I have recently been dealing with some of the long term side effects due to my treatments. Over the years I've done this type of search every so often and have never really found anything out on the net. Your site is a valuable resource.

I've also had doctors tell me that I'm the longest survivor they have heard of - which is a blessing that I'm grateful for every day. However, part of me want to know what is going to happen as time goes on -Since I'm computer literate and able to understand the net and how to get this information out, maybe that is what I am being called to do. Your invitation to offer some of my experiences so you can make them available is about as clear a sign as I'm going to get, so I will take you up on it. I will explore your site and see how I might be able to offer some info. If you have any questions, please let me know and I will do my best to answer them with as much info as I can offer.

From the start of my disease, I was fortunate to be located in Southern California and have benefited from the research done with UCLA, USC, and their associated programs. I was originally diagnosed at 17 at Kaiser (I believe the biggest HMO in the US). My doctor was Paul Chan, one of the most dedicated and humble doctors I've met. NPC was a specialty of his and he often joked with me about my belief that I didn't have any Chinese ancestors. He went to China to offer his services and was able to tell me about the disease more that any other doctor I've met. As a fellow Christian he believed in the power of prayer and acknowledged that his skills were a gift from God, the ultimate healer. When I was being treated I was probably on more prayer lists in churches that I will ever know. As I get older I am doing better at picking up these lists and praying for others - I know the value from first hand experience.

When I was first diagnosed I was an active cross country and track runner. I was in good shape. Except, I was taking a full college prep course load in high school and 2 college classes at the same time. One of these was Microbiology. After about 2 months of non-stop headaches I was in a lecture about the EB virus and the link to NPC. As my ENT's were going over what course of antibiotics, I asked one of the younger doctors if it might be a good idea to culture my infection and see if there was something more to what was going on. He asked if maybe they should do a biopsy - probably not a popular thing for what turned out to be an intern at an HMO to do. I mentioned NPC and the doctors laughed and said I wasn't Chinese.

The biopsy came back with NPC. I was officially diagnosed right before Thanksgiving (Nov, 1981) and had to wait until after the holiday weekend to start the radiation treatment. I went thru the regular protocol and had residual tumor. Therefore I had to get the maximum lifetime dose of radiation to my primary site, 8500 rads, and 5500 rad to my lymph nodes in my neck and behind my ears. It took time, but my taste came back. Watermelon was the first thing I could eat without water. Next came Jhicama
and then hot sauce with chips.

As you say, I changed my outlook on life. I completed my Microbiology class, but dropped the others and decided to complete my senior year in 1983. I didn't worry so much about the little stuff. However, the next year, I was back at it and was accepted to Stanford as a pre-med. In the second quarter of my first year at Stanford, I was at Lake Tahoe and couldn't breathe, I began coughing blood that night and went to see a pulmonary doctor the next Monday. He sent me back to LA to see my doctors in LA. The metastases in my mediastenium lymph nodes had pushed into my lungs and had collapsed the lower lobe of one of them. At the HMO, Kaiser, I was no longer a kid, so they sent me to the adult oncologist. I will sum it up by saying he shouldn't have been a doctor - an oncologist was the last thing he should have been. I researched the protocols he wanted to do and deduced that the appointments with the psychologists were meant to help me deal with dying. Not an option for me.

I was fortunate to have volunteered with a program at Childrens Hospital LA that held summer time camps for kids with cancer - Camp Good Times. Dr Stuart Siegel was the champion and we had hit it off pretty good. I asked him for his advice. He worked up a very aggressive protocol -- Cisplatinum,
Bleomycin, and Methatrexate. We battled with Kaiser who refused to pay for this treatment or let him be a doctor on my case. Again, I was very blessed that I was able to get coverage and go outside of Kaiser. You know the best part - It worked. I had my lymph nodes surgically removed after the
chemo and then more radiation to mop up any cells that might have survived. I still see Dr. Siegel every year and help with some fund raising at Childrens Hospital LA.

I'm now dealing with the long term effects of my treatments. I'll expand more later, but will give you a list and see what you've heard before, what is new, and what you might want more info on for your site:

1) Dental - I've been in a program at UCLA since 1981. I have dental stents and use fluoride to help keep my teeth. I used it every day for the first 5 years -- after that I backed off a bit and use it about once a week. I'm concerned about the long term effects of that much fluoride in my system. The dental protocol is to use it every day - My teeth are in decent shape and I've only had 2 root canals. I go in at the first sign of an infection.

2) Thyroid - I had to have it taken out due to benign tumors about 5 years ago. Not a big deal.

3) Headaches and throat pain - This is my current number one problem right now. Over the years this has been getting worse and worse. Regular acetaminophen, ibuprofen, and aspirin worked for the first 10 years. After that I started taking propoxphene with acetaminophen, and then propoxphene with ibuprofen. About a year ago I went to a pain specialist and have started on a program with nortriptyline (usually an antidepressant that can be taken at low dose for chronic pain) and oxycontin. I've also been seeing a biofeedback specialist for about 8 months and am getting better at controlling my feedback response to pain. This last year has been the best in the last five and I think I am getting to a stability point. I'm learning to deal with my feelings of guilt for using opiods to control the pain. I would like to use less, but I also don't want to hole up alone and avoid real life because of the pain. This is the challenge that I am dealing with right now the most.

4) Swallowing - Radiation to you esophagus can do some nasty things. I've had it close up in spasms. This was my last challenge. I was able to get past it my taking pantoprazole daily to eliminate acid reflux and by taking carisoprodol before I eat to relax my esophagus and prevent the spasms. I haven't had my esophagus close off for many months now and think this is a working solution.

5) Skin sensitivity - Not a big deal. Use SPF 30 and keep your shirt on and wear a hat.

6) Shaving - Last time I checked they were still recommend that radiation patients not shave and use an electric razor. Once you get past the first year or two I don't agree. When I used an electric razor I sneezed out and coughed out all kinds of cut facial hair that I had breathed in. Since I don't have as much saliva, I think that this is probably not a good thing. I prefer to shave it off and leave the hair in the soap.

7) Saliva - The biggie. Some of it comes back. I envied all 3 of my boys when they were toddler and drooled all over the place. I can't remember eating without a big glass of water (I prefer carbonated because it seems to be slippery and helps the food go down). I can't drink ice water or soda with ice during a meal as it causes my esophagus to spasm. Not a biggie - except getting waiters to bring the drinks without ice (a problem in the USA where every drink comes with loads of ice!).

8) Carotid artery plaques due to radiation. My carotid neck arteries have blockage. My heart has none yet.

9) Radiation to the pituitary - I was blessed with Dr. Chan who knew to shield it. I'm watching for signs and think that some of the reduced energy I now feel might be related -- but I'm also 38 and I have to accept the side effect of old age like everyone else.

The story of how I met Lisa, my wife, is another blessing for a later note.

I've probably forgotten some, so ask if there are specifics that are of interest.

I have never been one to complain or use my illness as an excuse for leading a challenging life. I'm not in the best of shape, but I can still keep up with my boys and wife. I've done well in my career and provide for my family. I am blessed with the knowledge that we are all terminal and will die someday. I am a Christian and know the grace that was given to me by Jesus Christ. My soul will live on and I will someday know what it is like to drool while eating good food and wake up in the morning with out a
headache and a bunch of crud in my mouth. Until then, I thank God every day for my life and the extra years that have been given to me to enjoy here on earth.

Hope this give you some insights into the long term. There are challenges, but we will live through them (or do our best trying). Two verses that I like are :

John 16:33 - "In this world you will have trouble, but take heart, I have overcome the world."

Phil 4:13 - "I can do all things through Christ who strengthens me."