Waldenström macroglobulinemia (WM) is a rare blood cancer that usually progresses slowly. WM can be diagnosed by blood tests, bone marrow biopsy, and scans, and there are a range of treatment options available. To learn more about WM, we spoke with Bob Perry, who was diagnosed with WM in 2015 and treated with chemotherapy. Since then, he set up a support group, the Bournemouth and District WM Support Group aka the BAD WMers. He is also Patient Support Manager at the UK charity Waldenström Macroglobulinaemia UK (WMUK).

Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.

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Transcript

When and how were you diagnosed with Waldenström macroglobulinemia (WM)?

Okay, so I was diagnosed in 2015, but before that I’d been ill for about four years, constantly going to the doctor with a really serious nervous condition. That meant that my shoulders and arms didn’t work properly, and I also was extremely, extremely fatigued. And I kept getting sent away, being told I was anemic. What did I expect? I was approaching 61 years of age. I was getting older, you know, just go away. “Eat more spinach!”, one doctor said to me, to get some iron into me. But this went on, as I say, for about four years. I think I was probably ill for about four years. And it then transpired that, I saw a different doctor one day, and she decided to take some different types of blood tests.

I took the blood tests and I went away. And at that time, the Rugby World Cup was being hosted in the United Kingdom. I’m a big rugby man, and I had tickets for a game down in Cardiff, Australia against Fiji, took my wife down there and even there when I tried to get to my seat in the top row of the stadium, I had to take four attempts, I had to stop four times to get into my seat. I was so breathless. And there was a mysterious phone call that I didn’t recognize during the game, so I didn’t answer it. But afterwards I took the call and it was my doctor saying: “You better come back to Bournemouth because we’ve got a hospital bed waiting for you. There’s something seriously wrong with your blood results.”

And that kind of started it all off really. And I couldn’t go back that night. We’d planned to go out in Cardiff, so I went back the next day. I went straight into hospital. They told me that there was something seriously wrong, straight in for a bone marrow biopsy, which was quite unusual, I think. I think you normally have to kind of wait weeks or months for a bone marrow, but they wanted to do it straight away. And then within sort of hours they said: “Right, you’ve got a very rare blood cancer.” The joke about the name, I think, is that my doctor was a German doctor, Dr. Hoffer, a lovely, lovely man, but with a very, very German accent. And when he said to me: “Mr. Perry, you’ve got a rare blood cancer, and it’s called Waldenström’s macroglobulinemia.”, I said to him straight away: “That’s easy for you to say!” I’ve got t-shirts now with that on: “Waldenström’s macroglobulinemia. That’s easy for you to say!”, because it’s not easy for anybody to say, not even a German guy. But anyway, so, I digress there a little bit.

My readings were so high, some of my readings were so high, my infiltration was so high, that kind of unusually, I started chemo two days later. Chemotherapy. Exactly: Mine was chemoimmunotherapy. The reason being there were two drugs, bendamustine and rituximab. One is an immuno drug, rituximab, and the other one, bendamustine, is the chemo. So, it’s immunochemotherapy. So, I started on that immediately. Almost immediately I started, my nervous problems, my arms and my twitches and my spasms kind of stopped straight away. And then, like any chemoimmunotherapy, I did eight sessions over eight months. The first two were tough in as much as they made me tired and nauseous. But you can take drugs that counteract that.

So, for me it was quite a smooth transition from being really ill to eight months later feeling “Well, I feel pretty damn good”. And so that was my story really about how I was diagnosed. I was disappointed that it took four years of being ill, four long years of being ill and thinking: “Is this really what old age feels like?” And did I lose something in those four years? Yes, I did, because I’m a very active man. But, disappointed. But now when I talk to other people in my job, that we’ll talk about in a minute, about their illness, it’s kind of the same story for a lot of us. It goes undiagnosed. It goes so undiagnosed for so long. It’s nobody’s fault. It’s just the way it is, I guess.

What do your current symptoms look like and how do you cope with them?

My symptoms now, I would say almost zero, not quite. I do have the odd night sweat. Night sweat is a symptom of WM. Of course, the thing with WM with it being incurable but manageable is that I know, I fully expect that at some point in the future it will probably come back and it may get to a point where I need further treatment. So, I’m keeping my eye on the current symptoms. A little bit of night sweat. I’m seeing my doctor next month, I should tell her that. But apart from that, no real symptoms.

