Waldenstrom Unplugged : Words Matter

Waldenstrom Unplugged: Words Matter brings together expert clinical insight and lived patient experience to make Waldenstrom macroglobulinemia (WM) clearer, less isolating, and easier to navigate.

What does a rare diagnosis really mean for your everyday life - and do you need treatment straight away?

This episode explores the realities of living with WM, from diagnosis and active monitoring to treatment decisions, symptoms, quality of life and finding support within the WM community.

📌 Big takeaways from this episode:

“Watch and wait” doesn’t mean "doing nothing"!
Your symptoms matter as much as your numbers.
Rare doesn’t mean you have to face it alone.

This podcast is for general informational and educational purposes only. It does not constitute the practice of medicine, and listening does not create a doctor-patient relationship. Waldenstrom macroglobulinemia affects everyone differently; nothing heard on this show should replace the personalized advice, diagnosis, or treatment plan provided by your own oncologist or healthcare team. Always consult your doctor before making medical decisions

If you have a question for Shirley or Bob, you'd like featured on an episode, please email: PR@iwmf.com - Remember to keep your questions broad and educational rather than sharing specific medical details.

WITH SUPPORT FROM IWMF
About the IWMF The International Waldenstrom Macroglobulinemia Foundation is dedicated to supporting and educating everyone affected by Waldenstrom macroglobulinemia while advancing the search for better treatments and, ultimately, a cure.
Please visit: https://iwmf.com/

YOUR HOSTS
Professor Shirley D’Sa: Professor Shirley D’Sa is a leading haematologist at University College Hospital in London, where she runs a specialist Waldenstrom macroglobulinemia service. She is widely respected for her WM expertise, compassionate care, and commitment to helping patients understand both the science and the lived experience of the condition.

Bob Perry: Bob Perry is a WM patient and advocate who brings warmth, candor, and hard‑won perspective to conversations about diagnosis, treatment, and living well. Drawing on his own journey and his support for fellow patients, he helps translate complex information into practical, relatable guidance

What is Waldenstrom Unplugged : Words Matter?

Bringing together expert clinical insight and lived patient experience to make Waldenstrom macroglobulinemia (WM) clearer, less isolating, and easier to navigate.

Hi, I'm Bob Perry.

I live with WM and work as a

patient advocate supporting others affected by the condition.

And I'm Professor Shirley Dessau, consultant hematologist and

WM specialist.

Together we'll be sharing both the patient and

clinical perspectives to help answer some of the

questions people commonly have after diagnosis.

Welcome to Waldenstrom Unplugged Words Matter.

Join leading WM expert, Professor Shirley Dessau, 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.

Remember, the information in this podcast is for

educational purposes and does not constitute and does

not substitute for professional medical advice.

Let's dive in.

Hi and welcome back.

If you joined us for episode one, you'll

remember we introduced Waldenstrom Macroglobulinemia, or WM as

we call it.

We talked about what it is, my journey

to diagnosis, and some of the important first

steps a newly diagnosed patient can take.

I think we can explore diagnosis a little

more before moving on.

First, getting diagnosed really seems to require a

lot of advocating for many WM patients.

You hear of some really long diagnosis times,

and why is it so hard for people

to get diagnosis?

And Shirley, what about how rare this condition

is?

It's interesting you should use that word, Bob.

I have to confess that WM doesn't feel

rare to me at all.

That's because I've spent much of my professional

life with people who have it.

I see it every week.

I think about it most days.

So there is this interesting difference between something

being statistically rare and being a very large

part of someone's world.

In medicine, people often talk about incidents and

prevalence, and it's quite a difficult concept to

fathom.

So I think a good analogy is a

forest.

If you imagine a forest represents the community

of people living with WM, the incidence of

the number of new trees appearing in the

forest each year.

Prevalence is all the trees currently standing in

the forest, whether they appeared last year or

20 years ago.

So every year, a small number of new

trees become part of the forest.

But over time, the forest can grow substantially.

So a person who's on active surveillance is

still a tree in that forest.

Someone in remission hasn't disappeared from the forest,

and someone undergoing treatment also remains in the

forest.

So what changes is the status of that

person, but their membership of the WM community

does not change.

So the other thing I want to mention

is that medicine is very good at measuring

things that are good, easy to count, such

as IgM levels, hemoglobin, response, rates, progression.

But I think it's very important to say

not just how many trees are still standing,

but how healthy is the forest.

And that is what we as a community

working in WM are very keen on addressing.

So a tree may be technically standing, but

struggling.

Another may be thriving.

