The Myeloma Minutes

Could the right treatment pace make all the difference to living well with myeloma?

Professor Gordon Cook explores frailty in myeloma, explaining why it is more than age, how fitness can change during treatment, and why treatment should be tailored to the individual.

📌Key Takeaways:

Frailty is dynamic - it can change.
Age alone doesn't tell the whole story.
Myeloma treatment isn't a sprint - it's a marathon.

For extra content and more resources, please visit our website: https://www.themyelomaminutes.com/

We are proudly partnered with Myeloma UK for this episode. For more credible myeloma advice, please visit: https://www.myeloma.org.uk/

The Myeloma UK InfoLine is: 0800 980 3332

This podcast is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional for personalised medical guidance regarding your health concerns

ABOUT YOUR HOSTS

Dr Jam Kothari (@myeloma_medic) is an Oxford based blood cancer doctor, specialising in the treatment of multiple myeloma and associated conditions. He has been a consultant for a decade, and leads the provision of myeloma care for Oxford and neighbouring areas. He lectures regionally and nationally and leads clinical trials investigating the use of new treatments for myeloma. He is a strong believer in patient based, holistic care, delivered with warmth, clarity and integrity.

Dr Sally Moore is a Bristol based consultant who specialises in treating patients living with multiple myeloma and other plasma cell disorders. She oversees the delivery of clinical research studies for myeloma patients and has academic interests in how to maximise quality of life for patients and improve outcomes in older, less fit patients. She frequently contributes to myeloma related educational events for fellow doctors and healthcare professionals at a local, regional and national level and is an active member of the UK Myeloma Research Alliance and an executive member of the UK Myeloma Society.

What is The Myeloma Minutes?

A living library of credible information for patients of multiple myeloma and their caregivers.

I'm Dr. Jam Kattari and I'm Dr. Sally

Moore and this is a Myeloma Minutes, a

podcast for people affected by myeloma, patients, friends

and family.

Hello, Sally, how are you doing?

Yeah, I'm good, thank you, good to see

you again, Jam.

Yeah, no, so we've got a really cool

pod today, haven't we?

So we've got a leading light of UK

myeloma on and he's coming to talk to

us about, you know, the area that he's

really, you know, got interested in the last

few years.

You know, he's, you know, he's wise, he's

funny, he talks with such eloquence and real

insight about myeloma and I really hope that

everyone enjoys this conversation with Professor Gordon Cook.

Yeah, I agree.

I mean, we've already had the chat with

Gordon, don't we, so we know what's coming

for our listeners.

I think there's a lot in there to

unpack, you know, I think Gordon is such

an expert in his field, having worked in

this area for decades, and so he sort

of walked us through, didn't he, Jam?

All the trial work he's done, what that

means to people, frailty, which is such a,

I think, a challenging issue.

It's a really complex kind of idea to

get across and he explores that from so

many different angles.

So I found our conversation incredibly interesting and

really illuminating and every time I speak to

Gordon, I feel like I learn something new,

so watch out, listeners, there's a lot to

squeeze into this one.

Yeah, so when he talks about frailty, I

mean, I think it's a word that, you

know, is used just in normal life, people

being frail, but what do we mean by

it when we're talking about myeloma?

Gordon explains about the fact that we can

sometimes appear to be pigeonholing people.

We can label them as frail or not

frail, fit or unfit, and actually what that

might mean for somebody, how they might then

respond to that, whereas actually, I think what

we then discover as we continue our conversation

with him is that actually the concept of

frailty is about so much more than badges.

It's actually about trying to figure out how

to get the best out of a treatment

so that that person responds as best they

can to that treatment and gets fitter.

And he goes into some depth, actually, which

I found illuminating, interesting about the fact that

this is dynamic, meaning that, you know, your

fitness, as we know, changes depending on how

well we are, have you got a cold

or not?

What treatment have we just had?

Have we been on holiday?

Whatever it might be.

And so I think he speaks to the

fact that frailty is more than a badge.

It's about us living our human lives and

being as healthy as we can and how

that interacts with the diagnosis of myeloma.

Indeed.

And part of this is because two thirds

of our patients when diagnosed are over the

age of 70.

So we see lots of people who come

in and even if they didn't have myeloma,

they might walk slowly and may be a

bit hunched because they've had osteoporosis or they

picked up diabetes or high blood pressure and

maybe had a little heart attack or a

stroke.

So all these things, unfortunately, that build up

with time are there.

And then you put the myeloma on top

of it.

And what I think we're all trying to

do now is unpick all of that in

a much more scientific way.

So, you know, back in the day, you

know, Sally, when we were learning medicine, you

know, it was just like, you know, the

great experience of the clinician.

It's like, you know, they can look at

you and say, ah, immediately I get a

sense of what this person is like.

