This transcript was extracted from the ‘An overview of Lymphoma and CLL‘ video.

Hello everyone, and welcome. my name is Amy Wilson. I’m the Macmillan information and support manager. And thank you so much for being here today. And sorry we’re starting a wee be a bit late there. Apologies for that. So during the pandemic, we actually moved these events online. And whilst that was great, we’re excited to be here seeing you guys’ face to face in the flesh.

It’s just great because then you’re able to chat to other people who are going through similar experiences. And one of our biggest ambitions in cancer services is improving the follow up and ongoing support for people affected by cancer. And that really is the purpose of the event today, to provide you with additional education and information about how to manage and improve your own health and wellbeing, tips on what to look out for and who to contact should you be concerned.

And we have an exciting program today, with different information talks from the haematology team, from the different allied health professionals here. They’re so excited. I can tell, from our lovely patient representatives as well. So thank you to Monica for being here today. so on the letter, you will have seen that this is being recorded and you’ll have seen the scary camera at the back.

But I just want to ease any concerns it is anonymous. Okay. They’ll just be recording our mugs up here. So, just to allay any fears. So, hello to any of the DVD viewers and to the website viewers at home. and so if anyone after this event does want a DVD or a link to see the event again, please let us know.

Just pop over to the information table over there. Get, your give your details over and we can send that to you after the event. In you wee pack there is a post-it note and your keynotes. at the very end, there’s a place where you can write some notes, and we would just ask for you to leave any questions to the end.

And so just jot down any questions you have. Leave it to the break time or to the end just so that we can stick to time. So just a wee bit of housekeeping. All the fun stuff. So there is not supposed to be a fire alarm today. Fingers crossed. But if there is, the emergency exits are just over there back where you came in. And there is one just behind these curtains as well. I’m channeling the air hostess here. Toilets are just back out where you can and to the left. And the production company have asked me to silence your mobiles, so please do. We don’t want to hear any interesting ringtones. Do they exist anymore? I don’t even know.

But anyway, So please do silence at your mobiles. There is water available. Hopefully you saw that. So please do avail of that at any time. there will be tea, coffee, scones and fruit at the break for you guys. Okay, so, you got a wee information pack whenever you first came in. So in there, there is an wee agenda.

So, who the different speakers are when they’re going to chat. There is an evaluation form which I will chat to you about at the end. There is post-it notes, a pen. There’s a summary of all the different information tables, in the room and at the break, we really, really, really would encourage you guys to go chat, to the different information tables here.

There’s lots of support out there, and there’s also key messages as well. So just a bit of information about, short bits of information about, what the speakers have spoken about today. So that’s what that’s for. And there’s a sweet just because we wanted to treat you, you know. So once again, thank you for being here today and for your commitment to improving your health and wellbeing.

I hope you find today’s event informative, engaging and empowering. Thank you so much. And I’m going to welcome our first speaker, Doctor Windrum. Welcome.

Hi everybody. people keep telling me I look like Britney Spears. I haven’t seen Britney in a while, but I didn’t realize she’d let herself go that much. so I think there’s been a bit of a laptop malfunction, so whenever I finish each slide, I just have to say next to go onto the next slide. So I’m going to talk about lymphoma and CLL.

Chronic lymphocytic or lymphatic leukemia. Two related conditions what haematologists call Lympho proliferative disorders. So proliferation of your lymphatic or lymphoid system. So lymphoma is a type of a blood cancer. If you think about I mean, a lot of haematology conditions are named from the Greek language. So lymphoma literally means tumors of your lymph system.

Leukemia means white blood. And because you have a high white blood cell count. So it’s a type of blood cancer that develops when the lymphocytes and which are one of the types of white blood cell in your blood, grow out of control. And, lymphomas are lots of lots of sort of people, a lot cleverer than I have meetings every so often to classify lymphomas into different, categories.

But the most broad category that we use are Hodgkin lymphoma, which I will show a picture of what Hodgkin lymphoma looks like at some stage, and then everything else. So everything that’s not Hodgkin lymphoma is just called non-Hodgkin lymphoma. And there’s literally like, I think currently over 60 different types of non-Hodgkin lymphoma that are that are classified. And the Hodgkin lymphoma, as I said, if you see a cell down the microscope called a Ree-Sternberg cell, then that is what is diagnostic of Hodgkin lymphoma.

