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Neck cramp/spasms
The fun never ends... I'm almost exactly 2 years out from surgery for BOT cancer/HPV/right side + full modified radical neck dissection etc. About 2-3 months ago for the first time I got a few neck cramps or neck spasms. Came on when I yawned; felt like a charley horse in my Adam's apple. Lasted maybe 5-10 seconds, not a…
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Surviving The Mask
For all about to start radiation with the 'Mask', I thought to start a separate thread as it appears many threads these days are getting too 'crossed' up and lose track of the original purpose or the poster. Micktissue is about to start so these and following posts may assist. Make sure the mouth piece you have has a large…
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Unlucky lottery winner. Spoiler MEC.
Hello Everyone, As you might have guessed from my username, my name is Dan. I couldn’t think of anything clever at the time of creation so the generic, “Dan The Man”, username seemed appropriate. While I find myself be to a new member of the club that nobody wants to be a part of, but I’m glad to be here with you all. Here…
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Radiation Hack 3 of 3 - Mitigating Dry Mouth & Throat
[P=L tonsil, S= 2 nodes in lymph. TORS with MRND. 4 of 5 negative margins, + on deep margin. This was followed up by 7 Cisplatin chemos and 33 bilateral rads 60/54g] I have to come clean here ... I think I was pretty fortunate. During my radiation I never lost my saliva. And I even maintained *some* taste; I could taste…
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Radiation Hack 2 of 3 - Dealing with dry snout
[P=L tonsil, S= 2 nodes in lymph. TORS with MRND. 4 of 5 negative margins, + on deep margin. This was followed up by 7 Cisplatin chemos and 33 bilateral rads 60/54g] I used this a lot post-TORS when I had that irritating nasal feeding tube. With that tube I could neither blow my nose nor wipe it. It was really, really…
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Radiation Hack #1 of 3 - Mitigating thick mucous
[P=L tonsil, S= 2 nodes in lymph. TORS with MRND. 4 of 5 negative margins, + on deep margin. This was followed up by 7 Cisplatin chemos and 33 bilateral rads 60/54g] First and foremost: I am NOT a medical professional!! Prior to taking ANY medication other than what has been prescribed, whether OTC or not, verify with your…
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Recently diagnosed, mucoepidermoid carcinoma
Hi all, i'm a 31y/o female new to the forums here and I just recently had a parotidectomy to remove a 1.5cm cyst just below my ear. I received the pathology report which ended up being a low-grade mucoepidermoid carcinoma. If anyone else has experienced this, how was your treatment? I don't know what is going to happen…
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Excessive saliva and blenderized foods
I'm having excessive saliva. On July 20, I had surgery to remove lymph nodes on both sides of my neck, removed back of my tongue and reconstructed the tongue with my pectoral muscle. I am on tube feedings. Not tolerating the supplement. Looking for guidance and suggestions. Has anyone blenderized food? Thank
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Criteria for Bilateral versus Ipsilateral (1 side only) neck radiation
What are others experiences and knowledge here? Most trials and articles now support ipsilateral neck radiation recommendation (HPV+ context) when positive nodes are only found on 1 side. Why are many centers still treating both sides of neck as protocol? Is lymph node size a factor or other additional criteria? Bilateral…
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5 year mark
I hit my 5 year cancer free date. I no longer have any appointments. The doctor surprisingly said the word "cured", which I liked, but will not fully believe. I just wanted to say to those who are in the heat of the battle, you can do it. I was stage 4, tonsil cancer. It was in my sinus, tongue, tonsil, lymph nodes....It…
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Metastatic Epethelial Myoepethelial Carcenoma
I had my Parotid gland behind my right ear out in 2007. In 2019 they found salivary gland cancer in my right lung. Had 1/3 of lung removed. In 2020 they found it in my kidney, froze cancer & took it out. Now it's in my liver & both my lungs. Would very much like to find someone who has had this kind of cancer.
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Thickening at the base of the tongue
Hello everyone my dad has stage 3 rectal cancer usually I post over there but today we got my dad's pet scans results . Well it looks like he might still have some cancer in the pelvis the FDG Uptake went down so they are unsure . Something else popped up on the pet scan report that his scarying the crap out of me the…
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Jaw Cancer Journey: Surgery, Rads, Chemo, & More
2019 was off to a challenging start. My mother, who is 62 and lives in Europe, was very suddenly diagnosed with aggressive and advanced squamous cell carcinoma (SCC) of the lower left mandible with spread to lymph nodes (PT4PN3B in cancer lingo). One day, we are celebrating New Year's Day in Florida, the next week we are…
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Please help! Much appreciated.
