August 13, 2025 • 54 mins
Welcome to The Myeloma Minutes. We've now moved to a fortnightly release schedule, so you can now hear us every-other Thursday.
Specialist nurse Alex Scott walks patients and carers through every step of the autologous stem cell transplant process, from preparation to recovery, with clarity, compassion, and practical advice.
📌Key Takeaways:
- It’s not just medical – emotional and practical support is essential to navigating a transplant.
- From ice lollies to PICC lines, every detail is planned to keep you safe and supported.
- Transplants can be tough – but knowing what to expect makes all the difference.
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
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
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.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
We're back with another Myeloma Minutes podcast.
I'm here with my co-host, Sally.
Sally, great to see you.
How are you doing this evening?
Good, thanks, Jam.
I'm going to carry on with the weather
theme of our last part.
I hope everybody enjoyed that.
Excellent.
Here we are, late evening, a typical British
summer.
It's raining outside, but otherwise I am good,
thank you.
But I'm really looking forward to today's podcast
because we've got a very special guest.
(00:22):
We're delighted to have Alex Scott with us
today.
So Alex is one of our wonderful specialist
nurses in the transplant team in Oxford, and
she is an absolutely crucial cog in the
whole journey of our patients as they go
through autologous stem cell transplant.
And she does this for not only myeloma,
(00:42):
but also lymphoma and sometimes other conditions as
well.
Alex, welcome to the Myeloma Minutes podcast.
I only had to ask you 48 times
if you were willing to come on, and
on the 48th time you said yes.
So thank you so much.
I think I'd literally walk past her in
the corridor and say, he's going to ask
me again to come to the podcast.
(01:02):
Can I just walk in the other direction,
take a lift?
But we pinned you down eventually.
Alex, thank you so much.
No, thank you for having me on the
podcast.
Can you tell our listeners a little bit
about yourself, your role that you do now
and how you've got to this point?
So I've always been a nurse in Oxford.
I trained at Brookes, and then I did
two years on the oncology ward, so dealing
(01:23):
with solid tumours.
And I've then done two years on the
hematology inpatient ward, often actually nursing people through
their transplants.
There was this thing called the pandemic that
happened, and I did my masters in the
year of the pandemic, not planned.
And then I joined the bone marrow transplant
team, which is where I've been for the
last four years, looking after, as you said,
(01:46):
autologous stem cell transplants.
The main focus of the pod is going
to be the really important discussion that you
have with our patients as they are on
the cusp of being admitted for their stem
cell transplant.
But you have a much broader role than
that.
You start the journey with the patients around
(02:08):
the time that they are thinking about having
their stem cells mobilised.
There's a huge amount of coordination work that
you do with other members of your team
so brilliantly.
But I think the journey that we've completed
over the last few weeks on the podcast,
we've done the doctory transplant discussion.
This discussion that you have, you sit down
(02:28):
with the patient.
Broadly speaking, when do you do it in
relation to the timing of when people come
in?
And broadly, what is the purpose of this
sort of consultation discussion?
So in Oxford, our role starts when we
get the referral, which is often at the
second cycle of the induction chemotherapy.
And we touch base at that point.
(02:49):
Our role starts right at the beginning.
It goes all the way through the collection
of stem cells, which has already been kind
of discussed, and through those workup tests of
checking the heart and the lungs and making
sure that as a patient you're as well
as possible.
And then once you've collected your stem cells,
we at that point really touch base and
say, you know, we're looking at the next
stage, you know.
(03:10):
And actually up until this point, people haven't
really had chance to talk about the transplant
because with myeloma, the treatment happens so quickly.
So you have four cycles, then you have
your break, then you're collecting your stem cells,
you have your tests, and then suddenly the
actual transplant can feel a little bit like
a black hole.
And so that's when probably our main bit
of contact with patients come in to play
(03:33):
at that point.
So you first reach out to somebody when
they've basically had maybe even just four weeks
worth of treatment.
I mean, how do you broach that subject
and how do people respond to that?
Do you think that, you know, it's easy
to take in at that point in time
or is it just hugely variable and dependent
upon the individuals?
I think it's massively dependent on patients, but
(03:53):
it does give us that chance to have
a bit more of a relationship with patients.
We don't necessarily have a lot of contact
with them at that point because we will
defer to our myeloma specialist nurses, but it
means that we can talk to those patients
that are particularly anxious and they then don't
feel like there's all this information coming at
quite a late point.
(04:13):
And also because you have that gap of
about four weeks where you're not having treatment,
often patients will say, I feel like you've
abandoned me because they're very used to coming
in on those Fridays or that every week.
And they're going, hang on a minute, no
one's going to look at me for four
weeks.
And we say, that's all very planned.
Do not worry.
We haven't forgotten about you.
So it does help us later down the
(04:34):
line, I think.
What a really useful service.
I mean, I suspect that practices might differ
elsewhere, but it's incredibly useful to find that
that's what works best for you guys in
Oxford in terms of building that relationship so
that you're gradually preparing people for the transplant
that might be ahead of them.
Yeah.
And I think what is difficult actually for
you and your team, Alex, is Oxford is
(04:58):
a transplant centre.
So the patients that are Oxford patients and
they start with us, we start talking about
the transplant relatively early because the place where
they were diagnosed and treated is the place
where they had their transplant.
But we take people from all around sort
of our geographical region.
And sometimes you don't hear anything about the
(05:18):
transplant.
It's like, we don't do that here.
You're going to hear about that in Oxford
and you're the first person, right, who is
there then fending all these questions about a
stem cell transplant.
We have an introductory appointment that our consultants
lead, which gives them the basic outline of
the transplant, which I know you've discussed already
in the podcast.
But that's a lot of information for patients.
(05:39):
So then we tend to call about a
week later if we're not at that appointment
to give them our details and to also
just say to them, how are you feeling?
Let's now look at that information and spread
it out across more of a timeframe.
And then once they've collected stem cells, we
then sit down and do what's called a
workup chat.
And we try and do it here in
(06:00):
Oxford before they see the consultants.
And the reason for that is that that
appointment is quite a lot of information that
has to be put on a consent form,
whereas we can put it into a little
bit of real world.
This is what we're expecting.
This is what we're going to do to
stop anything, you know, to minimise those risks
and also just to let patients be a
(06:20):
bit more aware of day to day what's
going to happen and the practicalities, you know,
things to bring into hospital.
We've got a list for them.
And it means that they can then have
a bit of ownership on what they're doing,
which I think it does help those patients
so that when they meet the consultant, they've
got questions.
They know what's happening.
They've got an overview of it.
(06:40):
You give us a massive helping hand in
terms of just making, you know, Jam and
I when we're in clinic, things a little
bit smoother by the sound of it, but
also say the patients who then come and
see us are armed with the questions which
are most important to them and also kind
of filling in the gaps for things that
we would forget about, which you know through
(07:00):
your experience are so important to everyone going
through this process, but perhaps isn't quite on
the radar for Jam and I in the
same way.
Do you think that's a fair point?
I think it is.
Absolutely.
And I think it definitely supports families as
well, because there are questions that they'll ask
me that they definitely wouldn't bring up in
a consultation.
Visiting is vitally important.
It's one of almost the first things we
(07:21):
speak about, because people do have an idea
that actually when their loved ones are in
hospital, they're going to be kind of sealed
off in a little room.
No one's going to go near them, hazmats
are out and everything else.
And we say, well, actually, that's not the
case.
Your loved one needs family around you.
So absolutely, it's great to visit as much
as you can.
It kind of deals with some of the
(07:43):
practicalities that wouldn't be asked otherwise.
And it puts the transplant into more of
a day by day event.
And we do talk about the risks, which
means that often patients are thinking, okay, we
know that that's going to come up in
the consent form.
And it doesn't take them by shock, which
I think is quite important.
And also, it's given them time to absorb
(08:04):
that very important information.
And the time between your chat with them
and when we consent, I think is a
very valuable few days, often a week or
two, which allows them to really, I think,
understand in their mind what's going to happen.
I personally really enjoy finding out from patients
how much they've read, because there are fantastic
(08:25):
resources out there.
Some patients like to read absolutely everything.
Other patients like to know nothing.
So I do find out from them first,
how much have they read?
Because that can really help.
And also find out from them, how are
they feeling?
They've had a hefty treatment so far.
Often the actual process of collecting their cells
can bring up quite a lot of emotions
(08:45):
for them.
And they've been off treatment.
So often they don't really have a lot
of side effects.
They're actually feeling pretty well.
And so to come into something where they
are aware they're not going to feel so
brilliant, that can bring up quite a lot
of emotions.
They've had chance to think about their diagnosis,
which up until this point, they really haven't
had that chance.
(09:06):
Hematology moves so quickly, it does make it
difficult for them.
So I first of all start with that.
I then talk about dates.
Dates are vital.
We plan our lives around dates.
So they need to know when they're coming
in.
We aim as much as we can to
get people in between four and six weeks
after they've collected their stem cells, they come
(09:27):
in either via our ambulatory care or onto
the ward.
Part of that is fitness.
Part of that is generally how they feel
and also their family setup.
So they do need to be within an
hour of Oxford to come through ambulatory care.
And they need to be fit and well
enough to do a walk or have somebody
to drive them in and out.
But we talk about ambulatory care as a
(09:49):
possibility.
We then count in minus days.
So day minus two is admission and that's
the insertion of their PICC line, which is
put in very, very well by our vascular
access team here in Oxford.
It goes in on the day unit and
it is a line that goes in the
upper part of their arm.
We have a lovely juicy vein up on
(10:11):
our shoulder and it goes into there and
there are great advantages of the PICC line.
As you've both kind of said, we can
take blood out of it.
We can give products, so anything they need,
anti-sickness or things like that, we can
do.
And it protects our vein.
Unfortunately, from a haematology point of view, we're
not born with the lines in.
So there are always a few risks.
(10:33):
One of them is you can get a
blood clot on the line, which would mean
that it would be hot and quite painful.
And ultimately, we'd take that line out if
we had to.
You can get an infection in the line.
It's not common.
Haematology are very used to these lines.
We deal with them a lot.
So we don't get many line infections, but
it is a risk and ultimately we'd remove
(10:53):
that line.
And the last risk is that you can
kind of find that it actually blocks a
bit.
So we put some medicine down the line
to stop that from happening, which actually works
really well here in Oxford.
Great.
So you give them the full sort of
context about the PICC line and I'm guessing
the kinds of things people ask is like,
can I walk around?
Can I have a shower?
(11:14):
Is it painful going in or coming out?
And I guess the answer to both of
those is no, thankfully, generally.
Speaking to some of my colleagues in other
places, we're a bit unique in this, is
we actually say to people, make sure you're
using that arm.
Actually, it's really good to put the line
in your dominant arm.
The more you use your arm, that line
works so much better.
We give you lots of anesthetic, so it
(11:36):
actually doesn't really hurt.
You probably feel a bit of poking and
prodding, but there shouldn't be anything sharp there.
And it goes in really nicely.
I often make the joke that our line
team come in dressed as surgeons, which I
always think is slightly disconcerting, but it's vital
for the sterile nature of it.
But actually, I reassure patients that we're going
(11:56):
to have this in for three to four
weeks.
Often we don't send people home with them.
The lines can stay in for a lot
longer.
So actually, they're only in for a little
tiny portion.
They do pay dividends when they're in.
It's a lot nicer than those little cannulas
they can have.
And often our patients have had experience of
that.
And we say, as well, one less needle
is always a benefit to them.
(12:18):
And then we say, once you've got your
PICC line in, you might feel a little
bit bruised later on in the day, often
paracetamol, but most of our patients don't need
anything.
And then if they're coming onto the inpatient
ward, they'll wait for the bed to be
ready.
