Interview 36

Age at interview: 40

Age at diagnosis: 28

Brief Outline: She was diagnosed with chronic myeloid leukaemia after developing tiredness, aches and pains and weight loss. She was treated with interferon then moved to Glivec (imatinib). Her disease is stable but she regrets that treatment has caused infertility.

Background: She is a Human Resources Consultant. She is married with no children. Ethnic background: Asian.

More about me...

She began to feel very tired and sleepy with aches and pains and was also losing weight rapidly, all of which made her everyday activities a struggle. She went to her GP, who took a blood sample and phoned within 24 hours and asked her to return to the surgery for the results, where she was told that she had (chronic myeloid) leukaemia. She was admitted to hospital where they first removed her excess white blood cells then treated her with interferon and some other drugs. She remained on interferon for some years and initially was scared of injecting herself so her husband did this until she summoned the courage to do it herself.

 

A few months later one of her consultants thought her CML was progressing from the chronic to the accelerated stage and that a bone marrow transplant was needed. All of her siblings and cousins were tested but none were a close enough match to be a donor so it would have to be an autologous transplant. Meanwhile, she travelled to the Memorial Sloan-Kettering Cancer Centre in New York at her own expense to obtain a second opinion, which was that her disease had not progressed so a transplant was not necessary.

 

In 2000 she was one of the first batch of patients who were entered onto a trial of a new drug called Glivec, and she has remained on this drug ever since. Having become used to having to carry the interferon injection kit with her wherever she went, she found taking one pill of Glivec per day much more convenient. She had been unaware of any side effects of the interferon while taking it but as soon as she switched to Glivec she realised how much better she felt.

 

At the time of diagnosis she had been married for less than a year so her newly married life unusually became dominated by hospital visits and treatments. A few months after diagnosis she decided to give up work in order to concentrate her energies on getting better. She returned to a part-time administrative post about eighteen months later. When she was told that her disease was under control she felt better able to plan her life and decided to return to full time education to do a masters degree and begin a professional career.

 

When she was diagnosed she was given the opportunity of freezing some embryos before starting treatment that would affect her fertility. However, at the time she and her husband did not take up this offer, preferring to concentrate on treating the leukaemia, a decision that she now regrets. It may not be impossible for her to conceive a child now but she would have to stop taking her Glivec in order to do so, placing herself at risk of recurrence, plus research evidence suggests that any resulting fetus may not be entirely healthy.

A young woman was glad that her parents had been visiting from India at the time of her CML* diagnosis so she avoided an awkward phone call and they could discuss it with the consultant.

So you mentioned your parents. Are they back in India?

 

They are back in India. They were visiting at the time that I was diagnosed so it was quite a shock for them as well. But they are quite pragmatic individuals so they understood it and they dealt with it well in their way, but well. I mean they didn’t succumb to feeling, “Oh my God, what’s this happened?” They just went about their normal daily lives but they were there for me. They always supported me and they’ve always helped me in whatever way possible.

 

So perhaps in a way it was fortunate that they were over here when it happened because they might have felt very…

 

Yes…

 

…differently.

 

…I think they at least got a sense of the full picture because had they been back in India it would have all been explained to them over the phone and I think that might have been a little bit more difficult. Here they had the chance of actually going in and speaking to the doctors and seeing for themselves what exactly, what it entails and what the whole picture, rather than just hearing it sort of second hand. So that was good for them actually.

Having bone marrow samples taken under local anaesthetic was painful and unpleasant so she asked for sedation, which she prefers although she cannot work afterwards. Now she has blood tests instead.

But I remember, you know, before PCR’s* where it’s just a matter of a blood test and they can tell your counts, I used to have my bone marrow taken out, which was very painful. Every time I went for my sort of meeting, my appointment at the hospital just to get the counts, they would have to extract some of the bone marrow, and that was really painful and very, very uncomfortable. So I used to always ask to be sedated rather than be locally anaesthetised before they could actually extract it. So that was very, very uncomfortable but since then it’s been fantastic because now it’s only a blood test.

