Richard - Interview 06

Age at interview: 63

Age at diagnosis: 60

Brief Outline:

In 2007, when Richard was diagnosed with pancreatic cancer, doctors hoped to do a Whipple's operation, but found the cancer had spread. Richard took part in the TeloVac trial, and had chemotherapy and then vaccine for 18 months. He now has chemotherapy.

Background:

Richard is single. He is a teacher (now retired). Ethnic background/Nationality: White British.

More about me...

In November 2006 Richard had tummy ache and strange poo. His poo was soft and floated in the toilet bowl. He had to go to the toilet very soon after a meal. He also looked slightly jaundiced.

 

Richard went to see his GP, who felt a lump in his abdomen (tummy). The GP sent Richard to the hospital for an ultrasound. He then had a CT scan and blood tests.

 

In April 2007 the doctors put a stent into Richard’s pancreatic duct, which helped with the stomach pain and reduced the jaundice. The doctor had to make an incision (cut) in Richard's abdomen to put in the stent. He tried to go in via the mouth with an endoscope but couldn't manage it. 

 

In June 2007 Richard went to the operating theatre again. The surgeon had hoped to do a Whipple’s operation, but the tumour had spread and couldn't be removed. The surgeon did a biliary bypass, so that bile could reach the intestines more easily. Richard was very disappointed to hear that the Whipple’s operation had not been possible.

 

Richard went home after about 10 days. At times he had very bad stomach pains and he still has pain from time to time. He takes oral morphine and paracetamol to control the pain.

 

After the operation Richard wanted a second opinion. He saw another consultant, who agreed with the first surgeon. Richard went to New York to follow the New York marathon, and  saw another surgeon while he was there. This surgeon took an MRI scan and thought he could operate successfully. Richard went home and thought about it, but decided not to have any more surgery.

 

Richard was then referred to a clinical oncologist (cancer doctor). In Auguist 2007 he had chemotherapy for two weeks as part of a clinical trial. He then had injections of a vaccine for 18 months. During that time he felt well and ran the New York Marathon. After 18 months a CT scan showed that the tumour was growing so the vaccine was stopped and chemotherapy started again.

 

Richard has been having the chemotherapy (gemcitabine and capecitabine), for the past year. Richard did not experience side effects while having the vaccine, but the chemotherapy made him feel tired and nauseous at times.

 

Richard now has a CT scan every three months. The tumour appears to be stable at the moment. He takes Creons (enzymes) to help digest fats. He has had more stomach pains recently and is slowly losing weight but is very positive about his life.

 

We spoke to Richard in 2010 

Richard looked at the internet and was shocked by what he saw, so turned off the computer, but a friend's son found useful information on a website about a clinical trial.

Did you look for information on the Internet at that stage?

 

I didn’t, no, because, well, I suppose I’m a bit of a, a bit of a coward there. When I was first diagnosed or the first possibility of pancreatic cancer was mentioned, I went on to the Internet. And, well, and I remember, I was on the Internet on a computer in the library, and the f-, first thing that came up was a banner across the monitor screen saying, “Survival rate 9 to 12 months.” And I thought, “Oh, right.” And I didn’t want to read any more. I remember I just sort of turned the computer off in a panic and got out and walked out of the library rather shocked. And really I’ve been like that ever since, I’m afraid. I’m usually a person who likes to have facts, and I’m getting better at it. I’m more interested in what can be done, rather than what might happen or what has happened. So, yes, the treatment I’m interested in, but the biology of it all, I’m not so, not so keen on.

 

Luckily, a friend’s son had been on the Internet, looking to see what pancreatic cancer was all about. And he’d found that Liverpool University were doing a trial, a clinical trial, which he thought was, was useful. And he told me about this and he gave me the computer printout. And it did look interesting to me. So I, as I say, luckily, I was able to go along to this first meeting armed with these two A4 sheets of computer printout about this clinical trial. And I’m so pleased I did, because the oncologist was depressing. And it would have upset me an awful lot had I not had the, if you like, this back-up of this information off the Internet. And so I asked him then if I could go on this trial, if I could be put forward to it. And he said he would consider it, which he did. And I was accepted on this clinical trial, and moved away from that oncology department.

 

When Richard needed a stent the surgeon tried to insert one using an endoscopy but was unsuccessful. The surgeon managed to insert it through the skin.

So how long were you in hospital to have this stent?

 

Oh, well, in the end a long time, for something like, something over a week I suppose. I missed the whole of Easter 2007 I remember. Because I had this problem over the INR [a blood clotting test] and the jaundice and we had to wait for that to clear up. Then, the idea was to put the stent in, down through, down through my mouth, and there was a valve in the end of the pancreatic duct, as I understand it, and they were going to force the stent in against the valve, the opposite way to the, to which the valve is meant to operate. And the valve was too strong. They couldn’t do it. So, so that operation had to be aborted. And then, so they then tried again by coming into my abdomen through the side here and putting the stent in. And that was successful. So it took…, and, and then I had to wait then for the liver function to, to regain its normal state.

 

Creon has helped Richard to digest fats and has made him look and feel much better.

