ten
thousand new cases of colon cancer.
Speaker 2 (03:19):
It's a fair amount, and there are.
Speaker 4 (03:21):
About fifty plus thousand deaths a year, and I believe
it's the number three cancer killer.
Speaker 2 (03:31):
So this is really no small change here. The one
change in.
Speaker 4 (03:36):
The last several years is that the screening for colon
cancer used to start at fifty and that was sort
of the joke. You have you fifty at the birthday
party and you get cards about getting your colonoscopy. Well,
for reasons that are not fully understood, screening for colon
cancer has moved up to forty five years old. We're
finding that a lot of young people are developing poll ups,
(04:00):
polyps that are at risk, polyps that are high risk
of turning into cancer, and so the American Cancer Society
and other associations and committees decided to start screening for
colon cancer at forty five years old. Now, if you
watch TV, you are probably going to see a commercial
(04:20):
for a test called colon Guard. Now, colon Guard is
a stool test, and they promote themselves as you don't
have to take this nasty tasting prep, you don't have
to go for anesthesia, you could do it on your
own time, you don't have to miss work. That is
all true, and the technology there is that by sending
(04:43):
in a stool sample, they are checking for DNA of
colon cancer. So it is more than just checking for blood,
which is what we used to do, which is pretty
archaic if you think about that, but it's actually checking
for genetic changes that would raise the likelihood of having
(05:04):
colon cancer. Now, the only problem with that that is
for people that are asymptomatic, those that do not have
a family history of colon cancer, those that have not
had a prior colonoscopy that they had polyps, or those
that do not have any other diseases that put you
(05:26):
at risk for cancer or colon cancer. So if you
have inflammatory bowel disease, you have all sort of colitis
or Crohn's disease, a colon gart is not for you.
If you had a colonoscopy five years ago, eight years
ago and you had two or three polyps taken out
colon gart is not necessarily the right test for you.
Speaker 2 (05:48):
But if you're.
Speaker 4 (05:49):
Forty five, asymptomatic, clean family history, clean personal history, colon
guard is appropriate. So the meaning, you know, really the
message for tonight, And since it is the the month
of March, we'll be talking about it from time to
time through the month. I would say, first of all,
(06:10):
if you're over forty five and you have not had
either colon guard or colonoscoby, make it this month, make
the appointment, start talking about it. And the other thing is,
so many times people have rectal bleeding, horrible thing. You're
not going to bring it up at the kitchen table
with your family say hey, you know what, honey, I
got blood in my stool. Not the most comfortable thing.
(06:33):
But don't sign it off or blow it off as
it's hemorrhoids. I have done many a colonoscopy on people
that I've had quote unquote hemorrhoids and it turns out
to be either a huge pole up or actually colon cancer.
So diarrhea, cramps, constipation, blend your stool, get it looked at.
Speaker 2 (06:54):
That is the key thing. All right, you're tuned in
New York. Hell. First, this is doctor Joe Glottido. Don't
forget doctor Joeglotti dot.
Speaker 4 (07:01):
Com coming up to outstanding colleagues of mine from Houston
Methodist Hospital. We are going to be talking about amyloit.
See if you know what it's about, or see see
if you can spell it. That'll be my test. Stay tuned.
We're We're right back every Sunday evening between seven and APM.
Speaker 2 (07:21):
I'm here. I hope all of you are.
Speaker 4 (07:26):
Making a point to be part of the program. We're
broadcasting from our world headquarters in Houston seven forty KRH,
but coast to coast on the iHeartRadio app.
Speaker 2 (07:39):
So no excuse to not.
Speaker 4 (07:44):
Follow us wherever you are, or certainly tell your friends
and family to tune in every night, seven Central time.
Don't forget doctor Joeglotti dot COM's our website. All right,
As I was saying earlier tonight, the flavor of the
night is amyloidosis, a disease many of you may not
(08:06):
have ever heard of, but now you're going to be
experts and in the studio tonight with me two wonderful
colleagues of mine from Houston Methodist, doctor Barry Trechtenberg and
doctor Mawash Cassi, both cardiologists, both part of the Debaky
Heart and Vascular Center, the J. C. Walter Junior Transplant Center,
(08:31):
And for both of you, welcome, glad you could come
in tonight.