 

Tell me all the graphic detail.

 

Well, they would take it out of the lower back and, I can’t remember what it’s called, if there’s a specific term for that, but anyway they would locally anaesthetise the region and they would put me on my side and they would insert a huge thick big needle. And although I wouldn’t exactly feel pain as such but I could feel the needle inside of me and poking around and them extracting the, you know, the whole feeling of something being sucked out of my system. And that was awful, absolutely awful. It was, you know, I couldn’t bear it so I just said to them, “Listen, it’s probably best if you just sedate me so I’m not aware of this whole thing.” And they were quite reluctant to do that but eventually they agreed. And so the last few times I’ve had it it’s been that but, you know, PCR’s* have been a real blessing so that’s been great. Yes.

 

So what difference does the sedation make to you?

 

Well, I mean usually I would take time off work and go in for my appointments and that would really, you know, being sedated would really take the, it would, I wouldn’t have been any good even if I went back to work. It would take me a while to sort of get out of it and be awake and alert, but it would still make me, you know, leave me feeling quite groggy, a little bit unsteady on my feet. So even if I did go back to work, which I did, but then it, I wasn’t any good at actually doing anything, so I would just sit there until five thirty and then leave. So but with this it’s really, it’s very, with the PCRs* it’s just going in, a couple of hours, you know, it’s normal blood sample collection and then you’re fine, there’s no impact on the body at all. So and then of course there would be a feeling of soreness where the needle has gone in and your back has been punctured. So that feeling of soreness will probably last for a few days, so it wasn’t hugely pleasant.

 

So even though you felt groggy after having your sedation and it would interfere with your day’s work, you would still prefer to have the sedation to have your bone marrow taken out than have it without?

 

Yes, I mean just the discomfort of having the needle poke around and that was absolutely awful. I couldn’t bear it, so I just preferred sedation. So, yes it was good.

 

*PCR' Polymerase Chain Reaction. A test which looks for genetic changes in cells. It can find one leukaemia cell among a million normal cells.

Her CML* was treated with imatinib (Glivec) when it was first being trialled in the UK; it worked for her and she has taken it ever since.

And so that’s how it’s been. Well, initially interferon and since then my drugs have changed. In 2000 I was lucky enough to be part of the Glivec trial, or the imatinib trial as it was known at the time. I was one of the first or second, one of the sort of initial group of patients who were on trial and luckily it worked very well for me and since then I’ve been on Glivec. And yes, I’m doing fine so things are I think nicely balanced out at this stage. Yes, so it’s not been a very difficult ride. It has had some impact on work and on family but overall I would say I’ve been lucky with the way things have turned out for me.

She regrets that she didn't freeze some embryos when she had the chance. She would have liked to talk through the pros and cons with someone but this wasn't offered so she didn't make it a priority.

But it has obviously, I think it has affected, it’s played a part in us, me not having any children. Not because it was completely medically impossible, I don’t think that is true, but I just think at the time we were given the option of freezing the embryos, but it was such a difficult time and such a confusing time for us, because at the time of diagnosis, I don’t think we, and besides we were young then so we didn’t really think about, we hadn’t really thought about children and family and all of that. And when this option was given to us I think we just, we felt we had to deal with the illness and this could probably take a back seat.

 

And unfortunately because of the fact that we neglected it at the time, now in hindsight I feel it was such an important decision and we should have actually acted on it whilst we had the opportunity, and we didn’t.

 

It would have been completely possible had I persisted, but for some reason we never actually got round to weighing up the pros and cons and making a decision and sticking with it, which is something at the time it didn’t seem like a big deal, but now in hindsight I feel that’s a major chapter in my life which is probably missing, which needn’t have been missing, had we had the foresight. But on the whole I can’t complain. I mean the drugs worked fantastically well for me, I’ve still got a good career and, yes, things are fine so, yes.

