Things I Have Learned about Hairy Cell Leukemia

When I was first diagnosed with hairy cell leukemia in 2007, I honestly didn’t know anything about blood cancer, let alone this very specific and rare type. And since it is so rare, there seemed to be no one else who I could ask about living with this diagnosis.

Social media was not yet on my radar at this point in my life, and the cancer care team in the town where I lived at the time was unable to recall anyone else who they had treated with hairy cell leukemia. So I am sharing some of what I have learned and experienced over the years in case there are others looking for some answers regarding HCL.

Learning about HCL

Here are some of the things that I recall that are commonly shared with us when diagnosed with HCL:^1,2

• HCL is treatable but not curable
• HCL is 4 times more common in men than in women
• There are about 500 new cases of HCL in the United States per year
• Some people with HCL may have very long remissions, while others may need to be treated several times within their lifespan
• The chemo drugs used to treat HCL will not affect hair follicles
• Remission is likely with treatment
• HCL is a slow mover

I was treated 3 different times

I have been treated for HCL on 3 separate occasions. Remissions have lasted 6.5 to 7 years each time for me. This varies from person to person, and some never require a repeat of treatment.

1. I was initially given the chemo drug cladribine for 7 days with a continuous 24-hour infusion, so I had to be hospitalized. As far as I know, they no longer routinely recommend this course of action.
2. For my second bout, I was given cladribine again, but for 5 days straight as an outpatient. This is how Cladribine is most commonly given today.^1,2
3. My third bout was a bit more of a puzzle because I was diagnosed with a relapse in 2020 during the lockdown, and the uncertainties of COVID-19 made an impact on when and what I would be given for treatment. So even though the cladribine had worked 2 times prior, my doctors didn’t want my immunity to be knocked all the way out as this drug tends to do because of its intense, short duration of treatment. And they also didn’t want my body to become resistant to this previously used drug. So in 2021, I was given the drug pentostatin every other week for 6 months, followed by rituximab weekly for 8 weeks. I’m pleased to say I am once again in remission and doing quite well.

The side effect pain was intense

The side effect that was the most difficult during all 3 bouts was bone pain. I would writhe in pain at times, and it made it very difficult to sleep. My belief is that my bone marrow hadn’t been properly working properly before treatment. So when it started functioning normally again, I felt it in my bones. That belief was a helpful coping mechanism for me as I gratefully imagined my bone marrow doing its job to make healthy blood cells. Not going to lie – it was horrendous in the moment! But the memory of that excruciating pain has passed.

Grateful for increases in life expectancy

One fact that I learned is that in 1984, someone diagnosed with HCL had a life expectancy of about 4 years. Today, those of us with this rare leukemia can expect our lifespan to be close to what it would be without a hairy cell diagnosis.^1,2

Even though I can’t say that treatment is easy, and even though I live with fluctuating blood counts and fatigue, I feel that my life since the initial diagnosis has been pretty normal. There are speed bumps in this journey as well as major potholes, but I’m able to work, travel, and do several tasks on most days. And through social media and the internet in general, I have made connections with people with HCL around the world. I’m also grateful for the doors that this diagnosis has opened in my life, and I feel like I am generally healthier in body, mind, and spirit than I ever was before.