If they're going on our ambulatory care, they'll
see our doctors, they'll see pharmacy, and then
they'll head off back home or to the
flat.
I'm going to remember so much of what
(12:39):
you said and utilise it myself.
But can you just talk us through ambulatory
care versus the inpatient stay?
What exactly does ambulatory care mean?
And who may or may not be a
good person to use that service?
Ambulatory care is a service we have here
in Oxford.
It's a day unit, but on a much
(13:00):
smaller scale.
The advantage of ambulatory care is that you're
not an inpatient on a traditional ward for
the first week, you're always going to get
two weeks in hospital.
That's always going to happen, however you do
it.
But actually, it is nice to have that
first week when you're feeling really well, actually,
(13:20):
either at home or in our on-site
flat.
You also need to have somebody who can
be with you if you're staying at home.
So if you were to get ill overnight,
you would be coming to our haematology ward
and you've got to have someone who can
drive you.
I say to our patients, it's a gut
feeling, okay?
So I've already looked at people, I've already
(13:40):
had a little chat with my team and
said, I don't think this patient is right
for ambulatory care and we might not raise
it.
If we raise it, I say to our
patients, think of it as a gut reaction.
Some people are horrified at the idea and
if they are, that's not right for you
and that's okay.
But some people are really keen on it.
So it's a really great provision to have
and it also means we're not waiting on
(14:01):
beds and things in wards, which always is
better.
Brilliant.
Thank you so much.
So you can kind of get going sooner,
maybe, because like you say, you're not waiting
for beds and then the person comes in
when they really need to be in, which
sounds like the perfect solution, like you say,
for the right person.
Yeah.
So it's a way of our fittest patients
in a way with appropriate geography and people
(14:24):
around them and ways of ensuring that if
they do get unwell, they can get into
hospital, keeping them out for longer, which I
think absolutely improves the whole experience of the
transplant.
But as you say, Alex, it's not for
everybody.
It's a great provision to have and we're
really lucky here in Oxford to have it,
which is fantastic.
So once you've had your pick line in,
(14:45):
you're either going into an inpatient ward or
you're going back to either the flat on
site or your own home, depending on geography.
Then on day minus one, you have your
melphalan.
It is a very strong drug.
It goes into your system and it goes
around your body and then it leaves out
your kidneys and your urine within 24 hours.
(15:08):
What it's doing when it's going around your
body from your pick line is it's touching
all your cells and then causing a chain
reaction within that cell that leads to that
cell's death.
So with melphalan, you do get two waves
of side effects.
So you get the ones that are on
the day and that's mainly, unfortunately, nausea, very,
very occasionally vomiting, but we don't see much
of it at all.
(15:29):
And so we have four anti-sicknesses that
work really well together.
You have ondansetron, which most of our patients
have had before.
Dexamethasone, nearly all of our patients have had
it.
That's your steroid.
They've had it in huge doses.
So patients are often a little bit horrified
when I say we're going back onto dexamethasone,
but I say actually be aware you've had
it in big doses.
(15:50):
This is a little tiny dose.
You're only having four milligrams and actually it's
really well tolerated.
You don't get the side effects that you've
often already experienced.
And then there's two drugs that are new
to our patients.
So you have aprepitant and you also have
olanzapine.
Now, aprepitant and olanzapine, I always explain it
as being the next rung in the ladder.
(16:10):
So you've got ondansetron and dexamethasone, and then
you've got olanzapine and aprepitant.
For about 90% of our patients, those
four drugs working together manages all of our
nausea.
If you're in that 10% that do
feel nausea, tell us because there's always something
else we can give.
There are no prizes for being a martyr.
(16:33):
There's no prizes for not really telling us
because actually I often spin it with our
patients and say, actually, you're helping us if
you tell us early.
You're not a burden, but tell us early
because it gives us time to try something
and then say, did that work?
Did it not?
Otherwise we end up giving you loads of
anti-sickness.
(16:54):
It gets rid of your nausea, which is
brilliant, but we have no idea what worked.
So the next time you get nausea, we
have no idea what we're reaching for.
So it really helps to deal with a
little bit of nausea rather than waiting until
it's a lot more.
The same goes for pain.
When you're on your melphalan, as you've both
said in the previous podcasts, we do have
(17:15):
ice lollies and ice cubes that we have
in Oxford.
So you get a little wine cooler bottle
that comes and you have ice cubes and
rocket lollies.
And the idea is you keep your mouth
as cold as you possibly can.
So we need it on your tongue, but
also moving around your mouth to really keep
your mouth as cold as you can.
(17:36):
Now, ideally we have 15 minutes before the
melphalan, the half an hour that the melphalan
is running and 75 minutes afterwards.
So all by the shouting, it's two hours
of keeping your mouth as cold as you
possibly can.
It's a lot.
We know it's a lot.
We always say we hope for a heat
(17:56):
wave on that day.
We're very British, but often we won't have
that.
So we say wrap up warm, but five
minutes is better than nothing.
If you can do five minutes, it will
pay dividends in your second week.
So whatever you can do is better.
75 minutes afterwards.
75 minutes.
I wasn't aware of that.
I mean, that is, I mean, I'd need
a number of different brands.
(18:19):
You know, I'd need calipos.
I'd need different types of rocket lollies, maybe
flavoured ice, slushies.
I think we need to think about the
lolly menu in more detail.
I mean, that's phenomenal.
It is a lot.
I mean, I'm guessing not many people manage
that because that is actually very hard and
actually probably ends up being actually quite painful
(18:40):
as well.
A lot of our patients will manage it.
A lot of our patients do manage it.
They do.
The gentlemen tend to have a lot of
competition.
So if you have a few of them
that are around about the same time, there's
a lot of, I got through 40 ice
lollies.
And you're like, oh, good, great.
So there's a bit of competition there.
Our lady patients, to be slightly stereotypical, do
(19:02):
tend to just say, I just got through
it.
But actually in Oxford, we're one of the
only centres who use this oral cryotherapy and
actually provide our own ice lollies.
Other centres, you have to provide your own.
So there you go, Jam.
You'd be able to get whatever ice cream
you'd want there.
There's a little business in there somewhere, a
little sort of ice cream van driving around
(19:24):
various wards of transplant centres.
There you go.
But no, that's really interesting.
But as Sally did say, when we were
talking about it in the last pod, it's
one of these things that most centres do
now, but I think it's not completely universal.
And we made it very universal, I think
about three years ago.
Before that, it was quite patchy actually, to
be fair.
But we have made it more universal.
(19:45):
And anecdotally anyway, with melphalan, we see very
little higher oral mucositis now, like genuinely very,
very little.
It's made a big difference.
We're not seeing the malfunctions that we were
seeing before.
We're not seeing that amount of really struggling
to swallow your own saliva that we've seen
in previous years.
(20:06):
So it has been absolutely groundbreaking for us.
And we have seen huge impact from it.
And then after your melphalan, you will have
quite a lot of fluid, which just really
helps your kidneys just really flush out that
melphalan.
It is really important to keep drinking.
We will keep providing you with water just
to make sure you're flushing out those kidneys
really well.
(20:26):
You then either go back to your flat,
home, or you're on the ward.
Typical is the next day is the return
of your stem cells, which is your day
zero.
Sometimes you might have an extra day just
to help your kidneys wash that out fully.
Because what we want to make sure is
that all of the melphalan is out before
we put in your very precious stem cells.
Now, your stem cells that were frozen, they
(20:48):
were put into different bags.
So you've had them collected in one bag
that you saw.
When we froze them down, they were put
into different bags.
And your consultant will decide exactly how many
bags you're going to have.
We will tell you how many bags you're
having.
And typically, it's only one day of your
cells back.
It's a lot quicker to give them back
than it is to take them.
Sometimes if you have got a lot of
(21:09):
bags, we might put them over two days
just to stop any nausea really happening.
Because there's a preservative in there that can
cause a bit of nausea.
But what will happen on your day zero,
you do get your second birthday.
So you get to join the royal family
only on birthdays.
We're not promising anything else.
But you get this cell return.
Now, your cells will come in a big
(21:29):
shipper.
Think R2D2, but without the skis on the
bottom.
And that's a big shipper that will come
in.
And that's filled with liquid nitrogen and your
bags of cells.
You'll have your fluid in the morning.
And then normally about lunchtime, we start giving
you your cells back.
So what will happen is we'll ask your
name and date of birth more times than
you've ever been asked before.
(21:50):
So by the end of your cells, you'll
really know that.
So that'll be okay.
We don't mean to be rude.
But I give cells and I know I
sort of am rude.
There's myself as a nurse and a physician's
associate in Oxford, or in our other centers,
it might be another nurse who then basically
read a load of codes to each other.
And that makes sure that the cells match
my paperwork matches the patient.
(22:11):
We then spin around like we haven't just
been being rude.
And we say, are you ready?
And patients go, yeah, sure.
It's fine.
And those cells come into our water bath
that then defrosts them.
And then it goes in via your PICC
line.
For the most part, you just sort of
sit there.
It's 10 minutes, 10 to 15 minutes per
bag.
(22:31):
And we get them in as fast as
we possibly can.
The defrosting will take about three to five
minutes of actually being in the water.
And we're watching for those ice crystals to
go.
As soon as that last ice crystal is
gone, the physician's associate or nurse will take
that out of the water, give it a
clean with alcohol externally, and then hand it
to the nurse.
(22:52):
And the nurse will then hang it and
attach to your PICC line.
Once it's attached to your line, it's 15
minutes or as quick as we can.
So often it's a lot less than that.
And we'll make sure that those cells go
in nicely.
The nurse that's giving them will be constantly
asking you, how are you feeling?
Are you feeling okay?
And a lot of our patients feel very
(23:13):
like it's a huge anti-climax.
They've waited so long for these transplant.
They know it's not a surgery, but they
kind of go, is that all I was
waiting for?
And you go, yeah, yeah, that was it.
But that's okay.
We like anti-climaxes.
It means everything's gone very smoothly.
So Alex, a really quick question.
It's so interesting to hear you say this.
(23:34):
This is generally going through our minds.
So if you're waiting for those ice crystals
to defrost, when it goes in, is it
not a tiny bit chilly?
And also really obvious question here, but what
does a bag actually look like?
What colour is it?
I mean, you know, what can you see
there?
Are you checking it?
It's just, yeah, we're not really part of
this process.
So yeah, I'd welcome that knowledge please.
(23:56):
So we warm them slightly so that it's
not cold because you don't want the vein
to kind of go too cold.
However, it's a balancing act because the preservative
that's in there will keep working even when
it's hung up.
So if you leave it for too long
in the water and you heat it too
much, those cells will clump.
(24:17):
So it's a balancing act.
You don't want to heat them too much
and then you're, it's going to be harder
for the nurse to infuse those, but you
don't want it to be too cold for
the patient.
It's normally about a hundred mils in there
and it's often a straw colour.
When you've collected your cells and you've had
your harvest, you can look at the big
(24:37):
bag and it will probably look very kind
of like a sunshine yellow colour.
And actually it's probably a bit darker when
we defrost.
And that's because we've mixed that preservative in.
And you've got a bit of plasma in
there as well, just to make sure those
cells are really nice.
Now, whilst patients are sat there, we do
say visitors can be there if they want
to.
And what will happen is they just go
(24:59):
back to back in those bags.
Now, very occasionally you can get a bit
of a reaction and that's to that preservative.
So you can get a little bit short
of breath.
You can get a bit itchy.
You can get a bit scratchy.
You can get a few reactions to it.
Now we do give medicine to stop that
before we give the cells and that's paracetamol,
(25:20):
hydrocortisone and chlorphenamine, so pyriton, essentially.
And that really just settles our body down
so that we're not going to react.
Now, if you've ever reacted to a drug
before, often everyone stops.
We disconnect that drug and it's all a
lot of action.
