Hi,

My name is Rob. I am a 41yo wm with SCC of the right tonsil with met to one node in my neck. I look forward to talking and learning from all of you. I am so glad that a group like this is avalible. It really helps.

Here is my story:

On 9/2/03 (My ten year wedding anniversary) I was diagnosed with SCC right tonsil primary 1.6cm, 1 lymph node met 3.0cm. Tonsil and lymph node removed surgically that day. Thats how I was diagnosed.

Here is what I went through:

Induction Chemo
8 weeks (once a week on Thursdays) utilizing Taxol (Every Thursday) and Cisplatin (first week and last week only) starting 10/10/03.

Chemo/Radiation starting 12/14/03
8 weeks (4 on 4 off)with 5FU (24 hour a day IV drip Sun-Fri, on weeks only), Hydroxyurea (1 pill a day, on weeks only), Iressa (1 pill every day for the next 2 years), IMRT (twice daily Mon-Fri for 4 on weeks).

The hair on my head did not fall off (even though I shaved my head anticipating it's demise). Radiation burns on my neck and one sore on my tounge was as bad as it got. I finished my treatment 2/13/04 and feel GREAT! I am back at work full time and trying to adjust to the dry mouth and taste changes but thats nothing I am alive thats what matters.

I was treated at University Of Chicago by the finest doctors and medical staff in the world, really. As the father of 4 and number 5 on the way (5/23), I felt I owned it to myself and my family to research and receive the best available treatment.
I looked at all the leading medical facilities for HNC. I was as surprised as anyone to find that one of the leaders in HNC was right hear in Chicago. I was willing to travel to Madrid if necessary. Anyway, I had an easy go of it but understand I am in the minority. I would like to extend my help in any way I can to this org.
If I can add one thing it is this.

Most of the information on the web is too old to be pertinent due to changes in therapy protocols.
The best advice I can give a newly diagnosed patient is stay off the internet unless you are willing to weed throught the reams of old outdated survial numbers, treatment options, and statistics. Try to look at studies, papers, etc that have been completed within the last 2 years or so. We are just starting to see better stats due to these new treatment protocols.

Also, one needs to remember that there is a mean and a median to all statistical analysis. The stats that are published are based on all people in a particular study, protocol etc. That means people that are advanced in age 75+, people that continue to smoke, drink, people that get hit by a bus or have a heart attack etc. You have to be the 100%. Your prognosis if different than anyone in any study. The fact is we are seeing better results medically than we ever have in the past. I would love to see more long term survivors out here but most peolple are in there 60's when they contract HNC. The probibility of them living another ten years is rather low to begin with.

I look forward to helping in any way I can.

Thanks,

Robert Hamilton

Hi, Bob, welcome aboard, you sound alot like most of us.....we wan to help each other, so it sounds as though you`ll fit right in with the gang......Hugs, Dee

Hi Robert,

Welcome to the club!!!! You seem to have alot of knowledge about Head & Neck cancer. Knowledge empowers us. I never heard of this cancer before I got it. I think the major goal of this foundation is to educate as many people as we can about this type of cancer. If you read the stat's most of us are a stage 3 or 4 at DX. "WHY"
Because the majority of people aren't aware of the risk factors and we are not aware of what to look for and be concerned about. Anything not healed in two weeks should be looked at in great depth. Better to error on the safe side and catch in at stage 1 or 2. Early detection is the KEY.!!!!!

With the efforts of this foundation I hope to change that in any small way I can. Everyone knows about Breast, Prostate and lung cancer. Well
guess what "We are here to"

I'd sure be interested in reading any studies that reflect an overall increase in survival rates you mention. Most of the ones I've seen state the overall survival rates for Head & Neck cancer hasn't changed in 20 years or more.

Also the treatment advances, The standard practice is to cut & radiate. It is a diffucult location to have cancer. To many quality of life issues with the type's of surgery, Chemo and radiation.

It will take time for this to happen but I'm SURE it will. There are to many talanted and supportive members of this forum for it not to happen. Welcome again, Dan Bogan

Robert,
Welcome.I cannot help but believe that our survival rates will go up because so many of us, like you, have gotten oral cancer at young ages. One would think that a 40 or 50 year old is much stronger to start than older folks. I for one, remain optimistic about the future. I look forward to hearing more about your progress.

