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Received Possible First NED
Hi Everyone, Lisa here, Going on 6 wk post-treatment. Cancer located left tonsil area, HPV+. Saw my ENT last week for a scope of the mouth and throat. Pictures were taken. Compared to the "Before" pictures taken in January, the mass is no longer raised and is systemical to surrounding healthy tissue. My ENT pronounced it a…
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Peg tube
Had peg tube inserted Friday. Been in the hospital since. Can't keep anything down. Also in some pain. Taking me for a scan in a little while. For those that have or had them...any suggestions? Thanks, Joanne
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Hair Today.....maybe Gone Tomorrow
Hi again, Before I started this journey I made a decision to cut my longer/short haircut shorter so I would be prepared in case I did lose my hair due to chemo. If it didn't, it would grow back,....... except it's NOT growing longer. In 2 1/2 months besides turning salt and pepper grey and losing my back hairline from the…
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Inner and outer lip sores
For those who might have had these from radiation during treatment, what did you use? I tried Aquaphor but it does not help. Is there something medicated to use for the lips? The side of my lip is cracking also and painful. I'm using my soda rinse religiously, and also the glutamine. Cancer sucks and so does the treatment!
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Introduction (Stage IVA Tonsil Cancer)
Hello. First off let me say this site and the Head & Neck discussion board is a wonderful tool to use for a journey through this disease. I appreciate all the users that I have seen on this board and their helpful experiences. I am a 54 year old male and I was diagnosed with Tonsil Cancer on March 1, 2016; and was…
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Introduction and a couple of questions
Greetings all. My name is Gregg and I live in Raleigh. I stumbled upon CSN while searching around for some recovery and after treatment topics on the web. I was diagonosed in August 2015 with stage IV squamous on base of toungue and spread to lymph nodes. Was fortunate enough to get into the de-intensified treatment study…
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Recovery
Hi everyone. It has been so long since I visited that I had to re- register with a new name. I have forgotten all the abbreviations and buzz words, but I had squamous cell stage 3 cancerous lymph on right side of neck, primary site unknown. Had right side neck dissection, feeding tube, Erbitux (sp?) chemo and full…
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New Treatment for head and neck cancer
http://m.ndtv.com/health/australian-researchers-find-new-treatment-for-throat-cancer-1216466
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Any tongue cancer patients here?
I'm almost 2 months out from surgery. Not a lot of time but my noticeable speech impediment bothers me. My surgery involved a smaller tumor on the left side, which made my tongue tighter while pulling to the left. Has anyone experienced a similar surgery and saw their speech improve with time? I honestly don't see how it…
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L Glutamine Help
Almost 3 months out of Rad/Chemo treatments. Mouth burning (Burning Mouth Syndrone) mostly back of tongue/ upper-throat, and extremely DRY Mouth. Have read on posts about taking L Glutamine during treatment. Does it still work post-treatment? If so, dosage and powder or pill form the best. Both conditions are driving me…
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And speaking of steak...what foods do you miss the most?
Steak is not a big thing for me...but I really miss fried chicken, pot roast, weiner schnitzel, BBQ...so many delicious meat and chicken dishes I used to enjoy. Used to love rice but it just swims around in my mouth now. Breads, pastries, cakes, cookies, danish and all those yummy desserts turn to glue in my mouth and…
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Hair loss near radiation site
This is especially for the ladies. If you had hair loss near irradiated area, did it grow back once treatment stopped? Mine is coming out in clumps and it's freaking me out.
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Treatment Update - ding ding, round 2
A little overdue but thought I'd share an update with you all. Deep into treatment now which consists of weekly infusions of Carboplatin. Fair to say this is not so much fun and I have 6 more to go. The main complaint I have is one of fatigue. I'm more or less wasted after chemo for 5 days. Nausea also comes and goes but…
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Ear pain
My ear started bothering me this week which is my third week. Feels like a bubble some times while other times it hurts like earache. PA told me to try Sudafed. Anyone else had this problem? Did it last through to the end? Got worse?
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Radiation fibrosis syndrome
I heard that vitamin E can reduce the cramping. Any truth to that? I'm 4 years into remission but the lingering after effects won't let go. Help.
