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ENT
Saw my ENT this afternoon , scoped throat all is well. He asked about the gardasil injections I had, and yes I way exceed the age of gals & guys who should get them, he said since I was never a smoker and no evidence of HPV , that my stage 4A rt tonsil cancer may have been caused by something viral , he's glad my…
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Help for Dry Mouth at Night
My husband still has a pretty dry mouth at night - he hooked up a Camelback Hydration bag to the bed frame and now he doesn't need to get up to get a sip of water. Try it! Hope everyone is well and enjoying SPRING. Cynthia
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Juicer
My wealthy lawyer kid brother has kindly gifted me a juicer which is his latest health kick. He has read that therapy can be rough and wants me to get enough nutrition. He also tells me these devices are huge in the US of A. Any knowledge from my good virtual friends? Any good vegetable recipes as fruits tend to be high…
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What is standard protocol for post NPC treatment
I've been out of treatment for 4 months with PET scan negative and all normal. What is the standard protocol here on? PET scan every 6 months for a number of year? The doctor ordered for chest x-ray which I don't want due to radiation exposure. There is no indication for the order to begin with. Could this just be standard…
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Things moving quicker than originally planned
Good morning all. I received a call Friday from my Onco Nurse, she said he and pulmonary doc discussed my CT and the issue with my pleural efflusion not improving since the 8 weeks I habe been off Taxotere. Their consensus is I have a Para Mallignant Efflusion, since none of my lung fluid has ever showed the presence of…
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Jim coming home. UPDATE
They are releasing Jim on Sunday. He is so thrilled to be coming home. Pkease pray I can care for him, ie: help to turn him and get up to use bedside commode. Debbie
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5th week of treatment
starting 5th week of rads tomorrow..only 3 more weeks left of rads/chemo...anyone else about at the same point in treatment? I know there were several starting about the same time my hunny was...he missed a week due to his face/neck swelling and not being able to fit in mask..but is doing very well now...thanks to all the…
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One Year Scans All Clear
Met my DR yesterday and happy to say all clear exactly one year post treatment, Time really does fly. One can never relate to others that feeling in the stomach when waiting to see the DR to get the results. But boy does it feel good when you hear the words all clear! For those about to, undergoing or have just completed…
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Six month check up...Clean
Well my six month check up was all clean and good to go. NED. However I am having some trouble with my laryngectomee as my TEP [vioce prosthies] leaks when I cough. They think it is ok, and no need to worry. But in the next breath, they want to put a custom gasket in to stop the leaking. Well that didn't work and I had to…
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Things are much better now
Jim is much better but on a lot of pain medicine. He wants to come home but they feel he is not ready. He is so weak I am not sure I can help him in and out of bed. He wanted to turn on his side this afternoon and I couldn't turn him, had to get the nurses to do it. His digestion has slowed way down which is not good. I…
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Shingles
I have all of the symptoms for shingles in my scalp, ear and cheek. Luckily I don't have to worry about the eye, it's on the right side, same side as eye was removed. For someone pretty much numb from surgery, little bugger found some nerves that are still felt. I figured with all of the treatments that I have had that…
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portable sucktion machine
Ahhh finally heard when I can leave rehab.Have doing everything on my own but now I speach class using a vocal device on the trech.Anyway they are going to order me a portable suction machine to take home my question is can it be used in the car also.I thought I heard they can plug into the car and run on 110 at home.My…
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Throat blockage
Saw my onc doc today. He showed me photos of the inside of my throat. The food pipe is completely sealed it looks like a solid pipe. He said he was discussing with other surgeons what could be done , if anything can be done. He said he didn't force the probe down as it may go through my windpipe or rip my throat. He…
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Hospice Facility update 4/9
Today was rough. Slept well last night but Jim didn't. His daughter went to see him last night and was concerned because she heard a nurse yell at a patient down the hall. This morning when I arrived Jim was in a chair with a tray that locked on. He was hammering at it trying to get it off so he could get up. I went to the…
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3 year Dr. Appt.