So on the basis of this, in my

experience, we should only give this dose of

a drug or, you know, and we talk

about it when we're talking with Gordon, right?

You know, the end of the bed test,

you know, just to get a sense of

how people are.

But Gordon talks about how we're trying to

move that field forward and make it much

more rigorous and sort of make it more,

you know, data driven.

It's about more than just a thumb in

the air.

This person looks a bit like X, Y

or Z who I saw last week.

So I will do this, that and the

other in the same way or differently.

I mean, I think we spoke about it.

It's making sure that the person and all

that that then means is integrated into the

conversation, into the decision making and therefore into

the outcome.

So there's a lot to digest, isn't there,

Jan?

You know, but what a fantastic conversation it

was.

And actually, you know, we've just come back

from this international meeting in Glasgow.

Timed perfectly because Gordon was chairing that meeting.

So it's fantastic that we put him on

the pod at around the same time to

talk about his particular area of interest.

And he even wore a kilt.

But, you know, sadly, we don't have any

visuals of that.

But yeah, no, it was great to see

him up representing UK Myeloma with all of

our other wonderful colleagues, including yourself, Sally, who

spoke so well at that meeting.

So I hope you really enjoy this chat

with our good friend, colleague and mentor, Professor

Gordon Cook.

Gordon, welcome.

Lovely to have you here.

Thanks for the invitation.

It's truly an honour to be here.

So we thought we would maybe just start

by perhaps talking about frailty.

Frailty means different things to different people.

But us as myeloma doctors, we have been

focusing on frailty really for the last 10

years since we created this myeloma frailty score.

And it's quite artificial in many senses.

And it has lots of limitations, which I

guess we can talk about in due course.

What it's allowed us to do is try

to categorise people into those who are fit

and don't need special considerations.

Those who are frail, who do need special

considerations.

And then those in the middle, which are

intermediate fit.

And as I said, it's an artificial situation,

because let's be honest, human biology is not

binary.

It is a whole spectrum.

And trying to simplify the heterogeneity of ageing

biology into three classes is a tad naive.

If you look at the frailty scores used

in medicine and in general practice, they use

a different type of model, but it categorise

people into four or five different slots.

And that seems a bit more realistic than

trying to put it into three.

But anyway, put it into three, we do.

So that's so interesting, Gordon, isn't it?

And of course, we've worked or I've worked

alongside you to some extent for a little

while in this.

But I think if I was to ask

anybody in the street about frailty, there might

be a perception that younger people aren't frail.

And it's a condition which is defined by

ageing.

And I think the way it's been tackled

in the field of myeloma is much more

complex than that.

And I guess a question to you is,

why is this interesting to you?

Why aren't we just relying on age to

use as a guide in terms of frailty?

What does this actually mean for our patients?

Well, it's interesting because earlier in my career,

I was very much an intensive haematologist.

I ran a donor transplant programme.

I gave acute leukaemia treatment and obviously intensive

myeloma treatment.

But as I've got older and a bit

more wary of my comorbidities, then it's kind

of switched my thinking into the accelerated ageing

process.

And you're right, it's a complicated biological process.

I mean, for example, if you didn't get

any disease in your life, you would assume

you would be immortal, you would live forever.

But there is very good biological mathematical modelling

that shows that even if you never got

a disease, you as an organism, a human

being, would just stop existing after 155 years

of age.

So there is an inherent biological clock in

the background, and that's accelerated when you develop

concomitant disease.

And it always makes me smile when I

see a patient in the myeloma clinic and

they've got diabetes.

That's a comorbidity.

But in the diabetic clinic, their myeloma is

a comorbidity.

So there are these interplays between how different

diseases in an individual play.

For example, you've got a number of different

diseases.

You might say of hypertension, diabetes, heart disease,

well, all the meds that you take for

these individual diseases can have crossover effects into

tolerating other treatments.

So that's the comorbidities, polypharmacy effect on how

you deal with your cancer treatment.

In this case, we're talking about myeloma.

But also we do know is that cancer

can have an effect on an individual.

And rather than being a comorbidity, it can

be a driver of accelerating aging.

And consequential to that, the fact that you've

got a disease like cancer on board is

making you as an organism perform less well.

Now, we see that when we treat the

cancer, then what happens is that the fitness

of that individual, and I use fitness in

inverted commas here, frail, non-frailness, if you

want to put it that way, gets better.

And that signifies the cancer overlay on the

functionality of the individual.

And frailty, therefore, shouldn't be sought as a

badge to pigeonhole patients.

It is actually dynamic.

It does change.

In myeloma, there's some work done that looked

at not the frailty when they were diagnosed,

but their frailty score at a year after

being treated.

And that had a more accurate reflection on

the outcomes for those individuals than what they

were scored at a diagnosis.

