This transcript was extracted from the ‘An overview of Myeloma‘ video.

Can you all hear me? Okay. The back. Yep. You are all really, really welcome. So this is our annual health and wellbeing event for myeloma patients. And then there’s lymphoma patients in the other room. So really excited to have this here because we’ve had to go online with Covid over the last few years. So it’s great to have you back in person.

So today is really about hearing from a wide range of professionals as well as two wonderful patients who’ve kindly volunteered. I Think you, volunteered and to talk today about their experience. So hopefully you will come away with a wee bit, some tips, some advice and some information to help you live better with your conditions. As you can see we’ve cameras at the back, this is just so that we can record the event to make DVDs for those patients who haven’t come today.

So it’s not like being livestreamed. It’s not going to be anywhere online or anything like that. So it is completely anonymous. However, if we could asked us if you do have any questions to keep them to the break time later on so that we can kind of protect that anonymity, if that’s okay. so if you do have any questions, there is a wee note, pad in your packs, you all got.

So do jot them down if you want to or just grab grab us we’ll be about for the whole event. And so a few housekeeping before we start. So not expecting any fire alarms. So if we do get one we have to go. There’s fire exit here and there’s one out there to the left.

if you need the toilets there, just out the door and up to the left, and you’ll see them glasses of water at the back. what could I ask you? Just. If you have mobile phones, please put them on the silent. We will have tea and coffee after I. I think it’s about quarter past eleven or so.

So we’ll be having a break. And there’s a big room. We’ll get tea and coffee, but there’s also a lot of charities have come today like myeloma UK, Macmillan, lots of cancer focus, lots of different ones. So please go around and take any information and ask any questions that you may which may be useful to you.

So firstly I’m going to hand over to Doctor Aaron Niblock, who is some of you may know, and from previous groups, but he’s one of our consultant haematologists up in Antrim. and so thank you. Thanks very much for coming. I actually recognize most people in the room, which is good. as Kerrie said, my names Aaron Niblock one of the consultants based in Antrim, and I’ve been tasked with just talking about myeloma but, I really I think when we go into any sort of cancer diagnosis, nice to know a wee bit of biology and cancer. So I’m going to try not to bore you on why we’re all at risk of cancer irrespective of lifestyle. So so myeloma, also known as multiple myeloma and plasma cell myeloma.

Its official name is plasma cell myeloma. Okay. But it’s just got lots of different names historically over the last few decades. it’s not melanoma, okay? Melanoma is a skin cancer. It’s not related. Okay. So myeloma is a bone marrow cancer of the plasma cells. So I said To you before I’m going to talk about myeloma the science I’m going to bore you silly with cancer biology.

And then we’re going to talk about the treatment of myeloma. So what is myeloma. Myeloma is a cancer in the bone marrow and there’s a cell in the bone marrow called a plasma cell. And this plasma cell in normal health they exist under there as part of your immune system. But something’s gone wrong. And you know, the definition of cancer is basically uncontrolled growth.

So basically these plasma cells have lost control and they’re growing inside your bone marrow. But there is a pre-cancer phase to this disease called an mGUS monoclonal gammopathy of undetermined significance. And I’m going to ask you to remember that okay. And you’re not leaving until you remember that. So that’s mGUS. it exists in a population. If you take a population of 100 50 year olds, there’s about 2% of it.

If you take a population of 100 80 year old, we reckon about 5% have it. If you look at , eighty six year old men, about 8% have it. So we know with the age this precursor exists in health. But not everybody with this will get myeloma, okay. Only 1% of these people a year get myeloma. So it’s very, very small.

The population isn’t screened for it. because it wouldn’t be a very good screening test, would it, if we found all these people, which is quite a lot of part of the population and very little, we’re going to get cancer, this type of cancer, because other cancers are more common. So then we have this group here called myeloma, multiple myeloma or myeloma and asymptomatic myeloma.

So once we have the cancer it can sometimes affect us or it might not affect us. And the one where it doesn’t affect us and it’s not causing any symptoms is called asymptomatic myeloma. And if you have this condition, about 10% per year. Go into full on myeloma and what way can myeloma affect you You all came different ways.

You came with holes in your bones or broken bones. You came with kidney impairment. Some some came with high calcium levels and some came with anaemia. Okay. So usually those four things, sometimes you don’t actually come with any. Sometimes we actually find you by coincidence in a blood test. So myeloma, there’s 24,000 people in the UK have got myeloma at any given time.

