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Recently Diagnosed
Has anyone survived stage 4 pharyngeal cancer? Im diagnosed without staging but have had symptoms about a year now and was wondering if it's possible to survive worst case scenario. I'm 32 and this is pretty scary. Also if it is distant, would it also be in my lymph system? I've developed pain in my left rib cage recently…
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Post surgery recovery difficult
My husband is one-week post surgery; robotic removal of tumor from BOT; neck dissections of lymph nodes bilaterally. His cancer was squamous cell HPV. We're waiting on pathology report, but the surgeon said that the tumor was more involved than initially expected and that the lymph nodes were entangled in veins, nerves. So…
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GOOD NEWS...NED- 3 years out
Hello fellow warriors. Just wanted to report that my CT scan today came back NED. Oddly, had a panic attack while getting the scan and had to stop twice. Unusual for me since I was bolted down during rads 5 days a week for 6 weeks with no problems. My heart rate and blood pressure shot up and only until I sat up at the…
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advice on how to combat bad taste in mouth and excessive mucus
My husband is undergoing chemo and radiation for a Stage 2 HPV+ oropahryngeal cancer. He is taking all nutrition through the PEG tube due to difficulty swallowing and the horrible taste in his mouth. He is also experiencing a great amount of mucus. He has tried the salt, water, baking soda rinse - doesn't seem to help. Any…
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Hyperbaric Oxygen for Salivary Glands question
Does anyone have experience with hyperbaric oxygen treatments to improve their salivary gland functionality post radiation? Interested what the results were and if recommended.
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My Journey
So, I thought I'd start posting a blog as my treatment progresses. Maybe it will be of some help to those that find their way here in the future and regardless, it helps me to write about it. If you just got here, you can read re diagnosis and surgery in the 1st pargraph of the 1st post in the "Hello All" thread so i'll…
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3 weeks post treatments update: how long did it take for you to really start feeling better?
Hi, The journey continues ... Last 2 weeks of treatments were brutal. Ill spare you the specifics, but i can tell you fentanyl and oxy were my friend. Post treatment recovery started out slow especially with the continued mouth sores and sore throat. 3 weeks post treatments I am still experiencing some new mouth sores and…
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Questions for doctor
Those not knowing what to ask; you can use these as a base. Please add to it... 1. We know the cancer is Squamous Cell Carcinoma. It was in his right tonsil, right neck and lymph nodes. Are there any other sites (from PET Scan) that show cancer? 2. The cancer in the Lymph Nodes is it also Squamous Cell Carcinoma or is it…
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Mouth and Tongue Sores
Hi Everyone - I completed my chemo and radiation trial on 1/8. By Saturday morning I developed sores on my tongue and they start near the tip and go all the way to the back of my tongue. I tried magic mouthwash this morning and it caused the pain to INCREASE significantly. It almost brought me to my knees. I've searched…
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A Progress Report from Beagledad
[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 IMRT rads 60/54g] Good morning to you all! I am happy to report that last Friday, Feb 26th, I completed my last radiation treatment and am now on Day 6 of Recovery.…
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Chemo Belly
Good morning, folks. Here I am with 19 radiation of 33 done. 5 of 7 chemos (Cisplatin) done. I know I am heading into the tough weeks now. Thankfully, my doc is proactive and has already prescribed some liquid morphine for me .... don't need it yet but nice to know it is there with my Magic Mouthwash. I am asking for your…
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Post Radiation Swelling Question
Hey guys..I know taste and swelling are things that take a spell after radiation ... I have heard all sorts of timelines re: taste (as normal, everyone is different). How long did it take some of y'all for the throat selling to go down? I know I am only 10 days post rads, and am not being impatient..although I am..LOL.…
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Covid Vaccine
My Chemo and Radiation was almost 10 years ago now..... Should I be concerned about taking the Vaccjne? any input would be appreciated
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neck massage
my loving boyfriend was dx after 1 1/2 years of a hoarse voice wth stage 4 SCC of the larynx , trachea, strap neck muscles and thyroid. had total laryngectomy on 8/21/2015 and doing well with his 2nd week of radiation. But neck scar is stiff and I am looking for help with education on scar massage of the neck. Anyone out…
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How long does it take to get results of your PET SCAN?
Pet Scan is coming up for our loved one and we are seeing the doctor right after it's completed. Will we get the results immediately or is this something that takes days/weeks to get completed? We just got the neck and base of tongue cancer diagnosis 2 weeks ago and are anxiously awaiting for results to assure us that the…
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TORS oncological tonsillectomy No Radiation
Hi Folks, I underwent a unilateral tonsillectomy for biopsy it was HPV+ T1 SCC. Then 7 weeks later went on to have a selective neck level 4 (all clear) and a TORS tonsillectomy (Same side just full resection of tonsil bed) Sept 8 2020. I have been going mad with fear the last couple of months as I have these episodes where…
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Tightness in Neck and Jaw
I just joined this support group. I was diagnosed with squamous cell carcinoma located in my left lower jaw bone area in October of 2020. After two ct scans and one pet scan that showed the cancer did not spread to any other areas my bone surgeon scheduled my surgery for December 10th 2020. He removed the lower left jaw…
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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…