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ROLL CALL 2012 - Updated as of January 16, 2012 (CLOSED 10/12/2013)
In year 2011, we had 89 folks who registered or checked back in. You only need to enroll and check in once a year. If you have not enrolled and checked back in this year (2012), please do so. Thank you. How to Enroll We started this list a few years ago. It is a voluntary enrollment for Head and Neck Cancer folks and you…
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First Mouth Soars
Just into 10th rad and past 2nd chemo and a mouth sore has appeared - yep the nurse said from the rads, yep the rad/onco said from the rads - I am swishing salt water and baking soda vociferously many many many times per day - according to them and the onco it will just get worse - I have read the magic mouth and mugard…
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bad blood
Hello y'all! Haven't been here in a while. Been working and living and enjoying as much food as I can Lol. Had a recent scare though and who better to ask than you great people :) apparently, my last trip to the doc met with some questionable blood work :/ although she had originally told me I didn't need a pet right now,…
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A post tx HAIR question
My hair is falling out in handfuls. It started towards the end of my radiation treatments (no chemo) and I asked my rad onc. (keep in mind...he is pretty much a jerk and I do not like him at all) This was our conversation: Me: My hair is falling out in handfuls, in the shower, when I brush it, etc.. Him: No, rads won't…
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SNUC-my dad newly diagnosed. Advice please!
Hello everyone my name is Tiffamy Tarango. My dad was recently diagnosed with SNUC on April 25,2013 post biopsy results. he is going to be treated UT Southwestern in Dallas tx. We met with the oncologist yesterday and he is at at stage 2 with no lymph node involvement. The tumor is large in his frontal sinuses, ethmoid…
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Ct time once again on thursday
Hello everyone ! Well it's that time once again for my lung scan and spirometry testing. Seems like groundhogs day when your in the machine. (never ending) But in reality it's only minutes even with the contrast (unless they miss your vein a couple of times ... ouch !) Last time in I thought I was doing…
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Need some help...
I am in my 6th week of a 7 week treatment. I have hit a wall with eating and I am now starving. I am basically on a liquid diet, which is fine. The problem is that Boost, Resource, Ensure, etc make me sick when I drink them. My body doesn't like them at all. I was doing really well with Carnation Instant Breakfast…
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Very, very weird occurrence today
I woke up this morning and something was different, not bad but something was definitely not usual. The feeling lasted all morning and was nagging me until after lunch when I finally hit on what it was. I DIDN'T HURT. First time in almost two years that my throat didn't hurt. Pain has been advil class for the last three or…
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Trach out
Haven't been on here for a while,finally after 2 years I got my trach out on 2-13-13, the day before Valentines Day, I prayed about it everyday, went through the worst gruelsome rads and chemo and got to the end of the tunnell, I'm blessed. bjw1955
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organ donation on DL
Hello everyone, I have to renew my DL this coming January. I found out that I need to take off my listing as a donor (organs) due to my dx. I'm a little bummed, (35 yrs.) as I have always believed in this wonderful way of giving another a chance at life. I don't know if this is for all cancer dx's, but for sure mine. ADCC.…
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G-tube cleaning inquiry
Hello Everyone. I have a feeding tube and have been using the bolus to pump the puree into my stomach. However, recently it has been clog more often than not. I was told to use Coke. Is there other alternative beside soft drink to clean the tube? Carbonate water? Canada dry? How often do I clean it...every time after each…
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Cured vs. Healed
As I recover from cancer treatment, it's become quite evident that I've not been cured of my illness. When we speak of a disease, we often tend to think of it in absolute terms. Curable and incurable. This is due mostly to the way we think of medicine and the way modern society thinks of it. It doesn't take into…
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Thera Breath gum alternative. For dry mouth?