When you have your cells, we know that
once those cells are inside you, you'll stop
(25:42):
reacting.
So actually, we kind of just say, let's
just get on with it.
Let's not kind of prolong this.
We know you're safe.
We are here to look after you, but
let's get these cells in.
But I do say it's very rare you
get a reaction.
Very rare, indeed.
And afterwards, as well as feeling very, very
tired, because pyriton does make you quite sleepy,
(26:04):
you often get quite a lot of emotions
because it is that day of, you've been
building up to this and it's almost a,
oh, I've done it now.
And it can be a little bit of
kind of an emotional day and it can
be a bit almost disappointing.
And so we do tell people about that
just so that they're aware.
And so family can kind of come around
(26:24):
that patient and say, hey, we expected this.
This is OK.
I want to come back and refer back
to our previous podcast and the other food
chat that we had and the whole sweetcorn
sort of smell that we spoke about.
Where are you with that?
Can you smell it and do you think
it smells the same?
And also, when does that start to happen?
Do you like sweetcorn?
I thought you were asking about like, do
(26:45):
you like sweetcorn?
What are your other vegetable preferences?
Yeah, I do like a bit of sweetcorn.
I now can't smell the cells at all.
Possibly if I've just been on annual leave,
I'll get a little whiff of them, but
I'm around them so much I don't really
smell them.
I do warn families and say to them,
be aware that your loved one is probably
going to say they stink.
(27:07):
You're going to say they stink.
And they're not actually being horrible.
It's just they can smell that sweetcorn.
The patient can't.
So yes, it's interesting the wider team as
they walk down the corridor, they can always
tell you which room the cells have been
in because of that very well-known smell.
And once they've had their cells, you've got
(27:27):
about three days of feeling absolutely fine.
So up until day plus three, so three
days after your stem cells have been given,
you're feeling absolutely fine.
Progressively as you get through that, you're starting
to just feel a bit more tired and
a bit kind of, I can't really be
bothered to do anything.
It is really important that you keep pushing
through and doing things and getting all washed,
(27:48):
dressed and ready.
And then day plus four, day plus five,
that's when that second wave of those melphalan
side effects really start to show themselves.
It really always starts with you just feeling
really thirsty.
So you wake up and you think, I'm
completely parched.
I really need a drink.
And you'll have a big drink.
And 10-15 minutes later, you're going, I'm
(28:10):
really, really thirsty.
That's the start of things.
Now, I tend to say to my patients,
I go top to bottom in side effects,
you'll get a bit of all of these.
What we don't know is which is going
to affect you the most, okay?
Hair will fall out.
So your hair and any facial hair does
fall out during the transplant.
It happens a bit later.
(28:32):
It's on to kind of the end of
the second week that hair starts to have
those changes.
But I talk about it now so I
don't forget more than anything.
We do say to our gentlemen, please don't
wet shave because if they nick themselves, it's
an impressive amount of blood.
And often, you know, a couple of days
of not shaving and your hair will be
falling out anyway, so it'll be okay.
(28:52):
You do get dry mouth, very occasionally sore
mouth.
It's not too bad.
Dry throat, sore throat, a feeling of if
you've got a sore throat, you can swallow,
but you've almost got to work a bit
harder to swallow.
And you can sometimes get kind of a
shoot of almost electricity pain with that swallow.
You can get heartburn, indigestion, appetite completely goes
(29:14):
and your taste really changes.
Food that isn't lumpy can feel lumpy.
So a yogurt, which is normally a very
smooth feeling, can feel like it's more lumpy
and hard to eat.
You can get a feeling of rolling in
your tummy, nausea, very occasionally vomiting.
We don't get a huge amount of it,
(29:35):
but there is that as a risk.
And from your belly button to the top
part of your pelvis, that real bottom part
of your abdomen, you can get some quite
intense cramping sensation, unfortunately diarrhea.
We're very British.
We don't like to talk about poo.
I talk about it quite a lot in
my job.
So I'm a little bit immune to that,
but we do say everyone's going to get
(29:56):
diarrhea.
It's not pleasant, but please tell the nurses,
because what we'll do at that point is
we'll take a sample to check there's not
a bug in there.
As soon as we know that there's no
bug in that diarrhea, we can give medicine
to stop it, which is loperamide or imodium.
And it works very, very well.
(30:16):
The thing to remember, especially with the diarrhea,
is that your bowel, all the way from
your mouth, all the way down to your
back passage, is going to be pillar box
red.
Subconsciously, all of us will think, if I
don't eat, if I don't drink, I won't
have diarrhea.
Unfortunately, that is not true.
And we just have to manage that situation.
(30:38):
In other things to be aware of, so
this week too, we're very reactive to what
the patient's showing at that time.
So if they're in pain, we'll manage the
pain.
If they feel sick, we'll manage it.
One of our key teams that will also
help us with our symptom management is called
the hospital palliative care team.
Palliative care is associated with death and dying.
(30:59):
That is not the case with the transplant.
They are experts in managing symptoms.
And so if we do have a situation
where someone's really feeling nauseous or they're in
pain, we may bring them in just to
give us a bit of advice.
I warn people more for their family's benefit
because it's normally a bit of a perfect
storm.
(31:19):
Patient's not feeling so great, so they're not
reactive on their phone so much.
So then families come visit, they walk onto
the ward as the hospital palliative care team
are leaving their loved one's room and it
can cause coronary inflammations.
So we do just let people know about
that.
During the second week, our pick line will
be used quite a lot to give any
(31:41):
medicines that we need.
The other thing that we do need to
talk about is food, which I know you
have raised in podcasts before.
As we sit here now, we have a
basic amount that our body needs for us
to do the work it needs to do.
My appetite far exceeds the calories that I
need for my body to work.
So it's fine.
But in a transplant, you're looking at needing
(32:03):
so many more calories to repair and let
your body recover from that melphalan that we've
given.
Your body's running a marathon, so we've got
to fuel it for that, despite the fact
you don't feel hungry, nothing really tastes right
and you've got a bit of nausea.
So we do have our dietitians that really
(32:24):
help us with that and it is often
a case of we have to eat for
the sake of eating.
Your food is another medicine that we will
give you alongside everything else.
Alex, when you talk about food, I'm guessing
one of the first things people say is
that I just can't cope with hospital food.
It actually makes all those symptoms that you've
(32:45):
just been talking about much worse.
How do you counsel people about bringing snacks
and food in or people cooking food at
home or if they don't just feel like
eating for a couple of days, is that
a big deal?
Because talking about nutrition and food is something
that comes up a lot during the transplant,
isn't it?
It is.
And it's because you have no hunger.
(33:07):
So I tend to say to patients, we
are a little bit the reverse Weight Watchers.
So we need raw calories into you.
So if you know you can always eat
jelly babies, bring in jelly babies.
That'll be great because you'll think, oh, I'll
just have a couple.
We're less concerned about in that second week
(33:28):
having set meals.
We almost really want a bit of grazing
and a bit of not thinking about food
as a burden because that takes a lot
of time to overcome that.
So we really want to support people into
eating as they can without making it a
huge mental battle for them.
(33:49):
And it's funny because almost sometimes when I'm
doing the round for people on transplants, I
was rounding today and Sally, I don't know
if you feel the same, almost with the
myeloma transplants, if you've seen what people have
had for breakfast on a certain day, in
a way that gives you a lot of
confidence of how they are.
So it's like day 10 or day nine,
you've eaten two pieces of toast and toast
(34:10):
is not always the easiest thing to kind
of, you know, it's quite dry and actually
get it in.
It kind of almost gives you clues that
actually they're fine.
So it's one of those things that I
think gives you a lot of information.
Actually.
Yeah.
I mean, I completely agree.
I think so often when we're doing the
ward rounds, we're looking after the patients whilst
they're in hospital.
Similar to you guys, Alex and the nurses
(34:30):
on the ward, we ask a lot of
questions about, have you eaten today?
Are you drinking enough?
Have you been to the loo?
What's your poo look like?
Are they crazy on the Bristol stool chart?
You know, if there's an appetite for it,
but yeah, so, I mean, it is actually
incredibly important and these questions aren't, they aren't
just for the sake of it.
(34:51):
And because we have an obsession with certain
parts of the bowel, it does actually tell
us an awful lot about how someone's faring,
doesn't it?
Yeah, absolutely.
Home cooked food.
We all prefer the food that we have
at home to a hospital.
Home cooked food is absolutely fine, but there
are things that we need to be aware
of with it.
So we don't want rice being reheated.
And it is those real basic things that
(35:11):
we've done for so long when we had
a loved one on treatment.
It is a little bit second nature, but
it's just making sure that that food is
nice and piping hot and stored correctly.
In terms of the, I mean, this is
a huge other area.
So I understand that we've got a limited
amount of time.
The nootropenic diet and the fact that you
may talk patients through what they perhaps should
(35:32):
or shouldn't be having whilst they're in hospital
as well.
Could you just quickly summarise that for us
perhaps?
So I tend to say very much to
patients, make sure that your hot food is
hot, cold food is cold.
The best before and expiry dates really do
matter.
You're not having your soft cheeses.
You're not having anything that's raw.
(35:54):
So everything needs to be cooked really nicely
and really kind of fully.
Don't have any steaks that are slightly rare.
It is part that gets a little bit
of a giggle.
Where do people get their eggs from?
If you have red lion egg from the
supermarket, you can have runny eggs.
If you don't and you get them from
a farm, we do say they do need
to be hard foiled.
(36:15):
But just to recap the logic behind that
is then if your food isn't heated properly
or food that should be cold gets a
bit warm, there might be some bugs within
that food that if you then swallow them,
they go into your tummy, could just make
the situation a little bit worse.
Is that how you understand it?
Essentially, yes.
Guts are full of bugs.
We have a full zoo in our body
(36:36):
which our immune system is sitting on top
of.
Now this is the other part of week
two is that immune system goes.
So we have to be aware of all
those bugs, not just a bad bug.
A naturally kind of good bug is also
a bug and our immune system sits on
top of those.
And in week two, when this immune system
(36:58):
goes, one of these bugs that are in
our gut are going to spike up because
there's nothing stopping them and they're going to
reproduce and they're going to get more.
And what happens and what all of us
are going to be watching out for is
for a temperature.
It's not the only sign of infection, but
it is kind of one of the main
ones.
And at that point, often we will be
(37:18):
walking around the ward and say, oh, you'll
get a temperature today.
Or we think you'll get a temperature today.
What happens when that temperature happens is we
will take some blood out of the pit
gland.
We'll take some blood out of a vein
as well.
We'll take a urine sample.
We'll take a stool sample if you've still
got diarrhea and we'll take a swab of
your throat.
And what that is, is to isolate what
(37:40):
bugs are there.
Now, for the majority of our patients, we
won't find a bug because the tests that
we do don't show the bugs that are
naturally in us.
Because otherwise all of our tests would be
positive because we've all got these bugs and
you start on a really strong antibiotic.
What that does and the aim of it
is to come in and be a temporary
hat on these bugs.
(38:02):
Often 24, 48 hours later, there's another part
of your blood that looks at infection and
that level is nicely falling.
Some people don't have that level falling and
we might need to switch to another antibiotic.
Again, that's very normal.
And 24, 48 hours later, that level in
your blood that's looking at infection is coming
(38:25):
down nicely.
With that, patients are feeling better.
Now, I do want to preface this next
bit with, remember we're doing this to put
your myeloma in the best position so you
get the longest time without having to have
lots of different treatments.
This is kind of the bad and the
ugly side of transplant.
And it's the risks that we know are
(38:46):
there.
We talk you through real world kind of
how this happens, but it's remembering that these
risks are small.
So for those patients that have had two
rounds of antibiotics and this still isn't managing
their infection, they've often still got diarrhea.
So we're losing a lot of fluid.
