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Head and Neck Cancer

Best News from Bad News
Just got biopsy results back. And if one has to have bad news, at least there is some good components to it. The tonsil cancer has been confirmed, but so has HPV16. I am also being treated by a significant specialist in this field in Ft. Smith, Arkansas. So I am not pleased to be diagnosed with cancer, I am relieved that…
4.5 years NED scan
Hello all, Glad to announce a clean CT Scan today. 4 years 7 months since my last treatment. Had stage IV HPV tonsil cancer w/ multiple nodes involved. Rad and chemo, no surgery. I received the scan in light of some issues I am having with radiation damage in my neck, which made it a little more unnerving than a normal…
Poorly Differentiated Papillary Thyroid Cancer
Has anyone had Poorly Differentiated Papillary Thyroid Cancer. The cancer has come back twice and I have had two surgeries to remove the tumors. I am being offered 30 sessions of proton therapy as a prevetative against it coming back again but I am very concerned about side effects. I would greatly appreciate anyone's…
Odd Rad Side Effect
Had lower dose rads in 2012. Lucky for me my side effects have been few. Most are the same as everyone else. The last few months I've noticed my lips hurt if touched or opening my mouth wide. No cold sores pop up and it doesn't hurt if left alone. A very strange one indeed. Didn't bother to Google it as all the answers are…
Tongue Cancer
Hello I'm a new member on this Network. I had tongue cancer and went through surgery on my tonuge and also removed lymph node on one side. Now I will be going through Radiation therapy. Has any one used MuGard ? Does this help? Please advise. Thanks.
Never ends
Hi everyone, My name is Lisa & I had Ssc of tissue where left tonsil was. Tiny, had for 3 yrs all Drs I asked said it's nothing, irratition from allergies & a couple colds? Was sent to ENT for meds to control 365 environmental & 7 food allergies. Nothing was helping even steroid Sprays always coughing, sneezing, runny…
Easting After Free Flap Reconstructive Surgery
I had microvascular oral free flap reconstruction surgery in May 2020. Half my tongue was replaced with leg muscle and I haven't yet been able to eat solid food. I still have a feeding tube, but am adding in smoothies, soup, yogurt, etc. My question is - when will I be able to eat solid food? As of now, it falls down under…
My neuropathy...
My neuropathy may not be from chemo after all... or, at least, not totally. I started noticing the tingling and spiny jabs about 2 years ago - roughly 5 months post Tx. It wasn't pleasant to say the least, but eventually I was prescribed Gabapentin and that seemed to calm it down. After a year or so I began winding down…
Scared
At the end of February, I came down with a sore throat that never went away. No fever. No Covid symptoms. Mid-March we shut down here and my doctor went to telemedicine only. I had exchanges with my doctor every 3-4 weeks. We tried various antibiotics, allergy medication, nasal spray and I have minor Crohn's so I…
two year anniversary
Just had my 2 year anniversay since finishing treatment for stage 1 ( old staging system was stage 4A ) tonsil cancer with 4 nodes involved, HPV positive. Had 35 rads and 3 treatments of high dose Cisplatin. 70 greys to right side where all the cancer was located and 54 greys to the left side as a precautionary measure.…
still not able to swallow
Finished treatment aug 13th getting better in a lot of ways my problem is i am still not able to swallow nothing not water not even dry swallow almost likei frogot how they have giving me swallowing execerisesbut having trouble because they want me to swallow it feels like there is so much junk stuck in my throat feels…
Throat Cancer Follow Up Tests
I am 9 months post-treatment for throat cancer. I had a follow-up CT scan of my throat area in May because my insurance company would not approve/cover a PET scan, which is what my doctors wanted me to get. Fortunately, the CT scan was negative but I still want to get the PET scan and both my doctors and I believe it is…
Oral cancer from Nicorette Gum?
Does anyone know how to find information about tongue cancer from long term Nicorette gum use?
Ent or oral surgeon for tongue cancer diagnosis
I have had burning sensation top surface of tongue for several months. Acout one month ago had 5 large ulcers on sides of tongue. Went to ent and he gave me a mouth wash. About week later ulcers better. About 3weeks later felt ulcer type roughness top of tongue then one every large, swollen painful ulcer back on same side…
Ensure
My question is how long can someone survive on Ensure alone. My husband is 4 months post left tonsil cancer, somedays he will not eat at all this can go on for 4 to 5 days at a time. He will drink ensure, but food is out of the question. Has anyone else felt this way about food. Please let me know. Linda
Submandibular mass
