What it feels like: Living with a rare cancer

Paul Kitchen was diagnosed with Waldenstrom macroglobulinemia, the same rare cancer that killed his mother.

Emma Jones 8 minute read September 27, 2021
Waldenstrom macroglobulinemia

Paul Kitchen lives with Waldenstrom macroglobulinemia. SUPPLIED

When Paul Kitchen was diagnosed with Waldenstrom macroglobulinemia (WM), he was already aware of what the diagnosis meant: his mother had passed away from the same condition years earlier.

Waldenstrom macroglobulinemia (WM) is a rare form of non-Hodgkin lymphoma, a type of cancer that affects the white blood cells. It’s estimated there are 150 Canadians diagnosed with WM each year and about 1500 patients in total. Although not genetically passed on, doctors believe that Paul may have inherited a susceptibility to the condition, eventually leading to this diagnosis.

Paul spoke with Healthing.ca to chat about how treatments have improved and his continued efforts to raise support for the WM community.

This interview has been edited for length and clarity.

Can you tell me a little bit about WM?
It’s called Waldenstrom Macroglobulinemia. It’s a very rare bone marrow cancer that affects maybe 150 Canadians each year. It’s not a very prevalent disease.

When were you diagnosed?
I was officially diagnosed in 2014. But I had some health problems in 2011 — there were clues that I had it. That’s just one of the issues with this disease: because it affects the bone marrow, and the symptoms come from the malfunctioning of the bone marrow, WM has a variety of symptoms. One person can have peripheral neuropathy, another person can have lung damage and another can have have eye problems. That’s what  makes it really hard to diagnose. I think there are a lot of Canadians who have Waldenstrom, but don’t have a proper diagnosis.

Right now, to be diagnosed with WM, you have to have a bone marrow biopsy, which means that doctors have to grind through your hip bone. They give you a little local anesthetic. I remember as my doctor was leaning into me trying to push through, he said, You have awfully hard bones. And for the next six months, if I sat in a way that hit that spot, it would be painful.

You said there were clues that you had WM as early as 2011.
I got a lung infection in March which didn’t go away till June. And even though I had four courses of antibiotics, every time the infection would come back as soon as I stopped the antibiotics. [Your body has] an infection fighter, called IgG, and my levels were extremely low.

I got sent to a respirologist, and he said that even though the infection is in the lungs, it’s not the lungs — they are just the recipient of the problem. Then I saw a disease specialist who didn’t diagnose the disease, but did uncover the the reason for the infection — low IgG. So I was prescribed what’s called IG supplements, which stops my infections. In 2014, my hemoglobin started to drop, and then I was finally diagnosed officially.

So you were fighting illness for years before you finally got your diagnosis. What went through your head when you found out?
I felt that I was really lucky. My mother was diagnosed with WM in the late ’70s and she didn’t have any treatments at all. She had a lot of blood transfusions, which really is a form of palliative care.

When I was diagnosed, I was told there are different options, different treatments. I thought, This is way better than my mom’s [experience]. I was very fortunate that I knew what WM was, and also because I thought it was positive that there were so many treatments.

[I also had] huge support from my wife and my family, as well as my hematologist here in St. John, New Brunswick. I also made contact with the Dana-Farber Cancer Institute in Boston, which has a whole unit dedicated to WM. I felt really fortunate to have the world’s leading specialists talking to me about this rare cancer.

I kept my job teaching and just started the treatments. And I was okay.

Is WM an inherited disease?
No. What I inherited from my mum was the susceptibility of the particular mutation happening [that causes WM]. Every one of us has mutations every single day, but most of our bodies are able to find it, get rid of those incorrectly made cells, and move on. But not in my case.

It’s hard to imagine getting diagnosed with cancer, especially the same cancer that caused your mother’s death, and feeling so positive.
I kept thinking about my mom who didn’t have any treatments, while I had access to a lot of options. I’ve lived with this disease for 10 years and I’m still living a full life.  It doesn’t terrify me — it’s just something that’s going to be inconvenient. I’m going to live with it for a long time, and I’m planning to die with it, rather than from it.