So we're sweating, we've got diarrhea.
Generally, just everything's working very, very hard.
(39:09):
A decision is made by the whole team
that the ward is no longer the safest
place for this patient.
And that's when we go to intensive care.
Our intensive care ranges from literally giving a
drug that we can't give on the ward
and you might stay in intensive care for
24 hours, all the way up to multiple
organs being supported by machines and that patient
(39:30):
being put to sleep to let their body
recover.
That risk is little.
So here in Oxford, we have a less
than 10% risk of going to intensive
care.
That means a more than 90% risk
that you won't be going.
The provision is there should we need it.
The other risk is for those patients that
have gone to intensive care and are finding
(39:52):
that no matter what we do in terms
of antibiotics and things, we can't get on
top of that infection.
And that's where a risk of death happens
from the transplant.
Now again, that is a really small risk
and the exact percentages would be given more
by the consultants, but we say it's a
less than 5% chance, more than 95
(40:13):
% chance that you're going to be okay.
So it's really important looking at those figures
kind of both ways because they are scary.
So Alex, those figures may have been mentioned
in passing by consultants as they've talked about
stem cell mobilisation and other aspects of the
process of getting to the transplant.
But to be fair, not always.
(40:34):
It is of course in the literature, but
as you say, some people won't have read
it and you may be the first person
who really goes into what you've just said
so eloquently about intensive care and death.
So in all the years you've been doing
this, how do people react or is it
just incredibly variable from complete sort of shock
(40:57):
or disbelief to like, yeah, no, I get
that and I just have to roll with
it?
What sort of things have you seen?
For the most part, it is a lot
of shock because we're putting a figure on
that and we're also saying it very clearly
about these are the risks.
Patients will often say, I knew that there
was a risk, but I don't like to
(41:17):
think of it.
And that's one of the reasons that's quite
nice the way that we're able to talk
to patients first is that we can give
that space where in a consultation, where you're
doing a consent form, it's written there in
black and white, you know, risk of death.
So it's actually nicer just to talk to
people first and say, actually, this is what
we're expecting.
This is how we're going to minimize those
(41:39):
risks as much as we can.
Often as well, we will also bring in
just making sure that wills or any paperwork
have been done.
And often I do say, we are not
expecting things to happen.
We are not expecting you to need this,
but it's important that this is managed so
(41:59):
that your loved ones will also know what
you want out of this.
We always give a little bit of space
to let that breathe and to actually say,
you know, how are you feeling with that?
There's often quite a lot of emotion.
There's often quite a lot of tears, but
I think it plays it very openly.
And I do say to people, I've raised
this.
(42:20):
So now if you need to talk about
it, you're not trying to get that into
a breakfast conversation because it doesn't happen, but
actually you can say, well, Alex said, and
then I'm almost the bad guy in it,
which is absolutely fine by me.
We then spin it and we say, well,
actually, why would we be in the earlier
group?
And why would we only expect one antibiotic
(42:40):
when there is this huge other risk?
And we do say, well, actually it's about
how people have managed their treatment before.
Little bit basically, we say that it's about
if you've had lots and lots of antibiotics,
those bugs in your gut know how to
move around to that antibiotic.
A lot of our patients are lucky and
haven't had to have lots of antibiotics.
(43:01):
So when that antibiotic comes in, the very
strong one in the transplant, it will be
that hat rather than becoming almost a cat
and mouse game where these bugs just know
how to get around it and reproduce.
And then we can say, go back to
week two, you've had these horrible side effects,
and then we'll actually look at how things
(43:22):
change in week three and how things get
better.
You get the raw emotion.
And I was just thinking out of the
hundreds of patients I have consented for a
transplant, I haven't had tears once during the
consent process.
And I think that's because you and your
colleagues take a lot of that raw emotion
through this discussion that you're having.
(43:42):
And these are difficult things to talk about,
but they're so important.
Like, have you done your will?
Are your affairs in order?
I mean, it's absolutely crucial.
And thank you for spending some time talking
about them.
It's really important.
It gives people that opportunity to raise it.
(44:03):
Because often families have said to us, well,
actually, I don't want to ask about the
will, because that's almost putting a negative spin
on it.
We just try and say, well, actually, we
should all have wills in place.
We should all have things there.
And actually, this is quite good point to
just check those things and see if things
have changed and need slightly updating as well.
As we then come into our third week,
(44:26):
what will happen is our patients will wake
up one morning and they'll go, I feel
different.
I don't feel bad.
I don't feel ill.
I feel different.
And the doctors come in and they tend
to say, you have counts.
And patients go, what's that then?
And we say, those neutrophils that start really,
really high in the first week, drop and
(44:47):
spend the majority of second week on the
floor and not there, have just started to
show themselves.
We're talking 0.02 for neutrophil.
It's a great day.
Everyone has a fantastic day because they can
see that things are getting better in themselves.
It's extraordinary how little neutrophils we need to
(45:10):
feel better in ourselves.
Neutrophils are vital.
And actually over the next few days, patients
will steadily rise.
Then what tends to happen is patients are
feeling very, very good and they're feeling like,
okay, I'm starting to feel better, still very
fatigued, still feeling quite delicate, but actually comparative
(45:32):
to how they felt the week before, they
feel much better.
And nearly always, patients will find one morning,
the doctors walk in and they say, what
are my counts today?
And the doctors are like zero.
And at that point, the novelty of being
in hospital has well and truly worn off.
Patients find that so difficult because it's that
(45:54):
I'm never leaving.
I'm changing my home address to the hospital.
Everything's happening.
And that's when myself and my colleagues often
get a phone call saying, it's been a
disaster.
And we say, oh, okay, hold your nerve.
Your cells will come back.
It's that kind of divide of an hour
difference in the blood being taken, going onto
(46:16):
a different machine.
We are looking at such tiny amounts of
cells.
It might not be visible and we might
lose them, but actually the next day they're
back up again.
So just hold your nerve, which is a
lot to do with that third week.
And kind of comparative to that, there is
a bit of a NHS line that is,
we plan your discharge before you're ever admitted.
(46:39):
We think about that as we come into
week three, particularly because you're starting to show
that signs are getting better.
Now here in Oxford, we say with neutrophils
of 0.5 and above, you can go
home.
If we forget that you're you for a
moment.
Now, often neutrophils are very pesky and they
tend to stop at 0.48 neutrophils.
(46:59):
And patients say, are we really going to
split it over this tiny amount?
And I say to patients, well, yeah, we
are because actually you've got at 0.5,
a quarter of the minimum amount that everyone
else is walking about with.
So we are attached to that 0.5
for good reason.
It is difficult when patients have said, I've
(47:20):
had a week with no neutrophils at all.
And we're worried about such little amount, but
it is vital because they can come up
and down in that period.
Taking away from just the bloods, we will
look at everything else because we're more than
just a set of blood results.
Each patient needs to be eating, drinking.
If we've had, I know in previous podcasts,
we've spoken about nasogastric tubes or those NG
(47:43):
tubes.
If they've had to be in, and then
really not common, they've got to be out.
They're not your new fashion statement.
They need to go.
You need to be eating through your mouth.
You need to be off antibiotics or on
a tablet antibiotic.
So no IVs through that PICC line.
You've got to be able to walk about.
We're not asking your loved ones and families
to turn into carers at home.
(48:05):
Absolutely.
A family are likely to do a bit
more than they did before, but actually it's
really important for patients to be doing bits
and pieces themselves.
When we get to this point in the
actual transplant, we do what's called another chat
and we do what's called discharge chat.
And that discharge chat is really what to
watch out for when you go home.
(48:27):
And we give you 10 key points, but
actually this workup, we just sort of say
it's going to happen.
And we give a vague kind of roadmap
because of the amount of information we've already
given anymore.
And people don't really know which way's up.
So we do just spread that out a
little bit.
On discharge, we do tell people that you
will be coming up until 28 days after
(48:48):
your cells have been in to your local
hospital twice a week.
And that's often for a blood test and
for any transfusions that you might need.
Often you are going to have a couple
of units of blood and maybe a couple
of units of platelets.
Very normal.
Doesn't really matter if you have more or
less, but as a standard, a couple of
(49:10):
both is fairly where we're up to.
And you'll also have electrolytes as well.
Some of the medicines you're on will drop
your magnesium, might need a certain amount of
it.
So you may well have a drip of
magnesium or something similar.
We have another full month of home each
day, getting better, feeling stronger, being more yourself.
(49:31):
And you really do see that sharp increase
of ability and just feeling a lot better
and being able to do things.
And you will have possibly a bone marrow
biopsy.
I know they're not people's favourite, but they
are really important diagnostically for where we're up
to.
And then from a transplant point of view,
we do a hop, skip and a leap
to six months post transplant, where on discharge,
(49:55):
we've asked patients, GPs to give them vaccinations.
Now we don't test to see whether you've
got those antibodies, but it's really important that
we do have those there.
So a vaccination isn't going to do you
any harm if you already have some.
So we can't prove you lose all your
antibodies, but we also can't prove we keep
(50:15):
them.
So just to be on the safe side,
we do offer vaccinations at the sixth month.
That is a whistle-stop tour or transplant.
It's wonderful to hear you talk through it.
I have a real impression now.
I feel a little bit closer to the
patient's perspective.
I mean that sincerely.
And if you don't mind me sharing, I
think the way you explained that was really,
(50:37):
really informative and helpful.
So thank you.
Do you have any, any top tips for
people who are about to embark on this
that you've, you know, through all your experience
over the years, you think, you know, I
really do need to share that.
Or that's a really handy thing to know
or to understand.
Technology is absolutely your friend.
Your first week, you're going to be bored.
(50:57):
So bring in your computers, tablets, you know,
anything like that to keep you there.
It's also a great lifeline for those community
feelings of having FaceTime and things.
It really does help.
You know, you can FaceTime over dinner and
you can have dinner with your family, which
often takes the pressure away from eating.
If we're a bit distracted, we do tend
(51:18):
to go fork food to mouth a lot
easier.
So technology is absolutely vital.
Keep going.
So each day, just set yourself a target
of I'm going to get washed.
I'm going to get dressed.
I'm going to sit in the chair.
That's 10 minutes of your day.
In the thick of week two, that's an
entire day, you know, a couple of hours
(51:38):
to prep yourself for a shower, half an
hour of standing in the shower going, why
am I here?
Oh, yeah, I was having a shower.
And then that recovery time afterwards.
But it pays dividends.
Then when you're going home, you haven't lost
as much muscle and things that keep going,
keep eating and distract yourself as much as
you can.
So I normally see patients about a week
(52:00):
after Alex has done the talk, the work
up chat.
So I will often say, you saw Alex
last week.
Do you have any other questions?
No, no.
Alex went through absolutely everything brilliantly.
As you can hear listeners, this is an
amazing resource, Alex.
I think you do a huge service to
our patients.
(52:20):
And I hope this pod is a resource
people will find useful because it's still a
standard treatment, the transplant where we're going to
be delving over the next few months into
questions like, well, when will we be able
potentially not to do transplants?
But certainly for the foreseeable future, it's in
and it continues to happen all over the
(52:44):
world.
And I think understanding that journey, Alex, that
you so sort of eloquently described fills people
with confidence.
And yeah, I mean, the side effects can
be really bad, but understanding it's like, oh,
it's day seven.
This is supposed to be happening.
It's rubbish.
And I feel like crap, but I'm not
scared because it's supposed to be happening and
(53:05):
we can get through it.
And as you say, you and other colleagues
will also, you know, come down during the
transplant as well, just to sort of ensure
that things are going as they should.
And, you know, that all important discharge chat
as well, because sometimes people say, right, I'm
going home.
And then you get home.
It's like, oh, this is still going to
still going to take some time.
But as you said, and as we said
(53:27):
on the last pod, people get back to
normal.