And actually, the well-being of that tree

is not determined solely by WM.

The soil, the water, the sunlight, neighbouring organisms,

the weather, all of that matters.

A forest also contains trees of different ages.

Not every change in an older tree is

caused by WM.

And conversely, something apparently attributed to aging may

actually be due to the WM.

So this is where we need to be

aware of how to consider the rarity.

And if you look at the whole landscape,

it looks rare.

But if you step inside the forest, you

actually discover an entire ecosystem.

There are people living with WM, their families,

clinicians, scientists, patient organisations, they're all connected.

So it's not just about counting how many

trees are standing.

It's really to understand the forest and help

every individual within flourish.

That's a really interesting analogy, Shirley.

And I understand totally what you're saying there.

But as a patient myself, especially when I

was newly diagnosed, having said to my doctor,

how do I meet somebody else with this

condition, he said, you probably won't bump into

somebody else with this condition in the street.

And so maybe to counter your analogy, for

me, when I was newly diagnosed, I would

say I was like a tree in the

desert, and I was going to have to

walk a long, long time with lots of

hardships before I came across another tree in

that desert, if I ever did.

So I get what you're saying.

But I think certainly as a patient, and

I think some of our listeners may agree

with me on that, is we as patients

do believe that it is a rare condition,

not to go against what you've just said.

It's a really good analogy.

But that's how certainly I felt.

I don't feel that now because I'm kind

of in the system and in the family,

in the WM family.

But certainly those first few months and years

for me, I kind of felt like I

was in the desert, one tree in the

desert.

I get you, Bob.

And many people I see in my clinic

come with very similar sentiments.

They felt alone.

And it's only once they have seen a

specialist that they perhaps begin to feel a

little more in tune with the situation, and

are able to perhaps even relax more because

they know what is going on.

They also get introduced to community through organizations

like RWMF, where there is a wealth of

information.

So I think rarity does not mean having

to be alone.

That's right.

So if you remember from episode one, my

doctor made the decision to treat based on

a bone marrow infiltration percentage being high.

In your opinion, is that enough to start

treatment alone?

And in what situation should you actually get

treatment right away?

It's so dependent on the individual and their

overarching circumstances.

So the fact that there's a high level

of disease in the marrow is not an

automatic trigger for treatment.

It really depends on what effect the WM

is having on you as an individual.

Often there are many symptoms that can be

related to WM.

Other symptoms may come through the psychological burden

of having WM.

There may be quite a lot of overlap.

So as doctors, we need to look certainly

at the data in front of us based

on blood tests, bone marrow infiltration.

We also need to look very importantly at

trends, you know, what is happening over time.

And actually time is our best friend in

this condition.

We can afford to watch someone over a

few weeks if we feel we're not sure

that they need treatment straight away.

There are some circumstances where treatment should be

commenced immediately.

And that is one of those is what's

called Hyperviscosity Syndrome, HVS for short.

And that results from pretty much a steep

rise in the IgM protein in the bloodstream.

It's important to remember that IgM, which is

an antibody that we all, one of the

antibodies we all produce, for some reason circulates

around in groups of five.

And the fact that it does that means

that if the number of IgM molecules rises,

the thickness of the blood can suddenly escalate.

And then you end up with impaired circulation.

And when that hits vital organs, that can

cause a range of symptoms.

So it can affect your thinking, it can

cause headaches, it can cause visual disturbance, it

can cause shortness of breath.

And doctors should be on the lookout for

these symptoms.

I would say one caveat is that these

things can and often do gradually build up.

So you have to take quite a careful

sense or get a sense of when you

need to press the trigger on the treatment.

Coming back to the individuality of the patient,

I think that's what's crucial.

And whenever we talk about WM2, our colleagues,

we will always emphasize the fact that it's

not just the numbers, it's the symptoms.

And that is where history taking is very,

very important, listening to the patient.

And where patients can help is to describe

their symptoms, break them down, if necessary before

an appointment, just make a note and see

what is it that really is affecting you.

Keep perhaps a diary, how do things change

over time?

Because this will be very helpful for the

doctors who look after you.

Very well explained there, Shirley.

But one of the things I know I've

spoken to you about this before, and that's

the person's quality of life, when set against

their symptoms and results, and overall health.

And I think that's a really important question

for you to consider.

Well, how do you find out about their

quality of life?

And how do you weigh up their quality

of life as opposed to starting treatment?

And I remember you did tell me one

day a story about a very fit man

who used to run marathons that came before

you.

And maybe he had some higher readings, but

you made a decision together with that patient

on when to treat.

