Elizabeth - Interview 24

Age at interview: 56

Age at diagnosis: 46

Brief Outline: Elizabeth was diagnosed with chronic myeloid leukaemia in 1999 and was one of the first people in the UK to receive Glivec. She then developed acute myeloid leukaemia, which was treated with FLAG-Ida then a stem cell transplant. She is in remission.

Background: Elizabeth is a retired NHS administrator. She is married with two adult children. Ethnic background: half French Mauritian, half White British.

More about me...

Elizabeth had always been very fit but in 1999 she caught a throat infection, was having heavy periods, found skiing unusually tiring and developed an enormous bruise from a small bump, and nearly fainted one day. A doctor colleague urged her to see her GP. After a blood test the GP referred her to a haematologist. A bone marrow biopsy confirmed the diagnosis of chronic myeloid leukaemia. Elizabeth was told her life expectancy was about three years and the treatment options included interferon and an allogenic bone marrow transplant. She demanded a referral to the UK expert on CML.

 

Elizabeth started on hydroxyurea chemotherapy tablets while her siblings were tested as possible stem cell donors. Her brother was initially found to be a match but this was due to a laboratory error. Her mother demanded to be tested and, unusually, was a match.

 

Two days before the transplant, news broke in America about a new drug for CML. Elizabeth postponed her transplant and waited until the drug entered trials in the UK. To be eligible for the trial Elizabeth had to have failed on, or been intolerant to interferon, so after a while she was persuaded to take this. Interferon made her feel zombie-like and after 4 months she was transferred to the new drug, Glivec, as part of the trial.

 

Initially the Glivec made her ill and she had to repeatedly stop and start the treatment. After taking a growth factor to stimulate her white cells the leukaemia started going into remission. Elizabeth then heard of a trial in America for a vaccine which could be taken alongside Glivec. Her doctors agreed that she could go to America but unfortunately the vaccine had no lasting effect on her leukaemia.

 

Elizabeth began to feel unwell again and developed a cold sore that didn’t respond to anti-viral treatment. The doctors couldn’t agree on what to do. A central line was fitted ready for a chemotherapy called FLAG-Ida and Elizabeth was told she now had acute myeloid leukaemia. The treatment made her very ill and she needed repeated transfusions of blood products. She suffered side effects of conjunctivitis, diarrhoea, a sore throat, and the skin fell off her hands and feet. Her line became infected and was replaced. Eventually she was given back the stem cells she had harvested at the original diagnosis but had an allergic reaction to the preservative. After 10 days her cell counts started to pick up. After 8 weeks in hospital she was allowed home but was very weak. She was readmitted after a few days with an infection. She felt that her condition was serious so started to put her affairs in order before being admitted to hospital.

 

The doctors then planned to give Elizabeth a reduced intensity transplant using her mother’s donated cells. Her prognosis was poor so she finished putting her life in order. However, the transplant went relatively well and she also had a donor lymphocyte infusion. About a month later she developed graft versus host disease in the form of severe diarrhoea and vomiting. She was treated with steroids and spent another month in hospital. After being discharged she received the good news that there was no sign of leukaemia in her body and that she was 100% donor cells.

 

Elizabeth feels that emotional support for patients is lacking and had set up a CML patient support website when she was okay and currently runs a support group at her hospital.

After being told at her local hospital that she had CML* and a short life expectancy Elizabeth...

But the minute we walked in the local hospital I had a panic attack. Totally, I couldn’t breathe and I burst into tears and I was like a complete wreck really, without even knowing what I had. But I knew deep inside that it wasn’t good. So we made our way to haematology and this consultant. I hope she’s had some patient liaison training since then really, back then ten years ago. And she said to me, “Oh well, I haven’t got good news for you. You have leukaemia”. And, “But there’s a few things we can do”, and all that. And I sort of said, “Well, how long have I got?’ “Well, three years at most. It depends how you respond to what treatments we have to offer you.” And she said, “Well, look, let’s face it, you could get run over by a bus really but none of us know how long we have.”

 

And I was sort of looking at her and thinking, “Do you realise what you’re telling me? You’re just telling me I’ve got leukaemia really and sort of so matter of fact really.” My husband would probably have passed out on the floor by that time. And I was saying, “Okay, okay.” And then she told me, “Well.” And I said, “Well, what type of leukaemia have I got? What have I got?” And she said, “Oh, you have chronic myeloid leukaemia.” And from then really I left that hospital and I sort of thought, “There is no way I’m going to let that woman treat me.”