Danny G.

Robert,

Welcome. Any studies with good stats would be nice to see. I am a numbers guy and if I have the opportunity I enjoy learning more about treatment and results for this dreaded disease. My hair never came completely out but I looked like a baby bird when I peered at the mirror walking by. My wife called me Jar Jar Binks. I think it was a compliment but I'm not sure!

Glad you found us and glad to have you.

Ed

Hi Robert and welcome!
I was diagnosed at age 61 and intend to survive 20 years or so........just to
blow those statistics all to hell and back!

Judy U

Judy, you go, girl! Just look over your shoulder, I'm right behind you.

Ed

Welcome Robert!!!

I am a 40 year old female diagnosed with tongue cancer at 38 and have had a couple of reoccurances. My team told me if you get this kind of cancer with no risk factors it tends to be more aggressive and hard to treat. I have found that to be true first hand. Here's praying that you'll beat those statistics. We're here to help.

Lynn

Lynn, would you like to explain further what you mean by "if you get this kind of cancer with no risk factors.... hard to treat."? I feel rather puzzled because I always have the impression that since I don't smoke or drink, with no particular risk factors to oral cancer, the chance of being cured should be higher than those with risk factors. In fact, my oncologist has never mentioned the correlation between risk factors and cancer aggressiveness and recurrence. By the way, I often heard people here talk about the cancer being aggressive. Does it mean the cancerous cells are growing very fast to the extent that the treatment can be difficult? Lynn, thanks for your further input.

Karen.

Karen, I don`t understand the corelation between risk factors and aggressiveness, unless the smoking and drinking continue. Frank`s cancer was aggressive, he had a clean bill of health in April and a one and half centimeter tumor in his sinus in July, that`s what makes it so scary.......Hugs, Dee

To all members 60 and older. I didnt mean to offend anyone with my age statment. Of course right after I hit the send button I realized I could be offending some people. Sorry.

Also, I have heard arguments for both cases. Some say if you have risk factors like smoking wich I have, you are on the wrong side of the curve (i.e. field cancerization or condemned mucosa).
Still others claim if you didnt have these risk factors you are on the wrong side of the curve.

It just goes to show everyone is differnet. What applies for one does not apply to another.

That in my opinion is one of the hardest parts of this whole deal. You have no real frame of reference. It's like standing in the middle of the street and waiting for a bus to come by and take you out. He might hit you, he might not. You just never know and cant use others as a point of reference. Sucks, doesnt it?

Have a good one,
Robert
-------------------------------------------------
SCC Right Tonsil, 1 Node MET, T1,N1A,M0 treatment finished 2/13/04.

Don't worry Robert If you REALLY offend anyone they will let you know! I believe radiation makes the hide thicker. Welcome to our standing in the street party!

Hi Robert,
Welcome and I hope this board helps you as much as it helped me. I was diagnosed on April 1st 2003, my grandaughters 5th birthday. Stage IV in my jaw, removed my jaw bone and replaced it with a bone from my leg. One node involved and I did radiation to both sides. 41 at time of diagnosis and I'm 42 now. I am 10 months out from treatment and one year from surgery and so far so good. I've had some scares over the past year but the fear truly does get smaller. Never goes away but learns it's place.
A baby on the way, how exciting! I have 7 children and would have more if it was meant to be. My oldest daughter, the mother of my two grandaughters, is expecting again in Oct. I just found out and am very excited about having a baby around. How old are your children?
Use this board to help you, it will become a comfort to you and a source of knowledge that will make you feel more in control. Cancer has a way of making us feel out of control, takes away that safety net we never even knew we had! But, it's in our nature to adapt and you will find yourself doing just that.
I would still be floundering without the people on this board. I talk about them to my family as if they are friends that live down the street. My daughter, Amy, asked me the other day if Mark was back from vacation, lol.
I wonder if Brian truly realizes what he has created with this board.
Take care Robert,
Love Minnie

Karen,

I sent you a private message, but I'll also respond to your's and Dee's concerns about my statement. I guess I should personalize this a bit more rather than generalize. My cancer isn't behaving despite all treatment. When I say agressive, I mean growly rapidly and resistant to treatment. I wasn't necessarily trying to correlate the two (risk factors and reoccurance), I was repeating what my team at MD Anderson told me about my cancer.