Well, I always feel getting an understanding of

the patient, what makes them tick, and what

affects them from ticking is very important.

And that is why I think time spent

with the patient to understand how the disease

is affecting them is time well spent.

I learn a lot from the patient because

they tell me what they normally do and

what they can't do as well.

One has to remember that although WM affects

an older age group generally, people are affected

in in most decades of adult life beyond

30.

Although it's rarer in younger patients, some are

working, some have families, young children, some have

older children, some have, you know, travel and

do all kinds of things.

It's so important to really delve into that

and try and understand what is it that

the patient has been doing.

I mean, a question I find very useful

is when did you last feel well, patients

think back.

And I think, you know, if they said,

I felt well, two months ago, then things

are clearly moving quite quickly.

Whereas if they've said, well, it's been changing

over several months or even years, that does

give some kind of background as to how

quickly one should act.

Quality of life is different things to different

people as well.

I think with experience, what I've learned is

that patients, their observations should generate the kind

of impressions you should get from them as

a doctor.

So it is something that one has to

do patient by patient.

So it's about how their condition affects work,

relationships, travel, and that sort of thing.

And when you're deciding when to start treatment

with your patient, do you take their views

and their needs into account where you can?

100%.

That is so, so important.

I mean, at the end of the day,

the patient is not passive recipient of things.

They really have to be involved.

We need to know what they're about, what's

happening to them so that we can then

recommend certain treatments.

Our job is really to recommend things.

It's not to tell them to do something.

There are often many correct answers when it

comes to treating WM.

One treatment may not be better than the

next.

The thing about it is to have a

conversation with the patient so that they're very

much part of the plan.

The thing that doctors have is hopefully is

well is the knowledge and the expertise and

the experience of seeing many patients from many

backgrounds of different ages and sort of cross

-referencing in our own minds what we've seen

in others and bringing that to the table

so that the patient who turns up for

the first time can hopefully get the benefit

of that experience and used to their own

advantage.

Our podcast is called Words Matter.

This is none so more true than when

a couple of phrases that have been bandied

about all the time I've had WM and

that is watch and wait or active monitoring

or active surveillance as you've just alluded to.

The term watch and wait to me is

a really negative saying whereas active monitoring and

active surveillance are very positive sayings.

And what do these mean?

How should we as a patient take those?

For example, and I may have alluded to

this in the last podcast, is I've heard

from people who have gone to their clinician,

been told they've got WM and then we're

not going to do anything, come back and

see me in six months time, I'm putting

you on watch and wait or active monitoring,

whichever term they use.

What do they mean by that?

So I agree with you Bob.

I think the term watch and wait sounds

very passive, both on behalf of the doctors

and the patients.

It's as if you're just an observer.

But actually what we are doing is an

active process.

It's a process of surveillance using a combination

of the patient's narrative of how they are

doing every time you meet them.

In other words, to what extent are the

activities changing over time and correlating that with

the trend in their blood profile, for example,

and then using that data in your own

mind as a specialist or clinician to say,

look, the way things are going, I think

we need to see you a bit more

often because there may be a move of

your condition.

Or I'm really confident that things are very

stable.

But if things change, you know where we

are.

That is the other very important factor.

There needs to be a mechanism by which

you can contact your clinical team.

And this is something that in my experience

varies quite a lot.

Sometimes people struggle to get in touch with

their teams in between appointments.

So this does change from hospital to hospital

in my experience.

So ideally there should be a system of

being able to link up with your clinical

team to say, look, X, Y, and Z

has changed.

I need to be reviewed.

Would you mind explaining this?

Can I share these symptoms with you?

This is the approach I take.

And I think all clinicians really do seek

to do that.

There are other professionals who can help along

with doctors to offer that kind of support.

And also organizations like IWMF can produce the

kind of information to bridge between those sort

of appointments so that there is somewhere for

people to look and to gain information.

I think the important thing also as a

patient is to be very honest about your

symptoms.

Not hold things back or adjust them in

case you are afraid of what the doctor

might do next.

Don't play them down if they are coming

up.

It's not an endurance contest.

And I often find it's very helpful to

actually look at someone's partner because they might

say, oh, I'm fine.

And the person next to me is shaking

their head.

So I do try and get visual clues

from everyone in the room.

Sometimes there are more people in the room

than that.

And they go, no, dad, that is not

true.

You are not fine, etc.

But as well as that, it's using things

like weight.

You know, we measure weight at every visit.

And actually, I use it both ways because

active monitoring is not just about saying, you

know, oh, my gosh, your weight is falling,

your lymphoma must be more active.

