Glyn - Interview 40

Age at interview: 66

Age at diagnosis: 63

Brief Outline:

Glyn was diagnosed with chronic lymphocytic leukaemia after being refused as a blood donor. A chromosome abnormality makes his leukaemia resistant to chemotherapy. After several treatments were unsuccessful he was given lenalidomide, which is working.

Background:

Glyn is a retired management accountant. He is married with two adult children. Ethnic background: White English.

More about me...

Glyn went to give blood and was refused because of a low cell count. His GP rang the next day to ask him to go to the surgery for a blood test. He returned a few days later for the result and was told he had chronic lymphocytic leukaemia and that it was a type of leukaemia that people lived with for many years. He had swollen lymph glands in his neck and an enlarged spleen. He was referred to his local hospital two days later where he had another blood test and was prescribed steroids and chemotherapy tablets and told he would need a CT scan. Meanwhile he and his wife went on holiday where he had food poisoning and noticed that he had lost a lot of weight. He continued on the tablets and had regular blood transfusions and attended the clinic once a month.

 

Initially his blood counts improved but after a few months that was no longer the case. A sample of his blood was sent to a specialist hospital for further testing after which Glyn was referred to see a consultant there. He was told he had a form of CLL where a chromosomal abnormality in the p53 gene made his leukaemia cells resistant to chemotherapy resulting in a life expectancy of only 2 – 3 years. He was put on combination of steroids and an immunotherapy drug called Campath (alemtuzumab). After a few days of this treatment he needed to stay in overnight for blood and platelet transfusions. Once at home he developed a fever and as it was a Friday evening went to Accident & Emergency where he was further at risk because of his compromised immune system. The next day he was moved to an isolation ward where he stayed until he recovered.

 

Glyn then restarted his treatment, which he took quite well. At the end of the planned 16 weeks of treatment tests showed that there were still leukaemic cells in his bone marrow so the doctors decided to give him another 8 weeks of the same treatment, but it still didn’t get rid of the leukaemia. His doctors then decided to apply to the Primary Care Trust for permission to give Glyn a new drug called lenalidomide, also known as Revlimid. The application was successful and Glyn has been taking it daily for a year. Tests show that his immune system is returning to normal, he no longer has swollen lymph glands or an enlarged spleen. Glyn has therefore been feeling a lot better although he has recently caught a cold.

When Glyn's CLL* didn't respond to chemotherapy his doctors did cytogenetic tests and found his CLL cells had a rare mutation in the p53 gene, which meant he had an unusually short life expectancy.

And then they were thinking then in October, in October they said, “We’ll have to give you stronger chemotherapy tablets.” And I went in in November to the main hospital for some more blood and the two specialists from the local hospital said, “We’re going over to the regional specialist hospital to the haematology.” So he said, “We’re going there now to this conference.” And I think they must have taken a sample of my blood actually so they could do some cytogenetic tests on it. And it came back and they said they wanted me to go to another hospital now and so we went there at the beginning of December. And this is when we saw the first older specialist, a professor, and he said, “Oh, yes, you’ve got CLL with this p53 gene.” So I said, “What does that mean?” He said, “Do you want me to give it to you?” I said, “Oh, yes tell me properly.” So he said, “You’ve got two to three years.” So we were quite upset really at that.

Glyn didn't like having to hold his breath for long periods during a CT scan but didn't mind drinking the special dye - he likes the taste of aniseed.

So you’ve had some CT scans along the way. What’s it like having a CT scan?

 

No problem. The worst thing is holding your breath really for something like thirty seconds. You know, you’re on the conveyor, or on the thing that goes into the cylinder, and you’re watching the thing up above and that says how long you’ve got before it stops. And you think, “Thirty seconds”, and you’re like, “One, two..” And they say don’t breathe in that time, you know, it’s absolutely horrendous. But, you know, others like two and three seconds they’re not, so there’s no problem with it. I quite like aniseed so I’ve no problem.

 

Because you have to drink this aniseedy stuff.

 

Yeah, you have to drink the aniseed, yeah. No I like aniseed so that’s no problem to me.

Glyn has taken one capsule of lenalidomide a day for a year, is now in remission and expects to take it for life. Obtaining the drug is complicated because it isn't routinely available.

And so when it came through we were over the moon that they were going to start me on this, and especially as we found out when we went down to the pharmacy to get this drug and they said, “Oh, no we don’t keep this drug”, you know, “We’ve got to get it from the manufacturer.” And I said, “What? Won’t they give you stock?” “Oh, no.” They said, “At £4000 a box there’s no way they’ll let you have it here.” And I take one every day whereas the list of treatments on the thing is one for 21 days and a week off. But I have them all the time because they’re more effective doing that.

 

So they’ve been absolutely great and in fact they gave me a bone marrow test half way through the year and that showed really nothing in it didn’t it? It was really good.

 

But my red bloods are just going stronger and stronger and stronger and my white cells are going up now, my platelets are going up. What’s the other one?

 

Pat' Neutrophils.

 

Neutrophils.

 

Glyn' Neutrophils are increasing.

