#16277 08-30-2004 04:34 AM | Joined: Jul 2004 Posts: 12 Member | OP Member Joined: Jul 2004 Posts: 12 | Hi all. My name is Terry a 61 year old male recently diagnosed with SQC at the base of my tongue. It started two months ago with SQC on my lowel lip that was successfully removed. I am scheduled to begin radiation treatments for 7 weeks beginning 7 September with Chemo on days 1, 22 and 45. I am not sure about the feeding tube, but thought I would try it without it first. Any thoughts.
I am not sure how this started, but I have been taking weekly injections of a product called Enbrel for my rheumetiod arthritis. Enbrel is known to weaken the imune system, and according to documents I have read from the American Cancer Society a weaked immune system has been known to allow SQC to occur. I therefore suspect it may have contributed, but have no proof. Has anyone else run across this.
It is great to know a support group like this one exists. Thanks much for your comments.
Terry
Terry
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#16278 08-30-2004 05:49 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Terry,
Welcome to the OCF site! I'm sorry you've had to find us, but there's a great group of people here to give you support and to share experiences with you.
I was one of those who didn't have a tube during radiation, but there are plenty of others here who found the tube to be a necessity. It's extremely important to get good nutrition throughout your treatment, and if you find you need a tube to accomplish that, then go for it.
What stage is your cancer? Did they remove any lymph nodes? Are you being treated at a major cancer center? This kind of information will give us a better sense of your situation and help you get some responses from others who have had similar kinds of cancer.
Please keep us updated as your treatment goes along.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#16279 08-30-2004 06:22 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Terry..you are going thru what everyone else here has , trying to figure out Why Me? Concentrate just now on what you need to do to fight this hellish disease. Try to bulk up on your calories , you need to pack on some pounds. The feeding tube was a blessing for my husband, he would never have made it thru without it. But, lots of our members here managed . Spend some time looking thru the old posts on the site ,there are not many problems that someone here has not faced. Keep in touch. Take care. Marica
Caregiver to husband Pete. SCC stage IV diagnosed 4/03 chemo /radiation, no surgery. Treatment ended 8/03.. doing great.
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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#16280 08-30-2004 08:08 AM | Joined: Jul 2004 Posts: 12 Member | OP Member Joined: Jul 2004 Posts: 12 | Thanks for your comments and concern. I am at a stage 3 or 4 as they are not yet sure if has entered my lymph nodes. Pet scans are showing nothing in the lymph nodes yet. I am being treated at a local hospital cancer center here in Green Bay Wisconsin where I live. I had the option of having the treatment done at Mayo Clinic in Rochester MN where I went for a second opinion, but have decided to have the treatment done locally so I can be home with the support of me family. Terry
Terry
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#16281 08-30-2004 10:43 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Terry, Welcome to the site. Like all of us, we're sorry you had to find us, but we hope we can be of some help.
I recommend the feeding tube, also known as a peg, to everyone going through this. It is a life saver in my opinion and should be installed before treatment as a matter of course. Some here on the site have made it through without, but I think it had to be more difficult. I lost 50 pounds with the tube, 25% of my body weight. I can only imagine how much I'd have lost if I hadn't had the tube due to not being able to swallow from the radiation. My opinion is get the peg.
I've wondered about weakened immune systems also as I heard that sleep deprivation is also suspect for allowing cancer to get started. I know a lot of folks in America are below normal sleeping patterns, so I wondered if that could be a contributing factor. Perhaps some of the more medically competent posters on this site can answer your question.
Your local hospital, is it a cancer center or just a department within the hospital? If not a bonefide cancer center, you should consider looking elsewhere. The expertise at full cancer centers have saved some lives on this site, and seven weeks is a small investment to make to be sure you are getting the best possible treatment with the most advanced techniques and equipment. Your decision, but you might want to reconsider if your local hospital is not a cancer center. Hopefully, your lymph nodes are clear and you won't have as big a problem. Meanwhile, you will be in my prayers to get on top of this thing.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#16282 08-30-2004 10:49 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hello, Terry. My husband, Tom, will begin radiation on Sept. 7, as well. He is scheduled for 7 weeks as well, and is currently undergoing his second of 3 or 4 rounds of chemo. We are definately going with the PEG - Tom's radiation doc refuses to start the treatment without it. The weight thing is already an issue for us. He started this ride at 155 (on a 5'11" frame) and he's already been down to 140. Today, he's at 143.5 - and not handling the chemo reaction well enough to have any desire for food. I'd have to think that unless you were obese, the PEG would be a requirement to get one through in as good a condition as possible. WE are wishing you all good things. You are on our prayer list. Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#16283 08-30-2004 02:06 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Terry,
Welcome to the Oral Cancer Foundation. I see you and I live about 20 miles apart. I live in Kaukauna, WI. Did they tell you what type of radiation treatment you will be receiving? There are tqo types most get, 1. IMRT, 2, Field radiation kind of like comparing a sniper rifle to a shotgun approach. Did they also tell you what type of chemo drugs you will be receiving? The PEG tube is suggested in most cases. It allows you to make sure you input enough nutrients to maintain your current weight and have enough to heal also. Welcome again and ask any question you want to, someone will answer.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#16284 08-31-2004 02:04 AM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Hi Terry, When I was about to start radiation, someone on this board suggested going out and trying to gain 10-15 pounds before treatments begin. It was very good advice which I followed. I still lost 45 pounds but that 15 pound cushion made a difference. While everyone has different experiences with radiation and feeding tubes, I found the PEG to be critical to getting nutrients into my system when I had absolutely no appetite. The problem I think is that once the treatments begin and the radiation effects kick in, the actual procedure for installing the feeding tube is more painful than it would be if installed beforehand. Further, it often takes a week or so to schedule the PEG installation, a time during which it is more difficult to remain hydrated and nourished. Good luck with your treatments. Best wishes, Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#16285 08-31-2004 03:45 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Take my advice, get the PEG. There is really no reason not to. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#16286 08-31-2004 07:40 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 Terry, If it were me I would go to Mayo clinic. Your odds for survival are optimized at a comprehensive cancer center. They may have provision for providing lodging for your family while there.