Speaker 5 (08:36):
Thanks for having us.
Speaker 3 (08:37):
Thank you so much. This is a great opportunity.
Speaker 2 (08:39):
I think you got to turn your microphone on. See
is it on? All right? We'll see, just talk up anyway.
Speaker 4 (08:49):
How you know, cardiology is a huge field, heart failure,
cardiovascular disease, valve disorders, arrhythmias. How how did you both
gravitate to amyloid? How does that fit in?
Speaker 1 (09:06):
So?
Speaker 5 (09:06):
I mean, emiloid is a disease that can be devastating,
especially when I started fellowship, I had two patients with amloidosis.
This is ten twelve years ago, fifteen years ago. And
you know at that time, patients came in with this
terrible disease and we had literally nothing to offer them.
(09:28):
They would, oh, you have amloid We were proud of
ourselves for making the diagnosis, and then we sent to hospice.
And so now it's I mean, we've the field has
moved so far that there's so much we've learned about
how to diagnose these patients better. How many more patients
there are with this disease that are coming out of
the woodworks now that we are becoming more aware and
(09:50):
now we have treatment options, so patients can live, you know,
full lives with this disease. And so that's really you
know what drew me to it was, you know.
Speaker 2 (10:00):
Yeah, doctor Cassie, what do you think? How did you
get involved?
Speaker 3 (10:03):
So I must say that I have to blame Berry
for it because he was my attending and I was
really impressed with what he was doing at the time.
And when I started training, that was the first year
that we actually started having some treatment for amloid. Yeah,
So it was exciting from a clinical trials perspective. It
was exciting from a patient perspective. The ability to transform
(10:24):
a disease where you are not going to live at
all and or die within a year. Now you could
live a healthy life.
Speaker 2 (10:30):
Yeah.
Speaker 4 (10:31):
Now, when you see patients with amyloid, how long do
you think they're walking around with symptoms before either you
and your team figure it out, or a referring doctor
or the family doctor figured it out. What is a
(10:52):
timeline here?
Speaker 5 (10:53):
I mean, this is this is the problem with the
disease and This is why, you know, we're so grateful
for the opportunity to talk to patients about this, because, right,
it is a treatable disease if you catch it on time, right.
But time and time again, we hear stories of patients
that have been to doctors for three four years, you know,
some even more, some have been to five six doctors,
(11:13):
and they still don't get to that diagnosis because the
physicians are not aware of it. They think it's this
you know, very rare disease that they're never going to
see in their practice. And the reality is it's it's
in everyone's practice. It's being missed, and so you know, really,
you know, we need to make people more aware of
it so that we can not have people waiting years
(11:34):
to get the diagnosis.
Speaker 4 (11:35):
Now, when you look at fellow cardiologists or internal medicine
doctors or family medicine doctors, because that's really the front line,
what what do you think is the most common misstep
in making the diagnosis where they were thinking rightfully, so
when this is you know, we're not throwing anybody under
(11:55):
the bus here tonight. This is a rare disease that
is sometimes tough to diagnose. What was the thinking or
what was the patient thinking up to the point that
they came to see you.
Speaker 3 (12:06):
So basically, I think it's the fact that we disregard
the patient's symptoms. So they're feeling short of brad, they're
feeling fatigued and tired. But because the echo says the
heart function is normal, because in this disease, the heart
just becomes really thick and it becomes really stiff. So
most people think that, you know, there's nothing wrong with them,
(12:27):
and for years that's what they're told, that it's all
in your head. Basically that's really the problem.
Speaker 4 (12:32):
Now you know we're talking that this is rare, so
put it in perspective, how rare is this or how
common is it?
Speaker 3 (12:42):
I actually don't think of it as a rare disease
anymore because literally we're seeing patients coming out of the
word works. Now we can say that I am biased
or buries biased because be are disease experts, but I
will tell you that we've done just surveys and found
out patients who are actually young. It's not just older
patient's disease, and there's so many more that you're diagnosing.
Speaker 2 (13:04):
Now, So young how young.
