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Bringing together expert clinical insight and lived patient experience to make Waldenstrom macroglobulinemia (WM) clearer, less isolating, and easier to navigate.
We are really thrilled to have you listening
to us.
I'm Professor Shirley DeSar.
I'm a hematologist at University College Hospitals in
London, UK, and I run a specialist wardens
from service at our hospital.
With me is a very special guy called
Bob Perry.
I'm really looking forward to this podcast and
reaching out to all you guys out there
living with WM or our families living with
WM.
I live in Poole in the United Kingdom
on the south coast and my background is
I was a soldier for 13 years and
then a policeman for 21 years and then
I worked in Iraq and Afghanistan for a
further five years and then I got ill.
So I've kind of spent all my life
in law enforcement and the military I guess.
But now I'm just a simple WM patient
like the rest of you and I'm eager
to share my knowledge and share Shirley's knowledge
with you through questioning her over these podcasts.
Oh gosh, that sounds very, I'll have to,
I really have to behave Bob.
You'll have to up your game, yeah.
Welcome to Waldenstrom Unplugged Words Matter.
Join leading WM expert Professor Shirley DeSar and
WM patient and advocate Bob Perry as they
make sense of the language, science and lived
experience of Waldenstrom Macroglobulinemia or WM.
Together they'll translate complex medical jargon into clear
practical conversations to help us better understand and
navigate life with WM.
Let's dive in.
So Bob, you were diagnosed with something unpronounceable.
Tell us more about that and how that
happened.
That was 11 years ago that I was
diagnosed, but I've got to go back four
years before that.
So 15 years ago when I was 56
years of age, I was fit for my
age, but all of a sudden I started
getting some weird, really weird symptoms like my
tongue felt too big for my mouth.
I thought I was slurring my words and
everybody said, no, you're not slurring your words.
I was having problems with balance.
I was feeling very fatigued.
All sorts of things were going on and
I kept going to my doctor in those
early years and they kept saying, well, you're
anemic, you've got to eat more spinach.
I always remember kept saying, eat more spinach.
And I did, I ate so much spinach.
Then I started twitching, having these horrible twitches,
like really bad twitches.
I could have a twitch in a restaurant,
for example, and knock the whole table over.
They're so violent.
And so I ended up going to see
a neurologist and I will be honest, I
broke down in tears because I'd convinced myself
that I had motor neuron disease.
And this neurologist said, hold your arm out.
So I held my arm out.
And they said, I'll tell you now, you
haven't got motor neuron disease, but you've got
obviously got something going on there.
And then they followed a year, two years
of trials.
I came up to London to Queens to
see a professor up there.
It was all very bizarre.
And then I got diagnosed by a professor
at Queens with something called in those days,
stiff man syndrome, but it's now been renamed
stiff person syndrome.
And so I thought, well, okay, at least
I now know what's wrong with me, but
there was no treatment for it.
I had IVIG, intravenous immunoglobulin for 18 months,
every six weeks or eight weeks, didn't make
a lot of difference.
I didn't know what it was supposed to
be doing.
And then so at the four year point,
I had to go and have a wisdom
tooth out at the local hospital under general
anaesthetic.
So had it when I was in the
recovery room, and all of a sudden the
guy in the bed opposite me said, are
you okay?
And I said, yeah, why?
He said, because you are bleeding really badly
out of your mouth.
I touched my mouth and yeah, this blood
was just gushing out, but it was very
thick, congealed blood.
And the nurse came out, gave me a
thing.
And then I got taken back down and
they repaired it.
But then the surgeon came in, he said,
there's something really wrong with your blood.
That shouldn't have happened.
And it shouldn't have looked like that.
Very bizarre.
He said, you need to go back to
your GP.
And I said, I'll keep going to the
GP.
He said, no, you need to go because
there's something wrong.
I don't know what it is, but there's
something wrong.
And luckily for me, the day I went
back to the GP, a local Muslim, an
elderly lady, retired doctor who did a one
day a week in the surgery.
And she looked at my records and said,
yeah, we keep giving you blood tests.
And we keep telling you that you're anemic.