By the way it's actually SCC not SQC.
Were you a pipe smoker? -that type of cancer is fairly typical of pipe smokers. My grandfather had that.
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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#16287 08-31-2004 11:53 AM | Joined: Jun 2004 Posts: 85 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Jun 2004 Posts: 85 | Hello Terry,
I know you have alot of doubts, concerns and questions. Great! Keep firing them in our direction and you will have no end of personal experiences coming back at you. I understand your reluctance to have a PEG, but unless you can force yourself to drink water even though it may taste like oil, I would have one.
It is encouraging that you have had a PET scan. It tells me you have good insurance and doctors that are leaving nothing to chance. I can't imagine you would have any Rad Treatment other than IMRT, also. I wouldn't waste your mental effort on trying to figure out the why of your recurrance. Concentrate on bulking up (out) and maintaining a positive attitude.
You have support here through the Forum, our thoughts and our prayers.
David
T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04. 2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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#16288 08-31-2004 04:01 PM | Joined: Mar 2003 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2003 Posts: 64 | I don't blame you for wanting to stay in GB for the treatment. Can the doctors there coordinate with those at the Mayo Clinic? Is the GB center a part of the U of Wisconsin Comprehensive Cancer Center?
We're from Wausau, so have special concern for you. Keep us all informed how your treatment progresses. My husband is the patient. He says he would recommend the feeding tube. I am sure it would be easier to have it in place before you start the radiation and chemo.
Thinking of you.
Lowanne | | |
#16289 09-01-2004 12:27 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | I have advised many on Peg tube. You will be ahead in the game to either get the tube installed or consult with a gastroenterologist, hold he/she in reserve. I opted for the latter. I consulted with a gastro in a large practice and was assured that when I was ready for the peg it would be installed with 24 hours after calling and it was. 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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#16290 09-02-2004 03:47 AM | Joined: Jul 2004 Posts: 12 Member | OP Member Joined: Jul 2004 Posts: 12 | Wow, I am impressed with all the responses and best wishes received to date. Thank you all very much for your support.
I start IMRT on 7 September and am scheduled for 7 weeks at 5 days per week. I will also be given Cisplatin on days 1, 22 and 45. Like all of you I am uncertain exactly what to expect as I go through treatment, even though the Doctors have told me likely scenario's.
The reason I decided to stay at home for the treatment is that Mayo would offer the identical treatment. The local cancer center has discussed my condition with Mayo Doctors and all agree there is no reason for me to live at Mayo for 7 plus weeks. I am trying to eat everything I can get my hands on now in anticipation of the weight loss. From your comments I am leaning toward having the PEG inserted, but will make that decision tomorrow when I meet with my Doctors one last time before I begin treatment. All the best. Terry
Terry
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#16291 09-02-2004 03:55 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Terry, Enjoy all the great tastes now... Just remember if you have any questions to fire away. Your treatment will be over before you know it...then the real fun begins. It will be tough but because you have come here you will never have to travel the path in the dark. Best wishes for a speedy recovery and success in blasting the beast. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Apr 2011 Posts: 2 Member | Member Joined: Apr 2011 Posts: 2 | Hi Terry. Mom mother was diagnosed with SCC after using Enbrel for 3 years for treatment of rheumatoid arthritis. One oncologist has mentioned a possible link. The rheumatologist tht prescribed the Enbrel denied any link. I've found a website that you may be interested in. A lot of people have posted medical problems they feel are directly related to Enbrel. If you're interested the site is aboutlawsuits.com. I think you'll find it pretty informative.
Caregiver for 78 year old mother diagnosed with SCC two yrs ago, followed by lung cancer diagnosis 1 yr ago. Treatment of OC surgery (partial glosectomy; full neck dissection; left mandible replacement; lymph nodes removed; radiation. Treatment for LC chemo & radiation.
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