 

And so that’s going really well on that and then when we went in November last time we saw him, when he said, “You even appear to be getting some immune system back now.” So that is absolutely marvellous we feel. So we’re really over the moon with that and so this is what I want to let people know really, that it really seems to be working so perfectly for me.

 

So the Revlimid is tablets is it?

 

Glyn' Yes.

 

You just take one a day?

 

Glyn' Yes, I just take one a day. Only 10 milligrams. I started from 5 for a short while, but I’m up to 10. They do go up to 25 apparently but I’m stuck, given me 20, on tens.

 

And do they give you any side-effects?

 

Glyn' No, none at all. I haven’t had anything.

 

Pat' They can do. We were given a list of things to look for and to do. One of them was called tumour flare where all your lymph nodes and that can swell up quite dramatically.

 

Glyn' And they really were quite concerned about those weren’t they?

 

Pat' But they gave us a leaflet and there’s also the leaflet in the box that tells you what to look for, and they gave us contact phone numbers to ring if we were concerned about anything in between appointments. We knew the ward phone number. We knew the day ward phone number. So we had all the information we needed and what to watch for, but touch wood.

 

Glyn' No, it wasn’t, no.

 

Pat' You didn’t get anything. One or two things yes, you had a slightly upset stomach and things like that, but they all settled down…

 

Glyn' …Quite quickly really, yes.

 

So you’ve been taking that for about a year?

 

Glyn' Yes, a year now.

 

Pat' Just a year.

 

And what

Having once spent a month in hospital fighting for his life after an infection, Glyn and his wife Pat have restricted their social life to lower the risk of future infection.

Okay. So tell me a bit about how this illness has interfered with your other activities you might have done since you've been retired.

 

Glyn' Well, the big thing really is the social life because, as you can imagine, being the golf club treasurer I had a big social life at the golf club, because our main friends are golfers, so there’s another four, there’s five of us, aren’t there, in the, so there’s ten people. And we’d always go to, they had a dinner and dance, the candlelit dinners and things. Anything that was on really we’d go to. And then of course I stopped that dead. I mean you’ve been to one or two, and probably more lately, but I stopped that totally. I just wouldn’t go anywhere where there’s a lot of people because it frightened me to death that I would catch something. And with having that month in hospital in January 2007, I would never want to go through that again. That was just horrendous, so I thought, "I’m never going to get anything again like this, so I will do everything they say”, and so, as I say, I’ve not done that.

 

We’ve got a caravan in Wales and we go to that. We used to go for meals and I stopped going for meals there and said we’d only eat in the caravan. And we used to go for a drink at the bar there and I wouldn’t do that. And as a matter of fact I think with all this treatment I just went off alcohol anyway, so it didn’t worry me that one.

 

And we stopped playing golf as well. And I mean when I’ve played a few times since, for instance, my son comes up and we go out and have probably eight or nine holes. But I’ve got nothing like the strength I used to have. I keep wondering whether I ought to go, in the church raffle last year I won a month’s Fitness First membership, and I don’t know whether to go to boost my arm strength, but I never bothered really. And so I don’t go in competitions or anything at the moment. That might change now mightn’t it? Yes, especially as I’m getting some immune system back I feel I could try that again. And we’ve started to go to a few more. We go to dinners with the ten of us. But I mean unfortunately we were supposed to be going last Saturday, and there was no way on earth could I have gone then.

 

Pat' I think the other main area that it’s really affected is holidays, because we travelled abroad. We loved going abroad on cruises. We had a three week holiday in America booked which we had to cancel. And I think we’re very nervous about looking at booking ahead in case Glyn’s immune system drops again. And I don’t really want to go on a plane because that’s one of the big places where you pick up any infection.

 

Glyn' Yes, fear isn’t it, the germs floating round the plane. Horrendous really.

 

Pat' And the same with the cruise because you’re in a confined area, so if somebody has got the norovirus everybody get the norovirus, so we’ve restricted ourselves to UK holidays.

 

Glyn' We’re in a thing called Holiday Property Bond, and so we just go to UK places like St Bride’s Castle we went to, and Henlys Hall in Anglesey. Barnham Broom we went down to didn’t we in…

 

Pat' Down in Norfolk.

 

Glyn' …for our wedding anniversary last year but yes, we’re just doing that. We’ve booked the lake district this year.

 

Pat' I think it does affect your social life a lot. It would affect work life to

Glyn stayed in hospital overnight to be given 4 units of blood and one of platelets; he felt like a new man after his fortnightly transfusions.

Sunday, I went in Boxing day and started with a very small Campath [alemtuzumab] and steroids and then again on the Wednesday and then on the Thursday, Friday. As I say, when I went in on the Tuesday then, the 2nd of January, my bloods were really really down and so they gave me four units of blood and one unit of platelets which, of course, takes a day and a half to give you. So they kept me in until the Friday and then let me out and they said, “We’ll leave you next week and we’ll see you the week after.” And they were giving me blood every couple of weeks to sort of boost me, when it wasn’t boosting my red bloods I had to go up to hospital and have two or three pints. And they’d do that and I’d feel like a new man then when you’ve got three pints of blood just running round your veins. It’s an incredible feeling that. I’ll never ever forget that really the first time I had it. Because I went in like a wet week and I came out really quite high and it was absolutely incredible.