The Myeloma Minutes

This episode explores the realities of living with multiple myeloma, from treatment and managing symptoms to maintaining quality of life and finding confidence beyond the diagnosis. 

📌Key Takeaways:
  •  Myeloma changes life - but it doesn’t have to define it. 
  •  Small changes can make a big difference to wellbeing. 
  •  You can still plan, adapt and look forward.

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.

Hi, Sally, how you doing?

It's good to be recording another podcast after

a little break over the summer.

Yeah, it's good to be back.

And I think we've had some time, haven't

we, Jam, to think about, you know, when

we're seeing patients in clinic, which pods we

haven't done.

And I think today's podcast might cover one

of those gaps, actually, which is an area

which is relevant to a lot of our

patients, actually, as they live with myeloma, but

particularly some people when they're, they're first seeing

us.

Yeah, absolutely.

So today, we're going to talk about plasmacytoma.

Now, I think, you know, when you're diagnosed

with any cancer, I mean, actually, to be

honest, when you go and see any doctor,

right, the terms and the words can get

very confusing.

So this term, plasmacytoma, what does it, what

does it mean, Sally?

And how does it relate to myeloma?

Yeah, thanks, Jam.

I mean, as many of our listeners may

be so familiar with these terms now, but

we're going to work on the premise that

there are some non-experts who are also

listening as well.

And so some of you may recall from

our previous episodes that the cells that go

wrong in myeloma are called plasma cells.

And so a plasmacytoma is a fancy medical

way of referring to a lump of these

cells all stuck together within the body, often

from or arising from the bone in the

in the strictest sense of the word.

So a plasmacytoma is simply a mass of

these abnormal plasma cells, which relate to myeloma

as well.

Yeah, so it's, I mean, for whatever more

technical term, it's a it's a lump of

myeloma.

So a lot of people, when we talk

about myeloma, they they can understand the concept

of, you know, breast cancer or colon cancer

as a group or an area or even

like, you know, a small ball of cancer

cells.

So sometimes when we're diagnosing myeloma, and of

course, talking to people for the first time,

we explain that this cancer is sort of

widely spread in your bone marrow.

And that's, that's normal for myeloma.

But it can behave in slightly different ways.

And you can get discrete areas or lumps

of myeloma without that widespread bone marrow involvement.

Definitely, you've come up with a great point

there, Jam.

And this is where it does warrant explanation.

People can have myeloma with plasmacytomas, without plasmacytomas,

they can develop plasmacytomas, they can have a

variant of a plasmacytoma, or they can have

a plasmacytoma in isolation.

And that is why it's so confusing.

There you go.

That solved it.

I would say let's go through all those

one at a time.

But I can't even remember the first one

that you said.

I think a part of the complexity is

because, and this I think does, you know,

this does really apply to quite a lot

of blood cancers, right?

You know, blood cells and the white blood

cells that drive a lot of these hematology

cancers, white cells are supposed to get everywhere

in your body, because they're there, trying to,

you know, kill the bad guys, and, you

know, being part of immune system surveillance.

So they have the ability to get all

over the place.

The cells in these plasmacytomas, or the cells

that we see widespread in the bone marrow

and myeloma, the cells are the same.

They're plasma cells, these antibody producing cells, malignant

cells.

But sometimes, you know, to use an example,

we we might see someone who noticed a

lump growing somewhere.

And it could be even, you know, in

and around the neck, or it could have

been discovered when a surgeon was doing a

colonoscopy, because they had some symptoms in their

bowel, and a biopsy has been done.

And it shows, oh, these are these are

plasma cells.

So we've actually got a diagnosis of a

plasma cell cancer, okay, which, which broadly, we've

been talking about is myeloma, but from from

from a lump of, of plasma cells, a

plasmacytoma.

Yeah, definitely.

And I think you made a great point,

Jan, in that patients can present and say,

actually, I've noticed something changing, I've noticed something

growing.

Now, often that's from a from a bone,

particularly when people have relapsed and been living

with myeloma for a while, they might say,

I'm really worried, my disease has come back,

because I've got some pain, but also I've

noticed this lump.