Speaker 3 (13:06):
Can be as low as forty five. I think that's
the young as I've seen you Bury, what about you?
Speaker 5 (13:10):
Yeah, I mean it depends on so let's I mean,
I guess we should take a step back. What you know,
what is amoid dosis and what are the different types.
So when we say emiid doses, we're talking about a
broad you know, many types of disorders that we've grouped
together called amoi dosis, and it just means that there's
this protein that misfolds in an abnormal way and it
(13:31):
can your body can't get rid of it, so it
goes into depending on the type of amoid, it goes
into your heart, goes into your nerves, it goes into
your joints. So when the two of us think about amoid,
we're thinking of the types that cause cardiac emoid. And
really there's two broad types for that. One is called
al which is light chain and that's a you know,
(13:51):
disease of the bone marrow often is associated with cancers
like multiple maloma. And then the and for that one,
it's about three thousand to four thousand new cases you're
in the United States. That's a fair amount, but that's
you know, compared to the the other type we're going
to talk about. It's, you know, which is you know,
a rare disease in the United States, by the way,
is two hundred thousand or less cases, and so we
(14:12):
think it's more than that, even though it is listed
as a rare disease.
Speaker 2 (14:16):
The other type of.
Speaker 5 (14:17):
Amoid, other than a l or systemic light chain is
called at TR and that's for trands thy reid. And
it's a protein that we all make in the liver,
and there's.
Speaker 2 (14:27):
Got to the liver, absolutely absolutely the liver.
Speaker 5 (14:30):
The liver you know, dishes out this damage, but this
actually doesn't get damage itself, right, so that this there's
two types. There's a genetic type of this called hereditary attR,
and there's wild type attR that's that's non genetic, and
those are the kinds that really, you know, we're underdiagnosing tremendously.
(14:51):
The wild type, or the non genetic type, happens with
typically with aging, but you know, we can see that
even in patients in their you know, middle ages. The
genetic type there's over one hundred and twenty mutations. Just
to put it in perspective, The most common mutation here
in the United States is called that is the v
one forty two I mutation. Three to four percent of
(15:11):
African Americans are carriers of that mutation. So if you
think about about fifty million African Americans in this country, right,
three to four percent carrying that gene, which is about
eighteen million or so. And if you think about the penitrance,
which means how many of those people that have that
gene develop the disease. We don't really know. The best
(15:33):
estimates I've seen are about thirty percent. We're talking hundreds
of thousands of patients with that with this disorder.
Speaker 2 (15:40):
Yeah, that are just sort of out there that.
Speaker 5 (15:42):
Are out there being underdiagnosed or diagnosed as something else.
Speaker 2 (15:45):
Yeah, And just to.
Speaker 3 (15:46):
Add to a berries, like just going back to the
amyloid part, to make it simple, the way I explain
it to patients is basically, the misfolded proteins become GUNGK
and they basically deposit in the heart and in your nerves,
basically causing organ dysfunction. So the heart becomes you start
having heart feeder symptoms, or you develop neuropathy. So there's
(16:07):
very common symptoms that can be misdiagnosed for other diseases.
Speaker 4 (16:11):
But I would say it's for everybody listening tonight, it's
fair to say if you have a problem with amyloid,
you're going to have some symptoms, correct, okay, Which again
a big part of this program is there are so
many patients and within the cardiology space, I'm sure you
(16:32):
see this every day. Outside of amyloid. Of course, people
come in with shortness of breath, chest pain, they think
it's heartburn, they have swelling in their legs, they have
palpitations at night, and they attribute it to something else.
Speaker 3 (16:48):
So there's some red flags that I guess we can
touch upon. So not just having symptoms of shortness of
breath and chest pain, but these patients usually have carbilateral
carpalton and a lot of people have really, so if
you've had bilateral carpal tunnel release surgeon, it's a very
common symptom or a red flag. Other red flags are
neuropathy or numbness or dingling sensation in your hands and feet. Now,
(17:09):
there are some visions who have diabetes and they think
they sure have diabetes, But if you don't have diabetes,
you have neuropathy, you may want to think about those
type of symptoms. And another one is a popeye arm,
which is biceps standard rupture. So basically, you have a
rupture for no rhyme or reason. That's one of the
red flags.