Submandibular region node Had an incidental left submandibular lymph node 1.5 cm (nodule) found under left jaw - after ultrasound ENT doctor says it’s palpable though. I originally saw ENT for a boil abscess on right mandible rear section of lower jaw as it wasn’t clearing we believe this was where the novacaine was…
On the journey......
Hello......I’m back after a time, and just wanted to check in- thinking my husband will need everyone’s wisdom in the weeks to come. Things are progressing forward now. My husband had his TORS surgery 3-12. They were able to find the primary BOT. Small tumor...1.5 cm. He had bilateral neck dissection- both sides done…
Submandibular gland surgery and PA removal
Just wanted to ask it anyone on here had their gland removed and how the procedure went for them. I know it's one night in hospital because of drain that is removed in the morning. How was eating and drinking afterward. Pain level andor swelling? Thanks in advance. Scheduled for early October.
2 months out and backslide?
Hi everyone, My husband is now 8 weeks post treatement (35 rads/7 chemo) for hpv base of tongue. Started to improve very gradually around week 6 post treatment but now are back with major pain and liquids only. Thought was thrush but treated for that and didn't touch pain increase. Now doing another thrush medication to…
Continued pain at the site
My husband successfully completed his 35 radiation and 3 Cisplatin chemo treatments almost three months ago. Unfortunately, he continues to have a good deal of pain at the site where the cancer was causing symptoms, in the area of the ear. Jim had late Stage III/early Stage IV hypopharyngeal and base of tongue cancer.…
My Thomas is gone
Yesterday my Thomas started his new journey. He's now free of all the chemo and radiation and their horrible side effects. He's free of the hundreds of tests and infusions and lab works. He's free of the difficulty eating and breathing. Hes finally free. He fought one hell of a battle against the odds with dignity and…
Neck, Trap and Sterno muscle issues 4.5 years after treatment...
Hello Friends, I am 4.5 years out of Stage 4 HPV Tonsil cancer. I did NOT have surgery but had chemo and radiation. I have recently had issues with pain in my eye, stiffness in my neck, nerve pain issues, and started down the road of discovery. I realized I have atrophied Trapezius and sternoclaidomastoid muscles. The trap…
Radiation Induced Plexopathy
Hi All. I used to be a regular on this board. Diagnosed SCC unknown primary in April 2010. Had surgery only and was considered cured 5 years later. in 2017 I was diagnosed with SCC unknown primary a second time. Ended up finding a tumor on the right BOT. This time I had radiation and chemo and I am still cancer free over…
ROLL CALL 2020 - FIRST UPDATE, January 7, 2020
PLEASE READ ROLL CALL 2020 First UPDATE: January 7, 2020 I am early this year. Losing a special member like Miss Phrannie will do that to you. All H&N members are welcome! Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form…
Late Update--Just Info
OK, folks, I am doing a little catch up here but will try to make it as brief as possible. Whoops looks like brief didn’t work this time if you get tired reading take a break or just skip it. I apologize for waiting this long and making this so long-sorry. Not in perfect order that’s for sure. I had a CT scan with dye of…
Four year post
Lapped four years today, still clear. Neck gets stiff periodically, dry mouth continues to improve tho more slowly than earlier. Taste came back mostly. Some things are not the same, and there remains a residule of saltiness in the background. I have to be fanatical about sun screen on my burn area. If I had it to do over…
just finished
Done with treatment was a lot harder than i thought having trouble talking and not able to swallow throat feels like it is on fire since i can not swallow water not sure what to do they say give it time neck is also on fire and peeling wonder if any one has any advice on what to do thank-you Matt
Disappointed
Got scoped by the ENT I got sent to, locally, today. Being FT dependent, I told him I wanted to know about the openings for my esophagus and windpipe. Told me they have a new machine w/video. 1) He did a lousy job of freezing the area 2) He did a lousy job of not touching sides of windpipe with the video probe 3) Only…
2 yr and 7 month check up
Hey All, Just wanted to share a little good news I recv today. Had a follow up wtih my Surgeon today and he says everything is looking really good. Wants to do one more CT Scan of Neck and Chest in Feb (3yr mark from Surgery) and if that comes back clear and clean, then wll only need to start seeing him once per year!!!!!!
28 mos post
I had BOT HPV a little over two years ago. 35 rads and 8 weeks chemo. Just wondering how long certain side effects last. Dry mouth and cough at night when laying in bed, throat still narrow and choke when eat certain foods., always seem to have some phlem in the back of the throat. when I have a big yawn i can feel…

Head and Neck Cancer

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