Hey Guys, I recently tried Thera Breath gum (Dr. Katz) and its seemed to work well for me. ( It was the first time i chewed gum in over a year). How ever the price of the gum is outrageous. What other gums have you guys used with sucess? (I use xilememelts at night and they work great)
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Something in the back of the throat
Hi All, I had NPC (stage 2) and finished treatment 2 weeks ago. When I swallow water or air, I feel there is something scraping the back of my throat. It feels like hard and sharp. Anyone had that? Or is it just the dryness and radiation burn of the throat making that sensation? Wound visiting an ENT who might put a camera…
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Halfway through XRT
Hanging in after a second g-tube placement Monday that caused my BP to drop so low they could not get a reading on 3 BP machines and they kept me until 6 pm Monday so I missed my XRT that day. I was really leaning towards just having an NG tube placed for 4 weeks but the MD talked me out of that. The pain level was a 10…
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YOUR MOJO WORKED
Thanks to all of my CSN buds who sent me the encouragement only us in our "unlucky fraternity" could send. My scans were great. Continued shrinkage of the two lung tumors, and more important, the two Mediastinal Nodes are all but dead tissue. To the newcomers here, NEVER GIVE UP!! I have been stage 4, get your affairs in…
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Sore throat remedies/prevention
Hey, just wondering about the sore throat what worked for this and did anyone have success preventing sore throat from rads? Getting nervous about this. Help. Still able to eat food and swallow today, tomorrow.... PJ
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Saliva thicken post treatment
Hello all. I am two weeks out of treatment. I've notice my saliva is getting thicker and thicker. Is that a sign of progress? At night when I sleep, there is no saliva at all and the mouth is dry like a dessert. But in the morning, the saliva comes back but very thick. Does anyone know what all this mean? Anyone have…
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A good read for anyone touched by cancer...
I copied this from a FB site dedicated to Oral Cancer Survivors... It's long, but a great read. Puts a lot of feelings into words. ...............Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well…
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PET Scan/Tonsil Cancer
Hi, I wanted to let you all know that my 1 year after treatment PET scan came back NED. I am relieved and happy. Last year at this time, I was nearing the end of my treatments, I was beyond scared, feeling horrible, and really depressed. It was a miserable time. Even though I was surrounded by loved ones, I felt alone with…
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PET scans - poll of how often
Hello old friends, I know it's been a while, but now I have another question. Historically, my husband had scc of tonsils, Stage 4, went through radical neck dissection in April of 2011, 35 radiation sessions in June of 2011. He hasn't had a PET scan for 1 1/2 years (being followed by ENT surgeon.) She says she doesn't…
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Hi Friends!
Sorry been gone so long fighting emotional issues with living with side efeects, i ability to work, and STILL waiti g for my appeal hearing for almost a year, officially no paycheck for a year so I told Faith Santa laid off Elves its tight budget at North Pole so dont expect that much. She took it well, but really she'll…
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Bored
I,m getting bored with my diet, for the last two months I,ve lived on liquid feed and water. I know I won't be able to taste it but can I have Luke warm sweet coffee through the tube, I hadn,t seen any postings on beverages. I miss the energy surge in the mornings but I don't want to upset my stomach.
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Thrush?
how can I get rid of blisters in my throat and roof of mouth. I,ve been to my doc twice and the medication he prescribe isn't any good. I also have a white coat growing on my tongue like curd. what causes thrush. I,m on OSMOLITE 1.5 bottle through PEG tube. I,ve not had anything by mouth for a couple of months. saliva is…
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NPC and Dry Mouth Recovery
Hello! So the background info... I am a 28 year old female with nasopharyngeal carcinoma. I discovered it with two pea-sized bumps on my neck. They kept getting bigger but doctors didn't think anything of it. Finally, a year after the discovery, a biopsy was conducted, and the pathology reports indicated that the growths…
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fluid in lung UPDATED
Jim has not been feeling well for a few days. I thought he was just down from not being able to fish because of the weather. This morning around six he woke me saying he was in extreme pain in his chest. Exray showed fluid in his left lung. We are waiting for the oncologist's nurse to call so they can work him into the…
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What are your thoughts on this article about unfair expectations of positivity?
The following links are to an article about unfair expectations of positivity. The first link is the article, the second link is the comments section where some interesting insight is posted. The article addresses a topic that deserves consideration as patients deal with the aftermath of diagnosis and treatment. Link to…
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Mouth dryness at night with teeth pain
I'm into the second week of radiation treatment for my NPC. I notice my breathing that air exhaled out of my nose with some escaping through the mouth. This cause the mouth to be open at night to allow the air to escape. I noticed this cause my whole mouth and tongue to be dry. Had to wake up and drink water to wet. But…
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lymphedema
I am 6 weeks post radiation treatment after rhinectomy. The swelling around my eyes is especially bad, my whole face not AS bad. My ENT said the other day that it was lymphedema and could be treated with facial massages. Does anyone have any info to give me a little clue? Does anyone else get non-answers from your medical…
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Hiccups
Hi Everybody - sorry to post maybe a low level issue - but had first rad Mon, chemo/rad Tues/ and 3rd rad today - I now have developed hiccups that started this morning and are still going on - I read some of the past threads and posts back in 2009 - and they did experience this and I have read some studies on line from…