Speaker 2 (17:27):
I want to hear about that more.
Speaker 4 (17:28):
All right, we're going to take a quick break for news, traffic,
and weather. Doctor Joe Galatti talking with doctor Cassie and
trakten Berg about amyloid You're all going to be experts
at the end of this program.
Speaker 2 (17:42):
I'm doctor Joe Glotti. Stay tuned. We'll write back.
Speaker 4 (17:44):
I want to thank my man Dave in the control
room for pulling the music tonight.
Speaker 2 (17:50):
Not only do we give you.
Speaker 4 (17:54):
Good health and wellness facts, we have great music. That's
what I like to think. All Right, Doctor Joe Golotti
back with your health First every Sunday between seven and
eight pm. Don't forget doctor Joeglotti dot com is our website.
Signing for our newsletter all Things Helped and Wellness. You
(18:15):
could find there and on the program if you just
joining us.
Speaker 2 (18:21):
We are talking.
Speaker 4 (18:22):
About a condition called amyloidosis. It is a disease that
is pretty widespread in the different organs in the body.
And I'm here with two experts from Houston Methodist Hospital,
Doctor Barry Trachtenberg and Mawash Kassi, both cardiologists, both experts
(18:42):
in this really leading the charge with their team at
Houston Methodist on the really patient care research, community education.
So when we finished with the last break, we wanted
to get a little bit more into the symptoms. And
what I would say here for everybody listening tonight, whether
(19:03):
you're sitting around the fire, whether you're driving home from work,
or you're making sandwiches for the kids tomorrow, what are
the symptoms that we need our listeners tonight to start
thinking about.
Speaker 3 (19:22):
So we can think about the symptoms in two ways.
One is cardiovascular and which is the heart basically, and
then one is the non heart. So it's talking about
the heart first. So there's shortness of breath, like you
start feeling more short of breath with walking, or you're
climbing up stairs and you can't take a breath, that's
shortness of breath. You start feeling like your heart's racing,
or conscious awareness of your heart that's palpitations. Basically, if
(19:46):
you start having chesspain with exertion, that's one of the
science symptoms that we worry about. But then there is
non cardiovascular symptoms. So The non cardiovascular symptoms are things
like numbness or tingling, or inability to do find more work,
or things falling off your hand, or not being able
to sleep at night because you have so much pain
(20:07):
in your legs from the neuropathy of the pins and needles.
Bilateral carpal tunnel is a red flag. Back pain, Spinal
stenosis is a red flag.
Speaker 2 (20:17):
Okay, believe it or not.
Speaker 3 (20:20):
Drop in blood pressure or even erectile dysfunction is a
red flag.
Speaker 2 (20:24):
Right.
Speaker 3 (20:24):
So there are very non specific symptoms, but they pile
together and if combined with the cardiovascular symptoms, these are
red flags that we should take very seriously.
Speaker 4 (20:35):
So doctor Trachtenberg, when somebody like this comes in and
they may be referred for the shortness of breath, maybe
an abnormal EKG something their primary care says, you know what,
sixty years old, go see a cardiologist and he sees
your smiling face and you start the work up.
Speaker 2 (20:56):
What's the clue to say?
Speaker 3 (20:59):
This?
Speaker 4 (21:00):
Is it like the last five hundred cases I saw this,
This could be amyloid.
Speaker 5 (21:04):
Yeah, that's an important question. So I think you know
a lot of the things that doctor Cossi just mentioned,
But also if you have. You know, you know, one
condition we call heart you know, heartflul with preserved ejection
ejection fraction, meaning your heart is you have heart filure,
but your heart's pumping fine, it's pumping blood. It's just
a little bit stiff and you're not able to fill
with fluid. And that's over six million Americans have that
(21:27):
and at about fourteen percent of those will have amoids.
So so you know, it's shortest of breadth, it's a
vague symptom. A lot of people have it. That's why
these things get missed. So if you have a patient
that has a thick heart, the heart muscle is the
one muscle in the body you don't want to be thick.
And the most common reason that stick is due to
high blood pressure. But if they are having a valve issue.