My biggest thing in that respect is staying positive and just noting the symptoms or possible symptoms that could be something else, of course. I must always remember that just because you’ve got WM doesn’t mean you haven’t got something else lurking about. So, yeah, remain positive; I am so positive about this condition and living with it.

How are you currently being treated for WM, and are you participating in a clinical trial?

I did the eight months of bendamustine and rituximab, so I’m now on what we call here in the UK active surveillance, or it’s known around the world perhaps as “Watch and Wait”. I don’t like that term “Watch and Wait”. It’s a very negative term. What is it we’re waiting for? So, we like to call it active surveillance, which is a positive term. It reassures me that my doctor is continually, every three months, actively surveilling me and checking on me and making sure I’m okay.

No, I’m not on a clinical trial. I am fortunate that in Bournemouth, where I live, the hospital, we’ve got a WM specialist, and she does conduct clinical trials. And we have spoken about it several times that if and when the time comes for me to start treatment again and if there is a suitable clinical trial at that time, she will consider me for it. So, I’m definitely up for clinical trials. I always encourage people that I speak to to do clinical trials if they’re offered them.

How do to look after yourself both mentally and physically? What do you recommend to others?

This is a big subject for me. Mental health is something I’m very interested in. I used to be a soldier, used to be a policeman. I have suffered mental health problems long before I got WM. I had mental health issues. In fact, still now, 20 years on, I’m still on a daily antidepressant. So, mental health is a big, big subject for me. I’m so passionate about talking about it and I understand totally, especially when somebody gets diagnosed with a condition like this or any cancer, any cancer diagnosis, the impact on your mental health is probably worse than actually on your physical health.

So, how do I deal with my mental health? I deal with it through doing some mindfulness, and being a guy, ten years ago or whenever it was when I started doing mindfulness I thought this is a bit wishy-washy, but well, it’s very powerful. It’s a very powerful tool to be able to use. In fact, we in the UK, with WMUK, we run a monthly mindfulness class with a professional teacher. She takes us through a mindfulness session once a month, which is very popular. So, mindfulness, I do breathing techniques that I’ve picked up on YouTube just to relax myself when I get, you know, sort of mentally troubled.

I’ve just started this year doing cold water therapy, which is an amazing tool for mental health. I think we all, we’ve all learned to live with Wim Hof at the moment. The guy, I think, is he Belgian or Dutch, I can’t remember. The Iceman, they call him, and he’s got some techniques, cold water therapy techniques, some breathing techniques, and I do those. For instance, for the last three months I’ve not had a hot shower, I’ve had only cold showers, and it’s incredible the mental wellbeing that exposing yourself to cold water can bring. I work with a group of ex-servicemen once a week here in Bournemouth, and we started doing cold water therapy. And these are guys that are troubled by recent conflicts in Iraq and Afghanistan, with PTSD, and you see them come alive, literally come alive for the sort of hour or two after we’ve done our cold water therapy. They can talk, they can engage. It’s a real fantastic tool. As mental, that’s how I deal with the mental side of things.

Physically, physically fit. I am a bit of a fitness bunny. Despite being 68, I still do crazy stuff. I use my rowing machine, I do cycling. I’m a big cyclist. I go to the gym, I walk, I love walking. I do a lot of physical activity. I’m a bit careful how I sort of publicize that because I know from talking to so many patients here in the UK that not all of our guys are in a position to be able to do that stuff. So, I have to be a bit careful. I have to hold back a little bit when I say, “Look, get yourself out and go for a bike ride or go for a walk”, because sadly, some of our patients can’t do that. Some of our guys, peripheral neuropathy is a big thing for WM patients. So, if you’ve got bad peripheral neuropathy, you can’t walk, you can’t use the rowing machine, you can’t run, you can’t do all this stuff. But what I do try and encourage is, is keep yourself as physically active as you can. And if that just means walking around the block once, then do it. Get out, get some fresh air, breathe in some fresh air. Look at the trees. You can then mix your mindfulness in with a little bit of physical activity.

It’s about doing something positive and trying to do something positive each day, I think, is the important thing. I sometimes find that even now I do get tired in the afternoon and I sometimes sit and think: “Bob, is this old age or is this your Waldenström’s?” And so I make myself, rather than lay down and succumb to it, I kind of make myself put my gym kit on and go and do something, whether it’s half an hour on the rowing machine or 3 or 4 hours on my bike. And you know what? I’ve got a psychological theory. Absolutely with no medical background or proof whatsoever. But I’ve got a theory for myself that all the time I’m doing physical activity, rowing, running, cycling, I’m pushing this bad blood that I’ve got in my body, around my body, and in my mind I’m not allowing it to stop and manifest itself anywhere in my body. I just keep it going round and round and keep what little oxygen it can pick up, keep that going round and round, and that’s my way of dealing it.

