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Worried !
Hi Everyone! Well, I am in 7 weeks past radiation and my jaw is starting to close more and more. I was doing the wooden sticks and had to quit because of the jaw pain . The jaw pain started as a result of a piece of bone that was sticking out from my radiated gum area. I had that taken care of by my ENT. I resumed the…
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Swollen Lips and ear aches
Today was rad number 11. My mouth already a war zone. I thought rinsing with salt water and baking soda would help. I rinse about 20-30 times a day Inside my lips have swelled and can't drink anything hot..,. Canker sores under the tongue. Makes it difficult to eat and tongue exercise. Any other recommendations on battling…
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Extreme Mouth/Throat pain 1 month post rads
Hello, First Time Post. My 42yo husband underwent 35 rads and 6 doses if Cisplation a month ago this week. He was treated for HPV/Tonsil cancer. His treatment was interupted for a week due to a hospital stay to treat slight pneumonia and neutropenic fever but he was able to get all rads and chemo as planned after he was…
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NPC treatment oversea
Has anyone have oversea treatment for NPC? I'm just curious and exploring all options. Since we are Asians and this type of cancer is more commomn in China, maybe getting treatment in China might be best. Unfortunately, moving & getting treatment in China is not an option for my cousin as she is the breadwinner & also have…
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Recently diagnosed with Nasopharyngeal cancer (Please advice)
Hello everyone. My mother (51 y) was diagnosed with nasopharyngeal carcinoma (early stage 2, according to the radiation oncologist) last month. We started her treatment 2 weeks ago. Her treatment plan consists of 35 rads, 3 chemo (cisplatin) every 3 weeks and then the oncologist said something about 96 hours chemo after…
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Paraganglioma carotid body
Can anyone recommend a center of excellence or surgeon for removal of this rare tumor? My 23 year-old daughter was just diagnosed and we are searching the country for the best surgery team to resect this tumor.
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Possible cancer diagnosis. Need help!
Hello. I am a new member here. I am yet to be diagnosed with cancer but fear that I may be in the very early stages of it. I am looking for help/advice on what to do, as my primary care and ENT have basically said they won't see me to discuss my cancer-esque symptoms anymore. For the past 8 weeks I've had pretty much the…
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Radiation fibrosis of the neck
Hi everybody, I had throat surgery back in March of 2017 to remove/rebuild most of my tongue, with radical dissection of my neck to remove lymph nodes on both sides, followed by radiation and chemotherapy four weeks later. After the radiation, I developed severe radiation fibrosis in most of the front part of my neck. Most…
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More than most people want to know about Lymphedema (and fibrosis)
Structure and Distribution of an Unrecognized Interstitium in Human Tissues https://www.nature.com/articles/s41598-018-23062-6 Translated I think it says our neck swells because it got beatup a lot.
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Anyone heard from Phrannie?
Anyone heard from Phrannie?
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My cancer has spread
Hi All, I might not see you for awhile but wanted to thank those who have supported me, listened, and advised. My HPV driven cancer has been cured in my neck but has spread to brain and lung. I was aware that it could happen so no surprise. A new immunotherapy drug for me and radiation plan, though much more gentle. I have…
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Husband had his first Pet Scan?
Hi Everyone, Although his results were good for the tumor which there is only a small remnant with no FDG uptake. We were told about two small growths on the lower right and left poles of his thyroid by the medical oncologist. When I questioned if they did a comparison to his previous scans, I was told no. Finding this to…
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Stupid Insurance!
So, my husband was supposed to have a follow up CT Scan tomorrow. He has only had one since treatment and it was clean (yay!). This was in August 2017 ... I think that was two or three months after treatment ended. Well, the insurance is not going to cover his scan tomorrow. I thought you were supposed to get a scan every…
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Treatments for necrosis
Hi has anyone developed necrosis From radiation treatment? My mum had snuc 5 years ago in her sinus’s and cribiplate bone and has recently developed a hole near the corner of her eye and nose. The dr hs said it needs to grafted in surgery to remove the dead tissue but they are yet to give her a date. The hole is…
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PET scan was good execpt for one thing
Was so hoping I could celebrate with Curlyn, Byebyecancer, OKCnative, and the few others that finished up their treatments about the same time as myself but I had one thing that turned out alarming on the scan. There was a "bright" spot ( SUV of 3.3) showing up on my colon that concerned the radiation doctor and now I have…
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Cisplatin Chemo Question
My husbands treatment plan for BOT HPV+ cancer has been 35 radiation treatments and 3 chemo treatments once every 3 weeks. He has 8 more radiation treatments and is scheduled for his 3rd chemo on 1/16. We’ve heard that some patients opt out of the 3rd treatment. The doctor also mentioned that some people can’t tolerate the…
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Best radiation burn creams?