(21:48):
But if you don't have either of those and your
heart's thick, that's you know, especially for you know, we
think about the genetic types. The middle aged African Americans
that you know might have the most the common gene
that we have here.
Speaker 2 (22:02):
You know.
Speaker 5 (22:02):
By the way, also there's a lot of you know,
Irish population also have a genetic variant. There's Japanese Swedish
and Portuguese or some other of the populations that have
a more likelihood of having a genetic mutation. So people
that have you know, shortness of breath with a thick heart,
they're also have you know, dizziness when they stand up,
(22:23):
or they have a family history of any of these things,
of you know, people dying suddenly in their family, all
having heart failure with a thick heart. These are just
some of the red flags that you should be aware to.
But one of the keys is that they have heart
failure and they're not getting better with the medications their
doctors giving them same thing for their neuropathy. They have neuropathy,
(22:43):
but they've been told it's diabetic neuropathy or here all
the time it's cid P, and they're on these you know,
you know, expensive medications for these other types of neuropathy,
and they're not getting better. So that's a big flag
for me that they might have amoid.
Speaker 4 (22:58):
Yeah, so, doctor Cassie, you see this page and you
put them on diuretics, they fix their diet, control the
blood pressure. How quickly do you start seriously thinking that
this might be amyloid.
Speaker 3 (23:16):
Well, typically when we see patients and we have certain
things that we look at, for example, the EKG. The
voltage if that's low, or if the heart's thick on echo,
which means if the heart muscle usually is around point
nine to one point one millimeters, but if it's thicker
than that, like especially if it's greater than fifteen millimeters,
then we worry about amyloid from the get go, and
(23:38):
if the symptoms are really out of proportion. So that
is one part. And as experts in this field, I mean,
we always ask about the red flags. Unfortunately, that's part
of my routine to just ask everybody. So for us
to diagnose it, it is a lot, you know, sort
of we ask directed questions. But I've seen in the
(23:58):
you know, in some people who don't necessarily see amyloid,
very often it's missed because either they didn't think about
it even though it had been happening for a while.
I've seen echoes from a decade for a patient where
the heart muscle get got thicker every single year, but
the cardiologists and the patient never talked about.
Speaker 4 (24:18):
It, or they just thought it was the natural history
of whatever that high blood pressure. So we're going to
be taking a break in a second, now, but testing screening.
What are the blood tests that you would sort of
go for first, And we'll pick this up after the break,
but just to start off.
Speaker 3 (24:35):
So, just as Barry mentioned that there is a plasma
cell dyscrasia or al amyloid, So we first usually test
for something called light chains to discriminate whether it is
coming from the plasma or is it coming from the liver.
And then we do some biomarkers like troponin and B
and P, which is basically biomarkers for the heart. We
(24:55):
try to make sure there's no other overlaps syndron right,
and then go ahead and do the phecific imaging that's
for amyloid, which is BYP. Skins.
Speaker 4 (25:03):
Okay, all right, we'll get into that final segment of
your Health First coming up. I'm here with doctor Cassie
and doctor Trechtenberg from Houston Methodist Hospital amyloid experts.
Speaker 2 (25:15):
We'll be back in a minute. Don't go anywhere. I
think we have a directory of every.
Speaker 4 (25:21):
Song ever made that mentions doctor part there's no not
a single song ever written about the liver. But we'll
have to work on that. Doctor Joe Glotti, this is
your health First, every Sunday between seven and a pm
continuing the conversation on amyloid with doctor Trechtenberg and doctor
(25:48):
Cassie from Houston Methodist Hospital and doctor Trechtenberg. As we
were going to the break, you want to jump in
on a symptom that we may not have talked.
Speaker 5 (25:56):
About, recurrent atrial fibrillation. It's a common symptom with aging,
but patients that have repeated ablations and are not having
success that should be another red flag. Ertic stenosis is
a lot of patients with arigstenosis might have this as well.
A couple things that just wanted to highlight.
Speaker 2 (26:12):
I mean that a fib story.
Speaker 4 (26:15):
It's endemic, you know, so you figure that the huge
amount of people that have atrial fibrillation just one a
little more box to tick.
Speaker 2 (26:25):
To say could this be amyloid? You know.