And really importantly, the plasmacytomas when they occur

aren't necessarily painful, it may be a painless

lump.

And that's where, you know, we as a

clinical team and the patients communicating with us

what's going on is so important, because just

because it doesn't hurt doesn't mean it's not

important.

No, indeed.

So just to go through a little bit

of the way in which we define these

conditions.

So, Sally, there is a condition that is

not multiple myeloma called solitary plasmacytoma.

Okay.

Now, that is a disorder where essentially, the

first time we get to meet people is

that they have a diagnosis of malignant plasma

cells.

So this is, you know, this is a

type of tumour.

But those tumour cells are broadly in one

location only.

And they either have absolutely nothing in their

bone marrow, because these people, we always look

in the bone marrow, because it could just

be that this is actually part of multiple

myeloma.

But if you find nothing in the bone

marrow, then we call that a solitary plasmacytoma.

But in some situations, you may find a

very small number of plasma cells in the

bone marrow.

And we still call this a solitary plasmacytoma,

with what we say minimal marrow involvement.

So it is confusing, even just as I

articulate that, that's quite hard to understand, isn't

it?

Do you know what, Jam?

I mean, I think we were having a

chat before we started recording.

It's like, oh, well, hopefully this, this episode

should be pretty easy.

But it's like everything in myeloma, you delve

into it, you're like, oh, my goodness, it

is actually quite complicated.

But you're quite right.

The difference between myeloma and plasmacytoma, isolated plasmacytomosis,

in myeloma, you've got these abnormal cells in

your bone marrow, above 10% of the

cells in the bone marrow are myeloma cells.

When you've got a solitary plasmacytoma, you've got

one lump.

And then when you look in the bone

marrow, you don't have that many plasma cells,

it's less than 10%.

And sometimes there's no abnormal plasma cells.

Occasionally, there's a few.

And that's really how you tell the difference.

It's about counting the cells in the bone

marrow, but also looking through scans to check

that that lump actually is only one lump.

There's not an extra lump somewhere else, because

that also changes things, doesn't it?

Yeah.

So scans are really important.

PET scans, or whole-body MRI.

Generally, for plasmacytomas, PET CT is very good.

If you have more than one, and your

bone marrow is clear, then that is also

that can happen sometimes.

And that's called, you know, multiple plasmacytomas.

But that's treated exactly as you would multiple

myeloma.

Because essentially, the way that the cancer has

developed, it's the plasma cells are not multiplying

in the bone marrow.

But you know, various lumps are sort of,

you know, growing in different parts of the

body.

Yeah, definitely.

So just to recap on that, then you

sort of got the ends of the spectrum,

haven't you?

You've got myeloma, where you've got lots of

abnormal cells in your bone marrow, and you

may or may not have these lumps, that

needs treatment with what we would describe as

chemotherapy.

Then you've got somewhere in the middle, a

person who might have a few lumps in

their body, and they may or may not

have abnormal cells in the bone marrow.

And that still needs chemotherapy.

But then there's sort of the other end

of the spectrum is just one lump, not

much in the bone marrow at all.

And that requires different treatment, because that's what

we call a solitary plasma cytoma.

Yeah, and then the right at the end,

then you have a solitary lump plasma cytoma

with nothing in the bone marrow.

So it's all it's all a spectrum.

And you know, throughout both our clinics, Sally,

and clinics throughout the country, solitary plasma cytoma

is diagnosed quite a lot.

And it has a discrete way of being

treated.

Now, it's important to understand where these lumps

can be because, you know, I mentioned a

couple of scenarios, you know, you talked about

these areas arising from bone.

And that is the most common thing.

These plasma cytomas arise from bone, and we

call them solitary plasma cytoma of bone.

But actually, you can get them in any

organ, you can get them in the bowel,

you can get them in sort of other

soft tissues, muscle, the head and neck.

They, you know, if you look through the

literature, you can find sort of case reports

of solitary plasma cytomas in lots of different

places.

And sometimes the first we will know about

them is our surgical colleagues or other colleagues

who've done diagnostic tests.