I'm going to try some different blood tests.
And then literally from that blood test, got
a phone call.
It was the Rugby World Cup in 2015.
And I was in Cardiff watching Australia against
Fiji with my wife.
Got a phone call from my GP, but
I couldn't take the phone call because it
was so noisy in there with the cheering
and the game and everything like that.
So I rang him back after the game.
He said, you're a rugby match, aren't you?
Because I knew my GP quite well.
He said, you're a rugby match, aren't you?
I said, yeah, I'm in Cardiff at the
World Cup.
He said, well, you need to get yourself
back here because you've got something really badly
wrong with your blood.
And I said, well, I can't come back
tonight because I'm meeting some guys, we're going
to have a few beers.
And he said, well, you need to get
back here first thing in the morning.
I've got a bed ready for you in
the hospital.
So literally the next day I went back,
went to the hospital, got into my bed
there, then followed some more tests of bone
marrow biopsy.
And within sort of, well, by the next
day, a consultant was coming and said, you've
got a very rare type of blood cancer.
We're not sure what it is at the
moment, but we're going to do some more
tests.
And then I went before the consultant hematologist
and he told me that I have Waldenstrom's
macroglobulinemia.
And this is God's honest truth.
I said to him, because he was a
German gentleman, Dr. Hoffa, when he said in
his German accent, you have a Waldenstrom's macroglobulinemia.
I said, that's easy for you to say.
And you know what, I was kind of
relieved.
I'll discuss later on about my initial feelings,
but there was also a feeling of relief
that at last four years in, I know
what's wrong with me.
That was how my introduction to this magical
thing, Waldenstrom's macroglobulinemia.
There's quite a story and it's a very
unusual presentation to have stiff person syndrome.
So it's not something that people should expect
to happen.
And I think it probably took the focus
off other things.
I suspect that it was indirectly related to
the Waldenstrom, because Waldenstrom is a very immunological
disorder, and it can trigger all kinds of
immune activities.
And stiff person syndrome is one of these.
There are antibodies produced called GAD antibodies, and
WM produces a lot of antibodies that create
mischief.
So I think in retrospect, probably that there
was some connection, but you then had a
more precipitous diagnosis following a blood test, because
you were told to go back and you
had the bleeding and the congealed blood, et
cetera.
So in many ways, it's a story I
hear in slightly different forms time and again,
when patients present, it's something to do with
the blood.
And in fact, that is what Waldenstrom himself,
the Swedish physician, he noticed this and made
this observation and published this in 1944, that
he found a small group of patients who
had odd blood, actually.
And that was due to this, what he
called macroglobulin, which is basically a large macroglobulin,
this protein.
And he was ahead of his time, because
we have a lot of technology now that
can tell us more about proteins.
But he made a very kind of protean,
if I may put it that way, observation
about this.
And that's what led to the disease being
named after him.
It's become a bit of an iconic term
for the disease, because it's very important to
set it apart from other lymphomas, which are
different in the way they behave.
So that is a really interesting story.
And I mean, how do you think that
the news was delivered to you that you
had?
Were you told it's a form of blood
cancer?
I mean, did you, you must have had
a bone marrow?
Did you have scans?
What did all that feel like?
I didn't mind having the bone marrow biopsy
and all the scans and stuff, because I
was desperate to know what was wrong with
me, having been extremely fit all my life.
So none of that bothered me.
I thought at least I'm having all the
tests.
I will be honest, when the news was
delivered to me by Dr. Hoffa, I don't
remember much about what happened after that, because
in my mind, I was going through things
like, oh, well, I did say to him,
well, if I've got this, how long have
I got to live?
And he was very nice.
He said, oh, you'll be okay, I'll give
you a good 10 years.
And I remember turning to my wife and
saying, because I was 61 at the time,
and I said, 10, 71.
Yeah, that'll do, the kids will be growing
up.
Yeah, that'll do me, 71 will be all
right.
And now I'm a year past that.
How was it going to tell the kids?
Why did I get it?
How long have I had it?
Is it hereditary?
I had all these things going through my
mind, so much so that I wasn't listening
to him.
He was talking to me, I wasn't listening
to him.