I think in general, head and neck cancer is difficult to treat because it's usually diagnosed in later stages regardless of risk factor.

I hope I didn't mislead, worry, or concern you.

Lynn
Lynn

Hi Rob,

Welcome. My mom was treated at U of C. Pretty much the same regimen, with the exception of Cisplatin -- she had Carboplatin. You're going to find this forum to be a great place. I got lucky and found it last Summer. I can't tell you how helpful everyone has been. Glad to hear you are doing well. Take care.

All,

Thanks for you kind responses. I look forward to making friends with all of you.

My kids are 9,7,5,4, and 0 (due 5/23) I too would have 4 or five more if I was ten years younger (oh theres the age thing again).
My wife and I love kids.

Didder, how is your mom doing? And, dont you just love the staff at U of C! Since your mom is on the Iressa trial, she is dealing with DR.Ezra Cohen. A wonderful man and an excellent doctor. He informed me the last time I was in, that of the 50 people in the study, most of which have been in longer than I, they have only seen 1 reaccurance. Now that's exciting.

I would suggest that anyone that has HNC should look into Iressa. a U Of C study recently concluded using Iressa for reaccurance with mixed results. It seems to be working on "maintenance" but not as well on reaccurance.

Thanks again,
-rh

Hi Rob,

My mom is doing okay. The big plus is that her scans are clean! I am extremely grateful to everyone at the U of C. The issues we are currently dealing with are pretty bad depression and getting her to eat. It's a tough road, but she's weathering the storm. My mom is in her 70s and, like everyone, went through a tough regimen -- but she got through it. That's the encouraging thing for me and anyone else who has faced or faces oral cancer. Now we are getting her through the after treatment hurdles, but each day is one day closer to recovery -- and that's a good, good thing.

Didier,

Please let me know if there is anything I can do to help. I bounced back pretty fast. I guess I was lucky.
I talk with people I went through treament with me who are still having a hard go of it.
I remember the depression though, very well. For a couple of weeks after the treatment I would cry at the drop of a hat. I am a 6.0 200lbs 41yo male that barley cried at my moms funeral. But after the treatment my kids would say something cute to me as kids will do and I would go in the other room so they couldnt see me and have a meltdown. I am glad it didnt last too long. Zoloft helped me out a lot. I am off it now but it really worked well to ease the depression.

Anyway. I hope she can beat it. I am sure time will help.

Go bless.
Robert

Robert,

I am (was) a 200 (165 now) lb 48 year old and after the year with my terminally ill mother, I cry when I watch Montel Williams. I believe one of the roughest days of my life was sitting down with my boys (13 and 15 now) and telling them about the cancer. All through my treatment I didn't care how bad I felt, I went to open house at their schools, I took them and picked them up at school every chance I could and I made it to football, band, etc. I even worked directing traffic with my youngest for the Christmas Parade and Methodist Men's Pancake feed. I'm glad they didn't notice the tears, as you describe, from time to time when I sometimes felt this could be the last Christmas, awards banquet, etc. I just blamed it on the Salagen or something in my eye, even though I'm sure they really knew. I will never be able to work the 70-80 hour weeks away from my family that I used to.

Thanks for reminding me how important our families really are to us.

Ed

Ed and Rob,
I slept alot during my radiation but mine was during the summer so the kids were out of school. I will always feel like that was a blessing to us. I could sleep a good amount of time but still be up and about to keep the house reasonably normal. I remember Open House, during the summer, for my 10 and 11 year old. I had the "lobster look" going on, half my face burnt bright red. My face and neck were still quite swollen from my surgery and I still had a hefty limp from the removal of the bone from my leg. I was quite a sight! But, I put on my "mom" outfit (i spend 99% of my time in sweats but have one skirt!)and off we went to open house. This was a new school for us and the looks I got were pretty overwhelming.................to everyone except my girls. They didn't notice and didn't give a hoot. I was mom, no matter what I looked like at the time. My 10 year old, Samantha, was walking with me last week through the grocery store and I noticed her looking at my neck alot. She finally smiled at me and said that my neck "doesn't look mad anymore".
As I've said before, my fear has always been about my children. If this cancer takes me I will have the easy job, to die and go to God. My children and my husband will be the ones left to deal with it all...........without me. That is the thought that wakes me up at night sometimes to a gut wrenching fear. It's that thought that has made me assist my husband in taking on more of the "emotional" side of parenting. If I go, I will make damn sure that my family is taken care of before I'm called home. My husband is learning how to be a pretty awesome mother! Just a safety precaution.............life is a dangerous career, lol.
Live everyone.............hug the kids..............get silly with the spouse..........and cry when you need to.