And it was named after so an American lady called Dorothy Reid, who actually discovered it first, but because she was a lady and that there was a man called Sternberg, in Austria who kind of discovered it around about the same time it was called Reed Sternberg cells, because obviously things were a bit different in those days for ladies, particularly in medicine.

And, it got its name because of research done by a guy called Thomas Hodgkin. So it was named after him. So, as I’ve said, non-Hodgkin lymphoma, anything that you don’t see, a Reed Sternberg cell is a type of non-Hodgkin lymphoma. So go on the next slide, please. So, these are the sorts of slides that, Doctor Niblock, who’s doing the other talk, could probably talk about for several days, but basically what happens in, in normal function that your body is turning over trillions and trillions of white blood cells every day.

They mature and they do their job. They meet, infection and they produce an immune response to it. And at some stage in their lifespan, they’re supposed to just quietly go away again and be turned over. But there are lots of mechanisms within the cell and the genes in the cell that control the cell turnover. And because these things are replicating so much every day, sometimes that that system breaks down and goes wrong.

So you can have some of the genes that go wrong that actually make the cells grow, quicker on turnover quicker. But you also have some that stop them from being, self-destructing when they’ve outlived their natural lifespan. So that leads to obviously, expansion of the white blood cells, either in the lymph glands or in the blood and in the bone marrow.

And that’s when you start to have the problems. So next slide, please. So as I said, there are probably over 60 different types of, non-Hodgkin lymphoma. And these are some of the commonest ones that are sort of breaking down into all those people have different colors. So there’s only really ten there. So there’s lots and lots of other ones that are extremely rare, but we obviously have have to know about them and how they’re treated.

And I’m sure probably some of you have been in the situation where you’ve been worried about an exact diagnosis and you’ve been and had a lymph biopsy or something like that, and the results come back and a haematologist is sitting saying, you know, we don’t really know exactly what this is. And we might need to do the biopsy again.

And it’s for exactly this reason that we to all intents and purposes, need to do that as far as is humanly possible. Each of those different ten different types of lymphoma are all treated completely differently. So unless we know exactly what it is that we’re dealing with, it’s very difficult for us to sit with someone and have a sensible conversation about what treatment they need to have in order to give them the best, chance of, remission.

So, as I’ve said, sometimes it can be quite complicated and quite frustrating, especially at the start when you don’t when you don’t have an accurate diagnosis. Generally, I mean, these are all types of non-Hodgkin lymphoma. So generally, we talk about what are high grade types and low grade types and that’s a very, very broad kind of distinction.

High grade types of lymphoma grow very quickly. They need chemotherapy treatment upfront. whereas leukemia types of lymphoma often can kind of grow sometimes for years in the background without needing any treatment. And you don’t necessarily need to jump in on day one and actually give people any treatment for them. So how does lymphoma present?

Well, it can be very vague. I mean, we get lots of people who just present with things like tiredness, night sweats, weight loss. We have to have a kind of set criteria for all those things. So the weight loss that’s associated with lymphoma, you have to lose 10% of your body mass within six months. So it’s not just a it’s not just that you’ve lost a couple of pounds.

It’s like lots of weird dropping off your for absolutely no other reason whatsoever. The night sweats that people get, are drenching. So people wake up in the middle of the night and feel like they’ve been in the shower, need to change their bed sheets, need to change their pajamas or night dress, and lots of the other symptoms that happen are basically anatomical.

So you get enlarged lymph glands, which sometimes you can feel the can be in your neck or under your arms or in your groins, but also they can be pressing on other organs. People can be short of breath because it’s in their lungs. It can be in there and their abdomen and cause pain in their tummy. so it kind of can present with almost every single symptom that there is, which sometimes makes makes things very difficult.

And it also means that it’s, you know, particularly people who have already had had lymphoma get obviously and completely understandably concerned whenever they have vague symptoms that might not necessarily be anything to do with their lymphoma. But we always, always kind of take that seriously and investigate them. Next slide, please. So, NHL and CLL are quite common.

There are 50 people in the UK every day diagnosed with some form of lymphoma or CLL. And so obviously it’s a very, very common condition. And most GPs’ don’t really see very many cases. But obviously because we are the haematology team, when we dealing with these conditions, we have sort of several people and even in the Antrim area who are diagnosed with these conditions every week.

Next slide please. And people are more likely to develop lymphoma if they’re male, people who have weakened immune systems. So for example, it’s more common in people who are HIV positive. And it’s also more common in people who are on immunosuppression drugs, like people who have had kidney transplants and things, certain viruses make it more likely people with what we call autoimmune diseases.