And it wasn't until we came out of
the room that my wife said, but did
you hear what he said, this treatment, this,
that and the other?
No, I didn't hear that.
And then the other thing very important for
our listeners to understand is there was a
nurse sat behind me who I now learn,
or I learned very quickly, was the clinical
nurse specialist in the hematology department.
And on our way out, she was giving
me booklets.
She was giving me pieces of paper.
She was giving me advice.
She was giving me her phone number, telling
me to ring her if I had any
problems.
And I totally didn't listen to her.
I totally ignored her.
I can't even remember what she looked like
or what her name was.
But she was, if I'd listened properly, she
was going to be my point of contact
for the rest of my time under that
doctor.
And it's really important.
I think that no matter what's going through
your mind, be aware of people.
It's not some random person coming up and
talking to you.
This is a person who is going to
be your best friend moving forward when it
comes to your health.
So ever since then, I've always, as you
know, Shirley, I always try and big up
our clinical nurse specialists because they do such
an amazing job and they're there.
So I've told you, my doctor is Helen
McCarthy.
I can't ring her up and tell her
I've got a problem, but I can ring
her to clinical nurse specialists up and they
will help resolve my problem.
I guess, yeah, diagnosis was tough, but at
least I had an answer.
And then I slowly started to learn more
about the condition.
I guess an important thing to tell you
about my journey is that I was diagnosed
on the Thursday and I started my chemo
Indian therapy the following Tuesday.
I did rituximab and bender mustin.
What worries me and our listeners need to
know this is I've met so many of
my fellow patients who get that diagnosis like
I did.
And then I told, especially if it's not
by a WM expert, that you've got this
very rare blood cancer, but go away and
I'll see you in three months time.
I'm going to put you on watch and
wait.
How must they have felt?
How must they have felt when they've come
out of that room?
Well, he's told me I've got cancer and
now he doesn't want to see me for
three months, six months, whatever.
I think we're very lucky that we have
this category of healthcare professional called clinical nurse
specialists.
It's actually mandated in the UK for all
cancer patients.
I'm not sure this happens in other countries,
to be honest, I think.
And actually, even here, it can be a
little bit patchy because resources are quite stretched.
But you're right, there are individuals who bring
different things to the table for you.
They're different to the doctors.
And there are other healthcare professionals who are
invaluable during the course of your journey with
WM.
So I think tapping into these resources is
important.
Getting the right information in written form is
important, especially as you mentioned at the beginning,
you are like a rabbit in headlights and
you don't take things in.
The fact that you had your wife there
was fantastic because she could be another pair
of ears and eyes.
And then you had information to go home
and read, which I think is very important.
And actually, I must say also that accurate
information is vital.
There are some quite generic sources of information,
which are very well meant, but they are
not specific enough for WM.
So I always point patients in the direction
of WM specific material.
So I think that's super important.
In regards to managing WM and living with
WM, if I can use a sporting metaphor,
Bob, one has to play a long game
with this disease.
It is not something that needs rushing into,
whether it's diagnostically or treatment.
In general, when treatment is started, we follow
a schedule, but it's flexible.
We do not have to give it every
X weeks.
It's something that we can adjust as time
goes on because we want to slowly and
steadily deplete the disease from the system.
But we don't want to do it at
the expense of wellbeing.
And we can well afford to do that
in the vast, vast majority of WM patients.
You've captured as well the fact that not
everyone needs treatment to the beginning and your
commencement of treatment was pretty rapid.
So in one way, it's a whirlwind.
In other ways, I'd perhaps like to call
it a bittersweet experience, that you were told
you had this disease, but you were relieved.
There was an explanation.
And once you did start treatment, did you
feel better in any way?
When you actually started treatment, did you feel
unwell?
Or was it more to do with your
numbers and the fact that you bled?
Well, I think it was to do with
the bleeding.
I can't remember what it was, but is
it called the level of infiltration in the
bone marrow was quite high?
Yes.
I want to say 60 to 65%, but
maybe I'm making that up.
I can't remember.
But it was high enough to warrant starting
treatment.
