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Clinical trials: Parents’ experiences

Vaccine trials

Immunotherapy is being used as a experimental treatment for prostate cancer. Patients are injected with dead prostate cancer cells, so that the cells within the body responsible for protection against viruses and bacteria (the immune system) are alerted to the presence of cancer cells. If the treatment is successful, the cells in the immune system seek out and destroy any cells that resemble the tissues used in the vaccine. Two men described their experiences of vaccine trials.

 

Describes his experience of the vaccine trials.

Describes his experience of the vaccine trials.

Age at interview: 65
Sex: Male
Age at diagnosis: 59
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I then wrote to the [name] Hospital, to the consultant there who was doing the trial, and asked for more information about it. This was about 2 months after the trial had started. The trial was for 60 men to have the prostate cancer vaccine which had been devised. A similar vaccine had already been used on melanoma which had proved to be quite useful so I was encouraged to think well if it's worked on one cancer it may work on another. I got some written information about the trial, discussed it with my two daughters and they said 'Well if you're happy to go on it you know go for it.' I was told that I could come off that trial at any time I wished if I didn't feel it was doing any good I could stop the trial at any time. 

There were certain entry criteria for the trial that I had to fulfil. The main one was that I had to have a PSA of above 30 and rising and that I had to have had two hormone drugs that had ceased to work efficiently which I had. The only problem was that my PSA was just below 30 at that stage and wasn't rising so they said 'Well we can't take you until that happens.' So I had to start having regular monthly PSA tests until such time as my PSA went over 30 and carried on rising which eventually about 3 months later it did. So in July of last year I qualified for the trial and started on the trial. Because it was a trial things changed during it. I was originally told that we would have to go down to London every 4 weeks for the injections. The injections were 2 in the lymph nodes underneath the armpits and 2 in the groin at each side. That was okay, it wasn't too bad, there was just a slight stinging from the vaccine as it went in and then it was okay. Before the trial started I had to have some trial injections to find out if my skin would react to the vaccine at all and that was not the case, it didn't react so I was okay for going ahead with it. So we started work on the 4 weekly injections and I felt quite well, I felt my energy levels were increasing, I didn't feel as tired, I didn't feel as fatigued as I had done and I thought it was doing me good. I tried to get feedback from the consultant as to how they felt it was going but they were quite noncommittal, I think probably because it was a trial they didn't want to say too much about how they thought it was going. The only thing they did say was that they felt that the vast majority of men on the trial were feeling better and they seemed to be producing more cells to fight the cancer so that was encouraging news. And because I felt so well I assumed that I was one of the ones that was producing these cancer fighting cells.

Did they say much about how the vaccine had been developed and what was in it?

It was developed from dead cancer cells from other patients. There was a similar trial being conducted in America where the vaccine had been produced by taking the cells from the patients themselves but that was the difference between the two. I believe there's now a trial going on in Britain which does exactly the same thing as the American one where they take the dead cells from the cancer patients themselves, make the vaccine then re-inject it. There are currently additional trials going on as far as I'm aware, a new one at St George's, another one at Hammersmith Hospital in London. I don't know too much detail about those.

And how long does the trial go on for?

Well the trial, we were told initially that following 12 injections we were going to go down to 12 weekly injections but when it came to my turn to go onto the 12 weekly injections I was told that they'd changed their minds because they'd found that some of the men that had started before me were having adverse reactions to carrying on with the injections following the end of the 12, monthly ones. So they, they decided to change what they'd originally said and finished the vaccines after the 12 injections. So in July of this year I finished the injections. I immediately started having a reoccurrence of bone pain, whether that was because I'd stopped having the injections or whether it was coincidental I don't know.
 

Describes the process and the checks made to see if he was eligible for a vaccine trial

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Describes the process and the checks made to see if he was eligible for a vaccine trial

Age at interview: 55
Sex: Male
Age at diagnosis: 51
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When I arrived in London it was explained to me first that I would have to undergo a few tests to see if I'd be eligible for the trial, medically eligible. This took place over about an 8 week period, I was attending twice a month for certainly 3 months.

So you were coming down each time?

I was coming down each time, having the various tests and examinations to see if I'd be a suitable candidate. Fortunately I was a suitable candidate and then began a course of injections of a cancerous substance which was taken from prostate cancer and immortalised.

From human?

From human prostate cancer cells

Yes

It was described it was immortalised which it was explained to me that it was made perfectly safe for injecting into people and it consisted of having four injections in the lymph nodes sites once per month.

Were the lymph node sites which you had, were they already affected?

Not as far as I'm aware no... This was 4 lymph node sites, 2 in the abdomen and 1 under each arm, or in that vicinity. 

Was it explained to you why the injections were into the nodes?

Well they basically wanted to get it into the lymphatic system, I suppose to get it around the body as quickly as possible and see if antibodies would be produced and sure enough they were. But unfortunately after a few months my PSA level had risen so high that the consultant at the time decided it would be pointless me continuing with this trial any further. 

Can I ask you something about the vaccine, when it was first explained to you did you have any qualms about it?

No qualms whatsoever no.

You didn't feel uncomfortable about?

No not at all, not at all, may be it's because of my background in electronics and physics and engineering I tend to look more to the latest technologies rather than the homeopathic or herbal remedies that's bandied about. I look for the latest and the greatest, hopefully it's going to be the latest and the greatest anyway.
 

Last reviewed July 2017.
 

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