Jade’s Stage 2X Classical Hodgkin’s Lymphoma Story

Jade was diagnosed with stage 2X Hodgkin’s lymphoma when she was 21. She went into remission after going through ABVD chemo, then the same regimen without bleomycin (AVD).

Jade also highlights how she got through losing hair after chemo, self-advocacy and survivorship.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Diagnosis

What were your 1st symptoms?

I only had one: itching on my legs and feet. 

Describe the first visit to the doctor

The first time I saw the doctor was a year ago, and it was for the itching. I was only showing him my legs to see what was wrong.

I was prescribed creams to try out, but they didn’t work out. I saw the doctor a second time, and we tried other creams. They didn’t work.

In March of this year, I saw a dermatologist. She ended up referring me to an oncologist when I got some scans back, because there was something showing up.

What tests and scans did you go through?

I had one CT scan, one PET scan before I started chemo, and one PET scan halfway through chemo. 

How long did it take to get those results back?

 I got them the same day.

How did you learn the diagnosis?

My doctor called me the day that I had my PET scan. She said there are 4 places that are lighting up.

That’s how I learned about my diagnosis.

I had to go in the next week on Monday to do all the testing. At the end of the week, I was diagnosed with Hodgkin lymphoma.

Processing news of the diagnosis

I was shocked. At first I was really scared. I remembered I cried a lot, but I was more in denial.

For a few days, I didn’t believe it, and it wasn’t until I started chemo that I really realized what was happening. Now I’m fine with it. 

»MORE: Processing a cancer diagnosis

How did you break the news to your loved ones?

When I got the call, I was with my mom, so she knew when I was talking with the doctor on the phone. I waited until my dad came back from work to tell him, and I just said, “It’s Hodgkin lymphoma.”

I texted my friends and asked them if I could meet them very soon. I saw most of them the same day or during the weekend, and I told them what was happening. That’s how I told everyone who I’m close to.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment Decisions

How did you decide where to get treatment?

I didn’t. When I was referred to the oncologist, I just went to that hospital. I just stayed there because I liked the hospital.

I could’ve been transferred to my city, but the transfer of the documents and all takes a bit of time. They preferred having me with them, so I stayed there.

Whose decision was it to do chemotherapy?

That’s what the oncologists said. It wasn’t my decision. 

Chemotherapy

Describe your chemo regimen

I did 6 cycles of ABVD chemo.

What is each week like?

I get my chemo every 2 weeks on Thursday. The day that I have chemo, it’s just a regular day.

The week after, I have my side effects, but they’re not that bad. My week off, I just go on with my life, and I hang out with my friends.

ABVD chemo side effects

I’ve had mouth sores, bone pain, sore throat and numbness in my fingers once.

The few days after chemo, my taste buds are kind of weird — everything tastes sour.

How do you deal with these side effects?

My first 2 treatments, I had mouth sores, and I didn’t really know how to deal with them. I talked to my doctor, and he prescribed me a mouthwash that really helped.

I also looked online, and a lot of people said that they would eat ice during chemo and that would help.

Ever since, I’ve been doing that, and it’s really helped. I don’t really have mouth sores anymore. For bone pain, I don’t really have a way of dealing with them. I just take Tylenol, and they go away after a few days.

»MORE: Cancer patients share their treatment side effects

Quality of Life

Did you experience hair loss?

Yes, I am going through that right now. I have been losing hair for a few weeks, but it’s not that bad. I’m probably going to shave it soon because it’s really annoying.

Were you surprised when you lost hair?

I was expecting it, but yeah, I was surprised. I remember I was showering one morning, and I was washing my hair. A few hairs came out. I’m not the type of person to lose hair, so I was really shocked when it happened.

The few weeks after that, I would lose hair all the time. To this day, I’m losing hair all the time. At first I was shocked, but now I want to get rid of it. 

»MORE: Dealing with hair loss during cancer treatment

Do you have wigs?

I have 2 wigs and scarves.

What has been the worst part of your treatment?

The worst part, I would say, would be kind of having to pause your life for 6 months.

Especially because I am 21, and I’m studying in school. When I was diagnosed, I was doing an internship, and I had to stop.

I also had to stop work. Pausing your life for 6 months really is not fun.

Relationship with caregivers

At first it was hard for my parents, but they wouldn’t really talk about it with me. They would mostly talk about it between them. I think it’s hard for them to really see you go through that. They really want to try their best, and they always, always check up on you.

Reassure your parents that everything is going to be fine. I think that’s what they’re mostly scared of, that something is going to happen.

Just make sure that they’re feeling positive about this and try to be happy when you’re around them. Of course, you can be sad around them, but not all the time because I feel like that makes it worse for them.

Financial toxicity: paying for cancer treatment

I have money saved up and live with my parents, so I don’t have a lot of things to spend money on. At first I was fine to stop work because I don’t work a lot of hours a week anyway.

I went to the government in Canada and asked for the medical leave money. You get paid every 2 weeks for 15 weeks, so that helps.

I’m finishing up in July, and after that I don’t get any money. I think I’ll be fine. 

What kind of help have you had preparing for issues outside of treatment?

Every time I have chemo, my dad doesn’t work so he can come with me all the time. For my appointments, my mom works during the morning, so she can always come to my appointments.

We asked for my appointment to be in the afternoon so my mom could come with me. They’re always there for that so they can drive, because it’s not in my city. It’s an hour away.

My parents are always the ones driving because after chemo, you’re not feeling like driving, and they’ve been really helpful for that. 

The new normal following cancer

At first it was different because that’s all that’s on your mind.

You’re always thinking about it, and there’s not a day where you don’t think about your cancer. At some point, I got kind of used to it, and I tried to get on with my life as much as I could.

Right now, I’m in remission. Ever since I’ve heard that news, I just don’t think that much about cancer anymore. Of course, I still have my moments where I think about it, and I get sad. I remember I’m in remission. That’s kind of the new normal.

Message to newly diagnosed patients

My advice would be kind of take everything a day at a time.

For me, personally, when I was first diagnosed, I would always think about what was coming for the next week and the week after that.

I would get so stressed over that, and my mind would kind of go crazy thinking about all the appointments and all of that. But once you start thinking about what’s going to happen today, it helps you feel less stressed about everything that’s about to happen. 

Don’t hesitate to ask for anything from your friends and loved ones.

They want to help as much as they can, and you don’t need to be shy to ask for anything. 

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Hodgkin’s Lymphoma Stories