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Medicaid not accepted for my laryngectomy supplies?
HI all, All going fairly well lately. I finally got the right size Voice Prosthesis installed & I can now talk pretty good. That's the good news. I just had an appointment to meet with my Speech Therapist & she fitted me with a HME ( Heat / Moisture Exchanger )She gave me 2 starter kits that include all needed supplies for…
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Start radiation even if tongue is not healed?
I am scheduled to start radiation in one week, may 14th. My tongue is still not healed completely from the tumor removal surgery, did anyone start radiation before the tongue healed? My doc thinks it is okay to start but i am concerned. It is almost healed but it is still sore as not all the stiches are out. Thanks, Sam
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Neck Under Chin is hardening ...Normal? Can I stop that? Post Base of Tongue Treatments 3 mnths ag
Hey all. I know I have lots of questions since I am a newbie. I am now off all pain meds except about 2 narco a day and I take advil as needed for the swelling under my chin in my neck (seems to help until is wears off) ....but what I have noticed is how hard my neck is getting under my chin. Let me see if I can describe…
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Hello, lump of coal in my throat!
I guess I'm officially in week three, because now that the thrush is dying down, I have a burning lump in the back of my throat. Did it feel kind of like an obstruction to other folks? I guess that might depend on where you were radiated. My sessions have something like 12 positions (the doctor did a LOT of mapping),…
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getting nervous, finally hitting home
Hi So far nothing has really seemed real, that is until today. All of a sudden I am realizing that this is really serious. I have tonsil cancer stage 1 no lymph nodes involved, but the right side of my tongue is. I had the surgery last Thursday. It seemed too easy, surgery Thursday, home the same day and not much pain to…
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I turned 40 today....
Well as of yesterday.. It was just a year ago this month that I received the diagnosis that I had stage 3 NPC. Still rattles me when I say or write this. I am 6 months from my last chemo and am feeling pretty good. My taste is coming back and so is my energy. I know there is a lot of watching and waiting for the next…
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Beastie Boys' Adam MCA Yauch RIP
http://www.nydailynews.com/life-style/health/beastie-boys-adam-mca-yauch-dead-cancer-salivary-gland-rare-cancer-good-prognosis-caught-early-article-1.1072765 Hip hop fans everywhere are passing the mic in honor of Adam "MCA" Yauch, the founding member of the Beastie Boys who died Friday at age 47. The rapper died following…
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Tomorrow's the day..
My surgery to remove the nasty Stage 2 N0M0 scc tumor and surrounding tissue from the side of my tongue is scheduled for 3pm tomorrow, 5/4. I have to get to day surgery at 12:30 for xrays and more tests that my ENT has ordered. They didn't tell me what the tests are for and I forgot to ask... I think I've gotten kind of…
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Glioblastoma Multiforme Grade IV
My Mother has just been discharged from Hospital having experience a life threatening bleed during her Biopsy, here Gliobastoma cannot be operated on, and she is taking initially 12mg of Dexamethasone to be reduced by 1mg every two days until we find a sustainable level, she is given a median of 12 weeks, I am looking for…
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Hints for returning to work
It has been almost one year since my diganosis and treatment for the tumor at the base of my tongue. Prior to that I worked as a RN of hospice. I was healthy(I thought) and weighed 164. I now weigh 107 pounds and have been off work since last May. They have replaced my position due to the lenght of time I needed for…
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Taking Some Control at Doctor's App't
Saw my ENT today. I like him, think he's a great surgeon. I'm about two months out from having Cyberknife, which fried my tongue. This after a surgery in the same place two months earlier. I have a sore on my tongue right where the surgery and radiation were. It's mildly painful, but not awful. I can eat fine. It has…
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I've got a "rough" spot starting on my lower lip....
it isn't painful, but after Laralyn's thrush party, and then of course the normal stuff that can start in the mouth from rads and chemo, I'm paranoid.....is "rough" the beginning of something I should be watching...doing something about, before it becomes something else? The Onc gave me a thing of MuGard to have on hand,…
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Fungus party at my place!
Over the past few days, I noticed my mouth and throat getting super cottony, oddly painful and stiff. It was actually making my throat feel really full. I figured the treatments were finally catching up to me even though based on everything I read, it seemed a little early for that. Last night, I noticed a red patch on my…
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"bride to be diet" AKA feeding tube diet
Just out today, a new diet where a nose feeding tube is prescribed to patients, (brides to be), feeds 800 calories per day, promises 20lbs lost in ten days and costs $1500. I just cannot believe people would pay to use a feeding tube. Who would have known? Insanity? Never would I do this without having cancer!