They deemed me fit enough to start treatment
straight away, I guess.
And a very odd thing happened to me
personally was before, a couple of hours before
I actually started the treatment, they gave me
a handful of steroids, beginning with a P,
prosidone or something.
Pregnant alone.
That's it, yeah.
16 of those.
And I took all 16.
And I kid you not, that was 11
years ago and from that day that I
took those tablets, I have never had a
twitch like the violent twitches I was having.
Now, whether that was a coincidence or not,
or whether it was the relief of now
knowing that.
But I just want to go back to
something you said there about information.
The nurse gave me a book.
It was a Macmillan book, Macmillan Cancer Charity
book on blood cancer.
And it was about 138 pages long.
And I looked through it and Waldenstrom's, because
it starts with W, was on page 137.
And it was one paragraph.
That was it.
Now we've got, thankfully through organisations like the
IWMF, we've got patient pamphlets, doctors' pamphlets, nurses'
pamphlets on WM, what is it, why is
it, frequently asked questions, all those things.
So these resources thankfully are out there now.
And we must make sure that newly diagnosed
patients get access to those and not...
As good as the Macmillan book was, if
I'd have had a famous cancer that began
with A, then the book might have been
useful for me.
But to find it on one page, 137
of 138 pages was a bit demoralising and
only one paragraph.
And now we have this podcast.
We have this podcast, we have resources.
We've got to tell our listeners exactly what's
going on and which questions to ask and
where to go to for their resources.
And I really hope we can do that
because I'm such an advocate for my fellow
patients and breaks my heart sometimes when I
still now take phone calls from people.
And it breaks my heart sometimes when I
hear their story, that they haven't come to
your hospital or my hospital.
They've gone to some regional outpost and seen
a doctor who doesn't really know too much
about WM.
And they just get a lack of information
and they don't know about the IWMF.
They don't know about other organisations around the
world.
And it's all out there.
We've just got to point them in those
directions and keep them aware.
Absolutely.
No, I think you're completely right on that.
And I think when people first get a
diagnosis, although there's a plethora of information out
there, getting the right information is often difficult
because the denominator of information is massive.
And I think it can be very scary,
especially if it's out of date.
And actually medicine is changing at such a
rapid pace now, whether it's diagnostics, therapeutics, imaging,
you name it is changing.
And if you sprinkle a dose of AI
onto that, you've got very rapid acceleration, both
for doctors and healthcare professionals, as well as
for patients who can directly tap into these
things.
One thing the people should know about Bob
is that he is a really active advocate
for WM from the get-go.
He's written from London to Paris, and he'd
rag me with him.
He's been up mountains.
He's been cycling up mountains.
He's taken long journeys by train to speak
to individuals on his own time because that
person was in distress.
And I think he's a pretty magical guy,
actually.
That's very kind of you to say those
kind words, Shirley, but I want to tell
the people a little bit about you, although
you are so well-known globally in WM
world.
But for those people that don't know Shirley
Dassar, she is just the most amazing human
being.
If you took me 10 years ago or
15 years ago, say, and introduced me to
Shirley Dassar, we would have had nothing in
common.
We probably wouldn't have spent more than two
minutes talking to each other because we're just
too chalk and cheese.
We're chalk and cheese.
But because of WM, to me, she's not
just a doctor, just a professor.
She's a friend, and she's a friend that
I can share all sorts of things with.
We've even gone drinking together.
She keeps beating me at drinking Guinness competitions.
She made a fall of herself in Athens
recently in front of me, which I do
have on video, by the way, which I
will sell if people need it.
Oh, no.
Yes.
Not the march.
Yes, the march.
Thank you for the guard.
I thought I was one of the guards.
We could have got arrested for treason that
night.
Oh, my gosh.
Luckily, we know people in high places in
Greek mythology, so I think we would have
been let off.
But no, Shirley is such a compassionate and
caring person.
She's not a nine to five, five days
a week professor of WM.
She is a 24-7 advocate for WM
patients.
She travels the world talking about WM.
She is an expert in WM, so she
is just an amazing, amazing lady, and it's
a real privilege to know her.
I was tearing up there.