Hi guys, While hubby is doing ok nutrition wise, he has developed a pretty nasty radiation rash on his neck and upper chest/back. We have been putting on aloe from the yard - any other really good creams or ointments that anyone could suggest? Thanks so much, Jen
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Nausea during radiation! Help!
My mom has had 7 radiation treatments out of 30. She is getting weak day by day and is losing her mental strength. Constant vomiting is just making it worse. Our radio onco says it has nothing to do with radiation. All tests results are negavtive. Did someone else suffer something like this ? Please help!
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Peg tube with pain??
Just a quick note. Did alot of you who had the peg tube inserted get severe pain after the procedure was done? I've heard some people say pain was really bad! My doc said I would only have soreness. I was just curious. Thx!!
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Maintaining Weight
I hope everyone is doing well. I’m 3 months post treatment and am having trouble maintaining weight. Ive had a peg tube since treatment started and hope to get it out in a few weeks. I‘m weening myself from the peg tube and haven’t taken TwoCal HN in over a month. I’m currently at 180lbs and eating at least 2500 calories…
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Voice back after tonsillectomy?
Howdy! So I've had the tonsillectomy and neck dissection. Next is the radiation and possibly chemo (the docs have to discuss chemo at the next tumor board). So, as a 45 year old, does anyone have a ballpark idea of when I might get my full voice back? I have been speaking at a whisper for 2+ weeks now, although for the…
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Correct answer please!
Good morning HN members I have a question that maybe someone can help me with since it's bothering me. I am going to have a peg (feeding tube) placement next week. The resident doctor scared me because he said a long tube will b placed in my nose and will go down esophagus through chest n go down More until it is next to…
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Got my PEG tube out and my colconscopy finally
Good news they only found one small polyp and should be ok. I'm so happy for a change and thanks for all the moral support from everybody on this site. You truely are my brothers and sisters and thanks so much.
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He didn’t get a scan, but...
My husband had a follow up physical exam with a scope, poke and prod (up the nose with an optic hose camera) and everything looks perfect! The doctor said a scan won’t be necessary at this time and he will see us in two months! :) . He is 8 months out of treatment.
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nasopharangeal cancer.
My husband was newly diagnosed with a cancer of the nasopharnyx. The doctors are planning to insert a tube into his abdominal cavity to help him, should he need it, take nourishement during his treatments. Has anyone had this done and are there any side effects from having it done. He shudders at the fact that he will have…
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First Week treatment
WED-Fri was rad and that was a relative calm experience. Chemo minus the port went ok except the numerous trips to the bathroom to urinate. I have taxol, carbo for aobut 3 hours. I did get a little nauseated, stomach wise and constipated. Does chemo get worse or pretty much stay the same?? Today I went to work after rad…
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1st rad treatment
Had my first treatment today.. Took awhile to get going because they had to redo my mask. Too much pressure on my adams apple. Once they fix that and cut the mouth out it was a breeze. My question is I am starting mucus in the back of my throat. Like when you come down with a cold. Is this possible after one treatment?? Or…
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CURED!
I had my 5 year appointments and have been deemed "cured" by my team at Johns Hopkins. I was hoping to be totally discharged but my rad onc wants to keep an eye on me and help me manage the side effects. I still have to have a yearly CT scan and swallow study but there's something about graduating from NED to "cured" that…
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Need advice
Hi everyone. Just a quick note to ask some insight and feedback. I am scheduled for rads next thursday then peg tube placement. Also on friday rads n chemo. Think that's too much at once. Has anyone had appts back to back like that? Kinda hard for ur body to take within 2 days. Please let me know. Thx a bunch!!
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Pet Scan Denied by Insurance
Hi everyone, I'm 45+ male that was recently diagnosed (last Friday) with HPV SCC and this is my first post. My ENT was able to snip a piece of tissue from my tonsil area to confirm the malignacy. My ENT submitted to have a Petscan and a CT done but my insurance (Aetna) denied the Petscan and only approved neck and chest CT…