David - Interview 26

Age at interview: 66

Brief Outline:

David was diagnosed with multiple myeloma three years ago. He underwent chemotherapy and stem cell replacement therapy.

Background:

David is a retired company director. He is married with two grown up children. Ethnic background/nationality: White British

More about me...

David was diagnosed with multiple myeloma after experiencing back pain. He underwent chemotherapy (VAD) while in hospital then had a series of chemotherapy at home. After a gap of a few weeks, David underwent stem cell replacement therapy. This course of treatment kept the myeloma in remission for just over two years. During this time his paraprotein levels were checked every three months and once the levels began to rise, David knew he would have to repeat the treatment. The myeloma caused fractures and difficulties with his vertebrae and these have been largely resolved through vertebroplasty and kyphoplasty.

 

David has been impressed by the doctors who have treated him and other than his shock at the procedure to insert the hickman line, feels he has been kept well informed. He recommends the support group, Myeloma UK who run conferences in different parts of the UK and organise meetings where people can share their experiences. Having myeloma has encouraged David and his wife to be more active rather than relaxing and letting things happen. 

Some of the information about myeloma is very technical. David prefers to listen to what the doctors tell him.

And do you feel that you were given enough information at that point?

 

Yes, yes. I think I was handled very well. I’m very impressed by the doctors who’ve treated me at all levels really. Yes, I have no complaints in that area at all.

 

And have you read much about myeloma?

 

Yes. I’ve read, I’ve probably done what lots of people do, which is look at things on websites. But they’re all a bit confusing and I mean a lot of it is written in very technical language which I don’t claim to understand. I prefer to listen to what the doctors tell me.

 

David is not able to book holidays in advance as he "is only as good as his next blood test".

And the problem is that we can’t really book anything in advance, this is the... we can’t travel, I can’t, as a result of, I can’t, we can’t get travel insurance. Not without paying a ridiculous amount of money. So we don’t book anything because I’m always only subject to, I’m only as good as my next blood test. So we’ve never been able to book any holiday at any length of notice. But we book short term, and we go away. We’ve been away, I think we’ve been to about seven or eight countries in the last three years but always at short notice. But it’s not a problem. For example, we went to South Africa in January, but I booked on December 31st and went on the 5th January, because I knew that my next appointment was late January, so I squeezed in three weeks holiday in South Africa, before.

David found the Myeloma UK helpline very helpful and felt he could talk to people about any aspect of his condition. He regularly attends support group meetings and conferences.

Well I’d certainly recommend the Myeloma UK Organisation which is brilliant which has done a tremendous amount in improving the lot of myeloma patients in this country. First of all, in negotiating with the National Institute for Clinical Excellent, is it, NICE? And as a result, largely of their negotiations, they have succeeded in persuading NICE to authorise two drugs; Velcade and Revlimid, neither of which was available a few years ago, but both of which are now said to be, well are major components in the fight against myeloma. And probably in years to come Velcade will be the treatment I’ll have next after the stem cell treatment whenever that comes around and then Revlimid is the next one which again was only authorised by NICE quite recently but it has found to be very effective in latter stages of myeloma.

 

And the Myeloma UK Organisation has done fantastic work in that. They’re also very, very supportive. They have a telephone number in Edinburgh you can phone up and talk to anybody about any aspect of it, and they’re very, very helpful. They also run support organisations around the country, and they also run conferences around the country. There’s one in London every year, and there are about a dozen around the country, at which they bring the latest technology and the latest experts to talk to people about developments in the world of myeloma.

 

David had VAD chemotherapy in hospital followed by a course of chemotherapy at home.

 I was immediately taken into [Hospital] and received treatment which is called VAD - I can’t remember exactly what those letters stand for - but it’s a chemotherapy treatment which worked pretty well. I was in hospital for about two weeks, more or less over Christmas 06, and recovered after that reasonably well.

 

Then in the follow up... there’s the VAD is the initial treatment, and then there’s a series of chemotherapy which you have at home, which is by... I can’t remember the technology of it, but you have a chemotherapy which is applied intravenously. You have a ball hanging around your neck, and it gradually it goes into your system. And I had that about four times, I think, during spring 07. 

David describes his stem cell replacement therapy to treat his multiple myeloma.

And so that was ongoing chemotherapy, after the initial chemotherapy. And then there was a gap of a few weeks, and then as planned, I had a stem cell replacement therapy in [Hospital], which is where I went in, I think, in late August 2007, and the first thing is the… oh before that, you have to have the stem cells removed which is a process of where you go in and they take out, they take your blood your through out of one arm, and back through a machine and back through the other arm. And then, they store your stem cells.

