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Open Sore
Hi All! I just had my 15 month all clear, I am so happy. I find it hard to come back here but I do stop by once in a while. I hate when I read bad news, this visit about Phrannie. It sucks. At my follow-up visit my doctor would do a needle biopsy at my tumor site which is on my titanium jaw replacement. It has not healed,…
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Margins unclear decision to make
Hi I had surgery in May for tumor removal that turned out to be olfactory neuroblastoma. MRI came back good - no spreading. Radiation oncologist has concerns because pathologist could not confirm if the margins were clean or not. So, do I have radiation in case we have cancer cells left or do the wait and see and if it…
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Jaw Pain
Hi! i had a laryngectomy last October and have experienced jaw pain ever since then. It is much like First Bite Syndrome where severe jaw pain comes with each "first" bite of a meal and subsides through the next few bites until gone. My situation is a bit different because I have a chronic underlying jaw pain most of the…
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Do I accept a doctors diagnosis that it "most likely" isn't cancer or push for more tests and a defi
Hi Everyone, I've been reading the forum for a few weeks and decided I should join and ask for advise. About a month ago I felt a lump inside my lower left cheek. It's not easily seen or visible when looking inside my mouth but I can feel it and if I stretch my cheek somewhat you can clearly see it. I pointed it out to my…
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No radiation or chemo
I am starting this to ask if anyone else here only had a glossectomy and partial neck dissection, with no radiation or chemo. Most everyone seems to have one, the other, or both. I'm just curious. I guess i feel lucky to have avoided all of that and am wondering if this is very unusual. (I had stage 2, but it had not…
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Scan results tomorrow UPDATED - a date with NED
and then we set sail! We get our next installment of scan results tomorrow - CT of head, neck and chest - 1 year post rads. I feel good about the results...with just a smidge of scanxiety. Friday we leave for Alaska and a cruise which we had to postpone when he was diagnosed 13 months ago. I'll be back to let you know how…
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Back in the saddle again
Quick catch up for folks since I haven't been posting here quite as often lately: I was treated for Stage IV HPV+ SCC of the tonsil and soft palate and lymph nodes in 2012 (chemo-radiation, IMRT, cisplatin). I was all clear until late 2015 when they found a large mass in my right lung and nodes around it (Stage III HPV+…
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Still losing Weight, "Burning Mouth" Pain Hampering Eating...Frustrated !!
I am sorry for not checking in sooner to support and congratulate everyone fighting the fight. Since my Mom passed away over a week ago I've been struggling with her passing, painful eating, and lack of energy. But I have been reading up and so many I would like to respond to personally. Until than, please know my thoughts…
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Not liking food or wanting to eat
I realized a long time back I am at an advantage when it came to difficulty in eating after the glossectomies--I have been a type 1 diabetic for nearly 45 years and I have little or no choice in eating. Once one takes insulin, there's no other choice. Since March of 2015, I've had 2 glossectomies, my top teeth pulled and…
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ENB diagnosis this week
So something I thought I would never say, I have cancer. Wow seems like a terrible diesase that the other guy gets. Still quite stunned and very emotional, which for me is new and terrifying all in its self. I recently had a nosebleed that was out of control and I couldn't get it to slow down let alone stop the bleeding.…
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Swallowing after radiation...
I read radiation can cause swallowing issues years down the road, along with other issues. Right now, my swallowing is fine, nearly 2 weeks post rads. Has anyone experienced swallowing issues months, even years down the road?
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Is radiation a good idea
Hi - I had a recurrence of an Olfactory Neuroblastoma removed on May 3rd. My first surgery was Sept 2014 and was misdiagnosed. It was later confirmed to be ONB. The results of my mri from 1 week ago, shows no cancer. The question is should I have radiation at this time or wait and have it if another tumor develops. Will…
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Week one done
Hi Everyone ,Shirley here with my week one report. So I've been pretty tired but it comes and goes. My tongue feels raw like i burnt it and i just today got a metallic taste behind my lower front teeth. Slight pain in the throat. Skin is doing okay as i have been slathering it with the cream i have after rads and before…
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Pain is tolerable but, Fentanyl?
I feel as if I could get by with extra strength Tylenol, doc gave me Fentanyl patch, with no warnings. Was reading the old thread about do's and donts, and I'm scared to use it. What are the usual side effects? Will I walk around all groggy and out of it? I have several appts tomorrow as well as two "tanning sessions" as I…
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Continue Strenuos exercise?