My husband will be going to his three year ENT appointment. No scans just a throat scope like always. He is doing pretty good, he did have a spinal fusion last month and he still recovering from that. The pain/recovery from this surgery is tough.. Pray he can heal enough to go back to work soon... Thanks
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Genetic Counseling
Met with a genetic counselor today at Mayo. He was so informative and interesting. Thought you all might be interested to know that he said cancer of the mandible and oral cancers are not hereditary. 70+% of cancers are by chance. 15% or so are from shared family genes/similar enviroments (ex 2nd hand smoke). 5-10%…
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To tube or not to tube....
Friends, have sailed through dissection and tonsil removal. I meet team next week to discuss treatment and pathology. It looks like 6 weeks RT to start in a month to six weeks. Most people seem to favour a feeding tube. In about 14 and 1/2 stone. I could bulk up to 15 prior to treatment. Any thoughts from experience. My…
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Class of 2010
Hey Kids Wanted to say “Yo” to all my classmates of 2010 - hope you are doing well! Also thanks to all those old-timers that provided a lot of encouragement, wisdom & wit along the way. Wanted to say I truly admire those that keep on providing support here – Skiff, Matt, Phrannie and a host of others. (Big question, who…
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I made a Hard decision today.
I made the decision to put Jim in the Hospice facility today. the decision was very hard but after two days and nights with no sleep and another fall Saturday I had to so they could get his meds right. He was fine with it but when he found out I wouldn't be there he was not happy about that. I told him I would try to stay…
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First Gig Since Treatment!
Well.... I did it! My first public performance in a year and a half. When we drove to the mountain, the sign said that Skyland was "FULL"! That means a packed house in the lounge where I perform. The weather was beautiful albeit pretty cold at 3500ft but it was a gorgeous drive. Set up/sound check and hit the stage at 8:30…
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Worried
Has anyone heard anything from Catluver96 I feel concerned not seeing any news posts from her so long.
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I need someone with a paralyzed larnyx, and throat cancer to answer some questions?
I just came from teh docs today, good news the cancer is gone, and he said it looks permanetly gone...the bad side, he has it in his head I need to have a trach or somesort of airwave in my throat for extra oxygen, I have live wihout my trach for nearly a year, yes i get tired, and it's hard a night to sleep but i have…
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4 years today
Hi Everyone Haven't been on much lately work prevents me from having much of a personal life but hell, that's what keeps me so young looking. (I know, that would be my funny for the day) It will be four years today about 11:30AM that I finished radiation. I find it hard to believe it's been that long, but with getting up…
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Sleepy sleepy
How much sleep is normal at this point? I'm sleeping almost all day right now after 14 rads. I just can t wake up.
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radiation mask
Was fitted this week with Radiation mask. Had to be in for about 30 or 40 minutes while they did pet scan. Start radiation treatments next wed march 26th. 6.5 weeks 5 days a week. Any hints on how to cope with the being strapped in can't move freaking out feeling that comes with being in that mask. must admit Nervous. RK
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Side effects of the cetuximab
Got my first dose of cetuximb yesterday and the side effects kicked in in the early evening.Bad headachs,nausa,sweats then cold almost like the flu.Have meds that I have to pick up but wondering if the feeling this is gonna everytime.Or will my body adjust.
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Thyroid
I have read about Thyroid problems caused by radiation. What are the symptoms? I find I'm not regaining my energy, I'm tired all the time and find even walking up stairs leaves me breathless and my heart races. I've black out when I stood up too quickly. I want to regain some energy but seem to get weaker by the day. I…
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Sleep, wonderful sleep!
I had a wonderful nights sleep last night and so did Jim. I had my grandson move the spare bedroom bed into the livingroom a couple weeks ago so I could sleep next to Jim in the hospital bed. Last night I put him in that bed with me to see if I could hear him get up better. He slept through the night and only awoke long…
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Asking Again For Prayers For My Daughter, Johnnybegood - UPDATE
On Wednesday morning, Johnnybegood will be having surgery to correct her fistula. Her surgeon told her today that she will have a permanent colostomy. She is less than thrilled at this prospect, but must do it to survive. Although her lung function is compromised due to many tumors, the surgeon said it is acceptable for…
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frazzled
Hello everyone, Went w/my brother for recheck and answer question time w/his ENT. He defineately has HNSCC HPV+ with local mets (no known primary) They pretty much opened him up took samples and stapled it back up. The doctor said there was too much to surgically remove. The good news is this is very treatable, with a 95%…