Because sometimes the symptoms may be just because

I've noticed a lump, or it depending on

the organ they're in, there may be symptoms,

you know, attributable to to how the lump

is, you know, affecting that organ.

I don't like keep saying the word lump

continually.

But it feels like better than mass or

some other kind of kind of description.

So, so yeah, so they can arise from

anywhere, basically.

Don't be shy about lumps, Jan.

It totally describes what they are, doesn't it

really?

And they can pop up anywhere.

And I guess the key thing is, is

with any lump, just to lean into that

word a bit more.

First thing you need to do if you've

spotted it as a doctor or GP or

whoever, is actually pop a needle into it

to check that you know what's it what's

it's made of.

And often actually, particularly with plasma cytomas, which

aren't coming out of the bone, the it

can be a surprise.

Because let's say, for example, you've got a

plasma cytoma in your breast tissue, of course,

a lump in the breast, one automatically associates

that, for example, with breast cancer, and suddenly

you have a biopsy done, you're like, oh,

no, it's this weird thing called a plasma

cytoma.

It's like, oh, my goodness, I wasn't expecting

that.

And that often means something completely different from

what you're expecting.

So it can come as quite a surprise,

actually, this diagnosis, people might prepare themselves for

another problem.

And actually, lo and behold, it's not it's

a weird blood disorder.

Yeah, so that's not.

So that's not breast cancer, Sally.

It's hard, right?

So this is a lump in the breast,

the tumour, but it's not breast cancer, because

in breast cancer, the cancer is from the

cells that are supposed to be in the

breast anyway.

These are just abnormal malignant plasma cells that

have traveled to the breast.

And that's where the cancer has decided to

make its home.

And I mean, that's a good place to

start, Sally, because actually, for a lot of

these plasma cytomas that are not associated with

the skeleton, they can be surgically excised.

And in, you know, a number of situations,

often, they can be cured with surgery.

And it's not unusual for those plasma cytomas

that are not associated with the bone, for

people's bone marrows to actually be clear.

Yeah, definitely, they can be clear.

And by that, I mean, nothing in them.

And you speak about them having been excised.

And sometimes that's actually by accident.

So you see example of continue with the

example of breast cancer, you know, you go

for your screening, or you feel a lump,

a lump is found, and you're listed for

surgery, and they take out, take out the

mass, they take out the lump, and it's

only then when that mass is sent off

to the lab for analysis, people say, hang

on a minute, it's something totally different.

And actually, then at the point of the

person receiving the diagnosis of plasma cytoma, it's

all been removed.

And so actually, sometimes the surgery almost happens

by accident.

You know, we don't necessarily always need to

treat plasma cytomas with surgery.

In fact, in most cases, we would perhaps

choose not to, but sometimes it happens anyway.

And when it has happened, and it's all

been taken out, that might be enough.

Absolutely.

For the ones that arise from bone, it's

not unusual for people to present with pain,

you know, a topic that we've covered a

lot on the pod.

But, you know, to, you know, to sort

of cite a recent example from my clinic,

you know, a man in his 80s, just

increasingly struggling with some back pain and tingling

down his legs.

He had an MRI done.

And just around the middle of his spine,

there was a sort of a big tumor

coming out around his what we call T12,

which is the sort of the bottom of

the thoracic spine.

It was biopsied.

So often in that situation, you know, it's

not feasible or appropriate, you can't remove the

whole tumor.

So you take a sample and was found

to be a plasma cell tumor, a plasma

cytoma, with a scan showing that there was

there was nothing else anywhere.

And in his bone marrow, there was just

a very small number of plasma cells, like

about 2%.

So not no myeloma in the bone marrow,

but you can see a couple of abnormal

plasma cells.

So pain was his main issue.

And this was only the only abnormal sort

of tumor.

So you can't excise that.

So in this sort of setting, Sally, what

is the what is that sort of the

recommended and sort of standard of treatment in

this sort of setting?

Yeah, so these isolated plasma cytomas from the

bone, the standard treatment is radiotherapy.

Or we and you, our listeners may have

heard this referred to as radical radiotherapy, which

just adds another layer of complexity.