 

And I went back home. I rang all my doctor friends, I sort of said what the diagnosis was and that’s when I started to research my disease one hundred and fifty per cent. I’m not one of these people that could just put myself into the hand of a doctor really and just let him do what he wants with me. I’m, you know, it’s just not me. I had to know every single detail. I bought a book on haematology for medical students and researched blood and found out what was happening to my blood and read about the condition and really what was chronic myeloid leukaemia. I had a follow-up appointment at the local hospital and I saw a different person, another consultant there who was actually the head of haematology at that hospital. And they started talking to me about all various trials they wanted to put me on with interferon and there was also the possibility of a bone marrow transplant at the time. And I have two brothers and a sister and so they had to be tested to see whether they were a match.

 

So we came out of that meeting with the consultant a bit like, you know, everything was being thrown at us about, “Oh, we’ll try interferon and then we’ll see about a transplant and donors”, and etcetera really. So, you know, more things to research. And then I sort of thought, “Hang on a minute. This is the local hospital here and I’ve got leukaemia.” I went back to see the consultant. We’d half walked out of the hospital and I walked back in again and I said, “I’ve got one question for you.” I said, “Who is the best person in this country for chronic myeloid leukaemia?” And he said, “Ah, but this is this professor who works in London.” And I said, “Okay. You refer me to this professor because I am not coming back here.” And he said, “But we can deal with this, we can do this, we can do that.” So I said, “No no no, I am not coming back here. You refer me and I will take it from there.” I dread to think what kind of referral letter he got after that. But I was referred to a centre of excellence for treating leukaemia in London. And to me that was, you know, I was in the right place. I knew I’d done the right thing for me and I had to wait a bit for the a

Elizabeth's CML* had been under control on imatinib (Glivec) for some time when she began to feel...

In 2004 - it always seems to happen at that time of year, I can’t understand - again we’re in Mauritius for my mother’s birthday, which is the 75^th by then. And I’m not feeling well and I sort of think, “What’s going on?” Still taking the tablets. I was okay. I had my check-up before I went. Go back to London. Go back to see my consultant and I sort of said, “Oh, don’t feel right really.” And he says, “Well, I’m not surprised. Your haemoglobin is down in the dumps and there’s something going on. I don’t like this. Bone marrow biopsy straight away.” Panic stations. And I’m thinking my leukaemia’s advanced and all the rest of it. Well oh, what. Another nightmare. It was a bit like being diagnosed once again all over really, because while on Glivec you’ve got this kind of safety thing, PCR is low, leukaemia’s quiet, you know, nothing sort of going on. Then suddenly, whoosh, the whole thing sort of blows up in your face again.

 

Sort of then wait for the result of the bone marrow biopsy. Thankfully, we didn’t have to wait too long because he realised how panicky I was getting then, and sort of said, “Well, it’s strange but your PCR is still low but you have abnormalities in your normal cells.” And it was quite a high percentage of blasts, which were not indicative of anything at that time. It was just bone marrow sort of, idiosyncrasy really in the marrow. Nobody could pinpoint it. Nobody could say, “Oh, this is that disease, that disease or that disease.” It was really everybody, I remember the professor was going round with my slides showing to other people sort of saying, “What do you think this woman has?”

 

And I was definitely not feeling right and I kept thinking, “I need a holiday.” I didn’t think it was the leukaemia. And I had this massive cold sore on the side of my mouth that started getting worse and worse and worse. I could actually smell my flesh rotting. It was awful and I couldn’t even eat. I couldn’t do anything.

 

And the consultant at the hospital first of all monitored it and sort of thought, “Hmm, okay, well let’s give you anti-virals and blah blah blah to go with that.” But then by sort of middle of January it was really looking very nasty indeed and then my blood count started really showing that there was something definitely not right going on. And I went to my appointments, lots of make-up just to appear very healthy and not sort of for him to think, “Oh well, she’s very ill.” But he saw through all that and sort of said, “Okay. I want to do a bone marrow biopsy.” So I said, “Okay, oh well, maybe tomorrow, I’ll see if my husband can get some time off work.” He said, “No, now.” And I sort of thought, “Oh well.” Had to bite the bullet and go and have my bone marrow biopsy, but for him to say this to me I knew that really something bad had happened there.

 

And then the panic starts setting in again. Had the bone marrow. Even the guy who did the bone marrow biopsy, I could see really what he got out wasn’t what he expected to get out even, I think they can just tell by consistency or whatever. And then my doctor told me, “You won’t have to wait, I’ll let you know, as soon as I know I’ll let you know.” And that was the afternoon. And the next day he rang me and he said, “Right, pack your bag. I want you here by six o’clock. You’re being admitted.” And I asked him why and what was happening and whatever really, and he said, “Well, your blasts have increased considerably&r

Elizabeth's husband lost his job because of all the time he was spending with her in hospital. As...