Again, highlighting this whole dynamic process going forward.

So, to come back to your question about

age, age is just a number.

We see this time and time again.

Thanks, Gordon.

For our patients coming in through the door,

I think something that a lot of doctors

struggle to work out, and you touched on

it in just what you were just saying,

is we know that myeloma is traditionally a

disease of the elderly, with two thirds of

our patients being over 70 when we meet

them for the first time.

It's really unpicking the frailty that comes with

other diseases they picked up versus what has

happened because of the bone disease, the kidney

dysfunction, the impact of the myeloma.

And families, as well as patients, thinking, are

you going to undertreat me or are you

going to potentially overtreat me?

Because I just can't quite work out what

level of treatment I'm going to be able

to tolerate.

So that is a very important part of

our clinical practice.

Just before I come to that, I would

like to touch on the issue that how

do we actually as clinicians categorise people as

frail?

We, Jam, Sally, we eyeball people, don't we?

We've been around long enough that we can

see somebody who is going to struggle with

treatment.

It doesn't mean they will struggle with the

treatment all the way through, but it means

that you may have to go slow to

get a foot in the door with the

myeloma and then you can build up.

And how do you kind of categorise that

clinician experience?

So a couple of years ago, I was

involved in a global project looking at real

world data.

It was called the Insight Project across Latin

America, North America, Europe and the Far East,

with the exception of Australia, because they had

their own project.

One of the many things we did was

that we got the research nurse and the

team to do the international myeloma frailty score,

blinded to the attitude of the clinician.

And the clinician was to eyeball the patient

and pick which score they were going to

get.

And the concordance there was between 70 and

80 per cent.

However, a lot of it was based on,

because we recorded the experience of the clinician,

whether they were a myeloma doctor in an

institution or whether they were in a community

hospital or district hospitals, as we call them

in the UK.

And that did make a difference.

So clinical experience is important, but it depends

on how much they have in the game.

So coming back full circle to what you

say, before the myeloma IMWG, International Myeloma Working

Group, frailty score came into being, we would

sit in clinic and in our minds, categorise

somebody as at risk of treatment intolerability versus

not at risk.

And that's really what the frailty score does.

Now, the frailty score was designed to be

a prognostic biomarker.

Now, what that means for your listeners who

are not familiar with these terminologies is a

prognostic biomarker is an entity that you measure,

whether it's in the lab, whether it's in

your wee, whether it's a scoring system.

And what it does is it tries to

predict your outcome as an individual.

Yes, we have a staging system, but this

is to try and elevate the staging system

to try and work through into some stratifying

patients.

But what a prognostic biomarker doesn't do is

tell you how you manage treatment.

That would be a predictive biomarker, and that's

a prognostic biomarker that has been proven to

be able to allow you to direct your

clinical treatment.

And as I said, we've had the myeloma

frailty score now for over a decade.

And there's lots of clinical trials and real

world evidence showing that it is a good

prognostic biomarker, but absolutely no evidence about it

being a predictive biomarker.

So this leads me unashamedly into talking about

myeloma 14, the fitness trial that Graeme Jackson,

a very good friend and colleague and my

mentor, although he hates me saying that, him

and I set this up and we closed

it to recruitment in 2004.

We started the trial between first and second

lockdown and Covid, by the way, which was

a tremendous effort with the trials team.

And one thing we never thought we'd get

off the ground.

Anyway, we are now sort of analysing that,

looking to see.

And in that trial, what we did is

we everybody had a frailty score done.

We randomised people into receiving treatment as per

the licensed drug doses, modifying the doses according

to toxicity.

That's the control arm.

And the experimental arm was to see if

we could upfront change the doses based on

somebody's frailty score.

And we are now just in the process

of sending that information off to the journals

to be published, hopefully.

But it wasn't the positive study that we

hoped.

And I think deep down, if I'm honest

with myself, this is probably academic naivety on

my part.

When we designed the frailty score adjusted dosings,

we probably weren't aggressive enough.

So the frail patients didn't get a big

enough dose reduction.

That's the first thing.

Second thing is, is that this was using

a regimen with lenalidomide.

And as you know, we lenalidomide dose modified

people who have got kidney disease irrespective of

their age and physical frailty.

Well, I hadn't really thought about that as

a key player because that then compounds because

40 percent of the people who were in

the trial and were frail had kidney disease.

So even in the standard dosing, they got

a dose reduction.

So it gets quite complicated.

And then the last thing on my self

-critical crusade really, is that the French study

IFM 2017-02 demonstrated the benefits of dropping

dexamethasone, which any of your listeners who are

actually patients themselves or carers will be jumping

up and down at this point because that,

you know, everybody hates dex.

That was actually released, those results released well

after we started our trial.