Apart from the chemotherapy and painkillers, do you have to take any other long-term medicines as a result of the pancreatic problem?

 

No, no. Oh, well, except the Creons. And the Creons I’ve been taking I think possibly even before the operation. The pancreas produces enzymes which help digest fat. So if your pancreas is not working too well, one of the effects can be that you’re not producing these enzymes. So the fat doesn’t get digested, and that, that fat comes out in your stools. And that’s one of the reasons that you can get floating stools as a symptom of pancreatic cancer. If you take, the trade name of the ones I take are called Creon, and they’re, they’re pigs’ enzymes. And you take those with meals and it helps to digest the fat. And I think of, of the, of one single item that, that’s helped, it’s been those. Because obviously I was, if you like, on a fat-free diet before I was being treated. And now, now I’m getting, the fat that I’m eating is being digested and getting into my system and making me look a lot better.

 

And do the stools look normal now?

 

To be honest, I’ve forgotten. This has gone on for so long. Yes, I’ve half forgotten, sorry, I’ve forgotten what normal stools look like. But, yes, they look better than they were, yes, much better.

 

Richard was in the TeloVac trial. After 2 weeks chemotherapy he had only the vaccine for 18 months. Then his tumour grew again so he stopped it.

So then you had the opportunity of this trial. What was it called, the trial?

 

This is the, TeloVac trial, where they are using a vaccine. And it’s being run by Liverpool University and Liverpool Royal Infirmary. And they have hospitals around the country who are outreach hospitals, where you can go for treatment.

 

So when did you start on that?

 

In August of 2007. I started off with two weeks of chemotherapy and then went on to the vaccine. And initially the vaccine was, there was three vaccines a week, and then it w-, s-, went down to one vaccine a week, and then down to one a month.

 

How was the vaccine given to you?

 

It was into the skin in the stomach. It had to be done very carefully and in a particular way, not too deep, not too shallow. And, but that was, that was fine. 

 

And how long did all that go on for?

 

I became the longest surviving patient, and I, I was on the vaccine for eighteen months. And it was during that time that I ran the New York marathon.

 

Were you having chemotherapy at the same time?

 

I was having this, no, I was having the vaccine. There were other arms of the, of the trial where some of the patients were having chemotherapy and the vaccine, and then some like me were just having the vaccine.

 

So you had some chemotherapy initially?

 

Two weeks, yes,

 

And then the vaccine?

 

Yes.

 

For how long?

 

Well, for, for eighteen months in my case. After eighteen months the CT scan showed that the tumour was growing. So we then presumed that the vaccine wasn’t working any more. So there was no point in carrying on with it. So after then I went on to chemotherapy.

 

So what date are we at now?

 

I’ve been on chemotherapy now for a year.

 

So that was a different, was that a different sort of chemotherapy that you started?

 

No, it was the same chemotherapy that I started on initially. Yes, gemcitabine, capecitabine.

 

So you had some chemotherapy, then the vaccine trial that went on for eighteen months?

 

Yes, yes, two weeks of chemotherapy, and then, yes, the vaccine, which w-, would go on for as long as the patient was finding it useful. In my case it was eighteen months, yes.

 

Were there any side effects of the vaccine?

 

No, it was brilliant. And you turned up once a month, so it didn’t intrude into your life really at all. And, and the side effects, I don’t remember there being any side effects at all.

 

Richard didn't want to join a support group, regarding them as a 'double-edged sword'.

Have you joined any support group for other people with, with cancer? I mean have you joined a hospital support group or anything like that?

 

No, I regard the, I think, support groups as a double-edged sword. Yes, I’m sure they can be very useful, and, and you can learn things that’ll help you and you can get support from people. I’ve no doubt about that. But the other side of the coin is that you might see things or see people or learn things that you don’t want to know about. And I find that quite upsetting.

 

Richard described what his ultrasound scan was like. He was disappointed that he had to wait so long after it for a CT scan.

Could you, you’ve talked about various tests. What was it like to have an ultrasound test?

 

Well, quite harmless. Quite, almost pleasant. Yes, there’s nothing- 

 

What happened?

 

They put some jelly over your abdomen and then rub this strobe over, over your abdomen and the picture or the echo comes up on a monitor. It’s very much, well, it’s exactly the same as what you see quite often on the tele when you see pregnant ladies having a, an ultrasound test. It’s the same sensor and everything. And I mean it’s harmless, it’s non intrusive. Yes, it’s quite a useful tool. The thing that perhaps disappointed me with it was having, that test proved positive, they then wanted to back it up with a CT scan. So it makes you wonder, “Why not have the CT scan in the first place?” But I suppose it might be a question of time and money and so on.

 

How long did you have to wait between the ultrasound and the CT scan?

 

The testing procedure took really six months. And I, I was disappointed because I would be, an order would be put in for a test, and I would get a date for that test in perhaps two weeks or twelve days later, and then go for the test, and then I would have to wait probably another twelve days to see the consultant or the registrar to find out the result. And so, I mean I complained at one time that I was more or less getting one test a month. Two weeks to wait for the test, another two weeks to wait for the result roughly. And I found that disappointing.