Thank you for sharing your insight and experience
with us this evening.
I'm glad I only had to ask you
48 times to come on the pod.
And now rather than talking to patients, you
can just put the podcast on, you can
just press play and, you know, put your
feet up.
And from me and Sally, we'll see you
(53:49):
at the next pod.
We're back with another Myeloma Minutes podcast.
I'm here with my co-host, Sally.
Sally, great to see you.
How are you doing this evening?
Good, thanks, Jam.
I'm going to carry on with the weather
theme of our last part.
I hope everybody enjoyed that.
Excellent.
Here we are, late evening, a typical British
summer.
It's raining outside, but otherwise I am good,
thank you.
But I'm really looking forward to today's podcast
because we've got a very special guest.
(00:22):
We're delighted to have Alex Scott with us
today.
So Alex is one of our wonderful specialist
nurses in the transplant team in Oxford, and
she is an absolutely crucial cog in the
whole journey of our patients as they go
through autologous stem cell transplant.
And she does this for not only myeloma,
(00:42):
but also lymphoma and sometimes other conditions as
well.
Alex, welcome to the Myeloma Minutes podcast.
I only had to ask you 48 times
if you were willing to come on, and
on the 48th time you said yes.
So thank you so much.
I think I'd literally walk past her in
the corridor and say, he's going to ask
me again to come to the podcast.
(01:02):
Can I just walk in the other direction,
take a lift?
But we pinned you down eventually.
Alex, thank you so much.
No, thank you for having me on the
podcast.
Can you tell our listeners a little bit
about yourself, your role that you do now
and how you've got to this point?
So I've always been a nurse in Oxford.
I trained at Brookes, and then I did
two years on the oncology ward, so dealing
(01:23):
with solid tumours.
And I've then done two years on the
hematology inpatient ward, often actually nursing people through
their transplants.
There was this thing called the pandemic that
happened, and I did my masters in the
year of the pandemic, not planned.
And then I joined the bone marrow transplant
team, which is where I've been for the
last four years, looking after, as you said,
(01:46):
autologous stem cell transplants.
The main focus of the pod is going
to be the really important discussion that you
have with our patients as they are on
the cusp of being admitted for their stem
cell transplant.
But you have a much broader role than
that.
You start the journey with the patients around
(02:08):
the time that they are thinking about having
their stem cells mobilised.
There's a huge amount of coordination work that
you do with other members of your team
so brilliantly.
But I think the journey that we've completed
over the last few weeks on the podcast,
we've done the doctory transplant discussion.
This discussion that you have, you sit down
(02:28):
with the patient.
Broadly speaking, when do you do it in
relation to the timing of when people come
in?
And broadly, what is the purpose of this
sort of consultation discussion?
So in Oxford, our role starts when we
get the referral, which is often at the
second cycle of the induction chemotherapy.
And we touch base at that point.
(02:49):
Our role starts right at the beginning.
It goes all the way through the collection
of stem cells, which has already been kind
of discussed, and through those workup tests of
checking the heart and the lungs and making
sure that as a patient you're as well
as possible.
And then once you've collected your stem cells,
we at that point really touch base and
say, you know, we're looking at the next
stage, you know.
(03:10):
And actually up until this point, people haven't
really had chance to talk about the transplant
because with myeloma, the treatment happens so quickly.
So you have four cycles, then you have
your break, then you're collecting your stem cells,
you have your tests, and then suddenly the
actual transplant can feel a little bit like
a black hole.
And so that's when probably our main bit
of contact with patients come in to play
(03:33):
at that point.
So you first reach out to somebody when
they've basically had maybe even just four weeks
worth of treatment.
I mean, how do you broach that subject
and how do people respond to that?
Do you think that, you know, it's easy
to take in at that point in time
or is it just hugely variable and dependent
upon the individuals?
I think it's massively dependent on patients, but
(03:53):
it does give us that chance to have
a bit more of a relationship with patients.
We don't necessarily have a lot of contact
with them at that point because we will
defer to our myeloma specialist nurses, but it
means that we can talk to those patients
that are particularly anxious and they then don't
feel like there's all this information coming at
quite a late point.
(04:13):
And also because you have that gap of
about four weeks where you're not having treatment,
often patients will say, I feel like you've
abandoned me because they're very used to coming
in on those Fridays or that every week.
And they're going, hang on a minute, no
one's going to look at me for four
weeks.
And we say, that's all very planned.
Do not worry.
We haven't forgotten about you.
So it does help us later down the
(04:34):
line, I think.
What a really useful service.
I mean, I suspect that practices might differ
elsewhere, but it's incredibly useful to find that
that's what works best for you guys in
Oxford in terms of building that relationship so
that you're gradually preparing people for the transplant
that might be ahead of them.
Yeah.
And I think what is difficult actually for
you and your team, Alex, is Oxford is
(04:58):
a transplant centre.
So the patients that are Oxford patients and
they start with us, we start talking about
the transplant relatively early because the place where
they were diagnosed and treated is the place
where they had their transplant.
But we take people from all around sort
of our geographical region.
And sometimes you don't hear anything about the
(05:18):
transplant.
It's like, we don't do that here.
You're going to hear about that in Oxford
and you're the first person, right, who is
there then fending all these questions about a
stem cell transplant.
We have an introductory appointment that our consultants
lead, which gives them the basic outline of
the transplant, which I know you've discussed already
in the podcast.
But that's a lot of information for patients.
(05:39):
So then we tend to call about a
week later if we're not at that appointment
to give them our details and to also
just say to them, how are you feeling?
Let's now look at that information and spread
it out across more of a timeframe.
And then once they've collected stem cells, we
then sit down and do what's called a
workup chat.
And we try and do it here in
(06:00):
Oxford before they see the consultants.
And the reason for that is that that
appointment is quite a lot of information that
has to be put on a consent form,
whereas we can put it into a little
bit of real world.
This is what we're expecting.
This is what we're going to do to
stop anything, you know, to minimise those risks
and also just to let patients be a
(06:20):
bit more aware of day to day what's
going to happen and the practicalities, you know,
things to bring into hospital.
We've got a list for them.
And it means that they can then have
a bit of ownership on what they're doing,
which I think it does help those patients
so that when they meet the consultant, they've
got questions.
They know what's happening.
They've got an overview of it.
(06:40):
You give us a massive helping hand in
terms of just making, you know, Jam and
I when we're in clinic, things a little
bit smoother by the sound of it, but
also say the patients who then come and
see us are armed with the questions which
are most important to them and also kind
of filling in the gaps for things that
we would forget about, which you know through
(07:00):
your experience are so important to everyone going
through this process, but perhaps isn't quite on
the radar for Jam and I in the
same way.
Do you think that's a fair point?
I think it is.
Absolutely.
And I think it definitely supports families as
well, because there are questions that they'll ask
me that they definitely wouldn't bring up in
a consultation.
Visiting is vitally important.
It's one of almost the first things we
(07:21):
speak about, because people do have an idea
that actually when their loved ones are in
hospital, they're going to be kind of sealed
off in a little room.
No one's going to go near them, hazmats
are out and everything else.
And we say, well, actually, that's not the
case.
Your loved one needs family around you.
So absolutely, it's great to visit as much
as you can.
It kind of deals with some of the
(07:43):
practicalities that wouldn't be asked otherwise.
And it puts the transplant into more of
a day by day event.
And we do talk about the risks, which
means that often patients are thinking, okay, we
know that that's going to come up in
the consent form.
And it doesn't take them by shock, which
I think is quite important.
And also, it's given them time to absorb
(08:04):
that very important information.
And the time between your chat with them
and when we consent, I think is a
very valuable few days, often a week or
two, which allows them to really, I think,
understand in their mind what's going to happen.
I personally really enjoy finding out from patients
how much they've read, because there are fantastic
(08:25):
resources out there.
Some patients like to read absolutely everything.
Other patients like to know nothing.
So I do find out from them first,
how much have they read?
Because that can really help.
And also find out from them, how are
they feeling?
They've had a hefty treatment so far.
Often the actual process of collecting their cells
can bring up quite a lot of emotions
(08:45):
for them.
And they've been off treatment.
So often they don't really have a lot
of side effects.
They're actually feeling pretty well.
And so to come into something where they
are aware they're not going to feel so
brilliant, that can bring up quite a lot
of emotions.
They've had chance to think about their diagnosis,
which up until this point, they really haven't
had that chance.
(09:06):
Hematology moves so quickly, it does make it
difficult for them.
So I first of all start with that.
I then talk about dates.
Dates are vital.
We plan our lives around dates.
So they need to know when they're coming
in.
We aim as much as we can to
get people in between four and six weeks
after they've collected their stem cells, they come
(09:27):
in either via our ambulatory care or onto
the ward.
Part of that is fitness.
Part of that is generally how they feel
and also their family setup.
So they do need to be within an
hour of Oxford to come through ambulatory care.
And they need to be fit and well
enough to do a walk or have somebody
to drive them in and out.
But we talk about ambulatory care as a
(09:49):
possibility.
We then count in minus days.
So day minus two is admission and that's
the insertion of their PICC line, which is
put in very, very well by our vascular
access team here in Oxford.
It goes in on the day unit and
it is a line that goes in the
upper part of their arm.
We have a lovely juicy vein up on
(10:11):
our shoulder and it goes into there and
there are great advantages of the PICC line.
As you've both kind of said, we can
take blood out of it.
We can give products, so anything they need,
anti-sickness or things like that, we can
do.
And it protects our vein.
Unfortunately, from a haematology point of view, we're
not born with the lines in.
So there are always a few risks.
(10:33):
One of them is you can get a
blood clot on the line, which would mean
that it would be hot and quite painful.
And ultimately, we'd take that line out if
we had to.
You can get an infection in the line.
It's not common.
Haematology are very used to these lines.
We deal with them a lot.
So we don't get many line infections, but
it is a risk and ultimately we'd remove
(10:53):
that line.
And the last risk is that you can
kind of find that it actually blocks a
bit.
So we put some medicine down the line
to stop that from happening, which actually works
really well here in Oxford.
Great.
So you give them the full sort of
context about the PICC line and I'm guessing
the kinds of things people ask is like,
can I walk around?
Can I have a shower?
(11:14):
Is it painful going in or coming out?
And I guess the answer to both of
those is no, thankfully, generally.
Speaking to some of my colleagues in other
places, we're a bit unique in this, is
we actually say to people, make sure you're
using that arm.
Actually, it's really good to put the line
in your dominant arm.
The more you use your arm, that line
works so much better.
We give you lots of anesthetic, so it
(11:36):
actually doesn't really hurt.
You probably feel a bit of poking and
prodding, but there shouldn't be anything sharp there.
And it goes in really nicely.
I often make the joke that our line
team come in dressed as surgeons, which I
always think is slightly disconcerting, but it's vital
for the sterile nature of it.
But actually, I reassure patients that we're going
(11:56):
to have this in for three to four
weeks.
Often we don't send people home with them.
The lines can stay in for a lot
longer.
So actually, they're only in for a little
tiny portion.
They do pay dividends when they're in.
It's a lot nicer than those little cannulas
they can have.
And often our patients have had experience of
that.
And we say, as well, one less needle
is always a benefit to them.
(12:18):
And then we say, once you've got your
PICC line in, you might feel a little
bit bruised later on in the day, often
paracetamol, but most of our patients don't need
anything.
And then if they're coming onto the inpatient
ward, they'll wait for the bed to be
ready.
If they're going on our ambulatory care, they'll
see our doctors, they'll see pharmacy, and then
they'll head off back home or to the
flat.
I'm going to remember so much of what
(12:39):
you said and utilise it myself.
But can you just talk us through ambulatory
care versus the inpatient stay?
What exactly does ambulatory care mean?
And who may or may not be a
good person to use that service?
