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Where's aluo?
Has anyone heard from him this week? p
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Odd Smell
Just a quick question for you all. During and now after my rad treatments whenever I bend over and stand up I get a weird smell. It's kind of like burned something and I can't say I've ever smelled it before. I'm assuming it is from the radiation burn to my sinus'. And this morning I had a sneezing fit due to the fierce…
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Half through
and counting the days!! The side effects have racheted up and I'm hoping THIS is as bad as it gets! I had posted a week ago that I was hoping that was as bad as it was getting....nope!!! I can still eat a little and I'm learning to cope, eat smaller bites and chew and chew and chew!! :) I did finally use the lidocaine mix…
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has anyone had more than 70% of your tongue removed and reconstructed?
Hi, has anyone had more than 70% of your tongue removed and reconstructed? My hubby is going for the surgery very soon. A huge portion of his tongue will be removed and reconstructed. We were told speech will be badly affected and taste bud gone forever as well as swallowing problem. however, there will be speech and…
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Sun, sun screen..large hat suggestion?
I have finished 8 radiations and skin is okay so far. I do know that sun is not good for skin right now as it is going thru radtiation. Was wondering if okay to go out wiht lot fo sun screen put on every 2 hours? Also any suggestions for one of those really large hats? Thanks, Sam
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Good Article on Depression!!!
I was was never suicidal; but did and still do battle depression. I thought this article on the oral cancer foundation web-site was interesting!! http://oralcancernews.org/wp/suicide-rates-among-oral-cancer-patients-on-the-rise/ Charles
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Hopeful Intersting HPV stuff for the near future?
I read this article on the oral cancer foundation web-site; then checked out the companies web-site. Would be good news for future HPV+ survivors!!! http://oralcancernews.org/wp/advaxis-recruiting-for-hpv-head-and-neck-cancer-trial/ http://www.advaxis.com/
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Newbie to the forums
Hi everyone, my name is Nick I was dx last month with stage 4 scc hpv+ and started my treatments last week. I have been reading the posts and it sounds like a great bunch of folks on here. I'm 40 and have a wife and 3 children one of my biggest concerns is my weight i'm underweight 130lbs 5ft 8 inches and i burn calories…
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Good book for us
with HNC by a Dr. who contracted it himself. This tells his journey, the highs and the lows and where he is now. I told my rad onc about it and hopefully he reads it but its so informative for all of us. I got it for my Nook for $8.99. It's certainly worth it. I don't know how long it's been published so you might can get…
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Memorial Day Reflections
Greetings everyone! I haven't been on the site in a while and thought I'd drop by. Two years ago on Memorial Day weekend I was checking in to the University of Kansas Medical Center. I was getting ready to be hooked up to an IV for the next four days because of the severe nausea induced by the chemo. I couldn't hold…
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Feeling rough .......just need to hear from you guys :
Hey all .... Feeling pressure in my head for about a week now ....feeling quite blah...voice is still raspy / rough ....and you all know how your mind flies away with this stuff ... ...but to make myself feel better ....I keep saying I was feeling quite rough about a week before my fist post treatment scan May 7th ...and…
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Tumor Bleeding???
have you ever spit up blood from the tumor mine is on my tonsil and evidently there is a lot of blood vessels there so a couple of times a day i'm spitting up blood when i drink ice water it goes away for a while then comes back again.I have called the doctor and they said that its normal but it scares me when it happens.
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Ditto 1 or Ditto 2
Just checking up on ya'll.....I may have missed a post but I haven't seen ya'll on the boards, please let us know how you're doing.
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The truck finally stopped backing up over me!
Sorry I've been absent for a couple days. I ended up being hospitalized Sunday evening, and just got out yesterday. I went in when I threw up on Sunday and it was mostly blood. They kept me for four nights to try to stop the nausea and get some control over the pain. It seems like my body decided to hold all of the side…
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I was just diagnosed with SCC on my tongue. I am scared.
I have recently been diagnosed with tongue cancer. They said I am stage 1 almost stage 2. I was told I need to have 1/4 in deep and about legnth of two quarters taken off the side of my tongue. They did a PET scan and it showed no cancer anywhere else but they are wanting to do a partial neck disection to make sure there…
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Had this great idea, today....
