#18370 08-02-2005 03:33 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | Greetings from S Florida. I have decided that if information can be found, it likely will be found here.
I was diagnosed with a squamous cell tumor in the left base of my tongue, the floor of the mouth and the digastric muscle last month. On Friday I will begin the journey towards being cancer free when I will have the necessary teeth extracted prior to the start of radiation and chemo.
Over the past four or five weeks I have learned a lot, but probably have no idea how much I do not know. I do know that the next few months are not going to be easy. I do look forward to receiving work that I am cancer free as my Christmas present.
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#18371 08-02-2005 04:17 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2005 Posts: 497 | Greeting Bill. I am loving your positive attitude. Everyday of your treatments you come and read your first post. Its a long road its a short road but we are all here for each other. Stop in and ask questions, whine, laugh, seek info and make a few new friends. We are all in this field together.
May God give you healing, Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#18372 08-02-2005 04:37 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | Okay, so after reading some of the other threads it appears I did a "Readers Digest" version above. Sorry about that, but I guess the anxiety took over.
I am 59 years old and have smoked for about 45 of those years. I own an insurance agency and I am the one and only employee, which just may present a problem as treatment progresses. I am married and have a real trooper for a wife.
Back in 2002 I was referred to an ENT doc because I was having pain in my throat, neck and left shoulder as well as a long running headache. He informed me that the throat and neck pain was related to a problem with my hyoid bone. In time the symptoms went away, but returned a few more times since, also to disappear.
In June of this year I gave in to a 2 plus month long headache, neck, shoulder and ear pain and got another appointment with him. In the mean time I had a semi-annual followup vist with my cardiologist, having had a TIA in September of 2003. I mentioned the neck problem to him, wondering if perhaps it might be associated with the 70% blockage in my left carotid. He told me there could be no association but ordered an MRI of my head and neck, just to rule out a tumor.
Surprise, surprise when on June 20th I was informed that there indeed was a tumor in my tongue. The biopsy on the 30th confirmed it was malignant. The following week the ENT doc recommended radiation and chemo, saying that surgery was much too risky given the site.
Initially I accepted that and made appointments with radiation and medical oncologists. I just became unsettled with the abrupt push off of surgery and decided a second opinion was needed. I went to the Moffett Cancer Center in Tampa a couple weeks ago and they too agreed that surgery should not be done, but only saved as an option should it return, not because it was too risky.
So here I am today, with extractions scheduled for Friday, followed by the radiation and chemo to begin hopefully on the 22nd. Radiation may be done twice daily, but no decision has been made as yet. Chemo will be with cisplatin and will be either three times a week with small doses or once a week with a mega dose. That too has yet to be decided.
Other than that, I don't know much and will be looking for advice and information in the other threads, re: treatments, side effects etc...
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#18373 08-02-2005 06:21 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hello Bill As you can see from my tag my hubby had a diagnoses somewhat similar to yours. You have along hard road ahead of you, as you say by Xmas you should be over the worst of it. Welcome Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#18374 08-02-2005 08:40 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Bill, welcome even if the reason you are here is not so plesant. The only thing I will suggest today is that you be sure the extractions are necessary. Many of us still have all of our teeth and this is important. If your teeth are in poor shape then perhaps the extractions are necessary. Just be sure to ask again if your teeth are otherwise in good shape.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#18375 08-02-2005 09:38 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | Barb, Marcia and Mark, thank you for the welcome. In the time I have spent here today reading I have harvested a wealth of new knowledge.
As for the teeth, if I had not revisited my regular dentist yesterday I would have lost four teeth instead of only three. I went to see him regarding possible implants and or bridge work to replace them so that I could still chew food. Previous bone loss and the radiation is going to rule out those possibilities. He called and talked with the oral surgeon and talked him out of one extraction. Unfortunately the others will have to be removed, but one "chewer" will be left intact.
I just now returned from the gastroenterologist's office and will be having a PEG put in on the 19th. I guess that next up should be a call to the medical oncologist to discuss whether or not to have a port put in.
On a brighter note, one of the massage therapists from next door to my office just popped in today and gave me a half hour massage. She told me that her boss told all of them to drop in on me whenever they felt like it, even if only for a few minutes. I think I am going to really appreciate that gesture of good will.
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#18376 08-02-2005 09:54 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2005 Posts: 497 | Well Bill I too amd 59 and I too was a 45 year smoker sorry to say. I also have a peptic ulcer and reflux and have used antacids for many years so they say it could be one cause or the other. Whatever the cause I have it and unfortunately the clock never runs back only forward. In Feb. before my diagnosis I got a viral infection and tossed the smokes, the ashtrays and even the lighters and quit CT with no patch or gum. I quietly went insane for around a week and things got better and better afterward as I kicked the addiction. Have you given them up yet? They say you have a better chance of the treatments being a success if you stop smoking before they begin. If you need help quitting I can recommend a wonderful site. www.stopsmokingcenter.net Join up and work the program and watch as your "car" travels the winding road until it hits the "free"way. By the time it gets there you will be smoke free. Its a great program and its free. I wish I lived in Florida so I could come to your office and get one of those free massages myself. May God be with you, Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#18377 08-02-2005 10:07 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Bill Don't worry about the PEG, a bit of discomfort, but worth it for the ability to feed when your mouth doesn't permit, I was nill by mouth after surgery for 3 weeks. You will be fine, stick with us... Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#18378 08-02-2005 02:51 PM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | Barb, no, I am still smoking. The last time I "quit", which was only a temporary stop actually, I went for seven months before starting again. I went CT from about 3.5 packs a day.
In my mind my treatment starts at 10:00 Friday morning when I go to have the teeth removed. When I exit my car and head to the oral surgeon's office I will likely have one in my mouth. It will be the last one. I have never in my life been a "quitter" and will not be through the ordeal that lies ahead of me, nor will I be with my smoking. When I extinguish that cigarette I will stop. I will stop for life, the rest of my life.
Helen.C, thank you for the encouragement. The gastroenterologist that will be doing the PEG did both an endoscopy and colonoscopy on me last year, both firsts for me, but not lasts. He explained the entire proceedure to me and I am very comfortable with it and him.
He does it a bit differently than "most" others. It is set up as an outpatient proceedure, but after it is done he has his patients admitted for 23 hours of observation. Doing so keeps his patients in the environment where if there is a problem it can be dealt with immediately. Also it assists in whatever pain management may be necessary. I kind of like that approach.
As for sticking with you all, rest assured that I will be like Crazy Glue. I am here, and will be for a long time to come. By the time member number 5,000 shows up I hope to be able to help that person through their journey towards being cancer free.
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#18379 08-02-2005 03:13 PM | Joined: Mar 2005 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2005 Posts: 35 | I quit smoking a month before being diagnosed and used the patches which did seem to help during the worst 2 weeks of withdrawls the stopped using them. Good luck to you and dont worry about the PEG it is a real lifesaver or at least it was for me, even with it i lost almost 40 lbs during and after treatment and after my apointment on AUg. 18th when i get the good news i am cancer free (just finished rad tx's at the end of may) I will get this tube taken out. I am now eating pretty well and have gained 5 lbs. My dentist recommended dentures so that made it hard for me to get used to eating again plus right now im in the middle of getting news ones that fit right so as of now i am eating without teeth. that first cheese burger i get when i get my teeth will be the best :-) . You have a long road ahead of you and were all here for you and to help in any way we can. | | |
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