I completed my Chemo/Radiation in Nov. Here it is February, I am still in a lot of pain. I am using MuGard and Magic Mouthwash (4 times a day). I also rinse my mouth out with baking soda and salt solution 3-4 times a day. I take Tylenol for pain. Yesterday, I started to take Gabapentin (300mg). I had a PET scan 3 weeks…
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So tired
Hi. I first wanted to say: sorry, guys. I know I was quite active, during the first weeks of my radiations. Then I disappeared for a while, more or less. I feel a bit guilty, because I received a lot of support and good advice, and it feels a bit like freeloading, at this point. It's just that, during these last weeks, I…
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Bilateral Neck Radiation for Tonsil Cancer
Hi All, My first time posting here, this has been a great site to learn from and very helpful. I'm 2 months past bilateral neck radiation (50 gry/25 fractions) as adjuvant therapy post TLM surgery to remove left tonsil. I had a 2.3 cm primary on left tonsil and 2 positive lymph nodes out of 40 +removed from left neck…
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Cancer treatment what should i expect
new to this board and treatment for cancer in my neck and back of my tongue.The doctor at the VA(which iam very please with) said i need a feeding tube and a med port put in and i need to have all my teeths pull.Iam looking at to 6 to 8 weeks of chemo and radiation all this scare the hell out of me and dont have any idea…
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Base of tongue cancer non hpv
My husband finally got his official diagnosis today.Advanced base of tongue cancer that is also in lymph nodes which we knew.We were praying it was hpv strain but it's not.dr said he has 50/50 chance with high dose radiation 5 times a week sometimes twice a day and also chemo during radiation.Has not spread to other parts…
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Dr. Amit Agrawal The James
Hello My partner has been diagnosed with HPV neck cancer and is scheduled with Dr. Amit Agrawal at The James next week. Just wondering if anyone on here is a patient of his and could share your treatment experience with him. Thank you.
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Proteisn Drink
Does anyone have any idea how i can make protein drinks taste better,what can i mix with them.I try G-ade it was ok.I like to hear other input on the subject
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Yummy way to get flaxseed oil and ground flaxseed
The recipe I saw on the Budwig page called for 1tablespoon of ground flaxseed to be sprinkled on about half a cup cottage cheese blended with a teaspoon of honey and a tablespoon of flaxseed oil. This could be served on a bowl of fruit. The ground flaxseed was irritating to my mouth and chewing is such a drag right now. I…
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Advice/knowledge from those who have been there
I am 6.5 weeks out from finishing 30 radiation treatments and 5 Cisplatain Chemo treatments for recurrent Vocal Cord cancer. While I am making progress I have some questions for those that have been down this road. So first the positive items! My taste came back about 5 weeks in. Most everything tastes normal The constant…
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esthesioneuroblastoma
Hi everyone, i just try to talk to some people who have/had a same type of cancer
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Esthesioneuroblastoma Diagnosis
My name is Jeff and I was just diagnosed with Olfactory Neuroblastoma. I am very thankful that I found this board and can find out more about this cancer. The one thing I do know is that it is rare...very rare. I am in central NC and it seems there is a very limited niumber of physicians that can help. To add to my…
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Throat Cancer reoccurance- Laryngectomy in my future
Hello all, I had vocal chord cancer diagnosis in the fall of 2018. 8 weeks of radiation cleared it up completely and was doing well until this past spring. I noticed my voice deteriorating. With Covid I wasn't able to get scoped until June, but it looked fine. CT in August was fine. Voice continued to go downhill. I went…
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What should I try to eat?
I am officially 16 days post radiation treatment and today is the first time I could chew and swallow regular food. I have to keep it to one side of my mouth as I still have a lingering sore along the right side of my tongue that really hurts when anything gets in it other than a shake running past (even plain water hurts…
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Possible failed root canal / tooth extraction help needed
Hi all, I will be 7 years post treatment later this year. About 5 years ago, I had a root canal in a back molar. I'm experiencing some bleeding and am worried it may be failing. I have been to the dentist yet but plan to go. I'm very scared and worried about this. I wonder if anyone has experienced anything similar. I'm…
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Week 5 of 7
Week 5 of 7... In the middle of week 5, definitely experencing increased symptoms and the need of pain meds. swallowing has become more difficult, and i have a mouth sore that is painful when eating or drinking. The combo of the 2 are making things uncomfortable. Night time is the worse , due To increased dry mouth. Today…
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Late radiation effects, specially fibrosis
Hello again. I would really like to talk about late radiation effects. I tried to inform myself online as good as I could, searched the forum, asked my doctor (who mainly brushed it off by saying I shouldn't read too much) and I still can't decide what to think. I'm getting 60 Gy radiation to the tumour zone between my…
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VA Won't Pay f