We weren't warned to bring tissues, were we,
by our producer, but maybe we should.
No, it's been a real privilege for me.
My journey in this disease has started out
in multiple myeloma, which is a kind of
cousin of WM, but moved towards the WM
field and happened to coincide with time when
there was a lot of advancement and organization
in the WM field, the community of doctors,
led by Stephen Treon and his team at
the Dana-Farber.
He is such an amazing steward for this
field.
Not only is he a great scientist, he's
a great clinician.
He's a great promoter of teams across the
world with the objective of curing WM.
He's also someone who explains things really well,
and I learned a lot, I have learned
a great deal from him.
It is a privilege to work in this
field.
We have a wonderful community of healthcare professionals
from across the world.
It's growing as time goes on, because IWMF
is really wanting to have eye with International
with the capital of I, because no one
should be left out.
It's been a wonderful journey for me.
There's nothing I like more than having a
chat with patients, and my team get a
bit frustrated because the queue in my clinic
can be a bit long, so I'm quite
well known for jabbering on with patients.
But actually, I'm really interested in who they
are, because behind a person with a diagnosis
is the person.
I'll give you one example.
There was a lady who came in to
my clinic for the first time, you know,
early 80s, otherwise quite well, but she had
an unusual accent, and I was trying to
work out.
So I called her into my clinic room,
and I said, so where are you from?
And she said, guess.
So I said, oh, okay, you're going to
have to speak some more, because I haven't
quite worked it out yet.
And so she did speak some more, and
I was, I don't know, I was mulling
through.
And anyway, long story short, she said she
was from Curacao, which is in the, I
think, the Atlantic, not far from Venezuela, a
former Dutch colony.
And so she had a Dutch accent.
And I was super excited because I had
just come back from Colombia on a holiday
with my family.
And I just love that area.
I was just so taken with it.
And of course, Venezuela is nearby.
And she said, oh, I love Colombia as
well.
And to be perfectly honest, we spent 10
minutes of NHS time talking about these matters,
which meant so much to both of us.
And she recommended a book to me, which
I subsequently read.
It was just such a joyous experience for
me to do that.
We, of course, got onto her condition, and
we carried out relevant investigations.
And I saw her again, and she remains
under our team.
But these are what I call micro joy
moments of being a doctor in this or
any field, but particularly in this field.
And I'm just, you know, so for me,
it's I love my job is what I'd
like to say.
And working with great people to deliver great
things is a real privilege and a joy.
So yeah, let's do it this far.
Let's do this.
Keep listening as Bob and Shirley share more
insight and perspective on the wild world of
Waldenstrom.
Just a quick reminder, this podcast is proudly
produced by IWMF.
If you have a question you'd like Bob
and Shirley to answer, please email us at
PR at IWMF.com.
That's PR at IWMF.com.
So Shirley, I got a question for you.
You talked earlier on about Dr. Jan Waldenstrom
from Sweden.
And if my memory serves me correctly, there's
a link between you and Dr. Waldenstrom.
And I think it might be your uncle
or your father trained with him.
Ever got that right?
My uncle, yes.
My uncle is a Swedish man, gentlemen, actually.
And he trained as a doctor at Karolinska
Medical School.
And he did attend lectures by Jan Waldenstrom
when he was doing pathology lessons.
And another colleague and friend who is still
very active in the world of Waldenstrom, Eva
Kimby, a great heroine of mine, the lady
in red, who was actually a contemporary of
my uncle in medical school, she also met
Jan Waldenstrom.
So it's a small world, actually, but in
a nice way.
I have a great affection for everything Scandinavian,
actually.
I think it's a wonderful part of the
world.
They're also really well known for registry data.
As a group, they have this ethos of
collecting population data.
And that's been very valuable in plasma cell
disorders and WM.
But the focus is going forward to make
that more pluralistic, more capture everyone.
And so that is another forward looking thing,
that collecting patient data is vital.
And the Australian group are doing it as
part of the whimsical study.
We have had a UK-wide registry here
for some years, which we're hoping to build
on.