Now, if we had seen those results, it

was a smaller study.

But if we had seen that, we might

have actually been bolder and dropped the dex.

So these are the confusing factors in there.

We didn't see any difference in the frail

group, but we did see a difference in

the intermediate group.

Now, you could see that's because the frail

group are frail and they're not getting any

better.

Park it.

The intermediate group are in that group because

their myeloma is making them less fit.

So if you treat the myeloma, they get

more fit.

That's possible.

And we are looking into that.

But that's really where the myeloma is.

So while clinically we feel this is the

right thing to do, start slow and build

up.

There isn't the body of evidence because it's

quite a difficult thing to prove, as it

turns out.

I mean, I find that so interesting, Gordon.

And if you don't mind me sort of

celebrating your honesty for even someone as experienced

as you are with this, you know, wealth

of trial experience.

It just goes to show how that learning

is continuous and actually you build on the

research with each trial that's published and that

pushes in the field forward further.

But it is interesting, isn't it?

I remember when that data was, your data

from your study was presented in the States.

And nonetheless, it still caused huge ripples throughout

the audience and actually the international community, because

I think, challenge me if I'm wrong here,

but it did show how important doing these

assessments are.

And actually, I would say over the last

few years, frailty has really been at the

forefront of our minds in clinic, in trials,

in almost everything we do in a way

that it wasn't before.

And I would say that your study really

paved the way for that and changed how

we think about managing people living with myeloma.

I think you're right, because as I said

at the outset, that frailty or physical fitness

to tolerate cancer treatment, to be more accurate,

is much more complicated and complex issue than

a simple scoring system.

And that's not to criticise what Antonio Palumbo

did in 2015.

You're right.

Before that, we never really paid a great

deal of attention to it other than maybe

day to day clinical service delivery.

But now, of course, frailty is very much

on the map and coming full circle to

what was raised right at the very start

is that this AIDS thing, with myeloma, we

do have people who score as frail, who

are in their 50s and in their 40s.

And it's not an AIDS thing as such.

I think the IWG frailty score is quite

a blunt tool.

For example, it cohorts ages.

Now, what that means for your listeners is

that it doesn't look at age as an

individual number.

It looks at age in groupings.

So you are in your 70s, you're in

your 60s, you're in your 80s, da da

da.

And the problem with that is that you

could be a fit person who, by virtue

of your 80th birthday, you are categorised as

frail.

No, you're not.

You've just turned 80.

Now, we, David Cairns and myself, a colleague

in the trial unit in Leeds, we created

a different, I wouldn't say it's a frailty

score, it's more of a vulnerability score.

It did predict outcomes.

It did predict people having serious complications so

they didn't survive the early months.

And this is called the MRP or the

myeloma risk profile.

And in that, we use more objective measurements,

but also we used age as a continuous

variable.

So we kind of got rid of this

in a pigeonhole.

It's different.

I wouldn't say it's better, but I think

what it highlights is the need for us

to kind of start to look into this

with a bit more detail.

And then there's the role of biomarkers.

Do we look in your blood?

Do we look in your weed?

Do we look in your poo?

Do we look at the CT scans, MRI

scans, PET scans?

You had a diagnosis and repurpose them.

These are things that my research group are

looking at.

We take imaging.

We don't need to have another scan.

We can take the scan you've already had

and actually delineate how much fat there is

under your skin versus around your organs, how

much muscle you've got, how much fat's in

the muscle.

And we're currently using the trial data sets

to see if this is a way that

we can actually highlight more vulnerable people compared

to those who will tolerate treatment from the

word go.

One of the things, for example, we do

with this is we measure the calcification of

the aorta, which is, as you know, is

the main artery in the inside the abdominal

cavity.

And that can actually predict better than the

cardiovascular risk scores, people having cardiovascular risk events.

And we've proved that in our real world

data set of 100 patients.

We're now looking to examine that in the

Myeloma Fitness trial, which is over 700 patients.

So repurposing imaging may add to the frailty

score, the clinical frailty scores we have.

The blood and wee and poo side of

things, we're still very much at the start

of that journey.

So what we're looking at is the effects

of ageing on the immune system and how

that accelerates in people who are frail.

We are looking in the pools of the

bugs of what's called the microbiome.

So it's interesting.

It's a little bit different then, isn't it,

from your standard clinical trial of drug X

versus drug Y.

It's this is it sounds like it's much

more focused on the patients.

What is it we can learn about the

patient that then interacts with the treatment rather

than it just being the treatment by itself?

Is that fair to say?

Yeah, that's exactly.

In fact, everybody on the trial, this is

the Myeloma Fitness trial we're talking about, got

the same treatment, the same three drugs, and

therefore it was not about treatment A versus

treatment B.