So when your own immune system attacks parts of your body. So things like rheumatoid disease where you’ve got your own immune system, which is supposed to mount a response against foreign invaders, sometimes goes wrong and then starts to attack parts of your own body like your joints. And people who have a family history, are more likely, though it’s not, we wouldn’t call lymphoma a genetic disease.

It’s not something that’s passed on from parents to children. But there are, kind of clusters and families and people who, have a member of their family with lymphoma are more likely to develop it than people in the general population and people who’ve received treatment for other types of cancer in the past, and also people with exposures to certain chemicals and things like that.

So having said that, you can get quite a number of people who have lymphoma have absolutely none of these risk factors, and that’s probably more, more common, to be honest, than than people who have it because of any of these reasons. But they just make it slightly more likely. So how do we stage lymphoma? So there are various techniques that we can use and we can use, you can go back to the previous slide to sorry.

So if a go from the left to the right. So blood tests, scans like the one on the left, the CT scan or ultrasound scan. Then we’ve got biopsy so that biopsy that looks like I know as I Reid-Sternberg cell. So if you see that type of microscope on your a pathologist stem, that means you’ve got Hodgkin lymphoma and can go on the next, next slide then.

Thank you. So stage one lymphoma means that you have got lymphoma in just one area of the lymph glands. So in this case this patient has neck nodes but it could be anywhere. It doesn’t just have to be neck nodes. So if you’ve got only disease in your armpit then that’s still stage one disease. If you’ve got more than one site of disease, like in this case, this patient has got neck and axillary nodes that stage two, as long as both sites are on the same side of the diaphragm.

So the diaphragm is in the middle of your, your, body and it divides your chest from your abdomen. So anything above the diaphragm or anything all below the diaphragm is stage two. So neck and armpit. Stage two you can have abdominal and groin nodes. That would still be stage two. Next slide please. So if it goes beyond both sides of the diaphragm that is stage three.

And if it goes beyond the lymphatic system and it affects other organs like your liver, your spleen, your lungs, some of the solid organs in your body or in your bone marrow, then we call that stage four. Now, it’s not it’s not a huge distinction needs to be made from the point of view of treatment. Stage two. Stage three lymphoma is treated exactly the same, but sometimes it can have a bit of an effect on the actual prognosis of your lymphoma.

So whenever we see anybody with with new lymphomas, the scoring systems that we have and we crunched some numbers, some of the blood tests, what their stage is, what age they are, and then at the end that will give you a risk score. Sometimes that might affect the treatment that we give people. But most of the time it’s more just for information rather than anything else.

Next slide please. So once we have made a proper diagnosis, and once we have an exact type of lymphoma that we’re going to treat, then we can sit down and have a conversation. And sometimes the treatment, takes in some factors that are patient centered. So someone who’s 90 day with dementia and, heart disease and lung disease may not necessarily be treated exactly the same as someone who’s in their 50s and completely fit and healthy.

Otherwise, even though they might have the same disease. So sometimes you might need to adjust the treatment based on the patient. Every new patient with blood cancer, we discuss on a weekly what’s called MDT, your multi-disciplinary team meeting. So this is just to reassure people that it’s not just some doctor that on his own that’s saying this.

So we we do weekly meetings with all the consultants in Antrim we join up with the consultants in Altnagelvin as well. So there’s sometimes that can be weeks, it can be 8 or 10 different hematologist or are talking about new patients with lymphoma, just to make sure that everybody agrees with the decisions and the treatment that is being made.

And the treatment may involve chemotherapy drugs. So they are the drugs that kind of make people a bit nauseous and affect cell division. So that’s why your hair can sometimes fall out. You can get problems with your blood counts. You can get problems with your gut. Immunotherapy is a bit of a more recent development in treating, lymphomas.

So they are the drugs at end in a MAB monoclonal antibodies like rituximab and Abenatuzimab. So they’re antibodies that are developed specifically to try and fight the cells that are in the lymphoma. So your own body develops antibodies against infection. But people in, in research and laboratories have actually developed antibodies that attach to the markers on the surface of the, of the, the lymphoma cells and help to kill them off.

