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Needing some advice please!
Hi All, So I am waiting again for another appointment with my ENT. It seems that is all I have been doing is the waiting thing. I was diagnosed with "Cancer" September 24 and I am still waiting. I have my appointment Dec.15 with my ENT to discuss the next step.. Am very confused, isn't it supposed to be the sooner you are…
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loss of gum tissue
I have been somewhat active on this forum for a short while, partly in hopes of getting answers to what, as you know, are important questions we all have about our symptoms and experiences. I am on record as to what my treatment was, and have been unable to find anyone with two 2-pump treatments for 4 days/each, which…
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Radiation Question
I just had a glossectomy to remove cancer in my tongue and a selective neck dissection to remove 33 lymph nodes. Although my surgical oncologist believes he removed all the cancer and the lymph nodes were clean, the cancer was beginning to spread to the nerves. Because of this, my surgical oncologist is sending me to a…
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Surgery w/ or Rad/chemo only
I was diagnosed 8 days ago, Base of Tongue cancer spread to lymph node. Cancer has not crossed the baseline, but it is big. T2-4,N2b. I am 60 years old. As a young man I was an infantryman in the 101st Airborne division facing violent death everyday. I am more afraid now than I was then, which is saying a lot. I live…
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For Hondo
Hi Hondo, I just wanted to tell you that I am back from my "girlfriend" trip and that my husband survived without me just fine. He even went pheasant hungting for 3 days. I am so proud of him for persevering thru this treatment and now continuing on with life even tho it's tougher and he tires more easilyl And yes, I fell…
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%age of clear slate
Does anyone have an idea what the percentage is on that you are clear and free of cancer after your treatments? I go for my first follow up ith my Oncologist Dec. 7. And I'm starting to worry. For no reason, I sure:) Fishingirl (Cindy)
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Good news
As some of you know, I had HPV-derived Stage III SCC of the right tonsil, a tonsillectomy, 30 rads, two rounds of cisplatin and a modified radical neck dissection. The chemo and rads ended in October 2008, and I had the neck dissection in January '09. Today I went back to Johns Hopkins for a full-body PET scan and a CAT…
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Just Wondering
My husband just started rads, 2 down 33 to go, and he has been hiccuping after each rad session. Also, says he is sweating alot, beads of sweat on his head and body is sort of clammy, hot and cold one minute to the next. He has BOT SCCa stage 2. It may seem silly, but I am a worrier, (trying to be a warrior) so is this in…
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good news today
I am so happy to write that my husband Kevin had a good report from his recent PET/CT scans today. They found three very tiny blips that the doctors are not at all concerned about that will be monitored at the next scans in March. He is also having an ultra sound to check his thyroid at the end of the month. It is not lit…
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1st follow up visit:)
Hi everyone! I am leaving today to go for my first follow up visit with my Oncologist. I am going on my 6th week after treatments. (35 radiation) My appt. is Monday, but it is a long 8 hrs. drive. So we have to stay the night. Please wish me luck. I'm a lttle scared. But I'm sure that's normal:) Cindy
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Looking for Non Conventional Peg Tube Formula
Hi everyone, I don't swallow because of a constricted esophagus as a result of radiation for squamous cell carcinoma of the head and neck with an unknown primary (means I had a lump on my neck, but the source of the cancer was never found). Consequently I was treated with the largest amount of radiation allowed. I was 49…
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Discouraged
Bill and everyone, Yesterday I tried something that I didn't think I could eat, and guess what?...I couldn't eat it! It was a grilled cheese sandwich from Sonic. The bread and cheese just stuck to my teeth like Play Doh clay. I became so discouraged and cried all day. Will this ever get better? I am only 7 1/2 months out…
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T-minus 10 days and counting
Due to the medical facts and some of contributors here on this site, their encouragement, stories, etc, I decided to take the radiation. I was fitted for my IMRT mask Thursday 12/03. The final tweaks on the mask occur 12/16 and I suspect radiation treament to begin no later than 12/21. Your stories and comments are truly…
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A question for tongue cancer patients
I know the normal course of action for tongue cancer patients is radiation along with chemo. However, my father who has tongue cancer will not have to undergo chemo. We, of course, were very happy to hear this and I think my mom wanted to jump on the drs desk and start dancing! Anyway, my question is to those of you who…
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Five Months Out - Scans & Labs
I have just completed my 2nd set of scans and lab work since finishing treatment June 2009. SCC stage III right tonsil and a lymphnode, all HPV derived.... Nine weeks of Chemo (Cisplaten, Taxotere and 5FU) followed up with seven weeks of concurrent Carboplaten once a week and 35x Radiation exposures preceeded each day with…
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How do I produce more saliva?
