I'm sorry i didn't give my diagosis on my last input. I have Nasopharyngeal and started my first week of treatments.I'm having chemotherapy and radiation at the same time. This will go on for 10 weeks, one week on one week off. I've been though my first week.I feel great so far, but i know the worst is to come. I just wondering what to expect. I keep thinking the worst,but hope for the best.
Thanks Scott

Scott,

Hello, my husband also has Nasopharyngeal Cancer that was diagnosed in October 2001. Boy can we tell you a book full of stuff. Do you mind telling me how ald are you? My husband was 33. He is a white male which is very rare for him to have this. It is common in Asian decendants. After the biopsy the had a port and peg tube put in. Do you have that? He defintely needed these two things. He was very sick from the chemo and was put in the hospital both times. They gave him a chemo pack that was plugged into his port for 10 days at a time twice. The radiation burned him very badley enough to that it closed his throat completely for 18 months. Has your cancer spread to the lymph nodes? He sat at home and watched Emeril on Food Network and cooked for me and our kids even though he couldn't eat. Then he finally had to go to another surgeon in Nashville, TN who opened his throat up. He still gets it opened periodically. He has dry mouth and gluey substance from the saliva glands being dried up from radiation. He constantly carries around a water bottle. The cancer did come back at the two year mark. It was right above the line where they stopped the radiation. They said a cancer cell was laying dormant for two years and started to grown. He found this out because he developed double vision and he is now in the clivis bone near the brain stem. He then did a CPK Radiosurgery. Then it came back and he is now on his 3rd round of chemo and radiation. Please write to me if you need any advice. We have been down a rough road but he has been a big trooper through this. I wish you the best Scott.

Paula

Paula is right that Nasopharyngeal cancer is common among Asians, particularly along Southern China. There are many new cases every year in the hospital where I was treated. To ease the tension of Scott, this type of cancer is highly treatable. In Hong Kong, the survival rate of such cancer at an early stage is over 90%. For more advanced stage, surgery is not usually recommended but of course side effects from radiation can be serious and may affect hearing. Any way I am not an expert but have come across many more nasopharyngeal cacner patients than tonsil cancer ones in my place.

Karen.

Scott:
Just sit back, enjoy the ride, and let God handle the details.

This is going to start a ruckus, and I hesitated before posting it. I disagree with Darrell's posting and concept.

Don't just sit back and let things happen to you, trust in your doctors or not. Learn everything that you can, informed people make the best decisions. That means you are not just along for the ride when someone else makes a decision, you are part of the decision making process. You can't be if you are not involved

Amen, Brian.

In another topic, Darrell encouraged a young man to continue chewing tobacco, because he knows people who used tobacco for decades and didn't die. Now, he wants Scott to sit back and "enjoy the ride." Well. I took the ride and I can't remember a lot of enjoyment along the way. Thank goodness the Infopop software includes an "ignore" list.

Ken

One of the drawbacks to a public forum is that anyone gets to say what they want, and there is never a lack of opinions. Luckily on this forum most of them are well founded and come from first hand experience, the kind that really stays with you. Even when we get into it with each other, (and as most of you can remember I am usually the one that gets all the arrows in my back), it is in the spirit of getting the best information out possible. The disagreements pass, but are allowed to stand if no one is getting hurt by the actual information itself in the heated debate. One of the good things about being the controller of the forum, is that I own the delete button. Unfortunately one of my daily chores is to look at the postings that are put on over night (I only have time for the blatant ones) and delete the charlatans trying to get people to go to Mexico for treatment, take some herbal cure all etc. etc., all in the name of preying on those who have little hope. But the button works just as well in lesser instances as well if you look around. If anyone ever feels there is a post on this board that is going to potentially mislead someone or worse, hurt someone

Ken,

Don't take me for a peacemaker here, It is not my nature. I checked the tobacco thread and Darrell was not involved. This is a new thread and although I, like Brian, don't care for the advice, I don't think Darrell intended for Scott to chew tobacco while he enjoyed the ride. I think he was trying to calm Scott's fears.

Glenn

Glenn,

Darrell's post has been removed from the "dipping snuff" thread. My reaction was angry, but I don't have a delete button. Brian does, and I think he used it appropriately. Maybe Darrell was having a bad day. Maybe I was.

Bottom line, I hope Scott picks up the sword and fights the beast every step of the way. Taking an active role in the process helps conquer the fear.

Ken

Ken,

No argument here. I guess I just could not fathom anyone writing anything down-playing tobacco use here, and the post was removed before I posted.

Glenn

Being a Christian for quite some I too have to agree with Brian. We have to do ALL that we can do first before we ask God to do what He can do.
And that covers a lot of bases - stopping the addictive behaviour (if that was involved), seeking the best doctors and institutions, getting educated and being a self advocate for the best treatment choices.

I prayed a lot and still do but that didn't mean not to go the distance to find every available weapon in the fight. God works through people and that includes doctors and institutions.