Ambulatory care is a service we have here
in Oxford.
It's a day unit, but on a much
(13:00):
smaller scale.
The advantage of ambulatory care is that you're
not an inpatient on a traditional ward for
the first week, you're always going to get
two weeks in hospital.
That's always going to happen, however you do
it.
But actually, it is nice to have that
first week when you're feeling really well, actually,
(13:20):
either at home or in our on-site
flat.
You also need to have somebody who can
be with you if you're staying at home.
So if you were to get ill overnight,
you would be coming to our haematology ward
and you've got to have someone who can
drive you.
I say to our patients, it's a gut
feeling, okay?
So I've already looked at people, I've already
(13:40):
had a little chat with my team and
said, I don't think this patient is right
for ambulatory care and we might not raise
it.
If we raise it, I say to our
patients, think of it as a gut reaction.
Some people are horrified at the idea and
if they are, that's not right for you
and that's okay.
But some people are really keen on it.
So it's a really great provision to have
and it also means we're not waiting on
(14:01):
beds and things in wards, which always is
better.
Brilliant.
Thank you so much.
So you can kind of get going sooner,
maybe, because like you say, you're not waiting
for beds and then the person comes in
when they really need to be in, which
sounds like the perfect solution, like you say,
for the right person.
Yeah.
So it's a way of our fittest patients
in a way with appropriate geography and people
(14:24):
around them and ways of ensuring that if
they do get unwell, they can get into
hospital, keeping them out for longer, which I
think absolutely improves the whole experience of the
transplant.
But as you say, Alex, it's not for
everybody.
It's a great provision to have and we're
really lucky here in Oxford to have it,
which is fantastic.
So once you've had your pick line in,
(14:45):
you're either going into an inpatient ward or
you're going back to either the flat on
site or your own home, depending on geography.
Then on day minus one, you have your
melphalan.
It is a very strong drug.
It goes into your system and it goes
around your body and then it leaves out
your kidneys and your urine within 24 hours.
(15:08):
What it's doing when it's going around your
body from your pick line is it's touching
all your cells and then causing a chain
reaction within that cell that leads to that
cell's death.
So with melphalan, you do get two waves
of side effects.
So you get the ones that are on
the day and that's mainly, unfortunately, nausea, very,
very occasionally vomiting, but we don't see much
of it at all.
(15:29):
And so we have four anti-sicknesses that
work really well together.
You have ondansetron, which most of our patients
have had before.
Dexamethasone, nearly all of our patients have had
it.
That's your steroid.
They've had it in huge doses.
So patients are often a little bit horrified
when I say we're going back onto dexamethasone,
but I say actually be aware you've had
it in big doses.
(15:50):
This is a little tiny dose.
You're only having four milligrams and actually it's
really well tolerated.
You don't get the side effects that you've
often already experienced.
And then there's two drugs that are new
to our patients.
So you have aprepitant and you also have
olanzapine.
Now, aprepitant and olanzapine, I always explain it
as being the next rung in the ladder.
(16:10):
So you've got ondansetron and dexamethasone, and then
you've got olanzapine and aprepitant.
For about 90% of our patients, those
four drugs working together manages all of our
nausea.
If you're in that 10% that do
feel nausea, tell us because there's always something
else we can give.
There are no prizes for being a martyr.
(16:33):
There's no prizes for not really telling us
because actually I often spin it with our
patients and say, actually, you're helping us if
you tell us early.
You're not a burden, but tell us early
because it gives us time to try something
and then say, did that work?
Did it not?
Otherwise we end up giving you loads of
anti-sickness.
(16:54):
It gets rid of your nausea, which is
brilliant, but we have no idea what worked.
So the next time you get nausea, we
have no idea what we're reaching for.
So it really helps to deal with a
little bit of nausea rather than waiting until
it's a lot more.
The same goes for pain.
When you're on your melphalan, as you've both
said in the previous podcasts, we do have
(17:15):
ice lollies and ice cubes that we have
in Oxford.
So you get a little wine cooler bottle
that comes and you have ice cubes and
rocket lollies.
And the idea is you keep your mouth
as cold as you possibly can.
So we need it on your tongue, but
also moving around your mouth to really keep
your mouth as cold as you can.
(17:36):
Now, ideally we have 15 minutes before the
melphalan, the half an hour that the melphalan
is running and 75 minutes afterwards.
So all by the shouting, it's two hours
of keeping your mouth as cold as you
possibly can.
It's a lot.
We know it's a lot.
We always say we hope for a heat
(17:56):
wave on that day.
We're very British, but often we won't have
that.
So we say wrap up warm, but five
minutes is better than nothing.
If you can do five minutes, it will
pay dividends in your second week.
So whatever you can do is better.
75 minutes afterwards.
75 minutes.
I wasn't aware of that.
I mean, that is, I mean, I'd need
a number of different brands.
(18:19):
You know, I'd need calipos.
I'd need different types of rocket lollies, maybe
flavoured ice, slushies.
I think we need to think about the
lolly menu in more detail.
I mean, that's phenomenal.
It is a lot.
I mean, I'm guessing not many people manage
that because that is actually very hard and
actually probably ends up being actually quite painful
(18:40):
as well.
A lot of our patients will manage it.
A lot of our patients do manage it.
They do.
The gentlemen tend to have a lot of
competition.
So if you have a few of them
that are around about the same time, there's
a lot of, I got through 40 ice
lollies.
And you're like, oh, good, great.
So there's a bit of competition there.
Our lady patients, to be slightly stereotypical, do
(19:02):
tend to just say, I just got through
it.
But actually in Oxford, we're one of the
only centres who use this oral cryotherapy and
actually provide our own ice lollies.
Other centres, you have to provide your own.
So there you go, Jam.
You'd be able to get whatever ice cream
you'd want there.
There's a little business in there somewhere, a
little sort of ice cream van driving around
(19:24):
various wards of transplant centres.
There you go.
But no, that's really interesting.
But as Sally did say, when we were
talking about it in the last pod, it's
one of these things that most centres do
now, but I think it's not completely universal.
And we made it very universal, I think
about three years ago.
Before that, it was quite patchy actually, to
be fair.
But we have made it more universal.
(19:45):
And anecdotally anyway, with melphalan, we see very
little higher oral mucositis now, like genuinely very,
very little.
It's made a big difference.
We're not seeing the malfunctions that we were
seeing before.
We're not seeing that amount of really struggling
to swallow your own saliva that we've seen
in previous years.
(20:06):
So it has been absolutely groundbreaking for us.
And we have seen huge impact from it.
And then after your melphalan, you will have
quite a lot of fluid, which just really
helps your kidneys just really flush out that
melphalan.
It is really important to keep drinking.
We will keep providing you with water just
to make sure you're flushing out those kidneys
really well.
(20:26):
You then either go back to your flat,
home, or you're on the ward.
Typical is the next day is the return
of your stem cells, which is your day
zero.
Sometimes you might have an extra day just
to help your kidneys wash that out fully.
Because what we want to make sure is
that all of the melphalan is out before
we put in your very precious stem cells.
Now, your stem cells that were frozen, they
(20:48):
were put into different bags.
So you've had them collected in one bag
that you saw.
When we froze them down, they were put
into different bags.
And your consultant will decide exactly how many
bags you're going to have.
We will tell you how many bags you're
having.
And typically, it's only one day of your
cells back.
It's a lot quicker to give them back
than it is to take them.
Sometimes if you have got a lot of
(21:09):
bags, we might put them over two days
just to stop any nausea really happening.
Because there's a preservative in there that can
cause a bit of nausea.
But what will happen on your day zero,
you do get your second birthday.
So you get to join the royal family
only on birthdays.
We're not promising anything else.
But you get this cell return.
Now, your cells will come in a big
(21:29):
shipper.
Think R2D2, but without the skis on the
bottom.
And that's a big shipper that will come
in.
And that's filled with liquid nitrogen and your
bags of cells.
You'll have your fluid in the morning.
And then normally about lunchtime, we start giving
you your cells back.
So what will happen is we'll ask your
name and date of birth more times than
you've ever been asked before.
(21:50):
So by the end of your cells, you'll
really know that.
So that'll be okay.
We don't mean to be rude.
But I give cells and I know I
sort of am rude.
There's myself as a nurse and a physician's
associate in Oxford, or in our other centers,
it might be another nurse who then basically
read a load of codes to each other.
And that makes sure that the cells match
my paperwork matches the patient.
(22:11):
We then spin around like we haven't just
been being rude.
And we say, are you ready?
And patients go, yeah, sure.
It's fine.
And those cells come into our water bath
that then defrosts them.
And then it goes in via your PICC
line.
For the most part, you just sort of
sit there.
It's 10 minutes, 10 to 15 minutes per
bag.
(22:31):
And we get them in as fast as
we possibly can.
The defrosting will take about three to five
minutes of actually being in the water.
And we're watching for those ice crystals to
go.
As soon as that last ice crystal is
gone, the physician's associate or nurse will take
that out of the water, give it a
clean with alcohol externally, and then hand it
to the nurse.
(22:52):
And the nurse will then hang it and
attach to your PICC line.
Once it's attached to your line, it's 15
minutes or as quick as we can.
So often it's a lot less than that.
And we'll make sure that those cells go
in nicely.
The nurse that's giving them will be constantly
asking you, how are you feeling?
Are you feeling okay?
And a lot of our patients feel very
(23:13):
like it's a huge anti-climax.
They've waited so long for these transplant.
They know it's not a surgery, but they
kind of go, is that all I was
waiting for?
And you go, yeah, yeah, that was it.
But that's okay.
We like anti-climaxes.
It means everything's gone very smoothly.
So Alex, a really quick question.
It's so interesting to hear you say this.
(23:34):
This is generally going through our minds.
So if you're waiting for those ice crystals
to defrost, when it goes in, is it
not a tiny bit chilly?
And also really obvious question here, but what
does a bag actually look like?
What colour is it?
I mean, you know, what can you see
there?
Are you checking it?
It's just, yeah, we're not really part of
this process.
So yeah, I'd welcome that knowledge please.
(23:56):
So we warm them slightly so that it's
not cold because you don't want the vein
to kind of go too cold.
However, it's a balancing act because the preservative
that's in there will keep working even when
it's hung up.
So if you leave it for too long
in the water and you heat it too
much, those cells will clump.
(24:17):
So it's a balancing act.
You don't want to heat them too much
and then you're, it's going to be harder
for the nurse to infuse those, but you
don't want it to be too cold for
the patient.
It's normally about a hundred mils in there
and it's often a straw colour.
When you've collected your cells and you've had
your harvest, you can look at the big
(24:37):
bag and it will probably look very kind
of like a sunshine yellow colour.
And actually it's probably a bit darker when
we defrost.
And that's because we've mixed that preservative in.
And you've got a bit of plasma in
there as well, just to make sure those
cells are really nice.
Now, whilst patients are sat there, we do
say visitors can be there if they want
to.
And what will happen is they just go
(24:59):
back to back in those bags.
Now, very occasionally you can get a bit
of a reaction and that's to that preservative.
So you can get a little bit short
of breath.
You can get a bit itchy.
You can get a bit scratchy.
You can get a few reactions to it.
Now we do give medicine to stop that
before we give the cells and that's paracetamol,
(25:20):
hydrocortisone and chlorphenamine, so pyriton, essentially.
And that really just settles our body down
so that we're not going to react.
Now, if you've ever reacted to a drug
before, often everyone stops.
We disconnect that drug and it's all a
lot of action.
When you have your cells, we know that
once those cells are inside you, you'll stop
(25:42):
reacting.
So actually, we kind of just say, let's
just get on with it.
Let's not kind of prolong this.
We know you're safe.
We are here to look after you, but
let's get these cells in.
But I do say it's very rare you
get a reaction.
Very rare, indeed.