Good Morning everyone, I haven't been here for a while. I had tonsil cancer, stage 3, in January 07 and I'm doing well. I had 39 treatments of radiation, one cisplatin and 7 erbitux. I know the dryness in my mouth has improved very slowly since the end of my treatment. I know on this discussion board we are all at…
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Sun Sensitivity Advice please ?
HI Posters. I will shortly return to the Southern Hemisphere where it will be mid Summer and I will be exposed to a lot more sun. The Doctors said not to go out in the sun during my treatment (RT and Erbitux) but I am unsure of how long that should be for ?? I am in my 8th week post treatment. Obviously i need to be…
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wife of tongue cancer survivor
My husband finished his radiation treatment (33 treatments) and chemo (3 days a wk, 3 separate times) on 10/8/09. Four weeks into the radiation he began using the peg. He has about three or four ensure plus a day which in my opinion is not sufficient (lost 45 lbs.). He is just about eight weeks post treatment and can't eat…
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Dental Concerns
Hi all, I have a Dentist appointment this Friday and was wondering what kind of dental problems if any that any of you might of had from your treatment. My cancer was dicovered back in May by my Dental Hygenist during a routine cleaning and exam. (She found swollen lymph node on one side of my neck) This Friday will be my…
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Done Deal
I wanted to say thank you to everyone who helped me through this ordeal. Hopefully I can be of help to someone. Alex.
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getting off pain meds
I need some advice about getting off pain meds. My husband started wearing fentynal patches two weeks before his treatment ended 5 weeks ago. He was at 50 mcg for much of that time, and now both the doctors and Kevin are ready for this to decrease. Last weekend Kevin decided that he would quit cold turkey (a REALLY bad…
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Another Day - another side effect?
Hi all! Maybe someone can help me with this one. I awoke yesterday with sharp shooting pain in back of my skull. I went to my regular MD, and he feels it may be nerve pain and suggested an anti-inflammatory. I tried over the counter (Motrin, Advil etc) to no avail. He suggested Celebrex, which I tried, but it really did…
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New Here
hi I am a 16 month cancer survivor of the tongue, it was on the side of my tongue, lesion and tumor about 2cm. My doctor removed it and he cut into my neck and it did not spread. he said the tumor was patented? What does patented mean? I'm freaking out. yes I did quit smoking 3 months after surgery and started due to…
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Phlem:(
Hi Everybody! Hope everyone is on their way to wellness:( I have a question about spitting up phlem. I had my last radiation treatment 24 days ago, and I had not stopped spitting up phlem!!! It is constant. Does anyone have any idea how long this goes on for? It's one thing that is keeping me home. No one wants to hear and…
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DCa drug to cure cancer
Has anyone heard of this drug called DCA? There is a Dr. Evangelious Michelakis, at The University of Alberta, Canada. Who claims this will cure cancer. You can google DCA and get more info. Very interesting!! But how can one get some of it? That's the big question:) Fishingirl (Cindy)
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CT Scan clear but excessive pain
Hi All, My Father got operated for tongue cancer which had spread to his lymph node. He underwent 6 cycles of chemotherapy(cisplatin was administered) and 33 days of radiation. He continously complains of excessive pain in the operated area and like lot of pressure being exerted on the jaw. he does sometimes have nasal…
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nanodiscs- cure for cancer?
Story is on Yahoo's front page, dated today at 4:18 PM, Eastern Time: "nanodiscs", which get implanted, and then subjected to a low magnetic field, can kill 90% of the cancer cells in just 10 minutes. They are described as tiny magnetic discs. Argonne National Laboratory in the US is involved, as one of the authors of the…
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Tinnitis
Hi all! I am hoping one of you many fellow survivors can help. I have been suffering with tinnitus since my chemo (cysplatin)& rad treatment ended 6 wks ago. I recently have had pain in my head and neck, which feels like a shock, but can come and go at any moment, and is continuous. My regular MD feels it is nerve pain. So…
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Ambertose by Manatek
I read in a discussion on saliva about Hondo using Ambertose at one point. I'm wondering how that did for you Hondo and would like to hear from anyone else who may have used it. A friend's husband takes it for arthritis and they thought it might help my husband who is 10 weeks post treatment for H&N squamous cell, occult…
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Loss of taste from radiation
Hi my name is Donne. My mom was diagnosed with Squamous Cell Carcinoma of the Tonsil (stage II) in mid September. She had her tonsil removed and had a feeding tube put in before her treatments began. She just started radiation/chemo November 9 and she is doing great she has really high spirits and enjoying her life and…