Huge amount. And if you look at this here, you can see this is age along the bottom. And as we age we can see that myeloma gets more and more common. and you can see males are more likely than females to get it.

So what causes myeloma. Now, I know you’re not allowed to be interactive because Kerry said, but you’re going to have to tell me, so give me a risk factor. Why do you think people get myeloma? Anything from a lifestyle lifestyle like smoking, drinking, perhaps things that got there? Maybe. Maybe not, because we know 90 year olds that smoked all their life and don’t get it.

We know people drink their whole life and don’t get it. So anything else?

Unlucky. Unlucky? Absolutely. Yep. Or maybe exposure to chemicals or maybe UV light. We all know risk factors for cancer, but you always know someone who does all the bad things and doesn’t get cancer. So it’s not the only thing so unlucky so far is the best one. But if I take you back to this and I says to you, what is a risk factor for cancer?

Age age is the biggest risk factor for any cancer. But then you go away going but some. Still don’t get cancer. They do. Some people have family histories of cancer and they get cancer. So it’s not an absolute thing. But now you’re getting a picture here where there is lots of risk factors for myeloma like any other cancer. So now I’m going to bore you with haematology because haematologists look after myeloma while oncologists look after a lot of solid cancers don’t they.

So this here is a picture of your skeleton. Everyone in this room and see this red area. This is where your bone marrow is the stuff that makes blood. So myeloma cells are inside that red area. And that makes sense because when you go for scanning, that’s the part of your bones we scan for, because if there’s going to be holes in the bones or broken bones, usually it’s in there.

there is rare cases of being down here, etc., but the majority are in the central skeleton. And this is what we spend our life looking at down the microscope. If I was to take a biopsy out of here, that’s what a normal, healthy bone marrow looks like. the white stuff is the fat and the red stuff.

There’s all the cells that make blood and plasma cells. If you have more than 10% of those, wee red dots or plasma cells, then that officially makes a diagnosis. And as a haematologist, that’s what we look down the microscope for. So now I am zooming in inside the bone marrow. and the bone marrow has got lots of cells because bone marrow makes all your blood.

It makes the red stuff that gives you energy. It makes white or other white cells that help fight infection. It makes platelets to stop your clotting. But there’s this one. Plasma cells, the small proportion of cells inside this bone marrow. And they’re called plasma cells. And their job as part of the immune system. And in normal health they make these things here.

Antibodies. And you’re going oh my goodness it’s getting scientific now. But what do you think the purpose of these antibodies are in normal health. Yeah. Fight disease and infections. So basically you’re constantly exposed to bacteria. Your body is lined with bacteria. Your constantly exposed to viruses. Right. Now. There’s loads of people in this room. They’re fighting a virus.

And most of you will not get symptoms because the immune system’s that good. So each plasma cell is making a unique antibody. For example, whenever you see grandkids and they come in, if they’ve got a runny nose, doesn’t guarantee you’re going to get a runny nose, that’s because you’ve maybe had that virus before and there’s an antibody in there.

It’s going to detect it quick and your body’s going to destroy it. Okay. So these plasma cells as you go through life have gained, these antibodies which keep you well. So it’s a very clever system. And these plasma cells hide in the bone marrow. But the thing with these plasma cells, is they do not replicate as in this plasma cell, will not make another plasma cell.

It only releases these proteins. You with me. And that’s what we’ve talked about. This is the purposes these here. Proteins these antibodies because we are going somewhere with us I promise there’s a tedious link whenever you go into your clinic and you go what’s my proteins doing. Because all we’re doing is measuring these. We’re measuring the amount of them.

So this is a normal antibody. And this bit here up here is what recognizes like a virus. whenever you hear sometimes in clinic you hear about a thing called a par protein or a light chain. If we’re talking about light chains, we’re talking about this wee red. Bit if we’re talking about the heavy chain, we’re talking about this blue.

But these are released by normal plasma cells and they’re released by the cancerous ones in most people. So by measuring these we can actually tell how much myeloma is in your bone marrow. So if it’s coming down we know the number of plasma cells is coming down. If it’s going up then we know the number of plasma cells is going up.