It was about the delivery of it, trying

to tailor and make it to the patient.

But that's what comes back full circle, because

the frailty score pigeonholes people into three groups,

which is probably too blunt.

And we could probably do that better.

But you're right.

It's about trying to tailor make the treatment

towards the patient and talking about the patient.

It's interesting that the patient's perspective of frailty

is very different to ours.

It's quite a negative phrase.

We know what we mean by, you know,

in the medical sense, what we mean by

frailty.

We are talking about treatment tolerance.

We're talking about complications.

We're talking about adverse events or whatever.

Whereas a patient to be told they're frail,

it's kind of a slap in the face

really, isn't it?

And we'll run a workshop with an allied

health professional colleague of mine in Leeds with

some patients.

And we said, you know, we said to

them, who here thinks they're frail?

No hands went up.

We then explained what the myeloma frailty score

was and we had about 20 percent hands

go up.

We then actually measured their frailty by the

IMWG frailty score and they were all frail.

And then we said to them, right, OK,

this is very subjective.

Give us, you know, if you say frail,

what's the first word comes into your mouth?

And we built a word cloud around it.

And just looking at this word cloud, it's

full of negativity.

So I think we're conveying the wrong message

to patients by saying, oh, you've scored frail.

I think we need to be thinking about

different physiology.

Now, you know, being Scottish, language isn't my

first entity.

But, you know, cleverer people, me, will come

up with proper phrases that actually can describe

and be meaningful and not offend the patient

as we go, because this is a two

sided part of the journey and we need

to take the patients with us on it.

Well, it really makes me think you're actually

saying that.

And for our listeners, I wonder how many

have actually have gone into clinic and been

told, we have determined you are frail and

therefore we are going to treat you differently.

I strongly suspect very few patients have had

that experience, either because the doctors aren't thinking

about it in that sort of objective way

or they don't want to say that to

the patients because it's too risky to do

so, too worried about obsessing people.

And I guess if you agree with that

statement, Gordon, I wonder, do you talk to

patients about it in clinic?

And if you do, how do you explain

to them, I think or we think that

you're frail and that means X, Y or

Yeah, I think you're right, Sally, because there

are people, not all services measure people's frailty

using the frailty score.

The ones that do, I suspect, don't really

that categorisation.

They use it more as an internal way

to consider patients.

But I would like to think that they

will use it in their clinical practice to

modify how they deliver treatment.

How do I do it?

I try to describe rather than badge.

So rather than say to somebody, you're frail,

I'll explain to them what that means in

terms of what I'm going to do, how

I'm going to do it without using the

word frail.

And a lot of that's informed by us

having done that, you know, group session to

look at the, you know, what does a

patient think about getting a badge?

So I will use that to try and

explain why I'm going to do what I'm

going to do or suggest to do about

treatment, dose reductions, getting rid of dex after

the first couple of cycles, this kind of

idea.

And it's about, as you know, it's very

much about getting the patient on board so

that both of you can take that journey

to where it's going to give the best

results.

But yeah, it can be quite tricky.

Thank you, Gordon.

And I think something that we always think

about in Oxford as well is that the

makeup of the other services that we could

use and the expertise that is out there

in medicine that we don't always have access

to that can really help you define the

levels of comorbidities.

You mentioned polypharmacy.

People are on so many drugs.

We've tried to reach out to geriatricians or

elderly care experts, get more input from, you

know, physiotherapists and other really important allied health

professionals.

How do you see the wider MDT as

part of managing that frailty?

And I think a lot of our patients

find that they can't access all those services

in the way that I think could potentially

really dynamically change early frailty quickly and lead

to sort of improving outcomes.

Yeah.

So what I'd like to do, what I

am able to do as per usual in

the NHS is quite a difference.

I mean, what I'd like to have is

a one stop shop, multidisciplinary, you know, sort

of a motif of the patient really.

They're able to look at all aspects, not

just look at the myeloma, but look at

the comorbidities, the polypharmacy, look at the nutrition.

Dietetic input is hugely important in this population

of patients.

They are vulnerable.

They are losing muscle mass quicker than their

age compatriots because of the disease and the

treatment, particularly steroids.

And then there's the role of exercise.

And I'm not talking about, you know, 84

year olds down the gym in Lycra pumping

iron, but I'm talking about actually trying to

sustain the muscle mass they've got, limit, minimise

the loss and therefore having physiotherapy in there

for structured exercise programmes alongside dietetics to have

structured diet programmes that are going to load

protein in particular, I think would be immensely

helpful in that space.

That's the ideal.

The reality is, you know, our physiotherapy colleagues

are pushed, they're understaffed, our dietetic colleagues are

understaffed.

So trying to get input is a bit

piecemeal, but ideally that would be what I

would want to do and basically try and

get a bit more accurate, tailor made assessment

of the individual in front of me and

what they're capable about and how we can

improve that going forward.