And afterwards, as well as feeling very, very
tired, because pyriton does make you quite sleepy,
(26:04):
you often get quite a lot of emotions
because it is that day of, you've been
building up to this and it's almost a,
oh, I've done it now.
And it can be a little bit of
kind of an emotional day and it can
be a bit almost disappointing.
And so we do tell people about that
just so that they're aware.
And so family can kind of come around
(26:24):
that patient and say, hey, we expected this.
This is OK.
I want to come back and refer back
to our previous podcast and the other food
chat that we had and the whole sweetcorn
sort of smell that we spoke about.
Where are you with that?
Can you smell it and do you think
it smells the same?
And also, when does that start to happen?
Do you like sweetcorn?
I thought you were asking about like, do
(26:45):
you like sweetcorn?
What are your other vegetable preferences?
Yeah, I do like a bit of sweetcorn.
I now can't smell the cells at all.
Possibly if I've just been on annual leave,
I'll get a little whiff of them, but
I'm around them so much I don't really
smell them.
I do warn families and say to them,
be aware that your loved one is probably
going to say they stink.
(27:07):
You're going to say they stink.
And they're not actually being horrible.
It's just they can smell that sweetcorn.
The patient can't.
So yes, it's interesting the wider team as
they walk down the corridor, they can always
tell you which room the cells have been
in because of that very well-known smell.
And once they've had their cells, you've got
(27:27):
about three days of feeling absolutely fine.
So up until day plus three, so three
days after your stem cells have been given,
you're feeling absolutely fine.
Progressively as you get through that, you're starting
to just feel a bit more tired and
a bit kind of, I can't really be
bothered to do anything.
It is really important that you keep pushing
through and doing things and getting all washed,
(27:48):
dressed and ready.
And then day plus four, day plus five,
that's when that second wave of those melphalan
side effects really start to show themselves.
It really always starts with you just feeling
really thirsty.
So you wake up and you think, I'm
completely parched.
I really need a drink.
And you'll have a big drink.
And 10-15 minutes later, you're going, I'm
(28:10):
really, really thirsty.
That's the start of things.
Now, I tend to say to my patients,
I go top to bottom in side effects,
you'll get a bit of all of these.
What we don't know is which is going
to affect you the most, okay?
Hair will fall out.
So your hair and any facial hair does
fall out during the transplant.
It happens a bit later.
(28:32):
It's on to kind of the end of
the second week that hair starts to have
those changes.
But I talk about it now so I
don't forget more than anything.
We do say to our gentlemen, please don't
wet shave because if they nick themselves, it's
an impressive amount of blood.
And often, you know, a couple of days
of not shaving and your hair will be
falling out anyway, so it'll be okay.
(28:52):
You do get dry mouth, very occasionally sore
mouth.
It's not too bad.
Dry throat, sore throat, a feeling of if
you've got a sore throat, you can swallow,
but you've almost got to work a bit
harder to swallow.
And you can sometimes get kind of a
shoot of almost electricity pain with that swallow.
You can get heartburn, indigestion, appetite completely goes
(29:14):
and your taste really changes.
Food that isn't lumpy can feel lumpy.
So a yogurt, which is normally a very
smooth feeling, can feel like it's more lumpy
and hard to eat.
You can get a feeling of rolling in
your tummy, nausea, very occasionally vomiting.
We don't get a huge amount of it,
(29:35):
but there is that as a risk.
And from your belly button to the top
part of your pelvis, that real bottom part
of your abdomen, you can get some quite
intense cramping sensation, unfortunately diarrhea.
We're very British.
We don't like to talk about poo.
I talk about it quite a lot in
my job.
So I'm a little bit immune to that,
but we do say everyone's going to get
(29:56):
diarrhea.
It's not pleasant, but please tell the nurses,
because what we'll do at that point is
we'll take a sample to check there's not
a bug in there.
As soon as we know that there's no
bug in that diarrhea, we can give medicine
to stop it, which is loperamide or imodium.
And it works very, very well.
(30:16):
The thing to remember, especially with the diarrhea,
is that your bowel, all the way from
your mouth, all the way down to your
back passage, is going to be pillar box
red.
Subconsciously, all of us will think, if I
don't eat, if I don't drink, I won't
have diarrhea.
Unfortunately, that is not true.
And we just have to manage that situation.
(30:38):
In other things to be aware of, so
this week too, we're very reactive to what
the patient's showing at that time.
So if they're in pain, we'll manage the
pain.
If they feel sick, we'll manage it.
One of our key teams that will also
help us with our symptom management is called
the hospital palliative care team.
Palliative care is associated with death and dying.
(30:59):
That is not the case with the transplant.
They are experts in managing symptoms.
And so if we do have a situation
where someone's really feeling nauseous or they're in
pain, we may bring them in just to
give us a bit of advice.
I warn people more for their family's benefit
because it's normally a bit of a perfect
storm.
(31:19):
Patient's not feeling so great, so they're not
reactive on their phone so much.
So then families come visit, they walk onto
the ward as the hospital palliative care team
are leaving their loved one's room and it
can cause coronary inflammations.
So we do just let people know about
that.
During the second week, our pick line will
be used quite a lot to give any
(31:41):
medicines that we need.
The other thing that we do need to
talk about is food, which I know you
have raised in podcasts before.
As we sit here now, we have a
basic amount that our body needs for us
to do the work it needs to do.
My appetite far exceeds the calories that I
need for my body to work.
So it's fine.
But in a transplant, you're looking at needing
(32:03):
so many more calories to repair and let
your body recover from that melphalan that we've
given.
Your body's running a marathon, so we've got
to fuel it for that, despite the fact
you don't feel hungry, nothing really tastes right
and you've got a bit of nausea.
So we do have our dietitians that really
(32:24):
help us with that and it is often
a case of we have to eat for
the sake of eating.
Your food is another medicine that we will
give you alongside everything else.
Alex, when you talk about food, I'm guessing
one of the first things people say is
that I just can't cope with hospital food.
It actually makes all those symptoms that you've
(32:45):
just been talking about much worse.
How do you counsel people about bringing snacks
and food in or people cooking food at
home or if they don't just feel like
eating for a couple of days, is that
a big deal?
Because talking about nutrition and food is something
that comes up a lot during the transplant,
isn't it?
It is.
And it's because you have no hunger.
(33:07):
So I tend to say to patients, we
are a little bit the reverse Weight Watchers.
So we need raw calories into you.
So if you know you can always eat
jelly babies, bring in jelly babies.
That'll be great because you'll think, oh, I'll
just have a couple.
We're less concerned about in that second week
(33:28):
having set meals.
We almost really want a bit of grazing
and a bit of not thinking about food
as a burden because that takes a lot
of time to overcome that.
So we really want to support people into
eating as they can without making it a
huge mental battle for them.
(33:49):
And it's funny because almost sometimes when I'm
doing the round for people on transplants, I
was rounding today and Sally, I don't know
if you feel the same, almost with the
myeloma transplants, if you've seen what people have
had for breakfast on a certain day, in
a way that gives you a lot of
confidence of how they are.
So it's like day 10 or day nine,
you've eaten two pieces of toast and toast
(34:10):
is not always the easiest thing to kind
of, you know, it's quite dry and actually
get it in.
It kind of almost gives you clues that
actually they're fine.
So it's one of those things that I
think gives you a lot of information.
Actually.
Yeah.
I mean, I completely agree.
I think so often when we're doing the
ward rounds, we're looking after the patients whilst
they're in hospital.
Similar to you guys, Alex and the nurses
(34:30):
on the ward, we ask a lot of
questions about, have you eaten today?
Are you drinking enough?
Have you been to the loo?
What's your poo look like?
Are they crazy on the Bristol stool chart?
You know, if there's an appetite for it,
but yeah, so, I mean, it is actually
incredibly important and these questions aren't, they aren't
just for the sake of it.
(34:51):
And because we have an obsession with certain
parts of the bowel, it does actually tell
us an awful lot about how someone's faring,
doesn't it?
Yeah, absolutely.
Home cooked food.
We all prefer the food that we have
at home to a hospital.
Home cooked food is absolutely fine, but there
are things that we need to be aware
of with it.
So we don't want rice being reheated.
And it is those real basic things that
(35:11):
we've done for so long when we had
a loved one on treatment.
It is a little bit second nature, but
it's just making sure that that food is
nice and piping hot and stored correctly.
In terms of the, I mean, this is
a huge other area.
So I understand that we've got a limited
amount of time.
The nootropenic diet and the fact that you
may talk patients through what they perhaps should
(35:32):
or shouldn't be having whilst they're in hospital
as well.
Could you just quickly summarise that for us
perhaps?
So I tend to say very much to
patients, make sure that your hot food is
hot, cold food is cold.
The best before and expiry dates really do
matter.
You're not having your soft cheeses.
You're not having anything that's raw.
(35:54):
So everything needs to be cooked really nicely
and really kind of fully.
Don't have any steaks that are slightly rare.
It is part that gets a little bit
of a giggle.
Where do people get their eggs from?
If you have red lion egg from the
supermarket, you can have runny eggs.
If you don't and you get them from
a farm, we do say they do need
to be hard foiled.
(36:15):
But just to recap the logic behind that
is then if your food isn't heated properly
or food that should be cold gets a
bit warm, there might be some bugs within
that food that if you then swallow them,
they go into your tummy, could just make
the situation a little bit worse.
Is that how you understand it?
Essentially, yes.
Guts are full of bugs.
We have a full zoo in our body
(36:36):
which our immune system is sitting on top
of.
Now this is the other part of week
two is that immune system goes.
So we have to be aware of all
those bugs, not just a bad bug.
A naturally kind of good bug is also
a bug and our immune system sits on
top of those.
And in week two, when this immune system
(36:58):
goes, one of these bugs that are in
our gut are going to spike up because
there's nothing stopping them and they're going to
reproduce and they're going to get more.
And what happens and what all of us
are going to be watching out for is
for a temperature.
It's not the only sign of infection, but
it is kind of one of the main
ones.
And at that point, often we will be
(37:18):
walking around the ward and say, oh, you'll
get a temperature today.
Or we think you'll get a temperature today.
What happens when that temperature happens is we
will take some blood out of the pit
gland.
We'll take some blood out of a vein
as well.
We'll take a urine sample.
We'll take a stool sample if you've still
got diarrhea and we'll take a swab of
your throat.
And what that is, is to isolate what
(37:40):
bugs are there.
Now, for the majority of our patients, we
won't find a bug because the tests that
we do don't show the bugs that are
naturally in us.
Because otherwise all of our tests would be
positive because we've all got these bugs and
you start on a really strong antibiotic.
What that does and the aim of it
is to come in and be a temporary
hat on these bugs.
(38:02):
Often 24, 48 hours later, there's another part
of your blood that looks at infection and
that level is nicely falling.
Some people don't have that level falling and
we might need to switch to another antibiotic.
Again, that's very normal.
And 24, 48 hours later, that level in
your blood that's looking at infection is coming
(38:25):
down nicely.
With that, patients are feeling better.
Now, I do want to preface this next
bit with, remember we're doing this to put
your myeloma in the best position so you
get the longest time without having to have
lots of different treatments.
This is kind of the bad and the
ugly side of transplant.
And it's the risks that we know are
(38:46):
there.
We talk you through real world kind of
how this happens, but it's remembering that these
risks are small.
So for those patients that have had two
rounds of antibiotics and this still isn't managing
their infection, they've often still got diarrhea.
So we're losing a lot of fluid.
So we're sweating, we've got diarrhea.
Generally, just everything's working very, very hard.
(39:09):
A decision is made by the whole team
that the ward is no longer the safest
place for this patient.
And that's when we go to intensive care.