Robr: We have similar situations, so thought I'd jot you a short note. I had a stage IV tumor in my #2 Lymph node (3.5cm)which we found out later had migrated from my right tonsil. The tonsilectomy on 11/19/03 was the telling blow as they found a 2.0 cm tumor there after removal. Interestingly enough, the ENT didn't find it even after removal. Anyhow, had 37 rad treatments on lymphnode and neck, 3 cisplatin treatments during the rad and just had my modified radical neck dissection Tuesday, 5/4/4.I sounds like you came through OK which is a good thing. Whatever happens, we get through it and on to a better day. That is the primary message on this board. Welcome and keep talking with us. Rgds, Kirk Georgia

Hey Robert. Too many things to respond to here. So I'll respond your original post. I've done alot of research on the Internet and elsewhere as well. Probably motivated by the same thing: fear of recurrence. You're right, most of the data on the Internet is very out dated in addition to being pretty dismal. Since I'm part of a post-treatment chemo-prevention study, I had a chance to look at some of the previous study data (none more than four years old) which supported the study in which I am participating. The stats in these studies were only marginally better, but the size of the sample groups were rather small. I would certainly be intested in seeing data you might have come across that paints a happier picture.

Since I was ranomized into the control group for my study, I don't get any of the meds. As far as I know, Acutane is the only thing that looks promising as a preventative agent. Unfortunately, Acutane is not approved for perscription except for acne. With all this in mind, I put myself on a supplemental regimine -- which I would be happy to share with anyone who's interested (but we'll need to start a new thread).

Anyway.....welcome aboard.

-Brett

Brett,
I'm very interested in what you know about Acutane as far as chemoprevention. If it is still there, I started a thread on this when my husband first finished treatment about a year ago. I actually brought the subject up to our radiation oncologist (based on some internet research I had been doing) and he gave me an article to read from one of his journals that make it sound like the isotretinoin (sp?) benefit was pretty iffy. I'd love to hear more. Though, as my husband is now almost 14 months post treatment, it may no longer be an option for him.

Thanks,
Anita

Brett,

I would be interested in any data or information on Accutane. I would love to hear about your maintenance program.
I had created a post on this site with links to several web sites and a current report by
Dr. Everett Vokes. It is in the introduce yourself section under "Studies For Head And Neck Cancer" Here is the link to the vokes paper. http://theoncologist.alphamedpress.org/cgi/reprint/8/4/350.pdf

I am currently on a phase II clinical trail utilizing a drug called Iressa. You may have heard of it. It is a EGFR drug. It has been proven to reduce and in some case eliminate tumors in non small cell lung cancer patients. It is FDA approved for lung cancer. It's all over the net. Check it out.

I spoke with my doctor last week and he informed me that he (they) are very hopeful this drug will kill the "fuel" that makes SCC cancer return.
Of the 50 people in the study (most of whom have been in it a lot longer than myself, some just about a year) they have only seen one reaccurance. These are execpional numbers according to him. It is not a randomized trail. All patients are getting the same drug, same amount. This could be, I stress could be a possible solution for some people. I hope it's me.


Talk to you soon,
Robert

My daughter Amy, who is now 21, had problems with Cystic Acne on her back when she was 15 years old. The dermatologist put her on a course of Acutanne. She had her blood drawn steadily and they monitored her closely. The severe depression she went into from the drug was horrible. I know they are doing studies on the depression caused by Acutanne, just wanted to share that information.

Please see my post under Adjunctive Therapy for the info I have regarding Acutane. I'll post more later regarding supplements.

-Brett