 

And then a few weeks later I went into hospital and they give a massive injection of a chemotherapy which destroys all your cells, but then they put back your stem cells, and then that repairs your system. I was in hospital for just over three weeks I think, and that is a well known process for dealing with multiple myeloma; stem cell replacement therapy. And that again worked pretty well. Now the theory of that is it gives you relief from the effects of the myeloma for a period of years. Unfortunately there’s no cure known at the moment for myeloma, although there is a series of things, some of which I’ve mentioned and some I will mention shortly, which can stall it, and keep it away for a period of months or years, but there’s no actual cure. But at that time I was told it could keep me clear, in what they call “remission” for between two to four years. But it’s actually been about two and a half years, and it has now come back. But I’ll come back to that later in the story.

 

The key measurement of myeloma is the paraprotein. Now when I was diagnosed, it was - the number should be zero in a healthy person - when I was diagnosed it was 60. When I’d finished the VAD, and the initial treatment, it was down to about ten, and after the stem cell replacement therapy, it was down to about 2, and it stayed at just under two, for about two years, and it’s started to creep up now.

 

Can you describe to me the stem cell process or replacing…. How did that feel to have that treatment done?

 

Oh how did feel physically or …?

 

How did it feel physically and emotionally?

 

Oh well emotionally, not an issue really. Physically, well the worst thing is having a Hickman line. When you’re having a continuous infusion of drugs they can either do it, by continually sticking things in your body, in and out, in and out, in and out every day. Or you can have a Hickman line applied which is stays on your body, which means they can just put drugs in and out, very easily. And it is very good. Hickman line works very well. The only difficulty is actually the, well it’s not a difficulty, the insertion of it is a bit of a procedure to have to go through. But it’s done under anaesthetic and it’s not too bad I suppose. It was a bit of a shock first time. Second time I was used to it, and when it happens again, when I have my next stem cell, I’ll be used to it.

 

Why was it a shock?

 

Well, because I didn’t really know. The first time when I was really in a very bad way, they didn’t explain to me what was going to happen. I know, I knew what a Hickman line was, but I didn’t really appreciate that I was going to have effectively an operation to install a tube into my chest. And they didn’t explain it well, and I went down to the theatre, and I was really rather shocked by what happened there. But after that it was okay. And having it was okay, although I did unfortunately - one thing I’ve left out - sometime during the whole procedure, I think towards the end of the first series of treatments, I got an infection in 

the Hickman line which mean that I actually had to go into hospital for a couple of weeks while they tried to clear the infection while leaving the Hickman line there because they still needed it for more treatment. But in the end they had to take it out. So I wasted really two weeks in hospital, because they had to take it out in the end, in the end anyway.

How did it feel having the stem cell transplant? Well the worst thing is.., the actual transplant is nothing... it’s amazing. I mean you go in, day one, you have the chemotherapy, which is just an infusion. Well no, the first thing is the hickman line. Then the infusion of the chemotherapy, which is painless and then the next day, they bring along the stem cells, in a refrigerator container and they put them back into your body through a drip, and its again quite painless and, no great drama about it.

But then, of course the effects start to take over; the effects of the chemotherapy. And you go through a pretty rough few weeks actually. It’s particularly nasty. All your blood count measurements go down to zero and you have to stay in a room virtually secluded from the world for best part of three weeks because you’re liable to pick up any infection, because you have zero resistance to infection. So you read a lot of books, and watch a lot of television, and make a lot of phone calls hopefully. But also its painful. It affects the mouth particularly. I don’t know why but it affects the mouth and swallowing. You don’t eat very much. So I’ve got that to look forward to this summer. But I’ve been through it once, and come out of it.

David and his wife try and visit places at short notice as much as possible between tests and treatment appointments.

Well it’s changed our lives insofar as, we just get on with things. I mean, I suppose when you’re in your sixties you’re, normally you sort of relax and let things happen, and maybe don’t plan things quite as well as, as one might, but we, I recognise that there are things, places to go, things to do. And we just get on and do it. We’re more active than we would have been. We actually make things happen and go to theatres and go and visit places and do things probably more than we would have done.

 

And the problem is that we can’t really book anything in advance, this is the... we can’t travel, I can’t, as a result of I can’t, we can’t get travel insurance. Not without paying a ridiculous amount of money. So we don’t book anything, because I’m always only subject to, I’m only as good as my next blood test. So we’ve never been able to book any holiday at any length of notice. But we book short term, and we go away. We’ve been away, I think we’ve been to about seven or eight countries in the last three years but always at short notice. But it’s not a problem. For example, we went to South Africa in January, but I booked on December 31st and went on the 5th January, because I knew that my next appointment was late January, so I squeezed in three weeks holiday in South Africa, before.