So it’s what we call a biomarker of cancer. And to take you really far back the first ever cancer biomarker was found by Bench Jones. And it was these wee red things in urine. So it was for myeloma the first biomarker. So cancer biology because it’s normal whenever anyone tells you you have a cancer diagnosis to go what went wrong.

When did it go wrong. And you wreck yourself a round and round in a circle. And hopefully by the end of this you realize that actually it’s completely out of your control. So does anybody know who these two men are? There’s a big DNA thing. Anyone know who find DNA? No, no. Okay. Watson and Crick. Okay, so we have Watson and Crick.

and they find a structure. This DNA. Now, the purpose of DNA is inside every cell. You’ve got a brain. It’s called a nucleus. And that nucleus tells the cell what to do. But more important, it tells the cell when to die. So through life, your cells get replaced with other cells. Because if you look around right now in the room, you will see that you don’t look like you used to look.

You know, your skin’s getting older, your muscles are getting older, your strength is gone down. and every time, even right now, your cells are being replaced with other cells and that’s normal. So every time your cell has to make a new cell, any cell in the body, it has to copy this DNA over to the next cell to do its job.

Because if it didn’t copy it over, that cell wouldn’t know what to do. So inside one of those cells, which you can’t see with your eye, guess how much DNA. There is in one cell, and you have 100 trillion cells in your body. There’s over six foot of DNA in one cell. If I was to stretch them all like they’re all crumpled up.

But if I took that DNA and pulled it out one cell, it’s just as tall as me I’m not six foot it’s taller than me. Okay, so six foot. And then you have to copy the instructions from one cell to the next every day of your life from the day and hour you’re born. So you take away risk factors. You take away the smoking, the drinking, the radiation, the toxic chemicals you’re exposed to every day of the week.

How many mistakes do you think are made every day? Every time a cell divides? Ten, 20, 70,000 there’s 70,000 mistakes made every time your cells replicate. And that’s why you look different you age. But the moral. of The story is if theres 70,000 mistakes made every day, every time a cell replicates. Why are we not all dead? Because we should be.

We should be dead long before we get into old age. So the body’s very clever because most of the time the mutation created doesn’t actually do anything, because only 2% of that six foot is actually useful for that cell. But there is mutations in that 2%, but also your body’s immune system is genius. Your body’s immune system. Every time a cell goes A wall, it can recognize it and I can destroy it.

But guess what happens to your immune system it ages 2 it gains 70,000 mutations per immune cell per day. So you’ve got a double whammy now to take you back and go, well, what is the biggest risk factor for cancer, it’s age. Because you’re getting more mutations with age, but also you’re getting an aging immune system. So it’s like Swiss cheese.

The holes are lining up. Now. You can obviously add in these these are known risk factors for cancer. So that 70,000 may go to 80,000 might go to 90,000 or risk factors. But the biggest risk is just age. Now this I’ll throw this up for fun. This said before there’s lots of risk factors, but this is just to show you how far sometimes medical staff are behind figuring out causes. So this is, lung cancer and smoking because everyone knows smoking increases lung cancer. But actually back there in the early 1900s, we didn’t know that doctors used to prescribe cigarettes for stress and anxiety. It’s a bit worrying, isn’t it? So what am I giving you now.

No. So how we found this out? So it was during the war because, all the army men were given cigarettes. And then what happened was, 20 years later, the epidemiologist Richard doll in London went why. is there a sudden big surge in lung cancer. in these men that went to war. So he was able to do first epidemiology. Study to say.

Wait a minute. It’s actually cigarettes. But we didn’t have a clue. So 20 years later. And the funny thing is you take a cigarette, the risk isn’t gone for 20 years, you know, because you know yourself. Whenever people always say when you give up smoking, you feel worse before you feel better. But the risk is there. For 20 years after Cigarette its mad.

So it’s very hard to prove causation with any risk factor whenever we have to wait that long. Because naturally a lot of people left the planet before we figure out proper risk alcohol. And oh, now I’m going to ruin your lives now with this one. Okay, so your body processes alcohol, and do you ever see those people that, they drink a lot, but they wake up next day fine.

And they go about their day. Those really annoying people. and then there’s other people take a few drinks and they suffer. Well, the suffering people definitely don’t drink because what happens is your body processes alcohol into an aldehyde, and that aldehyde damages your DNA, and it’s directly linked to hangovers. So if you’re a hangover sufferer, you’re actually causing more damage than the people that don’t get the hangovers.