And then there’s radiotherapy as well. So particularly if you’ve got one, one specific area or a small area of disease, then radiotherapy can sometimes be very helpful. The problem usually with radiotherapy is the toxicity. So people who have lots of areas of disease, radiotherapy is not an option because the amount of radiotherapy that you would need to give someone in order to try and get rid of all that disease would be very toxic.

But it can sometimes be useful for small areas. we’ve got clinical trials listed at the bottom. So as far as as possible, we try and enroll people in clinical trials if we can. I don’t think we have any lymphoma or CLL trials open and Antrim at the moment. And sometimes we would send people to Belfast for clinical trials.

But, it just depends on what, what what’s on the go at the time. So next slide please. A few slides about CLL. So we’ve talked about lymphoma. So lymphoma presents with enlarged lymph glands CLL can present with enlarged lymph glands too. So there is an overlap. but in CLL the the major component is in your blood.

So people usually are detected with CLL because they have a high white blood cell count.

CLL is very common. It’s the commonest leukemia in the Western world. and it happens because there’s as I said at the start, something happens within your lymphocyte cells to stop them from dying when they should. So the white cell count in your blood goes up. And that’s generally what’s picked up on a blood count. Next slide. Again, it’s more common.

Elderly people, the older you get, I’m not saying over 65 is elderly. It just becomes more common in elderly people. So the older you get, the more likely you are to have CLL. Again, same sorts of things as lymphoma, chemical exposure, meals, family history. As I said, people who have a close relative, have a higher chance of developing, developing, but the risk is still very low.

So it’s not a genetic disease like cystic fibrosis or muscular dystrophy or something like that, where if you have a parent with it, then your risk can be one in four one and two chance of developing it. So it’s still very, very low.

So this is what happens in your bone marrow. In your bone marrow you’ve got things called stem cells. Nobody really knows exactly what they are. But something happens in your body that tells the stem cell what it’s going to do with its life, and it then decides whether it’s going to be what’s called a myeloid cell, like a red blood cell or a platelet cell or a neutrophil cell, or whether it’s going to become a lymphoid cell.

So then it becomes committed to developing down one of these lines, people talk about and you’ve heard, maybe heard about stem cell transplants and things. Sometimes you would, would use stem cell transplants in lymphoma. So that’s basically so that we can give people very high doses of chemotherapy and eradicate the disease. But also that would probably be enough to kill off all their own bone marrow on all their own stem cells.

So your given their own stem cells are someone else’s stem cells back in again, and then that repopulates the bone marrow again over the next few weeks. So all these other cells grow just from stem cells. So obviously they’re very, very important.

Most people with CLL have absolutely no symptoms whatsoever and are completely picked up, coincidentally. So GP’s nowadays do lots of blood tests if you’re not feeling well. and it’s I say approximately half of people with chronic lymphocytic leukemia have absolutely no symptoms or problems whatsoever. They just have a slightly high white blood cell count when they get a blood picture done.

Again, symptoms are very vague. Wells Syndrome. This was something when we were doing this talk. I’ve never actually heard of this one before. So sometimes you kind of learn things yourself. Increased sensitivity to insect bites. I’ve never actually heard any patients complaining about that or discussing that before. Same things again. High temperatures, lumps and bumps. Weight loss, people just feeling generally rotten. Night sweats. Feeling like they’ve got the flu.

Again, very similar diagnosis. Although this time the cells that you’re the abnormal cells are in the blood. So it’s a lot easier. You’re not having to do lymph node biopsies or generally very often bone marrow biopsy as you can make the diagnosis from the blood. There are various ways of doing that. we would send people’s blood off to Belfast.

We have actually a flow cytometer in Antrim as well. So this is a machine that, on the surface of white blood cells, there are lots of all these markers that are called CD markers on the pattern of these CD markers, differs depending on which type of lymphoma or cloud you’ve got. So the markers in CLL are different from follicular lymphoma or mantle cell lymphoma.

So haematologist can do these tests and see what the pattern of the markers on the cells are. And that gives us more information about the diagnosis. It just makes things more accurate. And again make sure that we’re giving people the right treatment. But even if you look at all the different type, all the CLL patients that you see and they all look the same doing the microscope and they’ve all got the same flow cytometry, no two diseases, are the same.

And that’s because a lot of the mechanisms in the cell in the genes and the chromosomes in the cells, may be slightly different from one patient to another. The end, kind of result is CLL, but sometimes the some of the different types of cells are better than others. And again, that might kind of change the treatment that we give people.