But to dive into radiotherapy a little bit,

it's where, you know, radiotherapy waves are targeted

at a tumor where they know the tumor

is sensitive to that.

It's almost like targeting with heat or with

light.

And that causes the tumor or the lump

of abnormal cells to melt away.

And there are different doses you can give.

And by doses, you mean, you come back

different for different periods of time.

And the strength of the radiotherapy or the

heat to use that analogy is different.

And actually, the reason why the doses might

be different as in solitary plasma cytoma, you

want to be sure if you can, it's

going to go away for good.

And so you give larger doses over a

longer period of time.

And that's why it's called radical radiotherapy.

It's meaning you're trying to do something radical

and fix that cancer for good.

So yeah, radical means broadly higher doses.

Now, we've touched on radiotherapy in previous podcasts,

and it can be very effective for pain.

But when it's given for pain, it's often

only given for a couple of days.

Whereas in this sort of setting, Sally, people

might have, you know, three weeks of treatment,

sometimes a bit longer.

And it's a slightly, you know, well, it's

a very different approach to chemotherapy, you know,

they mark out on the body where they

have to sort of, you know, you know,

zap the tumor, as it were, and then

you go into a machine every day, often

only for a couple of minutes.

And it's what we call fractionated.

So it's given, they found out over many

years, it works better if you give a

little bit every day, and it builds up.

And these plasma cytomas are very sensitive to

radiotherapy.

People complete the radiotherapy.

And number one, if people have pain, it

helps with that immediately.

Number two, the tumors hopefully shrink away totally.

And repeating a scan three months after the

end of treatment will tell us how well

people have done.

So my patient that I described, he has

had the radiotherapy, pain improved quite quickly, actually.

But it takes time for the full impact

of radiotherapy to happen.

And that's why you wait a few months

to see how well it's worked.

And actually, depending on where the plasma cytoma

is, you know, if they are in different

organs, we try to give radiotherapy if that

is appropriate.

Now, there may be reasons in certain organs

where you have to give certain doses or

a smaller dose because of the sort of

the impact of side effects.

And, you know, Sal, both you and me

are not radiotherapy experts.

And, you know, at some point in the

next year, we're hoping to get a radiotherapy

expert just to talk about it a little

bit more.

So people understand, you know, in the context

of these sorts of disorders, myeloma related disorders,

why radiotherapy is used.

Yeah, definitely.

I mean, it's a whole specialist area in

and of itself, isn't it, Jam?

And our colleagues who tend to be oncologists

who are trained in radiotherapy are real experts

in their fields, not least because actually different

lumps require different doses of radiotherapy.

But also, it depends on where the lump

might be in the body, how, as you

said, really, how much you can give.

And that's partly because, to go back to

my analogy, it's almost like burning the tissues

with the radio waves.

And there are some areas in the body

where you really might not want that to

be a problem for the normal tissue sat

next to the lump.

And so actually, there's other factors to take

into account.

Or is the lump, for example, if it's

in the tummy, is it moving around a

bit?

So it's a really complicated area.

You know, if you've got questions, of course,

reach out to us about them, but hold

them as well.

Because like you say, Jam, I think us

getting one of our colleagues on will really

help shed light on that field.

Indeed.

So Sally, just to use the example of

my patient, he actually asked me very, very

pertinent questions.

But why would you not give me some

chemotherapy as well?

You know, I've read a little bit about

myeloma.

I know that chemotherapy is very effective in

this setting.

Why are people just treated with radiotherapy in

this setting?

Yeah.

So I think if you imagine this, almost

like you've got one lump isolated to one

place, and you can treat that, and you

can get rid of that for good in

the majority of cases, it won't crop up

there again.

And then everywhere else in your body, there's

very little going on, then actually, you've almost

converted that person from having a potential condition

like myeloma, to having not much of a

condition at all, they may have this more

benign condition that they're left with after the

treatment, like NGUS, monoclonal gammopathy of unknown significance.

And so actually, it may be for a

significant number of people, you can monitor them,

and we would want to monitor them with

scans and with blood tests, but nothing will

change.