So, as I say, I’m very positive and I kind of almost apologize to people who aren’t as positive as me because I guess they’re thinking now: “That’s all right for you, Bob, but I can’t do that.” And I totally, totally understand that. And my heart goes out to those people. But I would say: “Just try. Just try and walk around the block.” In England we had a thing last year. I don’t know if you were aware of this, but Captain Tom was a 100-year-old veteran, and he wanted to raise some money for the National Health Service. So, he had what we call a Zimmer frame, a trolley, a walking aid. And he walked around his garden. And I think, I can’t remember how many times he did it, but he raised an unbelievable amount of money. But more than that, his approach, his manner, his enthusiasm, his positivity just shone. It just shone. Sadly he’s passed away now, but it shone out that this was a man who was being so positive and doing what he could. I guess that’s the important thing. He couldn’t do much. He walked with a frame, but, by golly, he did what he could, and it was amazing. So, yeah, positivity. That’s where I am and trying to spread that to other people.

What do you want the general public to know and understand about WM?

Yeah, this is a good question. I want them to know, first of all, that it exists because it is such a rare condition. And certainly, when I talk to people about it, I say I’ve got this rare blood cancer. “Oh, what’s that? Waldenström’s macroglobulinemia? Never heard of it, never heard of it.” So, I guess, our job, my job, your job is to raise awareness of this condition and let the people know that it exists because it’s one of those invisible illnesses, isn’t it? People say to me: “Well, there’s nothing wrong with you. I saw you cycling around on your bike yesterday or you’re always on your rowing machine. There’s nothing wrong with you.” Well, there is. And it’s invisible. You can’t see it.

Also, along with that is the fact that people need to know that we are immunocompromised, we’re clinically vulnerable, and especially at this time with COVID, we’re going to have to learn to live with COVID now for the rest of our lives. COVID is a big deal for us. It could be a big deal for us. Thankfully, a lot of us have had our jabs and we’ve now got antivirals. So, things are starting to happen for us. But in the early days of COVID, I lost two men that I know locally in my Bournemouth and District group, two men died of COVID. Both had comorbidities. Maybe that was the issue. But it’s real. We are immunocompromised, we are vulnerable. So, people need to know that.

And really the other thing is that to support the families of those people is to let the public know that it’s not just a person. It’s the same with all cancers, of course, or illnesses, of course. It’s not just the person who’s got the illness, but other people are affected by this, their families. And a big thing for me here with this condition in the UK is I’ve got a lot of very worried wives. So, husbands have got WM. Being men, they bury their head in the sand. They perhaps go into denial, but their poor wives, they’re just worrying themselves sick about their husband. And so it’s really reaching out to people to understand that it’s a family condition, basically. But I do concede that is the same for any cancer.

What are your tasks as the Patient Support Manager for Waldenström Macroglobulinemia UK (WMUK)?

Okay, well, what are my tasks? So, when I was offered the job; I guess I should tell you why I got the job. We had a new CEO take over, Jane, and she rang me and said: “Look, you’re, you talk about …”. I was very visible on social media and all these kind of things, trying to promote and talk about it and raise money for the charity. “We’re looking for somebody to be a patient support manager.” And I thought, well, I have no experience whatsoever in anything like that, having been a soldier and then a policeman. And then I went back out to Iraq and Afghanistan as a security mentor. So, no experience whatsoever in this.

But I thought, well, I can talk to people, let’s give it a go. She told me what my parameters were, and I started. And I kind of made up my own job description almost, based on what she wanted me to do. What do I do? I support, I inform, I empathize, I encourage, I connect people together and I signpost people and I raise our profile. What does that mean? The first thing I did was, on the back of my successful Bournemouth and District support group, which, by the way, just before COVID started I had about 60 members. These weren’t all WM patients. There were probably about 30 patients and then 30 wives, husbands, daughters, sons. And it was gaining momentum. We met every six months; we had three sessions and then, sadly, COVID came along and knocked them on the head.