I'm a great believer in exercise and what

it can do for, you know, for patients

undergoing serious treatment.

I know you're looking at me, Jan, thinking

you don't believe in exercise looking like that,

but trust me, I do.

But it's particularly important for patients going through

cancer treatments.

In hematology, blood cancers, we don't often have

the windows to intervene that people do with

solid cancers.

So you diagnose your colon cancer and you're

going to have your surgery.

There is a gap in the diagnosis to

the surgery.

You can pre-hab, get your surgery and

then you can rehabilitate.

We don't really have that luxury in blood

cancers.

We made the diagnosis.

We've got to crack on with it.

Therefore, rehab is probably going to be more

important for blood cancer patients than the pre

-hab, with the exception perhaps of autograft patients

where you've got a window there you can

boost them.

But it definitely makes a difference.

We've got the NHR Macmillan Cancer National exercise

guidelines just coming out.

It was a labour of love.

It's taken about a year from inception of

this to actually having the paper written.

And it's just been the finishing touches are

being added to it.

And that will give a framework so that,

you know, individual regions or, you know, sort

of services can look at this and say,

right, there's the evidence, there's what they're recommending.

What can I do to try and bring

some of this into practice?

And that is especially true for diseases where

blood cancer disease, where it's in the older

person like myeloma.

Again, it's about tailor making it because it's

what you start from as a level of

exercise to where you think you want to

go with it.

You know, some people are higher start.

Well, their goals might be different than somebody

who is less good, but definitely a huge

fan of that.

And I think it can improve both your

living with myeloma, but also your survivorship going

forward.

And it sets you up because myeloma is

still a relapse remitting disease.

And the exercise will set you up to

tolerate the next round of treatment and the

round of treatment after that better than if

you don't do it.

Thank you for listening to the Myeloma Minutes

podcast.

Proudly partnering with Myeloma UK.

For more credible myeloma related material and support,

please visit the myeloma website at myeloma.org

.uk. That's myeloma.org.uk or call the

info line on 0800 980 3332, which you

can find in this episode's description.

I very much share your vision, your idea

of what I would describe as a utopia,

your one stop shop.

But I guess what's also going through my

mind is people living with myeloma come from

all walks of life, and that includes the

very richest and the wealthiest and the most

educated in society and the other end of

the spectrum.

And we know there can be that link

between diet and, for example, your social deprivation

or your ability to exercise.

And I think some of your work has

explored that link between, for example, how healthy

you may be or how frail you might

be and your background.

I don't know if you can explore that

with us and what that link might look

like.

Yeah, so we are looking at real world

data from across England that's included everybody who

is in the National Cancer Registry, and we've

got about 45,000 myeloma patients in this.

And that big number allows us to start

delving into what does your postcode mean for

you in terms of your outcomes and both

in terms of social deprivation, but also there

are differences between coastal, rural and urban, and

it's not just as simple as deprivation.

And a lot of it can be down

to your access to treatment.

You know, here in Yorkshire, if you're coastal,

then, you know, you're going to be probably

two hours to my centre and then two

hours home again.

That's a lot of effort compared to somebody

who lives in Leeds, who actually Leeds transport's

not great, so it still could be two

hours on the bus.

But theoretically, it could be 20 minutes and

we're just starting to get a bit of

an understanding of how that affects treatment, treatment

delivery and more importantly, outcomes.

And to come back to the workshop that

we did with the patients, one of the

things that we're now going to do, and

that's the advanced nurse practitioner, Jenna Tate, she

did this work.

She's now moving that project on to start

to look at the underserved populations.

So actually taking these questions about frailty and

treatment tolerance and how we can affect dietetic

advice as well as exercise advice to those

underserved populations.

And we're going to do it in a

slightly different way.

We're basically going to convene community faith leaders,

put the problem to them to see if

they can advise us how best we can

then take the next step, taking it into

the community as such, because we're going to

learn from the people who know if we're

going to reach out properly, because notoriously, patients

from underserved populations do not take part in

clinical trials or clinical research for a whole

variety of reasons, suspicion being one of the

main reasons.

And if we're going to break those barriers

down and rebuild that confidence.

So we're going to start by doing that

fairly soon so that we can try and

see, depending on your community background, there could

be a number of quite significant challenges that

are different to that white middle class or

white upper class or even white working class.

And as again, we've said it time and

time again, haven't we?

One size doesn't fit all.

So we need to try and work out

what's going to be the best thing for

the population that you serve.

Yorkshire is a multicultural population that I think

probably does reflect what the UK sees.

