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New Member to the "Club"
Hello all HNC'ers, Well, as others have said...not a club that you want to be a member of....but the community support, knowledge, and perspective is tremendous. First the facts: Diagnosis: SCC with unknown Primary, although Tonsil Primary is suspected. Currently, at the University of Florida Shands ENT. SCC diagnosed…
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Face Mask
Talk about claustrophobic lol I got fitted for the mask today. Told them clear me nasal and mouth passage and eyes. What a horrible feeling. Next week we start rad and I think following week is chemo. Gearing up for the long haul. Just purchased 6 cases Boost VHC plus, a Ninja blender etc.... Doc doesnt think Taxol/Carbo…
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Possible cancer again - need advice
I have been here before when I had tongue cancer and now I have a lump near my right tonsil that I am very concerned about considering I have had oral cancer before. I see an ENT to monitor my tongue cancer situation and he is a highly skilled and experienced surgeon whose practice focuses on head and neck cancer. He is…
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Bad news for those of us who enjoy Marijuana
According to the following research we may need to quit. https://www.ncbi.nlm.nih.gov/pubmed/31932491
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Easter
Wishing all the folks on the forum here a Happy and Blessed Easter. I pray for continued Blessing for all the folks on here as we deal with the good and not so good but no matter what keep looking for the positives in everything. All we can do is trust in our medical teams, trust in God, and deal with our situation at…
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Clinical trials
Sorry haven't bee on here for a couple years, been battling a ulcer, cancer on base of tongue, have been doing things like immunotherapy, then when that stopped working tried a clinical trial of high intense radiation treatments, that's kinda where everything gets crazy, mainly because the radiation caused lots of…
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Another Year
Hello all, yesterday was eleven years that I completed radiation. I thought the full neck disection was rough but the radiation out did that. It was HPV and decided in 2018 it wanted to do an encore in my right lung but **** got booed off the stage. Those five radiation treatments were a walk in the park compared 30 in the…
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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…