FAQ

Q. Why do you participate in clinical trials?

A. It gives me the opportunity to stay at the fore front of the most current treatments for HD. The future for treating many cancers, including HD is monoclonal antibodies, HDAC Inhibitors, protein enzymes and protein inhibitors. Over the last two years, I’ve participated in the CD-30 clinical trial, PDX clinical trial, PR-171, GND and I’m starting SAHA (Suberoylanilide Hydroxamic Acid) clinical trial in October 2006.

Q. Would you have another stem cell transplant, or bone marrow transplant?

A. I’ve really had to rethink my position on this over the last year… If I have a Bone Marrow Transplant and it fails, I’m out of treatment options. And, my first thought of going through another SCT is …NO, NEVER. It’s a dreadful process that no one can understand unless they’ve done it, but when the rubber meets the road… I’ll answer the question how my New York friend Vinnie says it: “I do’s what I gotta do’s.”

Q. Will you ever be cured?

A. I HOPE SO… But, with today’s technology, without a successful Stem Cell Transplant or Bone Marrow Transplant SCT the answer is NO. Any card carrying oncologist will tell you the only way to cure me right now is SCT or BMT and with a success rate of 50%, I’m really apprehensive. I had a SCT in 2002 and technology has improved in the last four years, hopefully within the next year this will be a viable option for complete cure for me. We’ve had fairly open dialog with doctors at Fred Hutchinson Cancer Research Center in Washington and we’re going to sit down and for a formal consultation in mid 2007.

Q. Do you know of any new drugs coming out?

A. This is one of the most FAQ’s I receive…The two newest drugs I know about are MGCD0103, which became available August 22, 2006. This drug is manufactured by MethylGene, this is a Phase 1 trial and is referred to as a HDAC inhibitor and is current available for HD at patients MD Anderson in Huston, Texas. It’s also worth mentioning that there are five other pharmaceutical and biotech companies that are in the process of releasing their own version of this HDAC inhibitors. The other new drug is TNX-650, which is manufactured by the Texas based Tanox. TNX-650 is a Interleukin 13 suppressor, also known as IL-13 suppressor and is the only drug ever made specifically to treat recurrent HD, clinical trials began in May 2006. My parents have been monitoring this trial closely and remain in contact with Tanox and the Principle Researchers at MD Anderson and Sloan Kettering, which at this time are the only cancer centers in the country administering the drug. If it shows promise, I’ll move back to New York and participate in the trial.

Q. How long are you going to live on the East Coast?

A. I officially moved back to Cali in May 2006, I lived in New Jersey for 18 months. I still commute to New York every month or so, for doctor appointments. One of Dr. O’s oncologist friends is on staff at City of Hope; her name is Leslie Popplewell M.D. - Dr. O. made arrangements with her to treat me, however, I remain under Dr. O’s umbrella of care, Yoda guides the path, I follow.

Q. What have you learned about this medically?

A. There are two types of doctors, treating doctors and research doctors. In other words, doctors who read the books and doctors who write the books. I’m really blessed to have an incredible doctor. I’ve learned there are many treatment options available and don’t limit myself to one avenue or put my hope and trust in just one drug, if a drug shows promise and my doctor recommends it, I’ll probably try it.

Q. Have you really fired a nurse?

A. Yes, several times… Most nurses work 12 hours shifts and you’ll know within the first hour if they’re good or bad. If they’re good, I thank them often because they’re working hard for every patient they’re caring for. But, if takes thirty minutes to bring a Tylenol, I get rid of them within the first hour because it’s going to be a long 12 hours if I don’t. Especially when you have to go to the bathroom or the IV monitor is making noise. What’s funny is other nurses know who the bad nurses are too.
Q. Which chemotherapy treatment was the worst?
A. ICE… Even my finger nails and toe nails came off.
Q. Why did you live in New Jersey and get treatment in New York?
A. My Dad’s employer, Honeywell allowed me to live in Corporate housing in Madison, which is located very close to Honeywell’s Corporate Headquarters in Morristown, New Jersey.

Q. What was the hardest thing to get used to in New York?

A. Cost of transportation and the crowdedness in the city. They even charge to drive on the freeway; they call them “toll roads” its six bucks to get into New York.

Q. So far, how much are your medical bills?

A. It’s in the millions.

Q. What have you learned from all of this?

A lot… click for “11 Things I've Learned”
 
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