Mar. 16, 2008 -- Josh Sommer is the extraordinary college student who was diagnosed with incurable cancer and told he had seven years to live. Devastating as the diagnosis was, Josh wasted little time getting right to work. He's since launched the Chordoma Foundation, raised money for cancer research and organized cancer scholars around the world to talk about chordoma -- in addition to working 30 hours a week researching a cure to his own disease.
We invited our viewers to ask him questions. Below are his answers:
John from Rocklin, Calif., asked: Josh, what type of treatment are you receiving now? Can you explain in more detail how this type of cancer progresses? Good luck too you!
Answer: Right now I am being watched carefully with regular MRI's and check-ups.
From what I've learned by reading the medical literature and speaking with patients, the progression of chordomas varies widely.
In general they are slow growing, yet relentless tumors. The tumor may or may not return after surgery and/or radiation.
Once a chordoma comes back or metastasizes, patients are often treated with various chemotherapies, but none has been shown to be consistently effective. That said, some patients do benefit from chemotherapy.
Once the disease becomes uncontrollable the tumors can become very large and begin to spread.
Patients with large tumors or tumors that spread throughout the body often suffer intense pain; however, due to the slow growth of the tumors, this pain is often prolonged before the patient ultimately succumbs to the disease.
It is not pleasant to think about. For more information about chordoma click here.
Alexandria from Carrollton, Texas, asked: My family was so inspired by your story and we will continue to pray for you. How can we donate money to the Chordoma Foundation?
Answer: Thank you for the encouragement and eagerness to help! I've been blown away by the generosity of so many people.
To donate visit: www.chordomafoundation.org/involved/donate.aspx.
We really appreciate anything you can give. If everyone reading this response gave just $10 we would be well on our way to reaching our goal of $3 million by 2009.
I am confident that if we meet this fundraising goal, that we'll have a good shot at developing new treatments in time to save the lives of many chordoma patients alive today.
From a scientific point of view I see a path towards new treatments, which is limited mainly by resources. Every donation puts us one step closer on the path towards a cure.
I appreciate your prayers and support -- it is very motivating for me to hear.
All the best,
Tracy Hendley from Conroe, Texas, asked: Do you know if there is a specific gene linked to Chordoma? I ask because my mother died with it 5 years ago, and we were told they didn't know much about it.
Answer: To identify the gene or genes associated with increased risk for chordoma, researchers need to study families in which multiple relatives develop chordoma.
This allows researchers to isolate the stretches of DNA that affected individuals share in common, and search for mutations (changes) in the genes that lie in that region of DNA.
Thus, identifying families with multiple cases of chordoma is extremely important for research.
However, familial chordoma is very uncommon, and as far as we know, most chordomas are sporadic; meaning that predisposition for developing chordoma is not inherited.
If you or anyone you know has multiple family members affected by chordoma, please call 1-800-518-8474 to learn more about the National Cancer Institute's Familial Chordoma Study.
Wishing you good health!
Danny Neger from West Palm Beach, Fla., asked: My partner's 13-year-old nephew in Long Island, New York was diagnosed with chordoma and had a golfball size tumor removed from his skull 6 weeks ago. He has been advised to go to a pediatric radiation center for an extensive course of radiation. The tumor was completely removed. What is the purpose of the radiation treatment? Also you stated in your story that the average life expectancy is 7 years: does that mean if surgery and other treatments are performed the tumor reappears and causes debilitation where the patient succumbs to this disease? Any information or resources would be appreciated.
Answer: I'm really sorry to hear about your nephew, but it gives me more motivation to do everything possible to find a cure.
In general radiation is meant to kill tumor cells that for whatever reason were not removed by surgery.
The average survival (time from diagnosis to death) is about 7 years. This statistic was determined by researchers at the National Cancer Institute by surveying hospitals across the entire country.
It is very important to remember that this is just an average so some patients live longer, and others die sooner. This number cannot be applied to any one person since each person's situation is different. Only your nephew's doctor can say what his prognosis is.
Check out our website for more information about Chordoma, treatment options, and resources available: www.chordomafoundation.org