Tell me more about how WM is treated.
The first treatment I had was chemotherapy: a 17-week program where I went to the hospital and had chemo once a week. It was not that heavy, I didn’t lose my hair. I was tired, but I don’t think I ever missed a day of work. I was living on the school campus where I was teaching — it’s a little boarding school — and I remember sneaking home for lots of naps.

When that finished, I had two years of maintenance chemo, which was the same treatment once every three months, instead of once a week. So it was, again, not particularly harsh. I kept teaching for two years, and then in 2016 I figured that I couldn’t predict how I was going to feel, so I resigned.

Did you share your disease with your students?
Yes, we have a little community chapel service at the beginning of every day, and one day, I just told them that in life, there are things you have to go through and sometimes there’s tragedies and sometimes there are inconveniences, that sometimes when we get a bruise or a bump, we get a little too emotional. I told them that this is something that I have — it’s a bump in my road — and that we were not going to have any tears. ‘If one of you has a car accident and doesn’t come to the school the next day, that’s a tragedy,’ I said. ‘What I have is a bump.’

Are you doing chemo now?
No. At the beginning of last summer my hemoglobin dropped, and I knew I needed to go back into treatment. I started on taking one of the new treatments — called a BTK inhibitor — and my hemoglobin got better, but I had also had a bunch of side effects. I used to have atrial fibrillation and [it came back with this medication]. That was devastating. So in March of this year, I switched to a second generation BTK inhibitor that was just approved in Canada, and my hemoglobin has continued to go up but my atrial fib has not come back. I’m still really tired, though, which is frustrating. I’m a pretty active guy, and now I get fatigued frequently. I was doing some work around the house and I had to lie down for 15 or 20 minutes just before the interview. I don’t have that stamina that I used to have. But in terms of everything else in life, it’s pretty good.

What does it feel atrial fibrillation feel like?
It’s when your heart beats irregularly. Lots of people live with it, no sweat. Sometimes they know they have it, sometimes they don’t. Mine just felt awful.

You’ve been up to quite a bit recently to support the WM community.
When I retired from the school I was asked to join the board of the WMFC, which is the Waldenstrom Macroglobulinemia Foundation of Canada. I did that, and unfortunately the leader had decided to leave and so I ended up as chairman of the board for a little more than two years. I stepped down last May, just because that’s when I was switching treatments, but I’m still on the board. I’m happy — I think the more people that know about WM, the better off we are. And the more doctors who hear about patients with WM, the better off we are. So I’m doing as much as I can.

In May, I invented this silly little thing where I would walk 10 kilometres a day for the month of May to increase awareness of WM and to raise some money. I got a total of 343 kilometres during the month. All my neighbours volunteered to walk a day with me, and my wife walked miles and miles. Even the group that I work out with got involved — every Saturday morning instead of going to the gym, we trudged off and did our 10k. I also had a website so that people could follow how far I walked every day, which was all very cool. A couple of national news networks invited me for a quick interview — it got me some publicity and I was able to raise $35,000.

That’s the goal of the WMFC: to raise money to help with the research for WM. WMFC has raised over one million dollars in the last 20 years.

We have lots of support groups right across Canada, I think we have eight or nine of them. WMFC holds education forums where we gather to hear world leading experts talk about treatments and research. It really is an organization that helps people.

My mother never met another person with this disease in her life, and I’ve met hundreds. Just the space of 40 years has made all the difference. There’s nothing special about me, but I’m on the lucky side that there’s these treatments and I have the support of other people who have [gone through it].

More information on Waldenstrom Macroglobulinemia and resources are available on the Waldenstrom Macroglobulinemia Foundation of Canada website and the The Bing Center homepage.

emjones@postmedia.com | @JonesyJourn