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Aloe Juice
So I start my rads tomorrow and my nurse told me to get organic aloe juice and drink 2 oz before and after radiation. Just wondering if anyone here has tried this and if you felt it made a difference. Thanks , Shirley
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MuGuard
Finally got the package. I can now see why MDA does not push this product. It's been a hassle to get things sorted out for the last two weeks, and it wasn't on on my doctor's side. Anyway, used the first dose. It BURNS like no other at first, but hoping it will help protect those sores so I can eat with less pain. For…
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Peg tube
I'm not sure if this posted. I had my PEG tube inserted Friday and have been in the hospital since. I can keep anything down and still in some pain. They are taking me for a scan in a little while. Any suggestions. Thanks, Joanne
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My radiation journey - Week 4
Well, I just completed week 4. Nineteen treatments of 33 are in the books. Here is a breakdown of what's happening: Food tastes horrible. I still have a strong appetite so I'm eating normally. But each day food tastes worse and worse. I can understand why some folks give up eating. Mouth sores are still manageable with no…
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Chi Ku: A Chinese term for what we face each day of treatment and recovery
I was relaxing in the park this weekend reading Oprah magazine and this phrase jumped out at me: Chi Ku. It translates literally as "to eat bitterness" and is a Chinese phrase for enduring hardship. It means to endure something unpleasant in good humor. Or to continue despite great difficulties in a general sense of…
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Brushing your teeth
For those just beginning radiation therapy, I highly recommend the Oral B electric toothbrush with the round head. Before I started treatments, my dentist recommended it for its obvious cleaning benefits. I didn't realize then how invaluable it would be for me. I usually take my brush to work so I can be clean for…
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10 Things To Never Say To Someone With Cancer
Today, I came across an in interesting article on MSN. The story detailed things not to say to people with various medical conditions, and one section was the “10 Things To Never Say To Someone With Cancer.” Here is the link:…
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Surviving 16 years post oral diagnosis
Hello to those who are interested. yes! It's been that long since my first diagnosis In 2000. The cancer came back 3 times. The jawbone replacement took place in 2013 but since then all is well. I'm very close to living my normal life except for the feeding tube ( 5 years now) but it has been a blessing in disguise . I…
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Waiting for first biopsy results today and scared
Hi, All. I'm a newbie. I just had a biopsy on Tuesday, March 31, 2016, and was told the surgeon would call today with the results. They took punch biopsies of my upper back gum area, left side, and one of the right side of my tongue. For years, I have suffered with Oral Lichen Planus, and the oral surgeon thought the…
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Lotions or creams?
I am not enjoying the Aquaphor. Sticky, gooey, yucky feeling. A nurse at MDA mentioned Jeans Cream, but at $45 for 7 oz, I think I'll pass. Basically they said it's okay to use Coconut oil or any lotion we want as long as there is no alcohol. I think someone mentioned Calendula. What worked for you?
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Alternative Treatments
Looking for some candid feedback. I am 61. Healthy and strong. Except, I have stage 4 squamous cell cancer with a tumor at the base of my tongue. Docs are gearing up for chemo and 6 weeks of radiation. Is this the way to go? It seems wrong to me. Kill my good cells to kill the cancer and hope I survive it. As others who…
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Geographic mouth from radiation
I have been in remission since January 2008. Have some side effects from chemo and radiation. Loss of hearing, lots of mucuous but one of the most pain ones that has continued over the years and wish I could resolve is geographic tongue. It causes my mouth to burn and be very painful. My ent has prescribed "magic…
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Follow up visit
I had my second follow up with the surgeon today. (Tumor removal, tongue). Everything looks good. He did say that he could do an outpatiet surgery to fix the lump of skin on the top of my tongue, but I said I'd wait to see if it goes down any further. I keep messing with it and it is somewhat inflamed. I'm gonna give Advil…
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Going for implants and wondering
Hi everyone.I had a cat scan yesterday to check for the density in my jaw from the radiation.Doctor was very happy with the results so now we moving forward.And wondering if anyone else has gone though this?He is going to trim my gum line and move my tounge flap back a little.And also having the denist make up a splint as…
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New member, husband with tonsil cancer - post-surgery and protons, possible lung spots
Hi everyone, It is strange to be here, in this forum, after my husband has already gone 8 months or so into the process. He was diagnosed with tonsil cancer in August 2015: T3-4, HPV+18. I appreciate your many stories. I'm hoping for guidance. I didn't think I'd need to post on a forum, thinking my 46yr old husband was in…