Speaker 4 (26:27):
The other question that was raised here in the studio
is again briefly, what questions should the patient be asking?
Because we want to IMpower all of you to not
just sit there and take whatever the doctor tells you,
but be proactive.
Speaker 2 (26:43):
So what what are two or three questions that they
should ask their doctor?
Speaker 3 (26:49):
I think they can you know, be should ask that
if their symptoms are out of proportion and the doctor
tells them that your echo looks fine, just go home.
I do think that at that time you have to
be your own advocate and push and be like, can
you think of something else? Or should I be referred
to a specialist. We have multiple heart field caryologists that
are in the Houston area. Should one of you? Should
(27:12):
one of them see that patient?
Speaker 2 (27:14):
Right?
Speaker 4 (27:14):
And I for those that have been listening, I am
a huge fan an advocate for getting second opinions. It
does not mean that your doctor is no good. It
does not mean that you should stop going, but you
need to get another set of eyes.
Speaker 2 (27:27):
And especially here in Houston.
Speaker 4 (27:29):
We are blessed to be in the Texas Medical Center
where experts galore like like both of you, all right,
so we went over you know, the symptoms and be
your own advocate. And the testing mostly blood.
Speaker 3 (27:43):
Any urine, sometimes urine for just looking at some proteins.
Speaker 4 (27:48):
Okay, And the genetic testing that that sort of is
a big part.
Speaker 3 (27:52):
Here, correct, And I just do want to mention that
genetic testing is usually may not be covered by insurance.
But now given that we're trying to promote awareness about
this disease. There is free genetic testing available.
Speaker 2 (28:04):
Good.
Speaker 4 (28:05):
Okay, Now you mentioned something about a scan. What is
that all about.
Speaker 3 (28:10):
So there's a specific scan that basically you can think
of it. The molecule binds to the protein in the heart,
So we do that scan to diagnose the T tr amyloid.
But if it's a la amoloid, then you usually go
ahead and do biopsies of either the heart fat pad
or the bone marrow.
Speaker 4 (28:27):
Right, okay, and that should cinch the diagnosis.
Speaker 3 (28:31):
Heart biopsies. Just want to mention, non painful, very short
procedure does get you diagnosis ninety nine percent of the time.
Speaker 2 (28:40):
Okay, getting into treatment. So I just want to.
Speaker 5 (28:45):
The biopsy. Most of the time, we don't need to
do the biopsy. I mean we used to always have
to do the bioes. Right now we have the technology
where the vast majority of the time we can do
this with just imaging and blood and urine.
Speaker 2 (28:56):
Right, and you make the diagnosis. Okay.
Speaker 4 (28:59):
So everybody's say, I think, okay, what's the punchline here?
Speaker 2 (29:02):
Treatment?
Speaker 4 (29:03):
So is it strictly medical therapy? Is there a surgical option?
Of course, transplant may be an option. Briefly, what's the
options here.
Speaker 5 (29:13):
So if it's the al which we haven't talked a
lot about, which is sort of like a bone marrow
disease that can be associated with some cancers, there's chemotherapy
type medications or aminotherapy. These have been huge advances where
patients are now surviving a decade or more with the
new technology. For the attR type, there was zero, no
(29:34):
options prior to twenty seventeen except a heart and or
a liver transplant.
Speaker 2 (29:39):
Now we have.
Speaker 5 (29:41):
Four approved medications and a couple more in the way,
and then we can also talk there's two research trials
that we have active ongoing.
Speaker 3 (29:50):
So the one that I'm really excited about is something
called depleter So we did not have the technology to
actually deplete or take away the protein deposits from the heart,
and right now we have a clinical while that's going
on in Houston Methodist where we're recruiting. This is the
fastest recruiting AMMELOD clinical trial. And the other exciting one,
which doctor Trackenberg's leading, is the one with our gene
therapy trial, which is the first Also you can just
(30:13):
knock out the DTR gene and stop production of familyoid altogether.
Speaker 2 (30:16):
So that'll halt it where it's at.
Speaker 5 (30:18):
Absolutely one infusion.
Speaker 2 (30:20):
It's wow. Wow.