But the reason I mention that is because

a lot of evidence that comes from the

US isn't transferable because, for example, the imaging

that was done looking at the body composition

that I mentioned earlier, there's some of that

work being done in Wisconsin and it looks

good, but it's in white middle class people.

That's not transferable to what we see in

our clinics day in, day out.

So this is why we've got to go

back and ask the question, OK, I found

this out, but what does it mean for

the people of West Yorkshire compared to the

people of North Yorkshire?

Those are two very different counties.

So you're right that we do need to

build up our understanding in modern day Britain

is very multicultural with different pockets and different

problems in those pockets.

It's so interesting.

There's so many layers to this, aren't there?

And it's really intriguing to hear the researchers,

someone such as you, delving into this at

such a what we would call granular, which

kind of means like a really kind of

like a really intense level to gather this

information.

I mean, there's a lot of a lot

of evidence out there, isn't there, relating to

the fact that, for example, a lot of

medicine is adapted to the male body and

the white male body.

And I guess you're speaking to that in

a far greater depth, which is really heartening

for our patients to understand.

You mentioned granularity, that big data set of

45,000 patients, I don't have a huge

amount of granularity, but the size of it

gives me breadth.

But there's another real world registry based in

York and I work with the colleagues there.

It's called HMRN.

And there we've got about four and a

half, five thousand patients where we do have

that granularity.

So using both data sets, we can get

breadth and granularity.

At the same time, and then ask those

questions.

So I just wanted to remind your listeners

about that.

Amazing.

So it's all looking good.

If you live in Yorkshire, I want to

move to Yorkshire.

Jam, let's go to Yorkshire.

I mean, they're not having an Ashes Test

match at Headingley, which I think is absolutely

appalling.

And I'm talking about that more on my

cricket podcast.

You've poked a bear about cricket.

I'm Scottish and I just do not get

cricket.

Anything, any sport where you don't break sweat

is basically sunbathing with utensils.

But anyway, moving on.

You've been playing it the wrong way, Gordon,

I think to be honest.

But we can explore that maybe offline.

It's really been interesting, actually, mainly listening to

you both about frailty, because you're both really

recognised experts in the area.

And actually, I was thinking it's a really

pertinent time to talk about it.

We've just had the second four drug combination

approved for our older patients.

And I don't know what you both think,

but we're seeing in real time the pros

of this.

But, you know, there have been some cons

as well.

And I think it's getting harder for people

to understand how to treat our older patients

now.

We have so much choice.

But with that comes great responsibility.

Sounds like a movie, doesn't it?

But it is difficult.

And I think some people are being over

-treated, some people are being under-treated.

You know, we've seen some bad toxicities.

I mean, practically speaking, Gordon, you know, as

a patient or a carer going into clinic

and, you know, combinations of things are being

discussed with them, how should the family or

the patient approach their doctor about their fitness

level, their frailty, their other diseases into really

making sure that whatever combination they give, it's

right for them?

Because, you know, it can be really difficult

now.

Yeah, it's an interesting question.

And I think I would probably say to

patients and carers who are listening that maybe

the question you want to ask the doctor

is, do you think I'm fit enough to

deal with this treatment?

Not saying the treatment is not going to

work, it's just saying, well, you're looking at

me.

Do you think I'm fit enough to have

this treatment?

The answer is yes, I'll take that advice.

Because as a patient, you don't know, at

least as a new patient.

When you come to your second line, third

line, whatever, you as a patient are getting

wise to, you know, the way we speak

and offer things.

But as a new patient, there's lots of

things swirling around in your head, lots of

emotionality about the diagnosis.

You've got to take in a lot of

facts for a disease you've probably never heard

of and thought at one point probably was

a skin cancer.

You've got to say, well, I think what

I would ask the doctor is, do you

think I'm fit enough?

You mentioned quads and triplets.

And, you know, we as doctors are a

bit prone for grasping the new shiny toy,

aren't we?

And oh, we can give quads and let's

give quads to everybody.

Oh, back off, because that doesn't fit everybody.

And I've, I took part in the trials

where we use quads and, you know, I've

broken people, you know, I've given them toxicities.

We know the main reason behind this and

it's the VRD is uplifted by companies into

their studies is the swab VRD.

And you've got to be Iron Man to

survive swab VRD.

It's not how we give it in real

world, but that's how we gave it in

clinical trials.

And we broke a lot of people with

it.

We still are going to be mindful that

giving four drugs, even with a real world

way of delivering the VRD element, we're still

going to be careful that we don't break

people.

And I always tell patients, this isn't a

sprint, it's a marathon.

And if I nobble you in the first

hundred meters, you ain't making that marathon, are

you?

So got to pace it for people.

And as you both said already, some people

are able to sprint a marathon, whereas other

people just need to go at their own

pace.

And we are learning through what we do

to be able to allow people to go

at their own pace because we want everybody

to finish the marathon.

