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'Thalidomide took away my son's tumour'
By Jane Elliott
BBC News health reporter
When Alex Cooper woke up feeling sick and with blinding headaches, his parents thought he had picked up a virus. Just hours later however, 10-year-old Alex was fitting. His worried parents called an ambulance and Alex was taken to his nearest hospital.
A scan revealed serious problems and he was whisked to the Queen's Medical Centre, in Nottingham, where surgeons operated on a large and aggressive brain tumour.
Survival
His mother Lorraine said hopes were slim that her son would survive. But four years on Alex, now aged 14, has been told his tumour has gone completely - thanks to a new use of the drug thalidomide.
Thalidomide was withdrawn in the UK in 1961 after thousands of babies were born with no limbs, or with stunted arms or legs.
It has since been used to kill cancer in adults, but use in children is very rare.
Now doctors can give it to children, who, like Alex have brain tumours, under strict controls, and if all conventional treatments have failed.
Doctors behind the new treatment have said that the problems caused in pregnancy were due to the way the drug stopped new blood vessels being made in the limbs.
Now these properties are being used to fight the tumour.
Lorraine said her family are understandably delighted with the results, but because the use of thalidomide in children is so new that no-one knows whether Alex's tumour is gone forever.
"We are very cautious at this stage, but very pleased with the results."
She said that when the tumour was first diagnosed in August 2002, doctors prepared her for the worst.
"He nearly died a few times in surgery and they did not expect him to last the night.
"After the operation they kept him asleep for eight days because his brain stem had been bruised."
He was allowed to recover and a fortnight later Alex was allowed home and then had a course of radiotherapy.
He was only given minimal chemotherapy, but the next January he had a recurrence and had to be put on the stronger chemotherapy drug temozolomide.
"They said when he went back to hospital that he only had two days to live. He was kept on the temozolomide for a year and had it every four to six weeks."
All-clear
In June 2004 the Coopers and their consultant decided to try Alex on a reduced dose of the chemotherapy, combined with thalidomide and in May this year he was given the all-clear.
"Now it has gone from his head being completely filled with the tumour, to nothing," said Lorraine. "He had the most aggressive type of tumour, a grade four. So it was a surprise when it went. I did not expect this. Mostly with tumours like this, the children are given just six to 12 months to live.
"This is a miracle."
Lorraine was amazed by the impact that thalidomide had on the tumour, and although she knew of the terrible side-effects the drug had in the past she felt she had to let Alex try it.
"To be honest, when you get to the stage that we had, you will try anything and thalidomide is so obviously helping. I don't know how it has done it, but it has got rid of all the bits and pieces of the tumour."
Lorraine said Alex had now been taken off the chemo, but was still continuing to take thalidomide.
She said her son was greatly improved, although he still feels very tired. During surgery Alex needed to have part of his skull removed and so now has epilepsy and suffers from short-term memory loss.
But Lorraine said he is back at school part-time and they are starting to becoming a little more confident about the future, even going away for a much-needed holiday in Bournemouth.
"We had holidays before, but we were never far from the hospital and quite a few times we ended back there again.
But this time Alex has seemed so much better he even managed a game of crazy golf.
"Alex has got better every day.
"He never thinks about having a brain tumour he just gets on with it. He has been so brave he has kept us all going."
Alex agreed. "I feel OK now, but sometimes I do wake up a bit tired. I am very pleased with the drug."
Professor David Walker, of the Queen's Medical Centre, who treated Alex, said he was delighted by his patient's recovery.
But he cautioned against expecting Alex's spectacular results in every patient.
"One swallow does not make a summer.
"But we are all delighted by the results from his drug combination, which included thalidomide."
Professor Walker said a full study would be needed so medics can evaluate how well thalidomide is working.
"Alex is definitely the best response we have had so far. "
By Jane Elliott
BBC News health reporter
When Alex Cooper woke up feeling sick and with blinding headaches, his parents thought he had picked up a virus. Just hours later however, 10-year-old Alex was fitting. His worried parents called an ambulance and Alex was taken to his nearest hospital.
A scan revealed serious problems and he was whisked to the Queen's Medical Centre, in Nottingham, where surgeons operated on a large and aggressive brain tumour.
Survival
His mother Lorraine said hopes were slim that her son would survive. But four years on Alex, now aged 14, has been told his tumour has gone completely - thanks to a new use of the drug thalidomide.
Thalidomide was withdrawn in the UK in 1961 after thousands of babies were born with no limbs, or with stunted arms or legs.
It has since been used to kill cancer in adults, but use in children is very rare.
Now doctors can give it to children, who, like Alex have brain tumours, under strict controls, and if all conventional treatments have failed.
Doctors behind the new treatment have said that the problems caused in pregnancy were due to the way the drug stopped new blood vessels being made in the limbs.
Now these properties are being used to fight the tumour.
Lorraine said her family are understandably delighted with the results, but because the use of thalidomide in children is so new that no-one knows whether Alex's tumour is gone forever.
"We are very cautious at this stage, but very pleased with the results."
She said that when the tumour was first diagnosed in August 2002, doctors prepared her for the worst.
"He nearly died a few times in surgery and they did not expect him to last the night.
"After the operation they kept him asleep for eight days because his brain stem had been bruised."
He was allowed to recover and a fortnight later Alex was allowed home and then had a course of radiotherapy.
He was only given minimal chemotherapy, but the next January he had a recurrence and had to be put on the stronger chemotherapy drug temozolomide.
"They said when he went back to hospital that he only had two days to live. He was kept on the temozolomide for a year and had it every four to six weeks."
All-clear
In June 2004 the Coopers and their consultant decided to try Alex on a reduced dose of the chemotherapy, combined with thalidomide and in May this year he was given the all-clear.
"Now it has gone from his head being completely filled with the tumour, to nothing," said Lorraine. "He had the most aggressive type of tumour, a grade four. So it was a surprise when it went. I did not expect this. Mostly with tumours like this, the children are given just six to 12 months to live.
"This is a miracle."
Lorraine was amazed by the impact that thalidomide had on the tumour, and although she knew of the terrible side-effects the drug had in the past she felt she had to let Alex try it.
"To be honest, when you get to the stage that we had, you will try anything and thalidomide is so obviously helping. I don't know how it has done it, but it has got rid of all the bits and pieces of the tumour."
Lorraine said Alex had now been taken off the chemo, but was still continuing to take thalidomide.
She said her son was greatly improved, although he still feels very tired. During surgery Alex needed to have part of his skull removed and so now has epilepsy and suffers from short-term memory loss.
But Lorraine said he is back at school part-time and they are starting to becoming a little more confident about the future, even going away for a much-needed holiday in Bournemouth.
"We had holidays before, but we were never far from the hospital and quite a few times we ended back there again.
But this time Alex has seemed so much better he even managed a game of crazy golf.
"Alex has got better every day.
"He never thinks about having a brain tumour he just gets on with it. He has been so brave he has kept us all going."
Alex agreed. "I feel OK now, but sometimes I do wake up a bit tired. I am very pleased with the drug."
Professor David Walker, of the Queen's Medical Centre, who treated Alex, said he was delighted by his patient's recovery.
But he cautioned against expecting Alex's spectacular results in every patient.
"One swallow does not make a summer.
"But we are all delighted by the results from his drug combination, which included thalidomide."
Professor Walker said a full study would be needed so medics can evaluate how well thalidomide is working.
"Alex is definitely the best response we have had so far. "