And so therefore, why give them loads of

chemo, when actually, they may be well for

many, many, many years thereafter, and in fact,

some people never need any more treatment than

that for the rest of their lives.

Thank you, Sally.

The rate of progression to myeloma is an

important thing that we always go through with

our patients who are going through radiotherapy, and

the location of the plasma cytoma, and whether

they have any of those plasma cells in

their marrow, they are two key determinants of

whether people get myeloma.

So I think it's really important to say

that for people with a plasma cytoma that

comes out of bone, they have a much

higher risk of progression to myeloma.

And broadly, maybe 40 to 50% of

people might progress within two years.

Yeah, I think it very much depends, doesn't

it, from what we understand on how many

abnormal cells there are, as you said, Jan,

in the bone marrow.

If we use that 10% cutoff I

spoke about before, you've got 8%.

That's quite a lot.

Whereas if you've got, I don't know, one

in every 300 cells might be a myeloma

cell, that looks quite different.

And if you've got none at all, then

your risk really is quite low.

So it's, again, it's a spectrum, and it

sort of reflects how dynamic the conditions can

be.

And actually, for a lot of the plasma

cytomas that are not associated with bone, their

risk of progression to myeloma is much, much

lower.

And it's more normal for them to have,

you know, clear bone marrows without any of

the plasma cells.

Yeah, definitely much, much more likely.

Although, just to add another layer of complexity

to our conversation, it is different if you're

dealing with people who have developed lumps of

myeloma, be that plasma cytoma or outside the

body, when they have already had treatment for

myeloma.

And in that case, new lumps growing outside

of the bone marrow, actually, you know, you

need to keep an eye on that.

That can mean that you might need slightly

different treatment.

So yes, if this is at the very

beginning, it's good news if it's outside the

bone marrow, or outside the bones.

If you've been living with myeloma, and you've

developed a lump outside the bones, that's slightly

different, and it has a different prognosis.

It's an extremely important distinction to make.

Your doctors may use this term extra medullary,

which I think we should just define.

That means not associated with bone, essentially.

So as you very rightly say, Sally, if

you have myeloma, and you have extra medullary

disease, so I don't know, for example, disease

in your liver, as an example, at diagnosis,

that's a bad thing, unfortunately.

And at different stages in the journey, if

there's extra medullary disease, that's also a bad

thing.

At diagnosis, if there is a solitary extra

medullary plasma cytoma, then that's often highly treatable,

and not a bad prognostic thing.

That can be difficult to understand.

But actually, you know, looking at these things

over many decades, that's the way it looks

from seeing how people have got on with,

you know, the various treatments that they've had

in those contexts that I've just mentioned.

Yeah, and I think that goes back to

that really confusing thing I said earlier about

how diverse this is, is that looking at

these lumps in isolation does not tell you

the whole story, you need to look at

what else is going on in the body.

And that changes the story, it changes what

the doctor may say to the patient or

their family in that clinic.

Because, you know, you then fulfil a different

kind of, a different path almost, you've got

a different path ahead of you in terms

of what to expect, and how your condition

might behave.

It is a complex area, it's somewhat complicated

as well, just to throw in a final

curve ball, I hope, by the fact that

people living with myeloma, at diagnosis may or

may not have bone problems, may or may

not have extra medullary disease, but they may

develop it when they relapse, because we know

the myeloma disease changes.

And as your myeloma comes back, you might

go on to develop a lump in the

bones, a plasma cytoma or extra medullary disease.

So it's very dynamic as well.

And so it's a complex area.

And that's where the blood tests are important,

the bone marrow is important, the imaging is

important, because that gives you the whole picture

about what's going on at that point in

time with that person in front of you.

Indeed, it does.

I think what's really helped us treat plasma

cytomas better over the last few years is

a real improvement in the type of imaging

we can do and how quickly we can

get whole body scans, especially PET and MRI,

because they really do give you excellent information

on you know, where they are.

And you know, looking at it sequentially, how

quickly they're growing.

And with PET CT, you know, one of

our first episodes was with a, you know,

Dr. Buver, a radiology expert, you know, PETs

are very helpful, because they tell you about,

you know, whether the tumor is active, the

plasma cytoma is active, active, you know, myeloma

or plasma cytoma cells, they take up this

radioactive sugar.

