Marie - Interview 44

Age at interview: 69

Age at diagnosis: 53

Brief Outline: Marie was diagnosed with chronic lymphocytic leukaemia after pains in her bones and groin. After two years of watch and wait she had several courses of oral chemotherapy with remissions in between. She is currently well but expects further treatment. Marie was also interviewed for the clinical trials section of this site.

Background: Marie is a housewife. She is married with two adult children. Ethnic Background: White British.

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On her return from living in Africa in 1989 Marie developed pains which her GP attributed to the change in climate and possible rheumatism. A year later a pain in her groin prompted the GP to do a blood test. Marie was referred to a consultant who told her it was chronic lymphocytic leukaemia. She was shocked and assumed it meant she would die but was told that her disease had been caught early so would be monitored with regular blood tests and she should get on with her life.

 

She spent two years ‘watching and waiting’ during which time her symptoms became more troublesome and she began to feel tired. She was then given two courses of chemotherapy tablets called chlorambucil, which got rid of her symptoms without producing any side effects. After another two years she had another six months of chlorambucil. She was also given steroids which gave her lots of energy but caused weight gain. She was diagnosed with diabetes but cured that through dieting. More chlorambucil followed.

 

Three years ago her body failed to respond to the chlorambucil in the usually way so she was given FluCy (a combination of fludarabine and cyclophosphamide), also in tablet form. The first course made her feel better but a further two courses had no effect so the planned fourth course was held back for another time. She was well again for fourteen months but then began to feel tired, had pains under her arms and a lump formed in her neck and she had no immunity to infections.

 

Marie’s consultant invited her to take part in a drug company-run clinical trial of a new monoclonal antibody called HuMax-CD20. She tentatively agreed to take part but after reading all the details decided against it. She was therefore given her fourth course of FluCy along with blood transfusions and antibodies to boost her immune system and now feels well again. When her symptoms return next time she is expecting to be given a different chemotherapy administered intravenously. In the mean time she continues to get on with her life.

 

Marie was also interviewed for the clinical trials section of this site (see Interview CLT25).

 

Marie developed diabetes after having high doses of steroids with chemotherapy for chronic lymphocytic leukaemia; after putting herself on a strict diet and losing weight she no longer had seizures.

I then had a problem with diabetes, which I didn’t know I had. I started having seizures in the house. It was confirmed that I was a diabetic and it could have been, they thought, due to very high doses of steroids. I was then given treatment for diabetes. The consultant at the hospital for diabetes informed me that I’d have to be very careful, not only did I have diabetes but with leukaemia as well. I made up my mind that that was not going to get me down and I was going to conquer the diabetes because of the difficulties I was having with leukaemia. I kept a strict diet and it’s not been a bother. I then couldn’t drive for a year. That depressed me, and I was having to have chlorambucil again. It still worked and I was doing fine on it.

 

So do you think the steroids and the effect they had on you caused the diabetes?

 

Well, they said it could be a contributing factor but they were not sure. But of course, because of the steroids I gained weight anyway, which is another factor for diabetes, so they’re not very sure.

 

But I think you told me off camera you’d managed to conquer your diabetes.

 

Yes.

 

So you’re not taking any medication any more for that.

 

No.

 

Brilliant, and you lost all the weight.

 

Yes.

 

And you did that through diet and exercise?

 

Yes.

 

That’s really good. Well done.

 

Yes, basically just keeping to a very, very strict diet. Eating small amounts, lots of vegetables and fruit. I just changed my eating habits. In fact I found now that I went out to a restaurant the other day to celebrate my white count coming down and they did a jacket potato but they brought me chips and I found I couldn’t eat them. It’s so long that I’ve eaten that kind of rubbish that I just couldn’t eat them. So my lifestyle changed completely. 

Marie had a 6 month course of chlorambucil for her CLL, but it didn't work so she moved straight onto fludarabine and cyclophosphamide, which worked immediately.

Two years, three years ago I had chlorambucil and it didn’t work. After the six month’s course nothing happened, so I was told by the consultant that it was no longer any use to me and that I would have to start on another drug. The first thing I asked him again was, “Am I going to lose my hair?” And he said, “It will thin and that will probably be the only problem you have”. “Do I have to come into hospital?” “No, you can have it at home but you will have check-ups” I started the drug, FluCy, I was allowed four treatments. They gave me three. The first treatment worked. I had a white cell count of 350, and that was immediately brought down to 15 on the first dose of FluCy. That’s a three day course. No steroids except my ordinary five milligrams I have to take daily anyway. It didn’t affect my sugar levels. I did have a temperature. They told me I would have. I was taken into hospital because they were afraid that there could have been an infection, but by next morning I was fine and I came out. I continued the second dose of FluCy. Nothing happened. It didn’t bring it down any further. It didn’t take it up. The third dose didn’t work at all. My consultant then decided that since I was only allowed four doses he wanted to keep one dose back in case I really needed it at some other time.  

Marie says that after years of having CLL she recognises the symptoms and knows their cause; she knows her limitations, so paces herself and often rests in the afternoons.

So it’s only after years of having it I know the symptoms. Bruising, it has to be platelets; pounding in the head, it has to be the red cell count going down; and the fatigue, it means the white cells are going up as well. So I begin to know what’s happening to me. I know my body now.

 

So the symptoms have gradually developed over the years from what happened at the beginning.

 

Yes, the symptoms have changed in fourteen months. The platelets have never given me problems before. I’ve never had high platelets but I’ve always a hundred and five a hundred and fifteen. I noticed that it went down to seventy five. My local doctor looked at me and said, “I think we’ll do a blood test, you’re bruising”, and I said, “It’s platelets, isn’t it?” And he said he thinks so. He sent it off and it was confirmed it was platelets were low. This time platelets were even lower. They’re thirty eight, I’m bruising, still bruising badly, but they don’t usually do anything until it’s about ten. But I was told at the haematology clinic that now the FluCy has finished attacking the body the platelets will probably increase anyway and they will just watch it on the next blood test, which is in two weeks time. But if I feel ill or the bruising is all over my body I shall immediately go back, but I’ve been fine. So I shall have another blood test in two weeks and then I shall see the consultant.

 

Okay. So you mentioned tiredness as well. That’s one of the symptoms you get these days sometimes.

 

Yeah.

 

Can you describe the tiredness to me?

 

Because I’m very active, I will be dashing around and all of a sudden my body refuses to work. I can’t remember what I’m doing, my memory sort of gets, I can’t remember anything, and my muscles and all over my body just feels as though it’s like jelly, and I have to go and sit down. And if I sit down I can normally sleep for about two hours, which is unusual for me. When I wake up I’m fine but then I have to know my limitations, so when I’m getting to that stage I will spend a lot of time resting in the afternoon. I pace myself, do my jobs in the morning when I’m fit, in the afternoon I will sit and have a rest, then I’m fine. But it’s general your body won’t work and you get a fuzzy brain as well.