And that is a real weapon in the
march for Waldenstrom, because you can have most
wonderful drugs, but you really need to understand
your patients, who they are, what they've had,
how they've responded, ideally patient-related outcome measures,
you know, what the experience of their disease,
of different treatments.
So, you know, I believe in clapping the
two hands, and one hand is science and
drugs, and the other hand is knowing the
patients in great detail, storing that in a
prospective way, so that we can all work
as a community and figure out what is
best for which patient and when.
And talking about progress, you know, you're talking
about not just data, but did you see,
and I hope our listeners saw recently, or
can view it on the IWMF site, Dr.
Ferrero in Italy, who's just done a study
on, because we all know how much we
hate the bone marrow biopsy.
And he's looking into, or he's researching an
idea, which I think is coming to fruition
of being able to identify WM without a
bone marrow biopsy.
Can you enlarge on that?
Is it something that could be in the
future?
Yeah, I saw that piece, and I was
very impressed.
It comes from a unit that really looks
into these things in great detail.
My own view is I think these are
all pieces of big puzzle.
And I think, like many things in life,
whether it's a career or whatever, I mean,
WM, you could think about WM as a
10,000-piece jigsaw puzzle.
Or it could be a million pieces, you
know, it depends how deep you want to
dive into it.
Personally, I think that the bone marrow biopsy
does offer a very important denominator for the
disease.
The disease lives in the bone marrow, it
arises in the bone marrow.
And so it is not just the WM
cells that tell the whole story.
It's their home, what they call the niche
that they live in.
There's a lot of support that comes from
that niche, signaling pathways that are upgraded and
expressed.
So I think it is adding another very
important piece to the puzzle so that we
can continue to fill that jigsaw board and
gradually make picture out of it.
So I was very happy to see that
work.
But I'm always cautious about replacing things, because
there's always more to it than that is
what I would say.
Things are always more complicated, particularly anything to
do with the immune system.
It is not one organ.
It's a huge system.
It works 24-7 every single day of
your life.
Things make it activated, it controls itself.
There are all kinds of things treatment-wise
which can suppress it.
So it's a moving, it's much more than
the sum of its parts.
And it's the interactions of it within itself
and within individuals is more than the mind
can take.
By definition, science has to be what's called
reductionist.
You have to take a deep dive into
certain areas so that you can understand them
better.
And in the end, you kind of put
these smaller pieces together and that can give
you a better picture of the bigger picture,
which is what actually happens in an individual.
And that's another matter.
Every Waldenstrom patient is an individual.
There are similarities and differences and parallels, but
at the end of the day, every single
person has a unique immune system, a unique
disease.
So I think I would generally advise patients
to ideally see a specialist at some point
in their journey if they can, because they
will then get a kind of a look
over by someone who has a deep understanding
of the disease and make sure the right
tests happen for the right reasons and make
sure, hopefully, your guides people as to what
to act on.
Because nowadays in the world of media and
data, et cetera, big data, we have so
much information, but that doesn't mean we have
knowledge.
They are two different things.
A lot of information exists out there, but
you have to turn that into knowledge and
ultimately into wisdom to act on it, to
make it actually meaningful, especially for individual patients.
So what you've just done there, Shirley, I've
bigged you up, told everybody what a lovely
person you are, but you just told us
that you still want us to go through
that nasty bone marrow biopsy, essentially.
Well, I was hoping that your kind introduction
would help to smooth the waters on that.
Okay.
No, no, we'll keep doing it.
But you just touched on it being an
individual.
I think I must have spoken over the
last 10 years, probably to, I guess, 500
or 600 WM patients from around the globe.
And I can honestly say that not one
of us has exactly the same story of
how our condition started and how it manifested
and even how after treatment our progression goes.
I mean, I wrote something down here this
morning.
I've spoken to WM patients who are now
22 years into active monitoring.
They've had no treatment and they're still on
active monitoring 22 years in.
That is just amazing.
So you've got that person there.
Me, you went straight into treatment, but it's
just the symptoms and unlike any other cancer,
I suppose, that I've heard of.
You know, I've spoken to men and ladies,
you look at breast cancer, you look at
testicular cancer.
They're all very linear.