Overlooked I think is the financial implication it has on people really. Because it puts you in a position where basically not only can you lose your own income but also if you have a husband who sort of says, right, he has to be in hospital with you and look after you, you have this sort of implication. And we had that problem really because where my husband was working really they weren’t terribly sympathetic and told him, “Well, if you can’t come into work you haven’t got a job.” And he decided that being with me was more important than going to work really. And he couldn’t concentrate on working, and thank God all this has sorted itself out and he’s very happy now and everything, but it was a big problem at the time.

Elizabeth's GP phoned on a Saturday telling her to go to hospital on the Monday. She quizzed the...

So that’s when it all took off. Eventually I went to see my GP, which was a Thursday, and she said, “Okay. I’ll try and we’ll do a blood test just to find out if everything’s okay but I’ll give you some of those pills to sort of stop the heavy bleeding and see if we can build you back up”, kind of thing. I was really, you know, “Okay, back to work”, kind of thing. And on the Saturday my son, it was his fifteenth birthday, and I had a load of fifteen-year-olds running around the house, and the phone went. My husband was at work, and it was my GP, who I knew pretty well because I had to deal with her through work as well, and she said to me, she said, “Elizabeth, there’s something very wrong going on here. I’ve made an appointment for you at haematology on Monday. I’d like you to go.” And she knew I was going to say, “Well, I can’t go. I’ve got a meeting”, you know. And I sort of tried to get more info out of her and she was very reticent. She didn’t want to tell me anything on the phone. She knew I was already quite aware medically of things.

 

So I said, “Okay, well what’s my blood count?” And there was a big silence on the other end, and yet eventually she told me my white count was 98, and I thought, “Okay.” And then she sort of said, “Yes, but your platelets are over 2000.” And then I started, alarm bells started going in every direction really, and she said, “And the worst part your haemoglobin is 7, and really I don’t know how come you’re having a fifteen-year-old kid’s party with a haemoglobin of 7.” So anyway I said to her, “Worst case scenario?” She said, “Please don’t make me do all this on the phone. Go to the hospital and you can ask all the questions but really we need to sort this out and you need to go.”

 

And in my head straight away I thought, “Right okay, severe anaemia, severe anaemia”, then, “Hmmm”. I got the medical encyclopaedia out, because in those days the internet wasn’t quite what it is today, and then the word leukaemia started appearing. And I thought, “Leukaemia, but it’s only sort of children who have leukaemia, it’s not me”, and, “And leukaemia people are very thin, very white and very bald, you know, it’s not me really. And how could I possibly have leukaemia and do all the things that I do? It’s, you know, it’s…” So I discounted it. I sort of thought, “It’s impossible. It can’t be me.” Anyway, then I rang my husband, I said, “ Well, you’d better come home because there’s, you know, something not right.” So we spent a weekend really trying to think, “What is it?” and trying to sort of hide it from the children of course and, you know, my daughter was, was she doing GCSEs or A-level? She must have been doing her GCSEs, and so… No, she was doing A-levels. It was hellish weekend really.

Elizabeth decided not to spoil her mother's 70th birthday party in Mauritius by telling her the...

That’s going back to the fifth of February when I was told etcetera and when I sort of said, “Well, I want to go [to Mauritius]. My mother’s seventy. I’m definitely not going to tell her I have leukaemia, and I want to go.”

 

And so really I wanted to get that out of the way before I dealt with the leukaemia. I wanted to be able to go back, have my mother celebrate her birthday. She had her four children there. It was a big occasion and I couldn’t blow the bomb in the family at that time. I just didn’t want to do it. And my husband was a wreck, so really in between trying to cope with him and trying to not say a word really. In fact I had to tell my brothers and sisters really so they could take care of him and, you know, keep him away from my mum really. Wasn’t easy but, you know, we went there. We had the holiday with the kids and had the seventieth birthday party.

 

And I had my brothers and sister tested over there. My sister-in-law works in import/export of medical equipment with Germany for Mauritius so she had some testing kits ordered and arrived and we carried out the test. And one of my brothers was actually found to be a possible match, which he would obviously have to be retested in London. So it was a bit stressful for my brothers and sisters, and everybody really, knowing what was going on and all that. But I mean, my mother, thank goodness, in her ignorance then, you know, she enjoyed herself, had her kids around her and her grandchildren, and she was, you know, it was all very, very good.

 

Came back to London and really this is at the point where I said I wanted to be referred to the best centre and taking it from there. I was still in two minds, “Do I tell my mum or not?” I really didn’t want to worry her until I had to worry her. And my daughter was doing her A-levels and I sort of, I didn’t want to sort of upset things really, and my son is very, already very sensitive and everything and I didn’t want to pile this on them. And it was very hard. But my daughter’s very, you know, she susses things out and she kept saying, you know, ‘You sure you’re all right?”, and things like that. And I told her I was anaemic and that explained the, you know.