I am not religious but has no offence against any religion. I agree that Christians are very supportive and when I was in the darkest part of the tunnel, my Christian friends prayed a lot for me and when I started to recover, they claimed that I could be cured because of their constant prayers. I wonder if I didn't make any effort and just sat back and waited for God's help, would the outcome be the same? Would I still be alive if I weren't proactive enough in grasping the essential weapons to fight the battle? Of course many patients who were fervent in their religion and had a courageous fighting spirit still lost their battle. I can only say that since we are human, there are many things beyond our power and control to manage.


Karen.

The posting regarding there is no smoking gun related to spit tobacco was deleted by me, and that is why you will not find it in that thread any longer. The information was just completely incorrect. There is a direct link between oral cancer and spit tobacco and just because this posters relatives were able to live to ripe old ages and still use tobacco, doesn't mean that that applies to everyone. We all know that different genetic make ups make each one of us susceptible or not to different diseases, be they cancer, heart, or others. George Burns smoked cigars into his 80's (quit for the last 15 years of his life and never got cancer. ) But he was an anomaly not the normal person in the tobacco experience. I can't spend my days arguing with a particular poster about the information or some superficial point that thousands of peer reviewed published articles corroborate. So at times it is just easier to remove the incorrect information. Occasionally I edit a post and that leaves behind an included trail which states that OCF edited the post for content. But there was nothing in the post to salvage, it was total bunk. Sorry to be so blunt, but a spade is a spade. If you don't have the right information from a reliable source, you can only speak from your personal experience and that may be different than others experiences. That is ok to post, but to blatantly say there is no connection (

Brian,

This is not a hijack, I'm looking a few posts up from yours. This seems as good a place as any to add my thoughts on the religion issue as it relates to the board.

All,

Oh boy, here I go into the abyss. I'm going to jump in with my thoughts on the religious overtone that seems to have overtaken the site. I accept peoples spirituality for what it is. I was raised as, and continue to be, a christian. I am not deeply religious and, I'll admit, praying is usually an act of desperation on my part. I understand the comfort people derive from prayer and fully appreciate that countless people include me in theirs. I just think the place, at first glance, is starting to appear a bit Christian based. We are not talking religious, we are talking strictly Christian. I know I am not the only one that feels this way and I have exchanged emails on this matter with several members. The old standard was one of common sense. The tone of the initial post would dictate the response. Brian probably got tired of writing that. Anyway, this is not the only cancer board I am involved with but it is the one I hold closest to my heart. I have been here a long time (thank God) and many of you are like family to me. Initially I was drawn to this site by the seemingly endless resources. What a wealth of information and knowledge! I stay to offer my insights and, ass I said, we are a family. I worry that we occasionally drift too far from the reasons most of us first came here, and that the Christian spin could inadvertently send I newcomer away. Religion has a place here, but it should not permeate every post. Just a thought.

On a lighter note, I am into my 3rd of 6 weeks of radiation for NSCLC and doing great. Tomorrow I go to Yale for my 2 year 4 month check-up.

Glenn

Glenn - good luck on your check up, they always make me tense and nervous before each one, and try as I may, I never can seem to control that. The nature of survivorship I suppose.

As to the religion issue I tend to agree with you and I do not wear my religious beliefs on my sleeve. To me religion is a private matter, and my spirituality is not something that I share with others openly. The general rule about religion on the boards has been stated when you sign up: http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/agree_review.html

In it nutshell it says: Read the original post. If that person expressed something like pray for me etc., then a reply that also includes reference to prayer is more than appropriate. If that first poster does not make a reference to religion, the following posts should refrain from it as well. It's a simple thing that will keep the board balanced and not exclude any ideas. Strong religious beliefs have helped many a person through difficult times, and cancer certainly qualifies as one. But as we post answers and inspiration to others here, we must always remember that OUR religion may not be THEIR religion, or they may not be religious at all. Clearly, there are no absolutes here. The rule of thumb is not to make assumptions about other's belief systems, and offer the most valuable thing that you have

"I stay to offer my insights and, ass I said, we are a family."

Typo or Devine providence? You decide.

Seriously folks, I have to agree with Glenn's observation here. I am speaking from a Christian upbringing and as an active member of my church. Faith is and will be an important part of many people dealing with a potentially fatal disease. That does not mean, in my opinion, that we should waive our particular faith in front of others. It is outside the purpose of this support forum to attempt to influence anyone

I completely agree (especially Glenn {my alter ego ha ha}) with all of you. Sometimes the religious element does get a little over the top here and like Mark, I too am active in my church and am involved in several different ministries. I think that Brian's approach to it is very fair and balanced. We do need to approach this in a manner that reaches the largest common denominator. AA has been successful at this for over 60 years now. Religion can really put some people off -some, understandably, even blame God for this. We all need to be sensitive to this.

We all owe Scott an apology for hijacking his thread.