So that’s why everyone’s tolerance is completely different. So that’s why alcohol is a risk factor as well. So anyway, what I’m trying to get from this whole thing is we are sitting ducks every single one for every sort of cancer. The real incredible thing is why do we not have them all? So these two, men, Hanahan and Weinberg, just really in the 2000s put together all these research labs all over the world, we’re trying to figure out why you get cancer.

And yet these research labs doing crazy things to the nth degree. But somebody had to put it all together and go, why all these labs are finding, all these causes. But what causes are important. So Hanahan and Weinberg done a thing in nature, which is. Brilliant, if you’re really, really bored, look it up. It’s only about 15 pages, and it’s the best read of your life.

And they done a revision on it. And what they do is look at all the research across the globe and try to make sense of it. From a more simplistic point of view. And what they said is we’re all getting mutations every day. but it’s only when these mutations all link up, like the Swiss cheese, like I was talking about.

So we’re getting a mutation and suddenly this mutation tells the cell to keep growing. And that’s why. Wait a minute. Some people are born with that, you know, like, for example, you could be born with a braca gene and breast cancer. we could predispose you to get in cancer. We don’t get some people don’t get cancer. Well, some people already have these mutations in place and then or they’re born and then as you go through life they gain, more mutations like this one here.

it turns off your body’s ability to, kill the cancer cell. This one here tells the body to get a blood supply, and spread through the body. So it’s only whenever you have a mutation in each of these points, and you have to have every single one. Does that line up to give you a full on uncontrolled cancer?

So a lot of us, for example, if I give you the bowel might have a gene here, a gene here, a gene here, gene here, a gene here, but not last one. So they could sit there for ten years, not get the last gene and not get bowel cancer. So it’s got a lot more complicated since that. And but what we’ve found is you have to have a gene in everything, every single thing to get an uncontrolled cancer that we can see in the CT.

And that’s what we call cancer. We call it whenever we can visualize it, whenever I can see it with the naked eye and it’s lost control. That’s a cancer. But the truth is the genes that caused it have started to occur in most likely from the day and hour you’re born. So that’s why we use the word remission, because if we used the word cure, it indicates that we’ve got rid of all those genes and we haven’t.

But the word remission is used for any cancer because we’ve got rid of it, that we cannot see it, and we don’t expect it to cause you harm. So this is you can pick any cancer, you could pick plasma cells, or you could pick colon cells or any cell in your body. And I’ve told you before that you’re gaining all these mutations.

So although down the microscope they look exactly the same. And this could be the day you’re born. This could be a week of life. This could be, a few years into life. This cells DNA is changing, so all cancers are genetic, but they’re not inherited. Most aren’t inherited. They’re just genetic. Because your genes are constantly changing.

So what happens over time is these genes start to evolve and you actually get a completely different genetic component, these cells. But still down the microscope. They look the same. still can’t see any growth. There’s no growth in your body at this stage. And then eventually, whenever remember all that struggle, whenever you have genes and absolutely everything, well, then that’s whenever you get a full on cancer.

How do we know this? we looked at biopsies and we could actually track colon cancer back 35 years, in some people in terms of genes, we could track prostate cancer back absolute decades. So I’m really depressing you now here aren’t I. Okay. But the moral of the story is you cannot look for causation because you cannot find it.

You didn’t do anything wrong. It’s impossible. Okay? We’re just all all changing all the time. So the moral of the story is, if you eat healthy and you don’t smoke and you drink lots of water, you’re you. You’re going to die anyway. So quality of life is absolute key here. Okay. So and that’s the point to this.

00:19:09:07 – 00:19:33:14
The point is we are working hard to get treatments to keep you going. The prognosis with myeloma is growing getting really good year on year but we’re doing that. So you have quality of life and that’s a bit we cannot really do a great job of because we don’t know what’s inside your heads. But it’s up to us to give you the education to hopefully get yous back on track, to enjoy life, because it is fragile and every single thing.

So I’ve talked to you about antibody. That’s what a plasma cell looks like down the microscope. Okay. and it releases those proteins. So this is a nice picture of all the wee plasma cells inside your boom. And they’re all releasing antibodies doing a good job. But one the DNA in here breaks. And it makes too much of this protein.

