Graham - Interview 61

Age at interview: 16

Age at diagnosis: 16

Brief Outline: The trial was on the treatment of children and young people with Hodgkin's lymphoma. Deciding to take part was confusing because of the different treatment options, but having plenty of information and talking to his parents helped and he agreed to take part.

Background: Graham is aged 16, White British and lives at home with his parents, twin brother and other siblings. He enjoys fishing and attends a local high school. Graham was diagnosed with Hodgkins's lymphoma at the age of 16 and after the first two months of treatment was invited to take part in a clinical trial.

More about me...

Graham, aged 16, is White British and lives at home with his parents, twin brother and other siblings. Graham attends a local high school and enjoys fishing with his dad and twin brother. Graham was recently diagnosed with Hodgkin’s lymphoma and after the first two months of treatment was invited to take part in a clinical trial on the treatment of children and young people with Hodgkin’s lymphoma. Graham was unsure of the purpose of the trial but understood that it was to find out if treatment is just as successful by replacing one drug with another drug that is less likely to cause infertility, and to find out what the long term effects are of each drug on fertility.

Deciding to take part was confusing because of the different treatment options and knowing which one would be best for him. It was really helpful to have plenty of information and the opportunity to ask questions, he also discussed it with his parents. It took two weeks to make the decision, but he finally agreed to take part.

Graham wanted to take part because he felt he would receive better treatment by being in the trial and more people were looking at his tests and scans. He says the treatment hasn’t changed, he still receives chemotherapy, but the treatment plan is different and he has to attend the hospital more often. For the first treatment he attended the hospital day ward on certain days and now he is in the trial he receives the treatment in ‘blocks’ or cycles; attending the day ward, seven days of tablets at home, two weeks off, and then repeats the cycle. He will be in the trial for four months.
 

Taking part in the trial didn't seem any different to the normal treatment says Graham.

It’s pretty much the same as before I was in the clinical trial. Just, still have to go in to hospital for chemotherapy. Nothing’s really changed. Just a different treatment plan.

 

Just a different treatment plan? What’s, what’s, what’s different about it?

 

Just, for the first lot of treatment I had to go in on certain days for a short period of time, like an hour each day. But as it changed, I have to go in two days each treatment cycle for six hours each day. And that’s it. So it’s just changed times.

 

Just changed times? Is that okay?

 

Yes.

 

Does it, do you have to keep, you know, going to and from the hospital to do that?

 

Yes, you have to go in on a certain day and just have chemotherapy.

 

And is that sort of weekly?

 

Yes, you have to start the treatment and then after a week, and then two weeks off and then start again.

 

So you have a week, a day?

 

A day at the start and then seven days, seven days at home on tablets. And then another, another day, and then another seven days on tablets. And then two weeks off, and then starting again. Yes, I take steroids and the procarbazine which is chemotherapy as well.

 

And is that done by drip?

 

I have, the chemo, yes, is done by a drip.

 

And how does it feel like going through all of, you know, being in a trial? What does it, what does it, does it feel any different?

 

No, not really. It doesn’t seem to feel any different than the normal treatment.

 

It was confusing with all the different treatment options, but being able to ask questions was...

I’ve been diagnosed with, with Hodgkin’s lymphoma in, in March. And I’ve had four lots of treatment. Going on to the fifth lot of treatment now for the clinical trial.

 

And when, was it March this year?

 

Yes.

 

March this year, you were diagnosed? And at what point did they invite you to take part in a trial?

 

It was after the first two treatments. That was after the first two months of treatment they invited me for a trial.

 

How did that feel at the time? Because it was quite soon, wasn’t it after…

 

It was a bit confusing. I didn’t know what, like whether to go on to the trial or not. But I decided to take the trial and get on with it.

 

What did you find confusing at the time?

 

Well, you could pick different treatments and find which one was be-, best for me and which was the best one to take.

 

So it was sort of deciphering what was the best way forward for you? Did, did they, was there, did they give you lots of information to read?

 

Made it helpful, easy.

 

Was it easy, was it easy for you to sort of read and understand?

 

Yes.

 

Was it a lot of information?

 

Yes. It was, like they highlighted the main bits. Which was helpful.

 

Did you have, what, did you have questions you wanted to ask them?

 

Yes, just like which, which, how often would I be in hospital, which one more, and which one, different treatments and stuff. So a few questions.

 

I think it’s quite important, isn’t it? Were they able to sort of ex-, answer all your questions? Did they sit and explain with you?

 

Yes. We spoke to the consultants and they explained about the different treatments.

 

How, how did they sort of go about that?

 

Well, we were in hospital one day. We just, mum organised to speak with the consultants and we just, she explained what like different treatment, like clinical trial, what would be normal

 

And did they explain the difference maybe between what, having the usual treatment or the treatment you would have had to being in a clinical trial? Did you understand what that was?

 

Yes, they explained that, they asked me to like, the, the clinical trial leaders first like, before like saying that, scan results and stuff like that and treatment.

 

Although Graham experienced some side effects, he wasn't shocked because everything had been...

And did they mention about any side effects at all?

 

Yes, when I started all the treatment they explained it all, like what kinds of things can happen like hair loss and stuff and all different, they made it easy to understand. So what to expect, won’t be shocked.

 

And did you have any questions at that point? Was there anything that, you know, worried you at the time?

 

No, not really because I sort of expected all the things like.

 

They were what you expected anyway?

 

Yes, like I thought about, about hair loss and all that, but I wasn’t really bothered.

 

Was there anything else? I mean have you experienced, apart from the hair loss, have you experienced anything, any other side effects in relation to…?

 

I’ve had bad cramps like with the, with the steroids and bad back, pain in my legs and stuff. But they give you painkillers to monitor it, so you’re okay.

 

They give you more pills?

 

Yes.

 

But were you concerned when you were getting those? I mean were they clearly explained that you might get cramps?

 

Yes, yes. They explained all the stuff that could happen and then they told us how they’d try and stop it and stuff and get rid of it if it happens.

 

So can you tell me, can you remember what the side effects were?

 

Of?

 

Of the, when you were in the trial aspects of the treatment and the drugs that you were taking or are taking.

 

I think, you have vincristine which is chemotherapy and it can make your, all your joints ache, like your knees and your back and stuff. And it’s very painful, but they give you like painkillers for that. And the steroids can just like make you constipated and stuff and give you, yes, I think it’s mainly the one from the steroids make you constipated. And they give you more pills to get rid of that.

 

Like a laxative type thing?

 

And that’s about it really from the chemotherapy.

 

And you’ve had, you’ve had all of those things that they’ve said?

 

Yes.

 

And how does it feel going through, you know, in, with all those side effects as well?

 

If you take the tablets they give you and stuff and, it doesn’t seem to be as bad, like they get rid of it pretty quickly. But can make you feel pretty bad, then you’ve got bad head and like and backache.