Speaker 4 (30:23):
Now at Uston Methodist there is the Bradley z NAPI
Amyloid Treatment and Research Program. Tell me about that.
Speaker 5 (30:32):
This is a program that we're very grateful to the
Navy family. This is a gentleman from Oklahoma City, a businessman, philanthropists,
who came to Houston, you know, in twenty seventeen, twenty
eighteen for treatment for alm oy. He was very sick,
a similar story to what you hear. Multiple doctors, delays, delays, delays.
By the time he got to us, extremely sick. We
(30:54):
put him on the transplant list. Unfortunately, he could not
survive until the time of transplant and the family, you know,
it's incredible to to make a donation when you're let
one gets this amazing gift of life, but when someone
doesn't make it, and they really wanted to create more
advocacy and create a program to help generate more awareness,
(31:18):
more research. So they've helped us do that and so
that program that we're able to do along with our
colleague doctor Arvind Bemraj, we have this program where we
have a multi disciplained working group of all the specialists
that this disease requires, and we have a conference that
(31:39):
we've led for three years. This is the third annual
conference that we've had with experts from all over the world.
We have one day for physicians talking about you know,
the best incoming trials and all the state of the
art evidence, and we have one day for patients to
learn more about the disease. And it's incredible. We have
our patients come, you know, to learn more and they
(31:59):
get to other patients that have survived, you know, multiple
years and.
Speaker 2 (32:03):
Get to share their stories. So we have that March.
Speaker 5 (32:05):
Twenty first as vocations at Houston Methodists and if you
google Houston Methodists, Nathy nai f e h Emilid.
Speaker 4 (32:15):
I'll post it all on our Facebook page and get
that information out. So in the last minute or so,
this has been very very quick, very informative.
Speaker 2 (32:24):
You both are.
Speaker 4 (32:25):
Fantastic for doctor Cassie. People listening tonight. What is if
you had one or two take home messages And don't worry, Barry,
I'm going to get to you one or two take
home messages on thinking about amyloid.
Speaker 3 (32:42):
So the main thing is stiff hart heart failure symptoms
but with concurrent red flags that we mentioned earlier, neuropathy,
bilateral carpal tunnel back issues, very common things that go
hand in hand, and it is basically the crux of amyloid.
Speaker 4 (33:04):
Right, And I would say again, regardless of the disease
or condition, don't be afraid to speak up. Absolutely, Yeah,
that's tracting bag. Doctor Trektenberg. What what's your thought for
everybody listening tonight.
Speaker 5 (33:21):
Yeah, I mean I agree with all of that, but
and I think you know, the only thing I would
add to that is, you know, if you're if you
have any of those symptoms that we were describing, don't
be afraid to ask your doctor could I have amoid dosis?
And if the doctor looks at you like you're crazy,
say you know, can you refer me to a specialist
in emoidosis or go ahead? And if they're not willing to,
(33:42):
then you know, there's there's websites you can go to.
You can google it. A couple good websites that Amoid
doss Support Group dot org or the AMILOI Doss Support
dot org or a ARCI dot org can help you
navigate that as well.
Speaker 2 (33:57):
Right, all right, well, this I do believe will.
Speaker 4 (34:01):
Be an eye opener for everybody listening tonight and people
that listen to it in the future. But the key
crux here is listen to your body. If you have
symptoms that seem a little adult whack that aren't getting better,
you really have to speak up and really ask to
be referred to, be evaluated, evaluated by somebody that's an
(34:24):
expert in emiloidosis.
Speaker 2 (34:26):
All right, well, look, you both survived the hour here.
Speaker 4 (34:29):
I want to thank you both Dr Barry Trachtenberg and
Dr Mawash Kassi from Houston Methodist Hospital. It really was
awesome having you tonight. Thanks so much for having us
all right, and for everybody listening.
Speaker 2 (34:40):
Thank you again.
Speaker 4 (34:41):
Don't forget go to doctor Joe Glotti dot com and
we'll see you next Sunday night at seven o'clock.
Speaker 2 (34:48):
Take care.
Speaker 1 (34:50):
You've been listening to your Health First with doctor Joe Galotti.
For more information on this program or the content of
this program, go to your Health First dot com.
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