 

Do you think when the professionals talked to you about this at the very beginning that they could have done more to kind of spell out for you the size of the decision, the importance of it at the time, or do you think it was kind of brushed under the carpet in some way?

 

No, I don’t think it was brushed under the carpet because I think on their part they did actually do what they can. I think they did do what they could at the time, because they did repeatedly ask us to come in and make an appointment for coming and getting the eggs harvested and so on. But we never actually took them up on that offer and we never actually took it seriously. I mean on that front they were quite eager to get the process up and running, but maybe if they had somebody, not a counsellor but somebody, an information officer or somebody who could have actually just taken us through the pros and the cons of not making this decision. That might have signalled some sort of alarm bells in us amidst all of this other confusion of trying to adjust to being diagnosed, and treatment and all of that, maybe it would have made us stop for a bit and think about it. But I don’t think there was any of that. It was just that we were referred to the maternity, this other service and they just kept telling us to come in for our appointment to harvest the eggs. So that might have helped. I don’t know, but no, there wasn’t anything like that at the time.

 

Because information is around if you want to sort of sit and look for it yourself on the internet, I’m sure there’s plenty of research and plenty of sort of other data available for you to make an informed choice. But there wasn’t very much that the doctor or the hospital was able to give at the time. But I think the main thing is that we probably didn’t place it right at the top of the priority list. That was the main reason, and had we done that then I’m sure we would have found a way to go about it in the safest possible way, so yes. Pretty much.

 

So how do you feel about that decision now? Do you have regrets?

 

I do have regrets from time to time because it needn’t have been. It’s not that there was absolutely no way around it.  There there were ways around it but we didn’t explore them enough, so it needn’t have been like this.  It could have, you know, I could have conceived , but again, but then again I probably wouldn’t have been, you know, a a healthy energetic mother looking after their kid.  It might have taken a toll on my health, but who knows.  I mean we’ll be debating these questions for a long time, you know, down the line, so but yes, there is very much a a sort of a sense of regret that had we got our heads together and really thought about this maybe this wouldn’t have happened. 

After her CML* diagnosis she stopped work but later returned to an undemanding part-time job; once in remission she studied for a higher degree to enable her to become a professional.

You said at the beginning when you were diagnosed you stopped working.

 

Yes.

 

So at what stage did you pick up working again? Tell me all about that.

 

Okay. I stopped working sort of three or four months after the diagnosis because, as I said, I just wanted to concentrate my entire energies on getting better. So I think it was a period of three years before I actually stepped back into the world of work. It wasn’t instantly sort of work. Yes, it was actually. It was. So I think I started working again in the October or the November of ’98, so from April ‘97, no it wasn’t. Not three years, sorry it was just a couple of years. So April ‘97 I stopped working and then I got back into work in November of ‘98. But it was very, how do I put it, it was very non-demanding work. It was just maybe working three or four days a week as a sort of administrator, or a junior administrator, at a university department, so it was very non-taxing in that sense.

 

But I think one of the major decisions I took was to go back into full-time education and do a masters. And I’d always wanted to do it but I never felt, because the prognosis wasn’t that great and the doctors were, you know, every time I asked them about whether I should commit to a longer term plan of any sort, they would always kind of look a little bit hesitant. But I think the day the doctors actually said to me, “Listen. Your Philadelphia chromosome has actually..” I think the word they used is it’s reversed in some way and, “The disease has actually stopped still in it’s tracks”, rather than the danger of it moving the other way. That’s the time that I felt, “Okay. Now I can actually commit to a longer term plan.” That’s when I decided to do my masters.

 

So that was, I started doing my masters in 2001. Obviously, I planned for it, I applied and all of those things. 2001 to 2002 I did my masters. Before that, up to that time I was just working in my administrative job. And then after doing that that’s when I kind of moved into a professional career. So before that I was just doing other work. But I always wanted to do that, so sort of get a professional qualification and then move along in that career. So that’s what I did then, which has been really good, so I’ve been lucky in many respects.