And sometimes we do CT scans because people can have enlarged lymph glands which might be causing problems. And it’s always good at diagnosis to to have a baseline picture so that you can compare it to if you need to go back and look again. And sometimes if people have got very low blood count, then we might do a bone marrow biopsy.

But it’s not completely necessary for making a diagnosis.

Staging is slightly different stage A, which is where most people will see come into a diagnosis, have a high white cell count, but not very much else. Less than three areas of enlarged lymph nodes. And if there’s more than three enlarged areas of lymph nodes, but they still have a normal blood count, then we call that stage B.

And then if you’ve got problems with a reduction in your red blood cells and platelets, then that’s stage C disease. And that’s when people start to need treatment because we don’t want people’s blood counts to go too low before we start to give them more treatment, which is potentially going to make their blood counts even lower. And that’s when you can have problems with side effects.

So most people as I’ve said with CLL don’t need treatment.

Most people with CLL don’t need any treatment ever. So a lot of people who come to us and I’ve had this diagnosis, are then faced with a doctor telling them that you’ve got this thing and it’s a it’s called leukemia and it’s a type of cancer. And it sounds horrible, but we’re not going to do anything about it.

Sometimes that’s what we call watch and wait approach can actually be very difficult for people. But this is the reason why. Because 1 in 3 people will never need treatment for CLL. So if we go in on day one and give everybody chemotherapy treatment, then there’s a lot of those people who are never actually going to need that treatment and may potentially suffer problems or side effects from it, and that would be completely unnecessary.

So if anyone ever came up with a clinical trial, and said it was a good idea to treat CLL in everybody at day one, then that’s what we would do. But nobody has actually come up with that trial yet. So there are no drugs about that, that we would do that with.

Again, it’s kind of kind of very similar to CLL. There are several different treatment options. CLL used to be treated a lot more like lymphoma. Things have changed quite a lot even over the last couple of years, within sort of oncology and hematology and various cancer diagnosis, people are actually looking at what’s going on in the cell to cause that disease.

So rather than just firing a machine gun at it, like what chemotherapy is, people are actually looking at the mechanism of what causes CLL within the cell, and they’re trying to target that. So some of the newer drugs abrutinib, venetoclax, they are molecules that are specifically targeted at the mechanism in your cell that causes CLL.

So that’s why they have a lot less side effects than chemotherapy because they’re not just killing all the other normal cells in your in your body just as much as what chemotherapy does. And a lot of the time it comes down to patient preference too, because there might be an option between a tablet and an injection. And the tablet might be and indefinite treatment the injection might be finite treatment for 18 months, two years.

And some people would rather have a tablet, and some people would rather not be on treatment for a long time. So a lot of it just depends on patient preference.

And we’ve kind of kind of talked about that quite a lot. Watch and wait is the most common approach. Drugs such as rituximab which are used to treat lymphoma as well. We’ve talked about the targeted drugs. Very unusual, that we would send people with CLL for Car-T, but it would be something that we would use sometimes in, relapsed lymphoma, high grade non-Hodgkin’s lymphoma.

We would sometimes send people to King’s College Hospital in London, where we have a kind of partnership with them, which means people go into London for a month and have them having higher doses of treatment. But as I said, as far as is possible, we try and individualize treatment based on the disease, based on what people and their general fitness and based on what their preference is.

Think this is the last slide. So as well as the treatment, we give people antibiotics to prevent infections, we encourage people to have their vaccinations. We’ve actually just come up with, like a tick box that we send out now to GP’s for everyone who has CLL and that’s just sort of tell their GP what, what, vaccinations they’re supposed to have.

Sometimes if people’s white blood cell counts are quite low, we would boost that with injections of stuff called G-CSF, which makes your body produce. It’s a natural hormone that’s been synthesized, and it makes your body produce white cells. People with CLL will have low anti-body levels generally. So we might need to give, what’s called immunoglobulin or IVIG immunoglobulin to people, particularly over the winter months.

People should be advised to look after all the other things that we’re going to hear about today as well cardiovascular health, exercise, diet, sun safety, which I’m not a very good advert today. This is like my nose after factor 50 yesterday. So I actually did put suncream on. So it’s just as well I did or I don’t know, I would look like a crisp today.

At the bottom line, there is a haematology helpline for patients to phone. if there’s any problems, get in touch with the CNS, get in touch with the helpline, and there should be someone there 24 hours a day to offer help. So I think that’s maybe the last slide. Yes. Thank you.