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Head and Neck Cancer

Need experienced - SCC of tongue - help plz
Hello all, I was diagnosed with a t4 tumour in my tongue in October of 2019. I was recommended to have a hemi glossectomy to remove a bit more than half of my tongue. this occurred in november of 2019. It was followed with 6 weeks of intensive radiation therapy Which ended at the end of January 2020. now unfortunatly, the…
Scan Today
Go for my PET scan today. After 9 and a half years with NED (no evidence of disease) n my ENT thinks there might be something there, but he is not overly concerned, easy for him to say. As I posted before I am very scared. I had HPV related neck cancer over 9 years ago. MY ENT at my yearly check found a massive infection,…
PSA Safe Grocery Shopping During Covid-19
Below is a link to a video by a Michigan doctor Jeffrey VanWingen, he posted a 13-minute video on safe grocery shopping in the midst of the coronavirus pandemic. I hope it is helpful to all. OK folks, Stay extra safe-Don't take any unneeded risks. Especially those in treatment or recently came out of treatment. Your body…
Outage
I haven't contributed many comments, At 47, just like OKC Native, I was diagnosed I'm just about 2 years post 33 radiation treatments/no chemo and I missed reading this forum. Now almost 50 , OKC is older... My two year anniversy is 3/30/20 from vocal cord cancer HPV+. I'm doing well and have been through a gallbladder…
Jaw Discomfort after reconstruction
Hi everyone, I was wondering if anyone has experienced jaw discomfort after their jaw reconstruction? My mom had a segmental mandibulectomy in November with a fibula free flap and skin paddle. 2 months after that she started experiencing severe discomfort which she describes as a heaviness/tightness in her jaw where they…
Chemo Radiation? Nerve? Injury Burning Tongue
I"m 7.5 months post treatment and am suffering from a burning painful tongue. It almost feels like its scalded. The doctors tell me this is a complication from treatment. Possibly nerve injury. Possibly a complication from chemo and radiation. Med Onc said it could take a year, maybe even longer to recover from treatment.…
18 month NED
Boy, it seems like this last 3 months went by rather quickly! But they came and went, all is good and now I'm closing in on that 2 year milestone. I feel pretty darn good and I feel blessed that things are going as well as they are. One of the nurse practitioners that I saw at my last visit said that most patients seem to…
Update and plans moving forward
Good morning! Just wanted to check in and say hello, and thank everyone for all the initial support I received for my husband! We met with the Head and Neck surgeon last Friday. The plan is to have TORS surgery in about 2 1/2 weeks to remove/ look for the Primary by removing and taking biopsies from the Tonsillar region,…
Checking In
Hello to all H&N members: Haven't been on forum in awhile, and just want to know how everyone is doing. Feeling better, or making any progress? Unfortunately, I'm still the same. (:Was diagnosed with stage 2 BOT, tonsil, and lymph node cancer). Had large tumor that extended from the base if my tongue into throat). 2nd time…
Lymphedema pump experience
Hi all. Saw a couple oler posts on here regarding lymphedema garments for the head & neck, and I decided I'd share my experience with mine for those who are curious about how well they work. A bit of history: In 2018, I was diagnosed & treated for a squamous tumor in my larynx. Had some post-treatment lymphedema that I…
How many with Zero Saliva & hypothyroid
I was DX in 2016 with what they thought Stage 2-3 SCC, HPV 16+, NO lymph involved on skin only where left tonsil once was. Thought base of tongue & possible base of lung. Tongue & lung ruled out right away. So basically Stage 1, Nicole to quarter size patch of skin would get red when scoped or My allergies would make Me…
Gabapentin Withdraw Issues
While receiving radiation and chemo for SCC (Stage Unknown - no stagging system for lacrimal sac SCC) my hubby was given copious amounts of Gabapentin as a nerve blocker for the treatments. The onc nurse gave him a generic 10 day taper schedule. We followed it and he completely stopped taking the medicine on Wednesday. He…
Update
So, 3 years out from diagnosis, I have 1 taste bud and it likes sugar.. My thyroid has bought the farm, its given up. My carotid is having issues.. And I have a rare side effect - Baroreceptor Dysfunction (my BP is way way low.) So what this means - I like sugar for the first time in my life - I have hypothyroidism, my…
lotions for skin burns
My husband starts his first of 35 radiation treatments today...should he be putting lotion on before he gets any kinds of burns on his neck or only after any irritation occurs? What lotions/medications have you been prescribed for the radiation burns? Thanks.
Late Radiation & Chemotherapy Effects-8 years out
