#19729 02-18-2006 06:52 AM | Joined: Feb 2006 Posts: 45 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Feb 2006 Posts: 45 | I'm a newbie here and here is my story to date.
1. Been diagnosed (and confirmed) that I have Squamous Cell Carcinoma on the base of the tongue.
2. Have swelling on left side of throat up by the ear and quessing the cancer is there also
3. Looking like I'm going to have to go thru the following for sure - radiology - chemotherapy - surgery (dissection on neck)
3. Have had the following pre-tests - Catscans of chest and head (both were good according to doctors) - Petscan (ditto) - Radiology 'planning' session
4. Scheduled next week for - Putting a 'port' by shoulder for vein access? - Colonoscopy (guess to be sure of that area?) - Dentist (will probably lose what teeth I have left on bottom) - Radiogoly 'confirmation' session
WHEW.......that's a lot of doctors in just about 3 weeks of action. Having started ANY of acutal treatments YET.
I just wanted to introduce myself and explain where I'm starting out. My situation is I'm single and live alone and only have two living family members (two brothers that live 500 and 800 miles away). So, I'm kind of going to have to make a go of this by myself. I'm hoping I can make some good friends thru here that have gone thru this (or in whatever stage) to help me get thru it and answer the obvious questions I'm sure to have along the way.
I'll end this by saying I've always been a VERY positive person and hope to keep the eternal opptimisum I've always had. | | |
#19730 02-18-2006 07:49 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi garyock, and welcome to the forum. While you are still healthy I would develop a network of people who can can help you. Call the local chapter of the American Cancer Society and they help with rides to and from treatment and so forth. Are you with any neighbors or churches - maybe they can help with shopping and things like that. Many people out there consider it a gift to serve others - allow them. The Fed had a program called IHSS (in-home supportive services), usually administered by the county welfare people where they pay an hourly rate for certain caregiving tasks if you have to hire someone.
Have you had all of the blood chemistry, creatinine clearance, baseline TSH and hearing tests yet? I would get a baseline MRI and chest x-ray as well. You didn't mention a biopsy - did you have one?
Keep that positive attitude - that will carry you a long way. We're here for the bumps or for you you to vent,
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#19731 02-18-2006 10:10 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Welcome friend: It is tough row to hoe. But hang in there, bond with your nurses and enjoy the ride. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#19732 02-18-2006 10:52 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Nov 2002 Posts: 274 | Enjoy the ride? That is the most screwed up thing I have ever read here. | | |
#19733 02-18-2006 12:10 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Welcome Garyock, I wish I lived near you and could be of some help, sorry you have to go through all of this but I like your positive attitude! And it is certainly good news about your PETscan and CATscan. Keep us posted! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#19734 02-18-2006 12:57 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Garyock, please heed Gary's advice and get a support system in place. Now is not the time to be a loner![or superman]BEst wishes to you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#19735 02-18-2006 02:25 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | Welcome to the forum. This is one hell of a way to make new friends, but you will find the most informative and supportive group you've ever encountered. If I read the map right, we're only about 15 miles apart. I'll send you a private message on how to get hold of me. In the mean time, take some time to look over this website. It is an absolute goldmine of information which can help you formulate questions you'll want to be asking your doctors, and it will also answer a lot of the questions which must be racing through your head right now.
Keep us up on how you're doing.
Good Health,
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | |
#19736 02-18-2006 03:15 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Gary, welcome. It is quite normal to feel like a ping pong ball in the weeks before treatment actually begins, at which time you will settle into a routine. I got a kick out of your thread title, as I referred to my treatment as the Great Adventure. Yes, some parts of it were significantly less than fun, but I met some terrific pepople along the way with whom I have become good friends. I, too, am very optimistic by nature and I know that made a whale of a difference when things got tough. If you can keep the finish line in clear sight mentally, you will do okay. Feel free to ask any question that comes to mind. Those of us who have finished treatment come back here to repay the invaluable info we received by helping those coming after us. I am glad you found the OCF. Joanna | | |
#19737 02-18-2006 06:47 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 155 | Gary This is not something that is cool to go totally alone. Let us know how it is and there is lots of support here but if you can let us know how the treatment plan is set up and maybe we help target when you will really need somebody..If I broke it down to basics what Bob needed was some someone to provide food in a form he could consume or to bring him stuff when he couldn't muster the energy to get up. Someone to be on point when he was in pain to help tell the story to the Doc's and someone to see that the general environment was healthy for human habitation You may need the social workers to help you find what we call a "may I help you person" a caregiver that can come in at least a few times a week to see that you are gettin bye...
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04 Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#19738 02-18-2006 07:29 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | Gary, Welcome to the forum. I must echo what has been said above about getting a support system in place right away. With luck, your treatment will not be too disabling, but you should plan for the worst. You may be UNABLE to drive home from treatment, or prepare food. This is not about being independent, or tough. This is a very real problem that many of us had to deal with. Your positive attitude and personal strength will be tested, but you can do it. Don't wait to look for help. Set it up now with lots of back-ups. It will serve you well. There are lots of people on this forum who will talk you through the details. Take full advantage. Best of luck to you. Please stay in touch, Tom
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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