Tuesday, February 26, 2008

Did You Know?

Did You Know..

Cancer is the leading cause of death from disease in children between the ages of 1-19.

1 in 330 will be diagnosed with cancer by age 20.

More children die from cancer than from all other childhood diseases combined.

The incidence of childhood cancer has increased every year for the last 25 years.

Every school day, about 46 young people (2 classrooms full) are diagnosed with cancer in the US and that 7 will die each day.

The National Cancer Institutes federal budget is about $5 billion. Less than 3% of that goes toward all pediatric cancers combined. The rest goes toward adult cancers. Breast cancer alone receives 12%. Prostate cancer receives 7%.

At time of diagnosis in children, the cancer has already spread in 80% of the cases. That is compared to 20% in adults. At the time of Tyler's diagnosis the cancer had spread extensively and he was stage 4.

The outcome of teenagers with cancer has not improved is 30 years. Young adults aged 15-22 have the lowest cancer survival rate of any age group.

Teenagers are extremely under represented in clinical trials for cancer, especially the 15-19 age group. They tend to excluded from both childhood and adult cancer studies, in both cases due to their age.

In the past 25 years there has only been one new drug treatment developed specifically for pediatric cancers. Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers. For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.

A 5 year study was recently concluded at Children's Hospital of Pittsburgh of UPMC, that concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. Directors of the study, Peter Shaw, MD (pediatric hematologist/oncologist and director of the Adolescent and Young Adult Oncology Program), and Dr. Kim Ritchey, MD (chief of the Division of Pediatric Hematology/Oncology and vice chair of Clinical Affairs in the Department of Pediatrics) concluded:

"Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials for two important reasons: the first factor is that they are frequently treated by adult oncologists at hospitals that aren't participating in clinical trials designed for cancers occurring in the pediatric and adolescent age groups. Our study demonstrated the second reason, which is that nationally, there are many more clinical trials available for the types of malignancies that most often occur in the younger patients"

Rituxan is a drug that is still in trials that has shown very good results with Burkitt's when combined with the very high dose chemotherapy treatment Tyler is receiving. It offers two primary benefits. First, it improves the effectiveness of the chemo while reducing the side effects. This is critical since Tyler twice has been delayed in treatment due to excessive side effects. Second, it reduces the likelihood of a relapse by 50%. This is critical since survival rates on relapsed stage IV Burkitt's are very grim. We began trying to get Tyler in the Rituxan study within 24 hours of his diagnosis on advice from a senior oncologist at Stanford University. We have be shut down at every attempt. MD Anderson's in Texas has agreed to put Tyler on Rituxan outside of the study. They have been using the drug outside of the studies for over 7 years. Children's has refused. We are now forced to choose between keeping Tyler where the treatments are working, or move him across country to a facility that is more proactive about a potential relapse.

Another day in our education on cancer.

5 comments:

Anonymous said...

Dear Kyle,
You are eloquent in all I have read! It is a terrifying thing to have your child diagnosed and then to hear those statistics is enough to send you shrieking into the night!Thank you for keeping these statistics in front of people.With your kind permission I would like to post it on my sons page.He too suffered from Burkitts.We are 6 months out of treatment and doing well.I can only pray that this will be the outcome for Kyle.If it is Ok to post please email me. scat_43067@yahoo.com
Thank you and God Bless

deyerles said...

I say do it!
Debbie

Tammy C said...

The outcome of teenagers with cancer has not improved is 30 years-33 years ago I had a classmate die from cancer.I find this sad that by now the rates would be higher.

Will keep praying for you.

Anonymous said...

Dear Kyle,
These facts that you write sound very interesting indeed. Actually they are very frightening if they are true. Which brings me to my point.

Could you please let us know where you get this information from. For example your comment that teenage cancer has not improved in over 30 years is an appalling statistic but where did you find this figure? Could you please list your source(s) of information when you state a fact so that readers can then do their own further research if they wish. I would like to quote these figures to my doctor but he will say where is the proof and if I say "that I found it on a blogsite" he is not going to take me seriously.

A common comment heard from oncologists is that anyone can write anything on the internet, so as soon as a parent mentions that they found something on the net on a blogsite, the doctor will just turn his nose up and walk away.

Thank you,
Jenny

Stephen Trevathan said...

Clinical research has come a long way. You see numbers like these and it is really frightening to think that your child could be diagnosed. I definitely think that clinical research studies on cancer have opened up gateways to more effective treatment. In fact, I recently read of a million dollar donation made by Stop! Children's Cancer to help further clinical research in Florida.