So you know, you give the radiotherapy, and

then you wait three months.

And normally, if it's worked well, there's there's

no abnormal cells there anymore.

So that radioactive sugar is not being taken

up.

And it's really important to wait because if

you, you know, radiation causes inflammation, okay.

And I think what's important to say, if

you're going through radiotherapy, it's very common to

give some steroids at the same time, you

know, we can't get away from it, can

we?

You know, it's like in almost every episode,

we have to mention steroids.

It comes back to steroids.

But actually, you know, dexamethasone is a very

important tool for our radiotherapy colleagues.

Because, you know, the act of radiation killing

cancer cell causes inflammation.

And that can actually make things a little

bit worse initially, as well.

So you may get swelling of the actual

tumor.

And if, if that plasma cytoma is, I

don't know, pressing on nerves, for example, it's

like, well, why am I getting worse?

It's not because the treatment's not working.

It's because you're getting swelling from sort of

tumor kill.

And that's where our friend dex is important.

And the other thing to say about plasma

cytoma, solitary plasma cytoma is that it's very

common to have the abnormal proteins, right?

These power proteins and light chains.

And, you know, when you irradiate the plasma

cytoma, the plasma cells die, and you see

these proteins going away as well.

So there are other clues that the, that

the treatment is, is working.

You know, even if you can only stop

myeloma for, you know, two to three years

for a bone plasma cytoma with radiotherapy, it's

absolutely worth it, right?

Because, you know, it's relatively non toxic, it's

a month of treatment.

And, you know, the field is moving so

quickly, you know, when that person needs for,

you know, what we call, you know, combination

treatment in the future, because myeloma has developed.

Hopefully, you're able to give more effective treatment.

And you can give it in good time,

because you know what you're looking for, right?

The monitoring piece afterwards is very important.

Yeah, I mean, I think you speak to

a really important point there, Jamin, so much

that some people with plasma cytoma do get

myeloma.

But if you treat the plasma cytoma there

and then, and control it and get rid

of it, and then keep a close eye

on them, you've pushed back that treatment date

to actually developing full blown myeloma.

And in that time, there's, I mean, God,

based on what's happened over the last few

years, significant improvements.

So for some people, radiotherapy gets rid of

the plasma cytoma and the problem for good.

For other people, it just sort of stalls

it for a fixed period of time, which

is quite hard to predict.

When you when you speak to doctors, they

might have a go at trying to guess

when when things might return, but it's so

different in everybody.

It's hugely variable, isn't it?

Indeed, it is.

And I think if you are in the

process of going through your sort of investigations

and treatment for solitary plasma cytoma, I think

the things to really ask your doctor, you

know, and just sort of a checklist for

you, right?

Make sure you've had some proper whole body

imaging.

Okay, it's really, really important.

I think before we had really good scans,

I think Sally, a lot of people were

incorrectly treated a solitary plasma cytoma.

But with a more sensitive test, they would

have been treated for myeloma.

And actually, unfortunately, a lot of people came

to harm.

Now, it's no one's fault.

It's just that our diagnostic tests were not

as good.

But they really are good now and make

sure that that scan has been properly reviewed.

Do I have a solitary tumour?

Or are there more?

Also, have I had a bone marrow and

not just a bone marrow?

Have I had a bone marrow with where

possible the most sensitive tests that you have?

Because you would want to know I would

want to know, even if you can detect

a few abnormal sort of plasma cells, myeloma

cells in the bone marrow, it does change

your risk of progressing to myeloma.

And I think that's really important for people

to know.

And then assuming you're having radiotherapy, you know,

speak to the radiotherapy doctor, of course, and

just ask, you know, what is the dose

I'm having?

And why?

And depending on, of course, where the plasma

cytoma is, you know, what side effects should

I expect?

Am I going to get dexamethasone with this?

And then make sure if you've going through

radiotherapy, when am I going to have my

follow up scan, make sure the scan isn't

too early should be about three months after

the end of radiotherapy.