 

So we carried on. We carried on with testing to find out and then something really strange happened then. My brother who lives in the States kept coming over for various tests, blood tests, interview with the doctors, ‘Yes, we’re going to do this transplant. Full go ahead.” Then I had to drop the bomb on my mother when they actually decided for transplant and I think it was hard for her. Of course it was hard for her. She lives six thousand miles away and really, you know, and she’s told, well, I’m going to have this procedure and basically I might die, and… So my sister had to deal with the fall-out on the other end of the world and then my mother was making plans to come over really, to be over here while I had the transplant.

Elizabeth travelled to the USA to take part in a trial of a vaccine for CML*. She had fun in...

During that time there was a trial in the US for a vaccine for CML, and they said that it would probably work on those who had a lowish PCR* and were sort of stuck and not getting anywhere with Glivec. You did not have to abandon your drug, and it was in conjunction with taking Glivec. All expenses paid, put up in equivalent to a Travel Lodge or whatever over there in Connecticut. I knew the first batch, I made friends with the first batch of people who actually were there on the trial and they sort of said, “Yeah, nothing in it really, little injection every night in bed, we’re having a ball going out having fun.” And I thought, “huh, I can do with some of that.” So I thought, “Okay. I’m going.” The team at the hospital in London was saying, “Okay. Go. It can’t do you any harm. We’ll see.”

 

And my first experience of the US was pretty traumatic because they had to collect my cells in order to manufacture the vaccine. And this was pretty much of a disaster because the person inserting the cannula to actually collect the cells made a big botch up of it. And I put up with everything because to me this was a vaccine and this could work and it was worth doing, and all that really. I came back to London with the whole side of my neck out here because they had to actually insert it in my big sort of vein in my neck because they couldn’t get the right veins in my arms to actually do it. But then they did it in whatever way that obviously I had a massive, massive bleed. I came back here, hospitalised for them to CT scan me and actually see what damage had been done in the US. I could have sued them for a million by now with this but I didn’t. And to me it was an end in sight to all this so, you know, I was willing to walk on hot coals still. Anyway, nothing much happened. It all resolved and I was okay.

 

Then I went back to the US for three months to actually get a vaccine protocol and there was another few people there with me, you know, leukaemia patients, and we got a great community really, which was really good. I had a great time in Connecticut really, and seeing all the area. I went to New York and did lots of fun things but the vaccine amounted to nothing. I think my PCR* dropped quite considerably at the end of the course but then it came back to the level where it was at. So anyway, great experience. Tried it, didn’t work. Okay, carry on with Glivec really.

 

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

Elizabeth had 2 allergic reactions: one to imatinib (Glivec) when she was first given it, and one...

I started [imatinib (Glivec)] on the 6th of December. About the 17th of December I started getting a very high temperature and a rash. I was covered head to toe in a red angry rash and I was hospitalised. And this drug was so new, nobody knew really what it was, and I sort of guessed that it was the drug, obviously, doing this to me. I knew it wasn’t the disease. But I had a such a high temperature it really worried me what is going on here, and then I had to stop the drug of course. And I thought, “Right, only one solution. American professor.” E-mailed American professor and said, “Look, I’m in hospital, got a high temperature, covered in rash, nobody knows what to do with me. What happens?” And he actually sent a protocol to deal with this to the team at the hospital and they started implementing it. Amazing how you have to treat yourself eh? And then I started getting better. I was discharged and I had a short course of steroids to deal with the rash. Glivec was introduced gradually and I was back on the drug. Okay. Sorted again. Problem over.

 

So then the new cells, my cells arrive, and basically this now in turning from having a chemo protocol into an autologous transplant and I get my own cells back. And I knew I would be okay then. I knew with my own cells my marrow would start. I just knew it would happen, so there was, the panic was getting better now and I was okay. So then they start injecting the cells in my line. The cells had had to have preservatives in them because of being kept since 1999. Then I start having palpitations, blood pressure drops, back on bed, boomph, you know, and stop, and what’s going on? And I’m saying, “I’m having a heart attack.” And so anyway, we restart the whole procedure and they have to give me Piriton so that I would not have such a reaction to the preservative that was actually in the cells.

 

Then we start again and I still get a bit of the symptoms but certainly not as much as that first time. So that was a very unpleasant experience. I didn’t like it really, and all the way through the cells were going through, I didn’t feel right. I was still feeling I was having palpitations and I kept thinking, “I can’t breathe.” And it wasn’t comfortable.