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• Medical research >> Clinical Trials >> Side effects and queries >> Side effects and queries

Side effects and queries

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• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> She experienced many of the side effects she was told might happen. It was a worrying list, but she’s glad she was well prepared before agreeing to ta

Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Anthea - Interview 39 >> Anthea knew she could withdraw if she had bad side effects, but in fact they were generally mild. Only once at the beginning she had to stop for a wee

Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.

• Medical research >> Clinical Trials >> Mental health trials >> Fenella - Interview 20 >> Every trial has some risk, but medical research is carefully regulated to protect patient safety, and not all trials are about drugs.

Fenella took part in a randomised trial of partial hospitalisation compared to standard community treatment for borderline personality disorder. Results showed the group she was in (partial hospitalisation) had better outcomes.

• Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> There was a small risk from the injections of anaphylactic shock, but there were safety precautions in place. They kept a diary to report other reacti

Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna argues for more public debate about the trade-offs between side effects and gains in survival. Patients, government, doctors and scientists hav

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

• Medical research >> Clinical Trials >> Not taking part in a trial >> Marie - Interview 25 >> She had heard bad things about commercial trials. She thought a trial in an NHS hospital would be run by the NHS and was worried to discover it was ru

Marie was diagnosed with chronic lymphocytic leukaemia in 1992. She was recently invited to take part in a clinical trial of a new monoclonal antibody. At first she thought she would take part but after reading all the details decided against it.

• Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> There are strict regulations in place to protect patient safety, so the risk of something going seriously wrong in any trial is very small. Lessons ha

Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.

• Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> Drug companies will of course research products in order to make money, but the UK has a good system of regulation. Lester is more worried about wheth

Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna suggests getting opinions from other people before consenting to a trial, and considering its wider value and importance. Most trials won’t bri

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Leslie - Interview 43 >> Leslie thinks there is too much secrecy around drug company trials, and feels they are more interested in profit than safety.

Leslie took part in a placebo-controlled drug trial of rofecoxib (Vioxx) for prostate cancer prevention. He became extremely ill, but doctors monitoring his progress did not pick up his symptoms. He took the drug company to court, and won compensation.

• Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> Polly advises people to ask a lot of questions and get a second opinion if possible.

Polly was invited to be in a trial comparing tamoxifen against a placebo for breast cancer in the 1990s. She decided not to take part, because she felt there was already good evidence to support the use of tamoxifen.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Rose - Interview 17 >> Rose would not want to test very experimental treatments, unless she was terminally ill. Then she might do it to benefit future generations, such as h

Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.

• Medical research >> Clinical Trials >> Long term conditions >> Angela - Interview 23 >> Angela thinks it’s a pity much publicity about trials has been negative and all about side effects. People need to come forward with positive stories.

Angela was diagnosed with Parkinson’s disease after taking part in a trial on nerve conduction. She has since been in a randomised trial of different drugs for Parkinson’s and would happily take part in another trial, despite having had side effects.(Angela is also on our Parkinson’s disease site, Interview 10).

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Tom - Interview 14 >> When someone is seriously ill it’s not the best time to explain clinical trials. We need more general awareness, to challenge the idea that research i

Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> The 60th anniversary of the NHS could have been an opportunity to tell the story of why medical research is valuable and what’s been achieved in the l

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Celia’s message to others asked to take part in a trial is to look at it seriously and see if you are able to help.

Celia took part in a randomised controlled trial comparing different periods of radiotherapy for lymphoma. She was would have preferred the shorter course; she was allocated to the longer course but took part anyway.

• Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Being in a trial is a personal decision, but Merilyn encourages people to consider it. Medicine can only make progress if people volunteer.

Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> It’s difficult to advise others, but Julian recommends taking part in a trial, both because it helps others and because you get close monitoring and a

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

• Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil encourages others to think about taking part in a trial unless they have real fears. You’ll be safe and well looked after, and can always pull ou

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> Unless you have strong feelings about which trial group you would want to be in, Jayne advises people to take part. She is confident in the system of

Jayne had breast cancer aged 33. She wanted to join a clinical trial but her consultant was not interested, so she transferred to another hospital and took part in a trial comparing tamoxifen with tamoxifen plus goserelin (Zoladex).