Our intensive care ranges from literally giving a
drug that we can't give on the ward
and you might stay in intensive care for
24 hours, all the way up to multiple
organs being supported by machines and that patient
(39:30):
being put to sleep to let their body
recover.
That risk is little.
So here in Oxford, we have a less
than 10% risk of going to intensive
care.
That means a more than 90% risk
that you won't be going.
The provision is there should we need it.
The other risk is for those patients that
have gone to intensive care and are finding
(39:52):
that no matter what we do in terms
of antibiotics and things, we can't get on
top of that infection.
And that's where a risk of death happens
from the transplant.
Now again, that is a really small risk
and the exact percentages would be given more
by the consultants, but we say it's a
less than 5% chance, more than 95
(40:13):
% chance that you're going to be okay.
So it's really important looking at those figures
kind of both ways because they are scary.
So Alex, those figures may have been mentioned
in passing by consultants as they've talked about
stem cell mobilisation and other aspects of the
process of getting to the transplant.
But to be fair, not always.
(40:34):
It is of course in the literature, but
as you say, some people won't have read
it and you may be the first person
who really goes into what you've just said
so eloquently about intensive care and death.
So in all the years you've been doing
this, how do people react or is it
just incredibly variable from complete sort of shock
(40:57):
or disbelief to like, yeah, no, I get
that and I just have to roll with
it?
What sort of things have you seen?
For the most part, it is a lot
of shock because we're putting a figure on
that and we're also saying it very clearly
about these are the risks.
Patients will often say, I knew that there
was a risk, but I don't like to
(41:17):
think of it.
And that's one of the reasons that's quite
nice the way that we're able to talk
to patients first is that we can give
that space where in a consultation, where you're
doing a consent form, it's written there in
black and white, you know, risk of death.
So it's actually nicer just to talk to
people first and say, actually, this is what
we're expecting.
This is how we're going to minimize those
(41:39):
risks as much as we can.
Often as well, we will also bring in
just making sure that wills or any paperwork
have been done.
And often I do say, we are not
expecting things to happen.
We are not expecting you to need this,
but it's important that this is managed so
(41:59):
that your loved ones will also know what
you want out of this.
We always give a little bit of space
to let that breathe and to actually say,
you know, how are you feeling with that?
There's often quite a lot of emotion.
There's often quite a lot of tears, but
I think it plays it very openly.
And I do say to people, I've raised
this.
(42:20):
So now if you need to talk about
it, you're not trying to get that into
a breakfast conversation because it doesn't happen, but
actually you can say, well, Alex said, and
then I'm almost the bad guy in it,
which is absolutely fine by me.
We then spin it and we say, well,
actually, why would we be in the earlier
group?
And why would we only expect one antibiotic
(42:40):
when there is this huge other risk?
And we do say, well, actually it's about
how people have managed their treatment before.
Little bit basically, we say that it's about
if you've had lots and lots of antibiotics,
those bugs in your gut know how to
move around to that antibiotic.
A lot of our patients are lucky and
haven't had to have lots of antibiotics.
(43:01):
So when that antibiotic comes in, the very
strong one in the transplant, it will be
that hat rather than becoming almost a cat
and mouse game where these bugs just know
how to get around it and reproduce.
And then we can say, go back to
week two, you've had these horrible side effects,
and then we'll actually look at how things
(43:22):
change in week three and how things get
better.
You get the raw emotion.
And I was just thinking out of the
hundreds of patients I have consented for a
transplant, I haven't had tears once during the
consent process.
And I think that's because you and your
colleagues take a lot of that raw emotion
through this discussion that you're having.
(43:42):
And these are difficult things to talk about,
but they're so important.
Like, have you done your will?
Are your affairs in order?
I mean, it's absolutely crucial.
And thank you for spending some time talking
about them.
It's really important.
It gives people that opportunity to raise it.
(44:03):
Because often families have said to us, well,
actually, I don't want to ask about the
will, because that's almost putting a negative spin
on it.
We just try and say, well, actually, we
should all have wills in place.
We should all have things there.
And actually, this is quite good point to
just check those things and see if things
have changed and need slightly updating as well.
As we then come into our third week,
(44:26):
what will happen is our patients will wake
up one morning and they'll go, I feel
different.
I don't feel bad.
I don't feel ill.
I feel different.
And the doctors come in and they tend
to say, you have counts.
And patients go, what's that then?
And we say, those neutrophils that start really,
really high in the first week, drop and
(44:47):
spend the majority of second week on the
floor and not there, have just started to
show themselves.
We're talking 0.02 for neutrophil.
It's a great day.
Everyone has a fantastic day because they can
see that things are getting better in themselves.
It's extraordinary how little neutrophils we need to
(45:10):
feel better in ourselves.
Neutrophils are vital.
And actually over the next few days, patients
will steadily rise.
Then what tends to happen is patients are
feeling very, very good and they're feeling like,
okay, I'm starting to feel better, still very
fatigued, still feeling quite delicate, but actually comparative
(45:32):
to how they felt the week before, they
feel much better.
And nearly always, patients will find one morning,
the doctors walk in and they say, what
are my counts today?
And the doctors are like zero.
And at that point, the novelty of being
in hospital has well and truly worn off.
Patients find that so difficult because it's that
(45:54):
I'm never leaving.
I'm changing my home address to the hospital.
Everything's happening.
And that's when myself and my colleagues often
get a phone call saying, it's been a
disaster.
And we say, oh, okay, hold your nerve.
Your cells will come back.
It's that kind of divide of an hour
difference in the blood being taken, going onto
(46:16):
a different machine.
We are looking at such tiny amounts of
cells.
It might not be visible and we might
lose them, but actually the next day they're
back up again.
So just hold your nerve, which is a
lot to do with that third week.
And kind of comparative to that, there is
a bit of a NHS line that is,
we plan your discharge before you're ever admitted.
(46:39):
We think about that as we come into
week three, particularly because you're starting to show
that signs are getting better.
Now here in Oxford, we say with neutrophils
of 0.5 and above, you can go
home.
If we forget that you're you for a
moment.
Now, often neutrophils are very pesky and they
tend to stop at 0.48 neutrophils.
(46:59):
And patients say, are we really going to
split it over this tiny amount?
And I say to patients, well, yeah, we
are because actually you've got at 0.5,
a quarter of the minimum amount that everyone
else is walking about with.
So we are attached to that 0.5
for good reason.
It is difficult when patients have said, I've
(47:20):
had a week with no neutrophils at all.
And we're worried about such little amount, but
it is vital because they can come up
and down in that period.
Taking away from just the bloods, we will
look at everything else because we're more than
just a set of blood results.
Each patient needs to be eating, drinking.
If we've had, I know in previous podcasts,
we've spoken about nasogastric tubes or those NG
(47:43):
tubes.
If they've had to be in, and then
really not common, they've got to be out.
They're not your new fashion statement.
They need to go.
You need to be eating through your mouth.
You need to be off antibiotics or on
a tablet antibiotic.
So no IVs through that PICC line.
You've got to be able to walk about.
We're not asking your loved ones and families
to turn into carers at home.
(48:05):
Absolutely.
A family are likely to do a bit
more than they did before, but actually it's
really important for patients to be doing bits
and pieces themselves.
When we get to this point in the
actual transplant, we do what's called another chat
and we do what's called discharge chat.
And that discharge chat is really what to
watch out for when you go home.
(48:27):
And we give you 10 key points, but
actually this workup, we just sort of say
it's going to happen.
And we give a vague kind of roadmap
because of the amount of information we've already
given anymore.
And people don't really know which way's up.
So we do just spread that out a
little bit.
On discharge, we do tell people that you
will be coming up until 28 days after
(48:48):
your cells have been in to your local
hospital twice a week.
And that's often for a blood test and
for any transfusions that you might need.
Often you are going to have a couple
of units of blood and maybe a couple
of units of platelets.
Very normal.
Doesn't really matter if you have more or
less, but as a standard, a couple of
(49:10):
both is fairly where we're up to.
And you'll also have electrolytes as well.
Some of the medicines you're on will drop
your magnesium, might need a certain amount of
it.
So you may well have a drip of
magnesium or something similar.
We have another full month of home each
day, getting better, feeling stronger, being more yourself.
(49:31):
And you really do see that sharp increase
of ability and just feeling a lot better
and being able to do things.
And you will have possibly a bone marrow
biopsy.
I know they're not people's favourite, but they
are really important diagnostically for where we're up
to.
And then from a transplant point of view,
we do a hop, skip and a leap
to six months post transplant, where on discharge,
(49:55):
we've asked patients, GPs to give them vaccinations.
Now we don't test to see whether you've
got those antibodies, but it's really important that
we do have those there.
So a vaccination isn't going to do you
any harm if you already have some.
So we can't prove you lose all your
antibodies, but we also can't prove we keep
(50:15):
them.
So just to be on the safe side,
we do offer vaccinations at the sixth month.
That is a whistle-stop tour or transplant.
It's wonderful to hear you talk through it.
I have a real impression now.
I feel a little bit closer to the
patient's perspective.
I mean that sincerely.
And if you don't mind me sharing, I
think the way you explained that was really,
(50:37):
really informative and helpful.
So thank you.
Do you have any, any top tips for
people who are about to embark on this
that you've, you know, through all your experience
over the years, you think, you know, I
really do need to share that.
Or that's a really handy thing to know
or to understand.
Technology is absolutely your friend.
Your first week, you're going to be bored.
(50:57):
So bring in your computers, tablets, you know,
anything like that to keep you there.
It's also a great lifeline for those community
feelings of having FaceTime and things.
It really does help.
You know, you can FaceTime over dinner and
you can have dinner with your family, which
often takes the pressure away from eating.
If we're a bit distracted, we do tend
(51:18):
to go fork food to mouth a lot
easier.
So technology is absolutely vital.
Keep going.
So each day, just set yourself a target
of I'm going to get washed.
I'm going to get dressed.
I'm going to sit in the chair.
That's 10 minutes of your day.
In the thick of week two, that's an
entire day, you know, a couple of hours
(51:38):
to prep yourself for a shower, half an
hour of standing in the shower going, why
am I here?
Oh, yeah, I was having a shower.
And then that recovery time afterwards.
But it pays dividends.
Then when you're going home, you haven't lost
as much muscle and things that keep going,
keep eating and distract yourself as much as
you can.
So I normally see patients about a week
(52:00):
after Alex has done the talk, the work
up chat.
So I will often say, you saw Alex
last week.
Do you have any other questions?
No, no.
Alex went through absolutely everything brilliantly.
As you can hear listeners, this is an
amazing resource, Alex.
I think you do a huge service to
our patients.
(52:20):
And I hope this pod is a resource
people will find useful because it's still a
standard treatment, the transplant where we're going to
be delving over the next few months into
questions like, well, when will we be able
potentially not to do transplants?
But certainly for the foreseeable future, it's in
and it continues to happen all over the
(52:44):
world.
And I think understanding that journey, Alex, that
you so sort of eloquently described fills people
with confidence.
And yeah, I mean, the side effects can
be really bad, but understanding it's like, oh,
it's day seven.
This is supposed to be happening.
It's rubbish.
And I feel like crap, but I'm not
scared because it's supposed to be happening and
(53:05):
we can get through it.
And as you say, you and other colleagues
will also, you know, come down during the
transplant as well, just to sort of ensure
that things are going as they should.
And, you know, that all important discharge chat
as well, because sometimes people say, right, I'm
going home.
And then you get home.
It's like, oh, this is still going to
still going to take some time.
But as you said, and as we said
(53:27):
on the last pod, people get back to
normal.
Thank you for sharing your insight and experience
with us this evening.
I'm glad I only had to ask you
48 times to come on the pod.
And now rather than talking to patients, you
can just put the podcast on, you can
just press play and, you know, put your
feet up.
And from me and Sally, we'll see you
(53:49):
at the next pod.
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