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Thank the good Lord & my Doctors - I got the all clear today - :)
3.5 months after my last treatmet / Stage III base of tongue cancer with 1 lymph node involved. Radiation and Erbitux HPV+ Today was my first PET scan and CT Neck and Head scan / all morning ...saw the doctor at 3pm after all testing was down and I got the all clear. Onc doctor said he "thinks it looks great" ....said the…
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benefits of adjuvant chemo after concurrent radio+chemo in NPC
My treatment plan is being put in place except that my radio oncologist and medical oncologist have different opinions on whether I need that follow up cisplatin + FU5, called the adjuvant chemo. In my case, I was diagnosed as stage 3 NPC (T3N0M0, EBV+) in mid of April. The T3 is because the tumor touches bone structure at…
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When does speech therapy and/or swallowing therapy typically begin?
Hi everyone, I just joined recently to help find some more information for my Dad...He will finish his 2nd round of radiation (twice daily) and chemo (daily) on Friday. Despite a very swollen tongue still (went down a bit so that tongue was almost nearly in mouth but swelling still easily visible, until rest week 3 of…
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Starting week Four
So today starts week four of treatment for both radiation and chemo. Here's to approaching the middle of chemo! I know it's not the middle of radiation, because I'll cook for a couple weeks after, but it's still nice to mark some milestones! The lump of coal in my throat comes and goes. It turns out part of its return was…
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Need info on suggested treatment - Base of tongue - 1 lymph node - Stage III
Hi all. I am 3 months out from my treaments, but I have some questions. I went to the MSTI Clinic in Boise Idaho (great people, great experience) but I keep reading where many people seem to have had two things I did not have (if I am correct). So my question is what do you all think?? I was diagnosed with Stage III base…
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swallow exercises
What are the exercises you do to "fix" swallowing?
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Roll with the punches
"Roll with the punches" by Lenka, a happy song with lots of secret references that people on this board will appreciate! http://www.youtube.com/watch?v=XZaE4TY09C8&feature=player_embedded Dre.
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HNC cutting edge treatment-In the news
May cover story of SPOHNC (Support for People with head and neck cancer) AEROSMITH STAR:SAVING VOICES WITH LASERS Steven Zeitels, MD FACS, Director, Mass general Hospital Voice Center Eugene B. Casey, Professor at Harvard Medical School I found this stuff to be cutting edge. These guys developed a laser which feeds on…
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Squamous cell cancer of the tongue and lymph nodes.
I was diagnosed today with stage 2 squamous cell cancer of the tongue and it involves lymph nodes. I am 50 years of age and Doctor suggest radiation 5 days a week for minumum of 7 weeks and chemo as well. I am not sure either to do the radiation/chemo or surgery. I just want this out of me. And of course not to return. Any…
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Proton Beam Therapy
Anyone try this yet? Pat, I was thinking of you and the whole issue of re-radiation. I wonder if this very new and limited treatment would have less side effects? Hopefully I don't have to find out but it always pays to think ahead. Adam Yauch aka MCA of Beastie Boys fame is dead at 47. He had cancer of the parotid gland…
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Tongue not healing after radiation and chemo
My husband completed radiation and chemo the end of January for tongue cancer. He is still experiencing major pain and is unable to eat due to the pain. There is still swelling and raw places in his mouth and on his tongue. He did great going through radiation and the doctor is not sure why the healing process has not…
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Maximum rads
So I have a question. I've read in posts recently something about having been given the maximum amount of radiation. I'm naive, I guess, because I didn't realize there was a max level, but I did know it seems that everybody has about 35 treatments. So here's my question: is that maximum for your entire life, or if you have…
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scared to swallow... although I am cleared for thin liquids
Hello All Things are so much better than my last few post's. I am about 2 months out of treatment, give or take a week or so (I can't remember exactly). My mucous is soo much better, pain is way better and I do more today than I did 2 weeks ago so that is progress. My fatigue is pretty persistent and weakness comes with…
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Pain where the tumor was
So...Its definitely allergy season here in Salem Oregon and I got them bad. I take a allergy med and it clears a bunch of the symptoms but not the pain that is right where I had pain when I was diagnosed.Still there even with a lortab. I have a emergency scope set up for tomorrow with my onc but was hoping to get the CSN…
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Today's the day
I start on that bus ride with all of you! Had my trip and starting today. My session today will be 30 mins. they say and each day hereafter will be 10 mins. We'll drive 45mins to an hour to get there each day but thankful it won't be a all day deal! I'm apprehensive but hopeful and feel I can get through this and pray…
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I am either sleeping all the time or daydreaming..2 weeks post radiation
Hello.. Im back again..2 weeks post radiation I am taking the longests naps ever..I am normally one of those people that cant sit still and my leg is always bouncing because i need to get moving..welp now i just cant wait to get in my soft bed and sleep..Been having weird dreams too..no.. not xrated..This post is taking…
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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!