So Gordon, may I have permission, please, to

use that analogy in clinic going forward from

now, I think that's a brilliant way of

describing what we're trying to achieve in the

field of frailty, the marathon.

I'm definitely a marathon runner, not a sprinter.

And it sums it up, doesn't it?

So, yeah, thank you for that.

I was going to ask you a great

question, isn't it?

And I think even people don't ask that,

just such a simple question.

Do you think I'm fit enough for this?

I think that can give you so much

information because also they will have to, as

we should as clinicians, we're being appropriately challenged

in a very nice way.

And then you give an answer to why

you are.

And as you alluded to already, Gordon, we

know that four drugs can often become three

now after a couple of cycles, because even

with the quads, we're aggressively stopping dexamethasone early

in quite a few of those patients.

And after six months, often you're just back

on to two drugs.

But as you say, it's a marathon.

And, you know, when they're feeling awful from

myeloma, sometimes giving four drugs attentively at the

beginning isn't what is needed.

But you hope that people have the understanding

of the situation to try and tailor it

as best we can.

The reason why I'm laughing is because, and

I certainly hope none of my colleagues will

listen to this episode.

I'm sure they've got better things to do

than to listen to me again.

They do giggle at quite a lot of

my analogies.

I talk about myeloma as being a boxing

match and how the patient's in the ring

with myeloma and we're on the corner.

And you can't kill your opponent.

But what you can do is knock them

on the canvas for as long as it

takes to give a big gap between round

one and round two.

And it kind of speaks to the notion

that it is successive rounds of treatment.

And also it allows me at the start

to introduce the concept that every round of

the boxing match doesn't last the same.

And the opponent gets wise to you and

the rounds get shorter.

And ultimately, for a lot of patients, the

bulk of your opponent wins out.

So, yeah, my colleagues, particularly my nurse specialist

colleagues, giggle when I start to go into

one of my analogies.

But to come back to the toxicities, so

I've been there as an individual, sat in

the chair, being faced with a doctor telling

you you've got cancer and this is how

we're going to treat it.

And I don't think I'm not the brightest

person on the planet, but I don't think

I'm that stupid.

But I struggle to think of questions that

were appropriate because your head's just once somebody

tells you you've got cancer, everything else is

background noise.

You can't focus on anything else.

And that's why, again, I would recommend to

any of your listeners who are patients or

carers that don't go to the appointments on

your own.

Go with somebody, family members, friends.

Two pairs of ears are always better than

one, particularly since that person with you, and

in my case, my wife, can be a

bit more subjective, a bit more objective.

And, you know, you as an individual, as

you sit there and you're being totally subjective

and you're blinkered and you can't spot the

facts that you need to spot.

And therefore asking somebody about how well does,

how well am I going to get on

with this treatment?

I didn't ask that.

And I didn't ask what the side effects

were.

They gave it to me and I learned

the hard way.

So, yeah, it is difficult to put that

onus on patients.

The onus should be on us as doctors

to be mindful of that and try and

work it into the conversations in a way

that can bring people on board.

And a lot of the time that's just

repetition.

I know I said this to you last

week, but I'm going to say it again

because I guarantee you, you only picked up

40% of what I said last week.

So, Gordon, for our last couple of questions,

two things to pose to you, which were

as follows, but I think you've already answered

them, actually.

But the first was, if you had one

message for patients or carers who are anxious

about the frail label, what would that message

be?

And similarly, for clinicians working within this field

and looking after myeloma patients, what would you

say is the one thing that we as

doctors need to understand about frailty and how

we manage our patients?

So from a patient point of view, what

you want to know is, is are they

telling you you're frail at this moment in

time and it's not going to get better

or is it something that's going to be

a transient thing?

Remember, frailty is dynamic because as you present

with your disease, you've got all your myeloma

and the effects it's having making you knee

make, kidney problems, whatever, alongside all your other

illnesses.

And therefore, we can't, nobody can determine at

the first time we meet you whether you're

actually going to be frail all the way

through your journey.

And the second thing is, is that going

slow and growing the treatment to see how

you tolerate it makes all the difference.

I tried to prove that with myeloma 14

trial and for the complexities we mentioned earlier,

it was a hard ask, but we as

clinicians inherently believe that that's the right thing

to do.

If we start to chip away at the

myeloma, we'll make you physically fitter, inverted commas,

and therefore I can up the treatment and

up the treatment.

And it comes back to that it isn't

a sprint, it's a marathon.

So yes, we all want to get the

myeloma into as low as possible, into MRD

or whatever.

But at the end of the day, it

is about that longevity and we want to

get the treatment in and build it up

so you tolerate it.

Amazing.

Lots for us to think about, lots for

us to take away.

Jam, I don't know if you've got any

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