Yeah, what a brilliant summary, Jan.

Thanks for going through that.

And I think there's some incredibly useful pointers.

So I think maybe for the last few

minutes, can I fire a few questions at

you, just to see if we can kind

of just to recap really on what we've

spoken about, because it has actually been quite

complicated, hasn't it?

So someone comes to your clinic, and they've

got a mass or a lump coming out

of their arm, you organise a PET scan,

you organise a bone marrow, the PET is

only showing problems in the arm, and the

bone marrow doesn't show anything at all, what

are you going to do?

So we are going to take a biopsy

of that area.

And assuming that it shows it's a plasma

cytoma, a solitary plasma cytoma, that is a

solitary plasma cytoma of bone, and that would

be treated with what we call, as you

mentioned earlier, radical radiotherapy.

So I'd refer to one of our friendly

clinical oncologists, we have two very lovely ones

in Oxford.

And I would also be quite, you know,

positive to the patient about the side effects

in that site, you know, you mentioned the

arm, there are no, you know, there are

vital organs everywhere, but you know, you're not

close to your your bowel or your, you

know, you're not going to get problems from

swallowing, because of side effects related to radiotherapy,

you can irradiate that area really well, I

think with minimal side effects.

And then I'd make sure, of course, I

checked all the myeloma proteins and all the

other normal bloods.

And go from there.

Great.

So I'm going to move that lump to

your tonsils.

It's not in your arm anymore.

It's dangling down from one of your tonsils.

You're struggling to speak, your voice has gone

a bit hoarse.

Next time, I've got to get the questions.

But it's really, it's it's a really, really

important point.

And just to, you know, briefly get, get

back to just just a couple of extra

things on the last one, even there's a

bone plasma cytoma, there's still a still a

high risk of progression to myeloma.

Even though there's nothing inside the no abnormal

cells within the bone marrow biopsy.

And you'd monitor that patient moving forwards, you

know, relatively carefully.

Thank you.

So the tonsils, so difficult area.

So they probably come from one of our

friendly ENT consultants.

So we would not normally see these patients

initially, right, they'd go to an ENT surgeon

problem swallowing.

And they, they see a lump or a

tonsil and maybe they excise it.

And it's a plasma cytoma.

So I think this is where we, you

know, need to work very closely with our

clinical oncology colleagues.

We of course, do the whole body scan

again, check that the area is solitary.

Check a bone marrow.

Is the bone marrow clear?

I'm guessing maybe it is.

So it's a solitary plasma cytoma in the

throat.

Now, if you give radical radiotherapy to a

throat, you know, people may not be able

to swallow for, I don't know, weeks.

I mean, it can be very bad, can't

it?

Yeah, it can be really unpleasant.

Yeah.

So this is where you need to sit

down with your surgeon and your radiotherapist and

your haematologist because possibly the surgeon has excised

the whole thing.

So maybe the whole lumps gone accidentally, because

again, you know, biopsying in that area is,

I think, more difficult than taking the whole

thing out.

So actually, you've taken it out, you do

a PET, there's nothing there.

Hopefully you've cured your patient.

Yeah, nothing there on the PET, nothing there

in the bone marrow.

That is good news, isn't it?

Okay.

So can I keep on going with the

quiz?

Or do you want to flip it around

and quiz me instead?

Oh, let me let me ask you one,

Sally.

So yeah, I've gone, you keep asking me,

you've got the question.

Okay, so We're a bit rusty after some

holidays.

So you've got, we're going to go back

to our person with a lump in the

arm, and you've done a bone marrow.

And actually this time, there's only one lump

in the arm.

And that is PET positive, nothing else on

the PET.

But the bone marrow shows that 20%

of the cells there are plasma cells, they're

myeloma cells.

So it's above the 10% cut off,

not loads, but 20% with a lump

on the arm.

What are you going to do?

Yeah, okay.

So we, it looks like we're dealing with

myeloma.

So by the definition of myeloma, this is

myeloma.

And, you know, going back to our earlier

episodes, I'd want to check that the kidneys

are okay.

And the blood count was okay.

Are they both all right?

Yeah, they're okay.

