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Treatment far from home?
I live in Chicago suburbs, receiving treatment for recurrent SCC of the tongue. My tumor(s) have failed to respond to a Carboplatin/Abraxane regimen at the University of Chicago, and so far it looks as if my options there are palliative care or total glossectomy/reconstruction, neither with great survival rates. It's been…
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Jawbone Replacement due to disintegration of radiated jawbone
I have done tons of research on the best doctor and the best medical facility to have this procedure done. I have very strong opinions about this but hoping not to offend anyone would be willing to share them if there is interest. I was initially diagnosed with Stage 4 oral cancer of the tongue in 2002, I have had 5…
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Week Three- Finis
Today is the end of week three. I am halfway through. I wish the next three didn't seem like an eternity away. I felt my worst so far going in for the zaps today. It was meet with the doc day and I burst into tears (which is always a good look). I told her of my throat, mouth and ear pain. She gave me some liquid morphine.…
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My radiation recovery - Week 2
It's hard to believe I'm 16 days past my last treatment. My recovery seems to be going well, just slow as expected. But, I think I've turned the corner, at this point. I'm staying on liquids through July. The salty taste is just too much to attempt solids. Amazingly, I am still maintaining my weight with just 2 shakes a…
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Acupuncture Question
For those of you who had acupuncture to reduce or alleviate dry mouth....how often did you have it and for how many sessions? We tried the ALTENS clinical study which is supposed to simulate acupuncture but it had no effect. We'd like to try the real deal now. Hopefully a year out we can still reap some benefit. I know…
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After Surgery
Hi everyone.I went in and my a splint wired into jaw and he also trimmed gum lines as he did.He also from what I was told relexed my tounge flap somewhat.He also ran a tube down my nose to stomach so I get to eat that way again for a week or so.I found that I can't get implants do to the high radiation treatment as the…
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Week Three Done
Hi Everyone, Just checking in after completing my third week of rads yesterday. The fatigue is definitely starting to catch up with me and after each treatment my mouth feels a little sore for a while, but then it fades away by the morning. I have my magic mouthwash at the ready, but haven't had to use it so far. I've got…
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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! !