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How to know when to take PEG out?
Hi All I have had a PEG for about 7 months and still use it every day. I eat soft things, soups, yogurts, some chicken and fish, but only a small amount. My question is how do you know or when did you decide to take out your PEG????? I can probably eat and drink my 2200 calories needed, but I'm sure I'll get tired of…
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An "outsider" coming in
Hello all! I've been an "outsider" reading your posts since I was diagnosed with Stage IV tongue cancer. I've had my surgery and going into my last week of radiation and chemo. I finally decided to join to thank you all for your posts. I felt I wasn't alone and decided to join because there might be other "outsiders" like…
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A BIG concern
I am very concerned about Osteo radio necrosis. Doctors and dentist warned me and prescribed flossing/brushing after every meal as well as fluoride trays/treatment daily and believe me I am anal about complying (I guess after 25 years in the Army following orders is in my DNA). I started the routine 2 weeks before my first…
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My story
I had a "rough" spot on the inside of my cheek which didn't go away. I showed it to my dentist who said it probably wasn't anything other than "cheek-biters" cheek but suggested a biopsy. The oral surgeon saw no urgency...oral cancer is rarely in the cheek and this looked like "cheek-biters" cheek. I delayed the biopsy for…
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very dry throat
My husband, Jim, is now almost two months post-treatment, radiation and chemo, for hypopharyngeal and base of tongue cancer. PET scan showed only residual activity at the site of the treatment, which was great to hear. This was a couple of weeks ago. An increasingly troublesome ear pain has caused him to move back onto…
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Edema - Chin & Neck
I've been told that the swelling under my chin (wattle) and rings around my neck are normal reactions to radiation. My concern is that they keep getting bigger and they are extremely firm to the touch. I'm 7 months post and I was wondering if anyone else has experienced this continued growth? Thanks Gang
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Discontinuing TPF for BOT cancer
Buzz has had 2 rounds of TPF chemotherapy and has had severe side effects. He is in the hospital for the second time with low white cell counts, a respiratory infection, and severe electrolyte imbalances. The doctor has hinted we may need to stop chemo and not do round three. Has anyone had only two rounds of TPF chemo and…
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removal of feeding tube
hi everyone me again I had a ?? when the feeding tube is removed what is the process and will it be painfull?
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Throat Cancer Victory - Round One
On April 30, 2010 I was diagnosed with a stage 3, non-metastasizing tumor (about 4cm) at the base of my tongue. A PET scan revealed the rest of my body to be cancer-free and no lymph nodes were affected. In May I underwent surgery for relocation of my opposite-side salivary gland (to under my chin), insertion of a PEG and…
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Vocal Cords Problems
I am just wondering how may of us survivor suffer with lost of our Vocal Cords. I am just starting to have problems and my ENT said he does not know why, but from what I read here on CSN there are a lot of survivors who have lost one side or even both due to radiation. If you have problems speaking due to lost of Vocal…
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first time mask sucked
my first time using the mask was pretty tramatic for me. I could not finish. Going back on monday. If anybody had a hard time with the mask and was able to overcome please write me with your sucess story
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question for people who is working and getting disability from social security?
Hi Guys I just wanted to know who is working and getting disability from social security my question is if your able to return to work do the disability cont or they stop it? Because I am still dealing with major dry mouth and numbness in my fingers and still having pain in my right side shoulder. Because I post to get…
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Jaw Opening Device
After 5 years of not being able to open my Jaw more then ½ inch the Dentist at MD Anderson wants me to try and use a device called Dyna-Splint to get motion back into the Jaw. I have use other Devices before that did not work, has any one every heard or used a Dyna-Splint.
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Back to Chattanooga for Brother's Services
Hi all: Basketcase here! First let say a big thank you to y'all once again. It's so comforting to read and feel your love, concern and sympathy. I'm headed back to Chatt. in about an hour for my brother's visitation and funeral tomorrow. He was an Air Force veteran and will be buried in National Cemetary. The brother that…
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Some advice: EEEEEEEE-pics!