Found out 6-22-16 that I have cancer in my rt tonsil that has spread to 2 lymph nodes. Overwhelmed and trying to maintain a PMA. Gathering facts, getting 2nd and 3d opinions AND going for PET Scan Thursday which I am extremely nervous about. Part of me keeping sane is my daily work outs, P90X, which as some may know is…
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Week Two - Through
Hi everyone, Shirley here reporting for the end of week two. First of all I think I might be a super wimp. It has only been 2 weeks and i am suffering from mouth sores,super dry mouth, my throat feels like it's closing and i can barely breathe. My mucus is like rubber (gross) . I just asked today for the magic mouthwash.…
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4 Years!
Today marks my 4th anniversary of ringing the bell after the end of rads. Time has passed quickly but I do recall how those first few weeks seemed to pass so slowly that I thought the earth had stopped turning. The side effects were hell and healing happened so slowly as to be unrecognizable unless you compared it in…
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Struggling with eating
I think one of the toughest things for me two weeks in is dealing with how much of an effort eating is now. I'm still able to swallow without pain, but nothing tastes good, which affects my appetite, which then affects my mood and energy and so on. I've realized that I need to just move to tube feedings as I am struggling…
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Biopsy positive but PET negative
Tribes Posts: 1 Joined: Jul 2016 Jul 06, 2016 - 6:22 pm Biopsy for BOT 15mm mass positive for Squamous cell Hi folks, brand new to this group. 12 days ago was scoped and the mass was found. Surgery to remote it and biopsy done. Was told that I had stage 1, ordered a whole body PET scan with additional head and neck and…
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Ride for Roswell
What a difference a year makes! Last year I had to ride alone because my husband was in treatment for Stage 4 Nasopharyngeal cancer. This year we did 20 miles and crossed the finish together. The whole event consisted of over 7200 riders and volunteers and raised 4.5 million for Roswell Park Cancer Institute - a…
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And now the tears
I've had my moments of fear about what each week would bring, but as I near my 8 treatments crammed into 6 days, I am in tears because it's all so overwhelming and getting beyond my emotions now. The burning doesn't help, the incredibly heavy and painful tongue, the lack of appetite and feeling like I have to get a certain…
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is MRI enough to detect tumors in the neck or base of tongue?
I had a MRI of the neck yesterday. Can someone tell me if this is enough to detect tumors in the neck o base of tongue? Thank you! !
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Burns
my neck is beginning to feel hot and burn a lot. I've been using the aloe gel and calendula cream. Hoping the raw area does not get worse. My skin is much darker. it's very obvious. Does this ever lighten up?
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Gabapetin
My Doctor wants me to take gabapetin starting next weekend. I am just curious if anyone has taken this, does it help, and any thoughts about it. Thanks! Joanne
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Post surgery tongue reconstruction
Has anyone here experienced tongue reconstructive surgery after their initial tumor dissection? My surgery and post rad treatments, has left my tongue tied down on the left side, making speech quite difficult. I plan on asking my surgeon for options in a couple of weeks. I cannot imagine living the rest of my life in this…
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Emotional toll
I'm one week out from a 100mg dose of Cisplatin and still struggling with fatigue. Yesterday, after a foggy morning, I actually had a really great afternoon with more energy than i've had in a while. But, another bad night of sleep (struggling with gas pains) left me feeling quite down this morning. I have a nine year old…
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23 down ... 10 to go!
Hey guys! Sharing my current status. This morning was # 23 with 10 rads remaining. Could not recieve # 5 of 6 on Cisplatin infusion yesterday because my platelets were too low. All other labs were ok, just platelets were low. The knew another dose of Cisplatin would cause them to dip even lower and did not want to risk the…
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Epiglottis Cancer and Start of 6 weeks Radiation.
Hi Everyone, My name is Violet and im new to this site, im actually here for my Dad, I have been reading this site for a while now to find answers and help! The community here is truly amazing and i wish everyone the best! My Dad was diagnosed with Epiglottis cancer stage T2N0Mo SCC back in January 2016 and had operation…
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Recovery post radiation - Squamous Cell Carcinoma - tongue
I was diagnosed with Squamous Cell Carcinoma of the tongue on Apr 19, 2012, after Excision biopsy Conducted on Apr 14. Carcinoma was identified as Stage 1, T2, confined to Left margin of the Tongue. Underwent Brachytherapy in 5 sessions of 4Gy each, followed by 25 sessions of 2 Gy each Rapid Arc IGRT + IMRT on the Varian…
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Sore throat !!!
hey everyone, hope you guys are doing well and fighting well. I am having a horrible sore throat every signle morning though on september ill be 2 years post radio treatment!! any advice???