I had tonsil cancer (T1, N2, stage 4, HPV+) with 8 weeks radiation (70GY), and concomitant erbitux biologic infusiion in 2012. I did lose taste sensations, during treatment, but they returned about 3-6 months after treatment ended. Now, after nearly 8 years out, I have suddenly lost all taste sensations, have a "deviated…
Another Chapter in my H&N Journey-Biopsy Today
Today 8/26/19 I got a biopsy of the lymph nodes in my neck I assume to find what kind of cancer it is so they know what they are treating. Such as what kind of chemo to use as an operation follow-up. The doctor took 5 samples to be sure they had enough. Plenty of local anesthetic was used so it was pain free and they made…
Scared to Death.
When I was 16, I broke my neck in a sports injury. After 18 months in a Rehabilitation center, I starting to regain some movement of my extremities. That was in 1977. I have never drank, smoked, always had yearlly blood work, dental work done and stayed as heathy as possible over the years. Three weeks go, I felt a lump on…
Transitional Cell Carcinoma in my tear ducts
Just wondering if anyone else has been diagnosed with Transitional Cell Carcinoma of their eye? I went blind briefly in my right eye in February of 2016, radiologist missed the obvious tumor on MRI review, so it was another 9 months of growth until my right eye started to bulge out. A CT scan showed a mass the size of a…
2/12/20 update
Hello folks. Just sending an update on my progress. Monday the 10th was my last radiation treatment of 30 so I am finished with that. Nice not to have to go for radiation every day. The plan worked as they were thinking I could eat through the treatment and am still eating with no problems so far. Although from the lymph…
Radiation follow up
Treatment post-operation of the lymph node that was not encapsulated but had gotten outside of the lymph node. They call it Extra-capsular Extension. They removed the lymph node, some muscle, and a jugular vein. It was also on the carotid artery and they were able to peel it off. They are recommending follow up radiation…
Zippo Saliva & Over Radiation
Just wondering who else has suffered their loss of Saliva, have desert mouth 24/7, and constant sore throat & problems swallowing. In 2016 when I completed treatments had saliva, great taste buds, took swallow therapy since was on Feeding tube and transiting to mouth eating & swallowing again. Was amazed at the things I…
Tongue tiec
I had surgery for SCC a and now I'm tong8e tied.
Opdivo side effects
I have finished radiation treatment for metastisized HPV16 positive throat cancer. Spread to the lungs. Next treatment step for me is Optivo. Has anyone taken Opdivo. What were your side effects? How effective was Opdivo on your cancer.
Husband newly diagnosed......so scared !
Hello everyone! New to this forum and wanting to check in. My husband, 60, was just told on Thursday that the Cervical lymph Node biopsy he had done on Tuesday is positive for Squamous cell cancer. The general surgeon also said the pathologist noted it to be positive for HPV. I am beyond afraid right now....really in panic…
Metastisize to lung
I had HPV16+ tonsil cancer in 2016, stage 4. Had 35 radiation treatments and 5 cisplatin. Then in 2017 I had anotehr occurent on the left neck. Had partial neck disection, 35 treatments of prton radiation and 5 of erbitux. Now it has spread to my right lower lung. I am very discouraged. It just keeps spreading. Has anyone…
Only 2 rounds cisplatin
My husband only had 2 rounds cisplatin due to hearing problems developing. Completed all 35 radiation treatments without interruption. Anyone else experience this? We were told only about 50% complete all 3 due to side effects.
jaw bone replacement surgery
I had tonsil cancer in February of 2002 and as a result doctors removed my tonsils. Then, although my cancer was, as the doctors put it 99% gone, was advised to have chemo and radiation as a precaution. The radiation, a six week, daily treatment has damaged my jaw bone resulting in excessive bone loss and removal of 3…
Neck spasms
I've been totally cancer free for 4 year's had stage 4 Head and Neck cancer..caused by tonsilitis. Yes i have bad neck spasm..i eleviate that pain by meds(Oxrcodone and Heat....i learned that if my body temp falls below 76 my neck spasm start....i apply a mild heat gel on that area to help warm the muscles.....hope this…
Liver enlargement and Varices
Hello Head & Neck cancer forum, It has been months since my last post. I am home trying to recover from another painful esophageal dilation-- I have been having these over and over every 4 to 6 Weeks, since late 2018. Before then, I had them sporadically. But my radiation treatments for my head & neck cancer, summarily…
Neuropathy
I completed treatment (35 radiation, Cisplatin and 5FU followup) back in June. I'm still experiencing Neuropathy, in my forearms, hands and feet. My Oncologist said it should start fading in 6 months - and I'm getting close to that, now. But, I still have the numbness. It isn't painful - just irritating. I'm able to lift…

Head and Neck Cancer

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