I just found this site yesterday and can't stop reading all the posts and info. THANK YOU BRIAN...my hats off to you and the founders of this site. I don't know whether I want to cheer or cry! I have been all over the internet looking for a place such as this. I couldn't find anyone who had been thru the kind of stuff we have until now. I now have a much better understanding and outlook on my husbands condition and expectancy for the future.

My husband (48yrs old) was diagnosed last July with Stage IV SCC metastic to right cervical lymph nodes, primary unknown. He had 3 tumors, the largest was 6cm. He had a neck rescection and "exploratory" surgeries taking 18 biopsies from various sites. Still no primary found. They pulled all 28 teeth prior to treatment because they said the extensive radiation would damage his teeth and jaw bone for life. He goes to CCI in Huntsville, AL under the care of Dr. JH and NE. My husband underwent 12 weekly chemo treatments of taxol and carboplatin and 12 weeks of daily 30min radiation from his sinuses down to his upper chest, front & back. He was on a PEG tube 100% for 3 months due to the radiation. He tried ethyol to save the saliva glands but couldn't take the side affects. He spent 8 days in the hospital with nothing but IV's due to complications from all the treatment.

From the beginning, the picture painted for us was not very pretty. We were told without these treatments his expectancy was about 6 mo's. We were told that even with the above treatments, we only have one shot at a cure or remission. They repeatedly told us if these treatments do not work, there is nothing more that can be done. Until now, the statics we were given terified us. Thanks to you all, after reading several of these posts, I now have a different outlook and have learned why these "statics" really don't mean a thing.

Jimmy finished treatment Nov21 and is doing well except for the expected eating difficulties. He will have his first pet scan after treatment next week. We are hopeful and taking things one day and time.

Again - thanks Brian and all who post on OCF. I think I have found new friends!!

Vickie, no one human on this planet knows the days of our live or when to expect our death. We know for sure that death is inevitable. From the moment we enter this world and draw our first breath, we begin the death process.
Welcome to the club that nobody wants to join.
Darrell

Darrell
You probably just scared the stuff out of Vickie!

Vickie welcome to our forum.
As you can see my husband also had stage IV, he is doing absolutely terrific. We were also told the percentages were not good, but, here we are just about 3 years out!
It is going to take a while till Jimmy is feeling better and there are some rotten side effects to this treatment, but, we think they are worth it.
Nice to meet you.

Marica

I apapreciate the thanks, but the credit really goes to the many posters here that continue to come back and help opthers behind them in the process of understanding what is happening to them, and answering questions with knowledge drawn from their own experiences.

You can choose to approach all this with a desire to learn and fight or as in the previous post, you can resign yourself to things. If you have read any of my posts you know that I belive that infortmation is power, and that people should fight for every quality day that they can experience. What this board will hopefully help you do is find your path, understand the issues that come up, and make informed desisions, even if they are only what are the right questions to be asking.

If the doctors have thrown everything at the disease right form the get go, you have a good start. But there are always options even given less than positive statements by doctors who lack sensitivity or do not wish to express false hope. What I hope you get from the boards and the great people here, is a sense of a support system, and ideas for options as the need arises.

Don't give up that hopefulness that you mentioned, in spite of what are fatalistic comments from people or insensitive professionals.

Darrell,
If you want to believe in predestination, be my guest. But I am mightly tired of you telling people that they will 'only live if God has a purpose for them on this earth, else they will die.' If that is YOUR belief, so be it. Leave it off the board. While I understand you are undergoing a reoccurence now, it is not your purpose in life to dictate YOUR beliefs on this board. BACK OFF. You are about the most insensitive poster on this board.

Vickie,
I too was an unknown primary and am still around kicking 9+ years later. I takes a while but things do keep getting better. Keep us posted and ask any questions you need.

Take care,
Eileen

Hi Vickie,
As a stage 4B cancer survivor, I am sure my existence today after a tough battle 4 years ago can give you and your husband encouragement and support. The picture is never rosy once you or your family member is diagnosed with cancer and I hope your husband is in the hands of caring and sensible medical professionals who will not keep on scaring their patients.Without treatment, any patient even at a stage one would definitely die. Given the best and proper treatment, some patients survived and some didn't, regardless of the staging of the cancer. We need to fight hard to get control of our future, although sometimes there are things beyond our control. I have a strong respect for people with religious belief and faith in God but sometimes they have gone to an extreme that their words may have a negative impact on patients. When I was severely ill, a group of very fervent Christians approached me trying to convince me to believe in their God saying that this was the only way I could go through the battle. I am not a woman easily influenced and I made all my effort to go through all hardships.. life-threatening cancer and depression. Here I am, for over 4 years I have been in remission and life is back to normal. Occasionally, I still heard some Christians I know saying that my recovery was mainly due to their prayers. Feeling a bit annoyed but I don't want to argue because I respect their belief.I hope I have not offended any posters here when quoting my experience because it is never my intention to speak against anyone.
Sorry for sidetracking here but Vickie, do remember you and your husband are never alone fighting this battle. Most people here are very supportive and positive and are willing to stand by you.

Karen

Hello vickie and welcome to this very helpful site and club that we all find ourselves in, sometimes it is scary and dreadful, however most of the time it is uplifting, comforting, compassionate. The people that you will find here are truly the best people to answer questions and to calm your fears. I guess I have been lucky because all of my doctors (oncologist, radiologist and ent) all refused to discuss any statistics other than to say they are meaningless. I am only two months removed from radiation and chemo and one month removed from a radical neck dissection and my doctors all tell me I am way ahead of the curve in my recovery, had my peg tube removed thursday after 102 days, do I have any lingering side effects? You bet taste, saliva, swallowing, numbness I deal with them all, that being said I try to eat new stuff daily and push myself towards my once normal existence. I still do not have the stamina to be back in front of a class of teenagers but that will come soon enough. Vickie I do not know how valid my thoughts are but I am convinced, even at this early date, that my cancer IS NOT coming back, and I cannot afford to take energy away from my recovery by dwelling on what might be, all that I know is that today, as far as I know I am cancer free, nothing else matters. so my dear vickie hang in there and be positive for your john, if there is fear, which there always is, comfort is the flip side of that coin. hang in there my dear.
always lenny

Thanks to all. I when I found this website and started reading present and past post, I new had found the right place. I only wished I had found it earlier. It would have been nice to talk to all of you while we were undergoing treatment and be able to draw from your experiences. We have tons of support around us but no one that has been thru this kind of stuff. I don't feel so alone now. My husband somewhat withdraws and doesn't want to discuss the situation very mcuh. Kind of like the "Men from Mars" thing going on. He wants to mull things over in his cave. He says he doesn't want to think about it and he doesn't want talk about it. He acts as if he doesn't deal with it and it will go away. I can't do that. I have to talk about it so it and get my fears and feeling out. I worry about talking too much to all my friends and coworkers. I don't want to depress them or make them get tired of hearing it. I appreciate having a place that I can vent, ask questions, and learn. I believe what Brian has said... knowlege is power. I understand that no one has complete control over life and death, but it doesn't mean I want stand in the road and wait on that Mac truck to hit me either! I want to make the best decisions possible.

Lenny, you sound much like Jimmy. He is pushing himself so hard. He wants to feel "normal" again. But, his energy level and strength just isn't there yet but he's hanging tough. Thanks

Jimmy goes later this week another pet scan. I just have a gut feeling he is going to be ok! Thanks again to ALL of you!