Yep.

So actually, but you have a sort of

a plasma cytome, so an area of myeloma,

a lump, but you've actually got myeloma in

the bone marrow.

So you treat that as myeloma.

So this patient would need combination chemotherapy.

And if there's a lot of pain associated

with that, with that area in the arm,

sometimes just starting chemo would be enough to

improve that pain or even steroids.

But if it's not, we would again offer

some radiotherapy, but not the radical radiotherapy that

we've been talking about, we would just offer

a lower dose of radiotherapy to help with

the pain, but they would be treated as

myeloma, basically.

Thank you.

And then my last one, and then I'll

desist.

It's not supposed to be an MDT, you're

making me do lots of work today.

This is excellent.

This is a good test.

Hopefully, you know, well, I think, you know,

hopefully our listeners, you know, if they fit

into the various of these categories, I think

they will find it really helpful.

So you still got your lump in your

arm.

But this time, there's also a lump on

the leg on imaging on a PET scan,

but nothing in the bone marrow.

What are you going to do?

Yeah, so more than one abnormal area, you

biopsied the arm, and it shows is shown

to be a plasma cytoma.

So you need to have a really good

radiologist.

Okay.

And I think you need to really look

at, you know, really speak to radiologists and

say, does this look like the same cancer?

Because of course, unfortunately, you can be diagnosed

with more than one cancer at one time.

So the first thing you need to think

is like, could this be something same?

Or could it be different?

If the radiologist said, look, this is the

same process, it looks the same, then that

is multiple plasma cytomas.

And you treat that as myeloma.

Yeah.

If the radiologist says, you know, it doesn't

take up quite as much abnormal sugar, or

it doesn't look quite right, I would try

and biopsy that lesion in the leg, because

we've all been surprised, right, in medicine.

And actually, sometimes you find things that you're

not expecting and maybe that area in the

leg is a benign something.

And then you're back to a solitary plasma

cytoma.

And hopefully, you know, controlling the condition for

many years, which is radiotherapy.

Brilliant, Jan.

10 out of 10.

You passed.

You can now go to clinic.

You are above board.

But thank you, Sally, for those scenarios, because

these are scenarios that like we deal with

in clinic day to day.

And almost like we just did a mini

sort of MDT there almost without, you know,

without the, you know, our radiologists and histology

colleagues, but these are the kind of things

that we we discuss.

And I hope that people listening, feel confident

that, you know, certainly up and down the

UK, we can really comment on UK practice,

you know, people discuss these things, you know,

together and in a collegiate way to make

sure that people are getting the right option.

Yeah, definitely.

You know, nothing is straightforward in myeloma or

indeed in medicine.

And for example, if you were to have

somebody who come into the waiting room say,

Oh God, I had this thing called a

plasma cytoma.

My doctor just told me the person next

to him was to say, No, I've had

that as well.

It doesn't necessarily mean you're going to have

the same treatment, usually variable.

So yeah, I hope this has been useful

for our listeners and for their relatives and

loved ones.

Please get in touch with questions.

And thank you for letting us jam and

I try and untangle this for you.

Yeah, no, really great episode, Sally and exciting

times coming in the next few weeks in

myeloma.

It's the International Myeloma Society meeting.

It's held once a year.

All the myeloma bods in the world will

be in Scotland, in Glasgow.

Sorry, that wasn't a Scottish accent.

It might have been a Scottish accent.

But this is the first time I think

for decades that this meeting has been in

the UK.

And so we're all going to Glasgow in

a couple of weeks.

And hopefully we're going to be doing a

podcast from up there, which will be very

exciting.

And then so we're going to update people

in October with some of the key highlights,

because, you know, just having had a skim

through there's, you know, there's some very cool

stuff being presented.

Yeah, it looks like a great programme should

hopefully be some fun, but a lot of

work.

And yeah, but do look out for that

podcast, be lots of patient voices on it

and some, some experts, international experts that you

may not have heard before.

So really looking forward to that jam should

be fun.

It should be brilliant.

Thanks very much, Sally.

And I'll see you at the next pod.

All right.

Take care.

Bye.