Doctor's Diary - survival

24 September 2014
Sam celebrating fifth anniversary of end of treatment

Week four: by guest blogger, Dr Phil. Throughout Childhood Cancer Awareness Month Dr Phil shares her weekly Doctor's Diary. This week, she looks at survival.

More from Dr PhilDoctor's Diary - diagnosisDoctor's diary - treatmentDoctor's Diary - side effects

28th July 2014

Cause for celebration! Not only my son's 22nd birthday which he celebrated in a field at a festival, but also his fifth “anniversary” of completing his 36 month chemotherapy regime for acute lymphoblastic leukaemia.

He was treated on the UKALL 2003 regime and was randomised in this trial to receive one intense block of treatment after his initial five weeks of induction treatment. This cocktail of chemotherapy included eight different types of cancer killing drugs which were given by various routes (through a vein, into muscles, into the spinal fluid and orally).

In addition he took regular courses of steroid tablets (which caused the worst side effects for him) and weekly antibiotics to prevent infections. There were also drugs to counteract the side effects such as laxatives, anti-sickness drugs, pain killers and tablets to relieve the anxiety/insomnia he suffered. There was often a handful of drugs to take, some days he really didn’t want to swallow them and we would have to cagoule him into complying.

He also had regular bone marrow tests to assess how the treatment was working. These were taken through the pelvic bone in his back.

He had 27 lumbar punctures that were initially performed under general anaesthetic, but as he was one of the older patients undergoing treatment on the day ward he always had to go at the end of the list, so had to starve for many hours waiting patiently for his turn. As a result he decided to have these done under local anaesthetic whilst he was awake. He did have entonox (laughing gas) and often made the nurses chuckle as he became quite animated whilst inhaling.

Cause for celebration! Not only my son's 22nd birthday which he celebrated in a field at a festival, but also his fifth “anniversary” of completing his 36 month chemotherapy regime for acute lymphoblastic leukaemia.He also received 15 bags of blood to treat anaemia, which is a recognised side effect of having chemotherapy. They were always long days as blood had to be cross matched and then infused slowly. I remember staring at those bags and feeling so grateful for the altruistic donors who give up their time to help save lives of strangers.  What an amazing gift. This motivated me to become a blood donor but was horrified after my first donation when the nurse said it was such a small amount it might only be enough to be used to calibrate a machine in the lab! Luckily I persuaded her to let me stay a few minutes longer to make it adequate for a patient.

Overall, considering our son completed 36 months of treatment we only spent nine nights in hospital, which is low and is obviously hugely variable depending on the patients age, diagnosis, variations in treatment regimes and complications.

Last week I spoke about schooling and I am pleased to say that his results were incredible considering he missed most of year 10. He still achieved five GCSE’s at A and B grades and he is now at University studying computing.

GP comment

The good news: The number of UK child deaths has fallen by 22 per cent compared to 10 years ago. The sharpest decline is in leukaemia, where the death rate has almost halved. If I had been diagnosed with leukaemia as a child I would have only had a 10 per cent chance of surviving.

So there have been tremendous advances with more children than ever surviving. Nearly all children with retinoblastoma (eye cancer) are cured. Liver cancer survival rates are three times higher and rhabdomyosarcomas (muscle cancer) survival rates have doubled compared to the late 1970’s. There have been great improvements with kidney cancer and neuroblastoma (cancer of the nerve tissue) too.

The bad news: 260 children on average every year lose their battle and die. This is still too high and more research is needed into new treatments especially for brain tumours which are still the most common cause of childhood cancer death.

The 33,000 childhood cancer survivors are at risk of chronic health problems in later life and therefore long term follow-up is important and research to make treatments less toxic is crucial. Recognising which children need less treatment is equally vital to reduce these late effects.

Very little is known about the cause of most childhood cancers so there is much research ongoing to establish possible reasons why cancers develop. Children with Cancer UK recently awarded £2.3 million for 10 new project grants.

The 10 projects cover a range of childhood cancers including brain tumours, germ cell tumours, neuroblastoma and leukaemia. The ultimate aim of each of the projects is to improve outcomes for young cancer patients, in terms of increased survival and, reduced toxicity.

Read more: Childhood Cancer Awareness Month | Cancer facts & figures

PostCounter

Where your money goes

Hover over a segment for details

NCRI AMRC Fundraising Standards Board