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Stage 4 level A Squammous Cell Carconoma P16 POSITIVE SO HPV
Hi everybody i have posted on here before but after getting a couple of opnions i'm now going to be at MD Anderson in Orlando fl for all of my treatments i have met with all the doctors and they are suggesting 7 rad treatments on one side of the neck and Cisplastin once every 3 weeks so 2 maybe 3 chemo sessions they told…
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Dyna-splint
Three years after rads the trismus in my jaw has not gotten much better--probably even worse. I can barely open my moth wide enough to take in a grilled cheese sandwich. I tried a Dyna-splint right after rads and had a lot of problems with painful spasms--so I sent it back. The docs are now recommending the Dyna-spint…
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Another Biopsy?
Cancer Team wants another biopsy to see if they can confirm HPV+, not sure why it was not determined with 1st biopsy which confirmed SCC. My question is do I really need to know if its HPV+ and what does it mean if its not? I understand reading blogs HPV seems to have good results, but unless I missed it, it seems the…
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Next Phase
Hi All, I just wanted to give you all an update on my treatment plan. Went yesterday to do a followup with my Rad Onc. It has been one month since the end of radiation treatments. We had a really good talk about all my concerns and symptoms. He checked me out completely mostly looking for any lumps or bumps. All looked…
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Survivor Inspiration of the day!!!
Thought I would post this for anyone having a rough day and for those who are at the beginning of your battle! There is always hope!!! This was a recent post on the OCF website in there surviror forum!! Stage IV Tonsil CA "Ten years ago they cut the cancer away, then proceeded to nuke and poison any lingering little cells…
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Anyone had throat debris after radiation treatment
My husband had tonsil cancer (HPV positive) and is four months out of treatment. He had his tonsils removed and 7 weeks of radiation along with 2 chemo treatments (they told him he didn't need the third). The last couple of weeks he has had worse than normal throat pain, troat swelling and his voice is very hoarse. He has…
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Upper Tampa Bay ~ Trout and Cheese Grits
I know there are several of you going through tough times concerning saliva and taste. I went through those same issues.... Just know that more than likely it will get better for you, actually much better. So when it does, and you are pretty much eating good again....you'll appreciate this photo much more than you might at…
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Grateful for the Small Stuff
A very wise friend of mine gave me some great advice: "Don't sweat the small stuff." Then he said: "It's mostly all small stuff." May 15th will be the two-year anniversary of my completing treatment for stage 4 T1N2cM0 +HPV base of tongue. I've got all kinds of annoying residual effects that you've all heard me whining…
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Starting Second Week
Week 1 went incredibly well. All lab work was good and meds kept discomfort at a minimum. Most bothersome issue was the pain from the Nuepogen shots (for WBC count). Today at chemo doc increased the dosage (last week he did a smaller dose to ensure his kidney's could handle) so he's now at 60 mg once a week. Radiation, to…
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where do we go from here and what to expect-3rd recurrance?
hi everyone, not sure where to start. So after the surgery which my mom had on 3/1/12 which was a 3rd surgery since diagnosis in nov of 2010 we were planning brachytherapy for the tongue. So when we met with the doc to plan the treatment of brachy he said that there still may be some cancer left in the tongue therefore he…
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Pathology Results from Operation
Got the results through from my dissection, tonsillectomy and BOT biopsy this afternoon. Everything completely cancer free. 35 nodes levels I to V, all the soft tissue from my neck, tonsil and BOT all completely clean. This was a really good outcome. Firstly this means the outside chance that I am one of these rare cases…
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FOOD BUCKET LIST (the lighter side)
When I was 1st dx with H&NC and learning what the future would hold for taste buds and eating that I was going to have a Food Bucket List as long as I could until treatment started. I know some on this website have not started treatment so eating is likely / others who are in treatment so looking forward to their favorite…
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Where in the World Are You ~
Thought I'd bump this as there have been many new members the last few months that have not been added or might like to go on the map; Where in the World Are You Best, John
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Back Home and New Puppy is Home
Hi all: Got back from NC Sunday afternoon. Was a a good trip but rather chilly for a few days; now back in GA and we're having temps close to and low 90s! This is just May 2 I fear the worst heat is yet to come! Picked up Chargee Monday nite and he is now home with Sammy and me and doing well. Sammy is adjusting but will…
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Salagen ( Pilocarpine) 5 mg TABS
Anyone tried ,used, these. As they are not available in tab form in Australia I have ordered them from overseas.I have tried the eye drop solution (rinsed in mouth) it worked but I seated like a pig for the 8 hrs it was effective for. What frequency do you take tab.,does it take any time period before it starts working…
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2 year scan results
Howdy Kids! Just a quickie to say I had an all-clear/NED report last week on my 2 year post tx scan. For some reason no scanxiety at all on this one. Have a few side issues like being a smart arse and can’t keep the fish outta the boat (oh wait a minute those probably aren’t due to chemo or rads). Seriously, doing great,…