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Two Year Update
Greetings, I relied so much on this group when my wife was going through HPV-16 squamos cell base of tongue cancer. So many people here helped us so much. Thank you. I wanted to share some good news hopefully to encourage others. Betsy had the surgery to remove the tumor, which was very small. They also removed all the…
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LOOKING FOR INFO AND SUPPORT
Good day to all! I never thought even six months ago that I'd be in a position to write this and I imagine that puts me in the exact position all of you once were in. I went to my PC doctor in December of 2019 and told him I was having problems swallowing my meds. He was concerned and referred me to an ENT who initially…
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10 years after radiation
It has been 10 years since my radiation therapy for tongue cancer. I still have horrible burning pain in my mouth with so many different foods and toothpaste is excruciating. Also, I have constant sore throat and earache. Does anyone else have this?
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Rhinectomy
I'm new here --but not new to cancer. I had a rhinectomy (loss of my nose) to cancer almost 5 years---yes--my 5 year survivor date is in October of 2003). I see VERY little on cancer in the nose and loss of the nose. My cancer started out as basal (sp) cell---I had 8 surgeries to remove a very agressive basal cell (don't…
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Anyone Else Facing Treatment Obstacles Due to Coronavirus? Stephenson Cancer Center Would Not See Me
I'm three years post treatment for stage three SCC head and neck, base of tongue, HPV related. It has always been instilled in me during treatment not to let my guard down and to make sure I'm doing my followup appointments because this sort of cancer has a tendency to return within 5 years. Well, I had a 6 month checkup…
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Caphasol or mugard?
I start my radiation next week. Laralyn and Phrannie, i have been all your posts and see that mugard seems to be helping you. Overall you both are doing okay and that is reducing my anxiety a bit. I read information on mugard and caphasol and looks like mugard might be better. However my doctor insists on caphasol, did not…
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Squamous Cell Ca Vocal Cord
My 66 years old mother had a hoareness voice for more the 2 months. She was told that she had a lesion Left vocal cord. After undergoing a direct laryngoscopy and biopsy of vocal cords the result was that she had traces of sq. cell ca. cancer on the Right vocal cord (strange enough). On the other hand she has been…
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laryngectomy My New Diagnosis - Scared but Also OK
Some of you know I have been struggling with this for a while. I am at the Cleveland Clinic. They are fairly sure I have stage 1 and at worst stage !! cancer of the voice box. Since I had radiation before (neck unknown primary) and even though it was 8 years ago they are very reluctant to do radiation again. The risks are…
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New member
Just started treatment for metastatic liver,lung SCC. Diagnosed last year with HPV tonsil cancer, had surgery in January 2019 and 35 rounds of radiation ,no chemo as they said it would not benefit me so I decided not too do it after 2 opions. They took out 70 lymph nodes and 11 of them where dirty, but did not leave the…
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portacath mri scan and head and neck scan
I was wondering if I had my head and neck and clavicle bone scaned for cancer. Would my portacath be seen or at least the catheter to my neck artery? I have found a scar were it was inserted into my chest after 20 years you would think it would be completly gone funny is I still can take pictures of the scar cause its not…
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For those considering Proton Therapy/Insurance denials
I've had a number of folks contact me via instant message regarding my experience with Proton Beam rads. Shortly after my treatment, I was asked to provide my story to The Alliance for Proton Beam Therapy Access Association. Sadly, only about 5% of folks wanting/needing radiation that helps protect vital organs in and…
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Deescalation of RT Dose For HPV+ Head-Neck Cancer
I know that Sloan Kettering is currently investigating reducing RT Dose to 30 Gy for Select Human Papillomavirus Associated Oropharyngeal Carcinoma. Does anyone know which other cancer treatment centers are actively involved in research, trial, or treatment regarding DEESCALATION OF RT DOSE FOR HPV+ HEAD-NECK CANCER?
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Cut Out Cancer Spot on Esophagus or? Experience Anyone?
If I cannot have radiation they may cut out the cancer on the back of my esophagus, a 1 cm spot, and replace it with a flap of my skin from my arm. I don’t think this is quite as an effective of a “cure” as radiation and chemo. Anyone know about this? Anyone had experience with this? My doctor thinks they can do some…
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Esthesioneuroblastoma
How many people had reoccurences of their cancer after treatment. Whether if was surgery, radiation or chemo?
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More FT information- amount/feeding
My Dr. rolled his eyes when I mentioned I had read One should not use more than 2 8oz. cartons of Jevity/feeding. The subject came up because I could taste the stuff- it was coming up my esophagus. Keep in mind there are 237mL/carton, and with each feeding One is supposed to flush with plenty of water to avoid dehydration.…
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Can You Get a Second Radiation? Really Scared Now!
There is a chance my neck cancer is back. It is not at all clear. I was told by the doctor at Cleveland Clinic over 7 years ago that a second round of radiation is possible. I had a nonspecific site neck cancer so they radiated my entire neck, but concentrated on left side, mostly left side. The cancer now appears on back…
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Dermal Mets...anyone?
Looking for options with dermal mets from HPV+.
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Don't know what to do anymore
Hello everyone! So, I had SCC tumor removed from my tongue March 2016. Overall, I'm very lucky. Clean margines, 47 lymph nodes removed all clear. Very lucky indeed as far as that goes. The problem is that I have been in a state of discomfort and pain with no relief ever. My primary care doctor does his best to help me with…
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Pentoxifylline + Vitamin E for radiation-induced Muscle Atrophy? Anyone?
Good day fellow survivors I'm a new member who accidentally found this site while searching for a solution regarding one of the late radiation side-effect that i have been experiencing. I was treated for NPCA on 2005 when i was 21 yrs old and there were no recurrence since then. Among some of the side-effects that i'm…
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Need advice Quick
My local ENT wants to remove my swollen lymph node this tuesday and have a biopsy performed. I received a call from MD Anderson team, asking me to wait and let them decide. What is recommended? I hate to leave it in for 3 more weeks before I can get to MD Anderson. Thanks
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We lost a very special member yesterday, 12/29/19
Hello all. I have not been here for a while but some members from here are also in a FB group. Our member known here as Phrannie, on FB as Jackie, gained her wings last night. I am pasting the post from her family so the info is correct and not miss stated. Phrannie was a great person, always positive and straight forward.…
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Neck Cancer Back Maybe and Terrifed
I have been cancer free for 9 years. I had HPV related throat cancer. At my latest visit to my local ENT he did not see anything he found that I had a very bad throat infection, no obivious sign of cancer. He then said I see someting on the left side that bothers him some, it was the infection, also scarring from radiation…
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what CivillMatt is up to
Hi H&N membes and anyone else who is reading this. I stopped in to see my ENT for a (self-approved) 8- year post treatment check-up very recently and left with a big smile and a renew confidence in my future prognosis. Let me tell you the conditions which spurred me on to go see him. One, is a little cough which always…
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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…
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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,…
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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…
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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…
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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…
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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.…
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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…