But I thought, right, well, we can continue this. We continue this through Zoom, Teams meetings, whatever. So we set it up. And then I thought, well, in this case, I need to set up these sorts of groups all over the country. So I did. And we now have 19 groups around the UK. 13 of them are regional groups; for example, I’ve got an Ireland group, Scotland group, a Wales group, a London group, a North West group, a South West group, all these groups. But in addition to that, I set up some bespoke groups. I was conscious that we had a few people in our demographic who were, for example, young mums. Perhaps, by that I’m talking about ladies under 55 who’ve got children under 18. Whole different range of issues that they need to worry about. They’re still bringing their children up. I’ve got a young mum in Birmingham. She’s got two kids who are about, I think, four and six. So, the next 20 years she’s going to be looking after those guys, living with this condition. She’s got a job, she’s got a mortgage. Whole different range of issues to somebody like myself, a retired old man.

So, we set up a group called Young Mums, which is great. And it then transpired that we were getting younger and younger people being diagnosed. We think that this is an old person’s condition, but I guess with testing and such things now, younger people in their late twenties, early thirties, through their thirties are being diagnosed. Again, a whole new range of issues. These are people of working age, with their mortgages, with their families, all this kind of stuff. So, we set that group up, and just really a couple of other groups. There’s a comorbidity that goes along with WM, which is called Bing–Neel, which is when the condition crosses the blood–brain barrier, and it can affect your spinal fluid and the fluid around your brain, which has a lot of other side issues. But it can be managed, can be treated. So, we set our group up for that.

And interestingly, in my Bournemouth group, I’ve now got about eight or nine English people who live in Europe. So I’ve got two or three people who live in France, I’ve got one in Germany, I’ve got one in Portugal, I’ve got one in Holland, one in Switzerland and one in Belgium. And they’re English people, but they live in those places, so they’re in my group as well. So, it’s really supporting all of those. We do it at the moment through Zoom meetings; it’s all we can do, although in November here in the UK we have our patient–doctor summit where we’re inviting some of the guys to come along in person if they’re happy to do so and get to meet each other. And it’s really on those meetings, we listen to each other’s journeys.

By the way, it’s important to say that WM is an odd condition in that everyone of us has a different journey, with different side effects, different symptoms. It’s such a varied and secretive sort of disease, the way it affects us. It’s not like your breast cancer, which is very linear, or your testicular cancer, which is very linear. This is such a varied thing. So, it’s listening to each other’s journeys, empathizing, encouraging those guys to perhaps go and see another doctor, get a referral to a WM expert. But it’s also about connecting them with each other. And this is something I’m very fond of doing; if I look at my screen and I see a lady looking back at me who perhaps is a widow, and then there’s another lady on the screen who’s a similar sort of age, maybe a widow or doesn’t matter if she’s a widow or not. But I think those two could do with talking to each other, and I will invite them both separately, “Would you like to meet up?“, online of course, with so-and-so.

But already that is starting to transpire as we come out of COVID. We’ve got a group in East Anglia, which is in the east of England. About five ladies, they all meet up in a garden center and have a cup of tea once a month. And it’s great because they are talking to each other about their condition, they’re learning about each other. And there’s that sort of camaraderie there. There’s the serious side to it sometimes where I will signpost somebody, you know, “You need to speak to your clinical nurse“ or “You need to go back to your consultant”, or “You need to go to your general practitioner and talk this through with them”, because people just don’t know what to do. I’m not a doctor or a nurse. I don’t know what to tell them medically, but at least I hope that I can signpost them to where they can get the answers that they need.

And then the other thing I do, really, is to try and raise our profile as best I can. I love doing charity stuff. For instance, in November this year, I’m taking a group of people over the Brecon Beacons, which is in Wales. It’s where the army do their extreme training. It’s the second biggest mountain in Wales. Harsh, harsh place. And I’m going to take a group of friends and WM patients and a couple of doctors and a couple of nurses, and we’re going to try and raise some money, but more importantly, raise our awareness. And then next year, we’re hoping to do a London to Paris bike ride, again with doctors, nurses, patients, to raise much needed funds for our charity, but also to raise awareness.

So, I guess that those are my aims, and that’s my job description, and it’s something I absolutely love. And I said at the beginning that I had no training, but I have had training. I’ve got a life’s worth of experiences, of training, yeah, of experiences that have led me. I almost believe that all those experiences have led me to this point. Too right, I probably annoy some people. Perhaps I rub some people up the wrong way. It’s not intentional. It’s because I’m so passionate about wanting to help them and wanting to encourage them. So, I’m learning a little bit about myself as well when I do that. But yeah, that’s my job as a patient support manager.

Many thanks for your time and for your insight.