Yesterday, the rad-onc said they were shortening up my radiation "scope" after the next three sessions. My throat will now be out of the radiation, and they will be concentrating on my nasopharnyx. I thought..."well, could this get me out of amifostine treatment everyday???" Asked both the oncologist and the…
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Dissapointed at this time
Hi everybody i really thought today was the day to get this thing going get the mask made and move on with treatment but i drive down there he does his exam and tells me i'm not ready yet there is too much swelling will try again on Tuesday i'm so frustrated at this point its been long enough getting this battle going…
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Biopsy today
We got a call late yesterday from the radiation department saying the oncologist scheduled a biopsy. I am not sure why since he said Jim coudn't have surgery or chemo. The Onco;ogist is on vacation until the 31st so Jim went and had it done. Maybe it will show something else, one can hope. Debbie
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Olfactory Neuroblastoma - Financial Assistance Programs?
Hello, I'm Chris Marler and I was diagnosed with Olfactory Neuroblastoma a few days go. I have Kaiser but my copays are very high. I'm looking for leads to financial assistance programs that might be available for me. I really don't know where to start. I tried the PAF program, but my diagnosis is not on their list of…
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Peg tube infection
Andy and I are suspicious that he has an infection. Some redness, some puss. Blister, and a low grade fever. Anybody have these symptoms? Seeing a gastro doc on Friday. Scared about removal, as well!! Thanks for input, Robin
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It's been a while
My husband, Andy, is still fighting the beast. He was in a clinical trial that worked for six cycles but then the response ended. He had a chemo vacation and is now on a new chemo regimen for six weeks. Then, we'll see if there's response. If not, on to the next game plan. More tools in the toolbox! Meanwhile I will…
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I'm searching and searching for the link
to the Magic Broth in the SuperThread.....but can't find it. Anybody? John? p
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Nasopharynx Cancer and Diet
Hello everyone! I'm new here. I have NPC and found this forum through google. I'm hoping to connect with others who have NPC. I was diagnosed about 7.5 years ago when I was 18. I am an Asian female born in Canada and grew up in Canada. The disease has spread from my nasal cavity to the lymph nodes in my neck and eventually…
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Dry mouth : how did you deal with it?
I am done with 6 radiations and already hit with extreme dry mouth and throat, throat seems worst. Sips of water helps but night time is hard. I tried biotine oral balance gel recommended by my RN but that is bit sticky And did not help much. Biotine mouthwash helps for 15 mins or so, I have ordered stoppers 4 from…
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PROTON THERAPY???
Having been recently diagnosed with SCCHN, I contacted one of the proton therapy centers here in town. All I had read said that SCCHN was one of the types which is successfully treated with proton. The response I received was that I am not a candidate because they have no protocol for tonsil cancer. Has anyone out there…
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Finally getting started
Hi everybody the swelling from having my 23 teeth extracted is finally going down so hopefully tomorrow i'll be getting my mask made which will be a step in the right direction finally i can throw a punch against the devil and then the fight will be on any suggestions on the mask would be great.thank you
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I AM SIGNING OFF
To all of the grest friends and confidants here on OUR SITE, I have decided to leave. I have gotten from this site what I needed when I needed it but have also battled some serious depression trying to get back to my new normal while also coping with a personal tragedy with my son. In all honesty I am struggling with the…
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Pneumonia / Peg Tube
Well I have been in the hospital for the last few days fighting my first pneumonia problem. I had another bad attack of aspiration last week, got sick but had no idea what the problem was till my Wife brought me to the emergency room later Friday night, when the check Pneumonia. What sucks is that they will not let me eat…
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Tap Out
I have not posted in a while due to a lot of reasons. Needless to say, I have been battling 'the beast' tooth and nail. Well, today, I officially 'tapped out'. I am no longer treating the cancer and I am going to try and enjoy as much as I can. No, I didn't just quit. I fought long and hard, but the Doc's just found about…
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Newbie Needs Guidance On Posting to Group
I was diagnosed with Sqaumous Cell Carcinoma (SCC), Base of Tongue (BOT) cancer in late 2009. I would very much like to tell my story in hopes of finding others who have experienced what I have gone through and am going through. I have two goals in being here, one it to tell my story in the hopes that it may help others…