It's actually the other way around as well.

If someone is gaining weight or not doing

enough exercise, you know, that's all part of

the whole picture.

And I say to people, please, you know,

I mean, by the time I see you

next time, try and do this much exercise

every day, because they are more than the

sum of their parts.

It's not just WM.

It's keeping well, keeping active.

So I do take time to point this

out to people.

And I kind of feel that if as

a specialist you say that they perhaps might

take it a bit more seriously than if

their husband or wife is nagging them to

do that.

I kind of I try and give people

goals.

So for me, that's part of active surveillance.

It is keep well, you know, look after

your medical, other medical issues.

Watch your diet.

If you're borderline diabetic, think about what you're

eating and honestly exercise and just activity.

You just can't go wrong with that.

And I actually try and take my own

advice on that one as well.

That's interesting.

You talk about weight because I tell you

every time I go to my appointment at

the hospital, in fact, more than one hospital,

the weighing machine in the hospital is always

wrong.

It's always comes back five to 10 Ks

more than I actually am.

I don't know why that happens like that,

but there we go.

You think that applies to everyone, Bob?

I just use the system.

I keep telling the nurse and she just

loves.

So if I've been on active monitoring and

my symptoms are getting maybe worse and I'm

coming in for my next clinical appointment, how

can I prepare for that appointment when I'm

thinking that, oh, dear, this might be the

one where the clinicians are going to talk

about treatments.

How can I prepare for that?

I think it's important to come with a

hopeful mindset because for many people with Waldenstrom,

treatment will be needed at some point.

And when treatment is needed, you can be

assured that there is a plan for you

because we have effective treatments and we're still

working on how best to use them.

But the ones we use work in the

vast majority of people.

So that's the first thing.

Come with hope, not with fear.

You may be moving to the next stage

of your condition, but it's not the beginning

of the end.

It's just the beginning of the next phase.

The second thing I think is, as I

said, if you can have a little think

about what the symptoms are and how they've

changed over time.

I think if you write things down, that

can in a way get it off your

chest.

It can relieve the psychological burden of carrying

it in your head.

It also makes you more prepared for the

doctor's appointment.

Thirdly, bring someone, bring someone more than one

person, if necessary, with you to be your

support, to listen in and yeah, listen, be

sure that you've explained your point of view,

what you're feeling and hopefully the person on

the other side of the desk will hear

what you're saying.

That's the important thing to be armed with,

I believe.

Writing your questions down and writing your symptoms

down as well is really important, especially if

there's maybe a six month gap between appointments

where maybe personally I can say I've had

atrial fibrillation but it was five months ago

and I can't remember how long it was

for.

I should have written that down at the

time because that would have been quite good

information for my clinician.

But finally, Shirley, why does WM show up

in so many diverse ways?

I think I said in the last podcast,

I had twitches and bleeding and itchy skin

and fatigue and night sweats, a whole range

of, and I've spoke to so many people

who have different symptoms and different, like for

example, people going for an eye test and

being told they've got hyperviscosity in their eyes.

So why are so many diverse ways in

this disease?

So, Bob WM is never a boring condition

to have or look after because it is

fundamentally, it's a form of lymphoma, but it

is also an immunological condition.

And our immune systems work 24 seven, seven

days a week for us.

They are responding behind the scenes, all the

elements of the immune system, to things that

we encounter, whether they are infectious agents or

other things that float around in the water

or the air.

As time has gone on in my kind

of decades of looking after WM patients, it's

become less and less surprising to me that

people have such a myriad of symptoms because

basically the immune system is malfunctioning and it

has decided to unfortunately end up with an

accumulation of these lymphoid cells, as well as

the IgM and the disruption of the immune

system that goes along with it.

We'll come on to this in future episodes,

but the number of conditions that can emanate

from this one pathological state of these cells

is so variable as a result of that.

So I'm rarely surprised as to why people

do have such a lot of symptoms.

I'm also a believer in the fact that

the head and the body are actually connected,

not just by the neck, but you can't

just separate the physical from the mental and

the emotional, you know?

So people may have a physical symptom, but

they will then think about it.

They'll process it.

It'll worry them.

They may try and analyze it themselves.

And that interplay is a serious situation for

everybody, whether or not they have an illness,

to be honest.

So I think these factors all culminate in

what is the symptomatology of WM.

And that is why it can actually absolutely

present in different ways because of the manifestations

of the disease and the antibody.

There's also the way that people perceive those

symptoms.

That's, if you like, the sprinting on the

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