And that’s what we call par protein. That’s what we’re checking in your blood stream. But that doesn’t necessarily mean you’ve got cancer. That could be that mGUS. You remember, that thing is telling you a precursor. And how we know that is, the protein is not really that big, but you don’t have any damage to your body. So what happens when this turns cancer?

It’s whenever these cells start replicating. This protein goes from two to, like over 30 goes really, really big. And myeloma can affect us by cause and kidney impairment, anaemia, holes in the bones. but anyway, you know that because you’ve been through that, myeloma treatment, you look at it, look how many drugs have come over the last 5 or 10 years.

There’s drugs coming near enough every few months. so it’s an exciting field to be in from us from a haematologist point of view. and with that, there survival is also going up as well, there’s different classes of drugs that we use. So people when they start chemotherapy, they’ll be told these mnemonics like DRD or Vmp or DVTD, and then you’re probably looking through all the information leaflets and you’re worrying yourself sick about them, but by combining these drugs up, they work better because they’re targeting the cell from different parts. I’ll not go through them because I’ve been told that there’s not very many minutes left here. and how the doctor knows to give you. Because I can guarantee, you now, in this room everyone’s on probably a slightly different treatment.

We have to take it into account when you come. Is what way the myeloma is affecting you and what your fitness is. What if you’re fit enough for a transplant? If you’re not? from that there, the nice guidance, which is the government guidance and treatments, lets us know what exactly is licensed for you so that we can tailor the treatment for you.

And that’s why someone a few years ago might be on completely different treatment now, because new drugs come and they work very well. So as well, whenever myeloma, as you can imagine, whenever the treatments were quite limited, the job was to give you anti myeloma treatment, and get it under control for as long as we could. But because now survival and everything else is doing so much better with lots of things to think of, like bone protection, we know that myeloma can affect the bones.

So we give you Zometa every month to stop the risk of the fracture. You know, for example, if someone wanted to go out in a Landrover and have a good day, it means that, they could do it if the suspension’s good. Yeah. we know that your plasma cells are very crucial in fighting off infection.

So we keep your vaccinations up to date. Some people have pain, and we have to make sure you’re on the right. Pain relief and what to avoid because they can interact with the myeloma. but you’ll see here the crucial part of any myeloma treatment is a support team. And you’ve met all these people, you’ve met our CNS, you’ve met the pharmacist, the physio, the OT, social workers.

but I can’t stress that enough because if you’re not enjoying life, we’re doing something wrong, because why would you go through all this? So it’s moved on. Anti myeloma treatments, is sometimes the easy bit. you know, we treat the bones, but this is the big thing. We need to improve and preserve quality of life and survival. So we’ve done brilliant.

We’ve got more effective treatments. We’ve got great survivorship now. But with this comes increased late effects. So you are living through all these new treatments that haven’t been around long enough to know the effects long term.

And here’s the plate again. And he’s closing his eyes not the plate again. so we have a myeloma support group which is great and it started back in October again. And what really using a support group for is these late effects. Because what I don’t like as a clinician sitting in the clinic rooms, you find some patients are, you know, really enjoying life, and it’s actually hard to find them to keep an eye on their proteins.

And then you have other people who actually don’t leave their house. And you’re going, my goodness, this this is crazy, you know, because sometimes you actually should be the other way around with the one that’s across the world should be going right, come more often while the one is in the house, is actually maybe not much wrong with them but the whole point of support group is to address what’s inside, what’s inside your brain, what’s holding you back, and what’s stopping you enjoying life. And this here plate, which was a great design, but it’s a plasma cell. So you can see the picture earlier, how well it looks like a plasma cell. But the plate is you and the whole point is, whenever you come to meet me, I break your plate because I tell you, you’ve got myeloma.

But as you spend the next while or life trying to put this plate back together, and what we wanted from you, was to figure out what was the biggest concerns because our job looking after myeloma is to address these concerns, to get your plate back together, to get you on with life. And hopefully this talk helped you understand the disease and the treatments.

And we’ve done a few before. But the whole point of that support group is to address all these.

And you are very much invited to the next one, which is when Kerry 23rd and Valerie. Yep. So, Valerie, if you aren’t signed up, Valerie is over here. and Kerry, I couldn’t rave enough about it. It’s really, really good. So, you’re not allowed ask me questions because, we’ve time pressure, but I’ll talk to you out there okay? You happy enough.