They follow a kind of a set pattern.
The treatments are a set treatment.
You either recover or you don't.
But this disease is just mind blowing in
how many different ways it can present and
the problems it causes people, which must fit
for people like yourself, must be a real
bit of a minefield to overcome.
And I bet you still, even as long
as you've been dealing with this condition, I
bet you still hear new stories.
Oh, yes, absolutely.
The other thing I'm never afraid of is
to ask people because I know I'm considered
an expert and I've had a lot of
experience over many years, but because medicine is
growing the way it is, my knowledge of
certain other fields, which could impact on the
management of the patient's WM, is something that
I may be less aware of.
So getting the right specialist involved and actually
sometimes in terms of general medical problems, I
actually ask my junior colleagues because there are
newer treatments for heart disease, diabetes, and so
on, which I don't really understand.
So I turned to them for help.
But yes, I think WM stands out as
being so multifaceted compared to many other diseases,
including other forms of lymphoma, of which there
are hundreds of subtypes.
I would say on a molecular level, many
cancers have a lot of differences.
And that goes for breast cancer, prostate cancer,
et cetera.
And that is certainly the focus of research
in a lot of oncology these days, and
that is giving rise to a lot of
targeted therapies, expression of receptors, et cetera.
But I think where WM excels is to
be clinically very multifactorial as well.
It's got the lymphoma cells, it's got the
plasma cells, it's got the IgM.
And these IgMs are not just passive proteins.
Some of them are kind of roam around
doing things of an immunological nature.
And that gives you a whole set of
other monoclonal gamopathies of clinical significance.
And this is a very big topic for
us as doctors who deal with these conditions.
Monoclonal means of one type, which is the
IgM paraprotein or M-protein.
And gamopathies is when you have the gamma
globulins, which are the group of proteins in
which all the immunoglobulin sit.
There's a whole group of those conditions, which
actually happen as we get older.
Immune systems might misregister something or produce a
small immune response.
And then this little protein lingers in the
bloodstream and does nothing.
And as you said, you've met patients, a
patient who's been on watch and wait for
22 years.
So 100%, I think WM has so many
layers to it, both clinically, molecularly.
There's also the psychology of having a condition
like this, because it has so many...
It's a real minefield, I think, for...
It's a minefield for doctors.
And you can imagine therefore, I can only
imagine for patients what it's like.
Hence the need for information that's not just
evergreen, but also is developed and kept up
to date because things change very, very quickly.
So I think that is really, really important.
I think that's one of the main...
One of the drivers for this podcast is
to produce both material that will always apply
in terms of the principles of diagnosis and
management and approach to things.
But also, the beauty of podcast recording is
that you can then upload things in almost
real time, actually, when things change.
You can do an episode on that.
The other beauty is that we can say
to people, look, what would you like to
hear about?
Because that can drive the content of this
podcast.
So it's not about us, it's actually about
those who are wanting to listen.
And so we really invite people to do
that.
And there will be a mechanism to put
questions through so that we can include them
in future episodes.
This podcast is there for all of the
WM community.
And there is no question that is stupid.
Every question counts.
It's really important that people understand that.
But just so that we got a good
idea, Shirley, we keep talking about a cure.
And I think I'm right in saying that
I listened to Steve Treion recently, who you
alluded to.
Realistically, it's several years, many years down the
road.
But what our listeners need to be aware
of is that the amount of work going
on to find a cure.
But whilst they are trying to find the
cure is the progression of new drugs that
are coming along to manage this condition.
There seems to be a new drug coming
out every year, BTK inhibitors, BTK degraders.
And I'm sure we can discuss all these
in future episodes, what they actually do and
what they are.
But just to reassure our listeners, really, that
the search is on for a cure.
A cure will come one day, but maybe
not in my lifetime.
That doesn't worry me because I know that
there are these drugs there that can manage
me for the rest of my days.
But can you give maybe our listeners some
reassurance about the prospect of a cure?
Absolutely.
It's a bit like living life generally.
One can always be aiming for something.
When this happens, I will do that and
when, whatever.
But actually, you're living your life at every
moment anyway.