Reading some of the threads got me to thinking... How many of you have actually SEEN the inside of your throat/larynx through the scope? Does your doctor let you look? Does your doctor have a scope that projects on a monitor or screen? Does your doctor have equipment that allows him/her to capture a digital image like a…
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My EEEEEE must have been off key
Saw my ENT today but didn't get any real news except he wants to see me back in 3 weeks instead of 2 months. I've been having head aches and ear aches for the last two weeks which I hadn't had since my treatment ended. He didn't say much, which has me more concerned. The tip of my tongue hurts because he was holding my…
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Quick Question
My dad is almost 4 monthes post treatment and is doing really great. The only issues that he seems to have (other then dry mouth) is he gets chocked some when eating certain things. The main things being beans and corn. I tell him to make sure he drinks water when he eats. Does this still happens to any of you at this…
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Peeling skin
Hi all, I'm probably bugging y'all because I ask so many questions! I was wondering, my neck is peeling a lot now and is there some kind of scrub I should use to exfoliate it, or should I just leave it alone? Maybe it's not safe to peel it though? I'm not sure, what did y'all do?
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Night Cough/Desperate/Help anyone?
I am 7 weeks post rad tx. and I have this nightly cough that keeps me up most of the night. I am absolutely desperate as I can't sleep and I am so exhausted. I have this very salty phlegm that starts in the early evening hours every single night and then I cough of and on most of the night. Doctor's have no idea and keep…
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BACK PAIN
I have only posted a few times. I am stage 3, tonsil cancer with lymp nodes. I have partial neck dissection & Tonsillectomy, 3 teeth pulled and now in radiation. Today I completed Treatment# 23/33. Have 10 left. Things went pretty well until last week. Mouth is a wreck, thrush and more mouth sores, can still sallow some,…
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Fentanyl patch- life saver!!
So! Wednesday is my LAST treatment (PRAISE JESUS!) On Thursday my mom went with me to my rad aptmnt b/c I was suffering so bad and had already lost 15 pounds. She told the Doc that she is certain they wouldn't even let an animal suffer the way I was suffering and that there had to be some sort of relief they could offer…
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Brother Gone
Hi all: Basketcase checking in. First, let me say a big thanks to all of your comments, prayers, etc. My brother Richard did pass away at about 3:30 this afternoon. I talked with my sister-in-law last night and she told me this was very hard, a lot harder than she expected. I well know what she means and how she feels.…
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Radiant heat vs forced air
We're moving from Texas where it is very hot and humid to the Pacific Northwest where it is cooler and rains alot. I have found that since I have lost some of my saliva glands due to cancer surgery, blowing air, like ceiling fans and forced air/heat vents really bother my throat making it dryer than it already is. Does…
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Mouth Sores
Sorry to ask the same questions that have been asked so many times before. I have had 11 rad treatments and now developed mouth sores on my tongue (Top and side). I spoke with doctor on Friday and he said it looked like a fewer blister. Said to get some Ora-a-gel to help munb. I have heard many here talk about Magic Mouth…
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new and scared
Hello to all, I just found out on 9/23/10 that my right tonsil has carcinoma. On Monday I go for my first pet scan and consultation on Wedensday. I don't know what to expect. Please help? The information on the net is overwhelming and confusing. Any insights or simpler info, would help. Thanks Mike
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Two ENT's missed stage IV base of tongue cancer
Has anyone had the experience of being examined by an ENT who completely missed a Stage IV tumor? ENT #1 did not see a thing, using mirrors, but asked for a second opinion. ENT #2 used a scope but did not see a thing, stating "It looks like you are cured." (Buzz had tonsil cancer 9 years ago). Then he felt Buzz's tongue…
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Anyone heard of
Hi In my despearte search for info regarding F.A. treatment i came across Tomotherapy Radiation treatment. Does anyone have any personal knowlege re this? Clear
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Funny Happens
So I saw my Oncologist this morning for one of my six week follow up exams. I am 6 months out of a left neck dissection and tonsillectomy. I have SCC Unknown Primary and have had surgery only. I was in for a scoping today and all that other fun stuff. He felt something concerning down my throat and was putting the scope…
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Violet Ray Machine
Has anyone heard of or used one of these Violet Ray Machine before. I was told it was good for people with nerve damage and can help the Body restore normal function. I have ordered one and plan to try it on my damage and painful nerves ending where radiation has all but killed me. I would like a little advice before…
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Electrolyte imbalances and Cisplatin
Hubby has just received round 2 of chemo for base of tongue cancer. With round 1, his sodium dropped so low that he was hospitalized for a week. Subsequently, his potassium, phosphorus, magnesium, and calcium dropped and he received replacments via IV while hospitalized and then daily for a week after being discharged…