And I think if we are focusing just
on the destination, we miss all the granularity
that is with us and that we are
living along the way.
So I think that if at all possible,
once, for example, a person is diagnosed and
the shock, if you like, sits better with
them because it is a shock.
For some people, it's a real shock.
And I think you had a lead in
time to your condition and for you, it
was in a way a relief.
But I'm sure there was also grief for
what you felt was good health and now
you were in this other sort of zone.
But I think that we should be well
aware that it is, in most people, a
chronic condition.
It's slowly progressive.
In some people, it never progresses.
What science is trying to do is to
understand who is likely to progress, who is
likely to stay quite quiet, monitor people in
an active way, not just passive.
It's like seeking people's voice when something changes
so that they go back to their doctor
and say, look, this has changed.
I don't feel any different or something has
changed.
Have some more blood tests, have a checkup.
But experience the journey of your life rather
than looking just to the destination.
Because as you mentioned, Bob, that destination, if
we call it cure, I don't know when
it will come.
Because as I mentioned earlier, cancer and WM
in particular is a very complex condition.
Many players, it's involved within the body but
also externally in terms of development of new
technologies and treatments, etc.
All I can say is the future has
never been brighter in WM as it is
now.
That includes the fact that healthcare professions are
learning about how to help people live well
with their WM.
It's called healthspan, not just lifespan.
It's doing the things you want to do,
keeping fit, making sure the immune system is
protected, taking sensible precautions, eating well, not ignoring
other bits of your health.
For example, I'll often say to people, do
you have a blood pressure machine at home?
Keep an eye on it.
Just in a way taking control of the
things you can control for the benefit of
yourself so that you can, as a package,
you're better put together, if you like.
I think there is also this concept called
operational cure where some people need treatment like
yourself, Bob, and they then have that treatment.
They've reached the end of the treatment and
the dust settles and then they enter into
a new phase of life where, by and
large, many people feel quite normal, actually.
There may be a period where you need
to take medicines to keep your immune system
supported for a bit, but in those patients
or persons, that span of being in remission
can last for years, actually.
Typically, it does.
During that time, I think it's so, so
important to make the most of the day,
every single day, because that is actually what
living life is.
I think it's really important not just to
look at the destination, like when is the
cure happening, et cetera.
It's like, how am I living my life
now?
How can I live it well with my
family and friends and the beautiful world that
we live in?
I think it's got to be equally multifaceted,
the approach to living with this condition.
I'm 100% with you there, Shirley.
You also touched on wellbeing.
They're living well with WM.
There are resources available for that.
We've got the IWMF.
There's Anne Grace MacMullan, who runs a fantastic
series of wellbeing things like yoga, cheer, yoga,
breathing techniques, all the relaxation stuff, which is
available on the website and through the IWMF.
I know of a lot of people in
America, but they log in and they listen
to and take part in all this wellbeing
stuff.
So again, the resources are out there.
The future for WM, I think, is just
fantastic, not just the cure, but helping each
other out, advocating for each other, living well
with WM.
It's a very lonely condition.
In fact, I remember, I've got to tell
you this, when the doctor said you've got
WM and I said to him, how can
I meet somebody else with WM?
He said, you won't meet anybody else with
WM walking down the street.
And that's been right.
I've never met anybody in the street with
WM.
I've only ever met them through forums and
meetings and stuff like that.
What I hope you and I can do
through these podcasts is bring us all together
so that nobody has to live with WM
on their own.
Connect people with WM and their families as
well, because it's an experience for everyone affected
by WM.
So yeah, that is what we are aiming
to do.
We want ideas, we want questions, but yeah,
this is the beginning of the journey.
Thank you very much for listening.
We'll be back.
Yeah, thank you very much.
Let's close with a mindful moment.
With Bob and Shirley as our trusted guides,
we can take a moment to breathe and
let it all settle.
Resetting the nervous system can be helpful, especially
when handling difficult news or a lot of
information.
Take a moment to find your seat and
let's take three easy breaths together.
Breathing in through the nose and out through
the nose or mouth.
Easy breath in and out and one more.
This is your body.
These are your decisions to make and you're
never alone.