-
Transition from PEG to "real" food
I have really been struggling with the depression and anxiety lately, which doctors and everyone here has assured me is normal. One of the things that I KNOW would make me feel better is getting off this dang feeding tube. I know I shouldn't push it, but it would make me feel so much more like I'm headed in the direction…
-
Found New Help for Saliva
Hello All, My new fantastic Dentist who is very knowledged in new treatments and cancer, had me try a product that has come out and for me, it is fantastic! It is called "NeutraSal", a supersaturated Calicum Phosphate Rinse. Within 2 days I experienced a better result in helping my dry mouth. The best I have tried. You are…
-
floor of mouth resection
Please help. I'm in an absolute panic,I was diagnosed on August 18th with Squamos cell carcinoma in the floor of my mouth.I just met with a surgical team the other day and they want to do a floor of the mouth resection and take a skin graft from my thigh to rebuild the floor of my mouth along with a neck dissection .They…
-
New Memeber with decision to make
Hi. I am a new member. I have tonsil scc p16 HPV positive. And a couple or three lymh nodes effected. The primary was the tonsil and they took it out last week (It was 1.2cm) Nothing BOT or anywhere else. (I think I am getting all these acronyms correct :) . When they removed tonsil last week they confirmed it was the…
-
An Update
Hi all - thought I'd check in plus give an update of how treatment is going. Tomorrow I start my final cycle of chemo. This being Carboplatin, Paclitaxel and Cetuximab. I'm infused every Thursday and tomorrow will be number 21 of 24. I hate to say it but the Carbo has been tough. My body has developed a dislike for it and…
-
Tongue reconstructive surgery
Well, it's been 4 months and I'm still struggling with my tongue. It's apparent it won't get much better now that it's healed. I can't envision having my tongue tied the rest of my life. Has anyone had post surgery reconsruction of their tongue? Mine is tied down to the left and is having a significant affect on my speech…
-
MuGuard review
I've been using it off and on, but to be honest, the wait time between eating and drinking is an hour, and for that reason, I don't feel it was worth the hassles, and cost. It does work, but so did the Lidocaine swish and spit, or the swish and swallow pink stuff. Difference is that no wait time for the latter two. Thought…
-
Bleeding on neck
Does anyone have any advice on how to deal with bleeding on the neck? My husband finished his proton therapy yesterday and he has an area of his neck that keeps bleeding. It forms a scab but we have been putting neosporin and a non-adherent bandage on it at night so he doesn't get blood on the pillow. During the night the…
-
Burning Tongue and Mouth
Good morning, I apologize for all the questions this week but things are not good with my poor husband. Can anyone tell me the best relief for burning tongue and mouth? He has 6 rad treatments left so trying to help him make it.
-
5 week post treatment update + MRI
Doing well except for some remaining mucositis and light inflammation in throat. Fatigue is dissipating - walking 2 miles a day with some light weight workouts. Still on feeding tube and having a barium swallow X-ray tomorrow to see what kind of stricture is in my throat. Down a little less than 20 lbs.but stabilized…
-
mucoepidermoid carcinoma
Hello.... I would like anyone to get in touch with me that has/had the same thing i have....mine is in the base of my tongue...i can't see it but if you stick your finger down my throat you can feel it...(i didn't do that myself the dr did :-)) Anyways i have a lot of q's please & thank you
-
Three Weeks Down, Four Weeks Left
Hello everyone, I joined the board back in November shortly after I was diagnosed, just haven’t posted.. Since then its been a hell of a ride. I’m doing seven weeks under the mask and just finished week three starting week four today. So far I’m managing okay, I’m still eating but everything is soft, lots of soups and…
-
HE's for laryngectomees
My tracheostomy was performed July 22, 2016. I've been trying various HME's, and I find them very uncomfortable. I also know they are very important for a number of reasons, chief among them in my priorities is using the voice prosthesis effectively. Has anyone here had experience with this situation? Can you recommend a…
-
ROLL CALL 2016 - UPDATED June 27, 2016 (CLOSED)
ROLL CALL 2016 Updated June 27, 2016 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 Forum inspired him to start and run this thread (2008 thru 2014). Thank You. First off, please feel free to Enroll…
-
Has you tongue ever gone numb and turned white?
I posted this last week but recieved only a few replies. Hoping that ppsting under a new title will cause for someone similar to read and respond. I finished my treatment about 19 months ago. Have gained my weight back and life is beginning to return to my "new" normal. So I'm pumping gas yesterday and my tongue starts to…
-
Which oncologist to manage post treatment care
My husband has HPV+ oropharyngeal cancer. Primary tumor in left lingual tonsil with two lymph nodes in neck effected. We live in Utah but he is on his last week of proton therapy plus weekly Cisplatin at Scripps in San Diego. My question is who should be in charge of monitoring him when we return to Utah. This journey…
-
Appetite Stimulant?
Hubby is 6 weeks post last rad. Stage III tonsil cancer. He has been peg tube dependent for all nutrition and liquids since about the fourth week of treatment, so for about two months now. Doc is encouraging him to try to start eating some liquids, soft foods. He says he wants to but he struggled so much with nausea during…
-
Scary message from rad onc after the CT and mask-making
I just had my mask made 5 days ago. As you all know, they do a CT scan at the same time. Well, I got an email message from my rad onc early this morning, stating that he saw a number of lymph nodes on this week's CT scan that he thought may be wise to further investigate with ultrasound, and possible biopsy of the nodes,…
-
Struggling emotionally
I'm 2.5 weeks post ringing the bell and I've just been hit with the worst depression and anxiety and it feels awful. I'm constantly worrying that I won't be the same person I was before, that I will struggle to reintegrate back into our normal routine, that I will somehow fail at the things that used to come so easily. I…
-
TSH and T4
Got my 2nd NED today officially (6 months out). however, came back with high TSH (10) but normal T4. Going to be referred to an endo. Is a TSH of 10 high? It looks like the normal range is up to 4, so 10 definately looks scary to me.
-
Neck stiff and tongue feels weird
I am just over 3 years out from treatment. Everything has been going very well, then the other day I woke up and my neck was stiff, my tongue and chin felt like I pulled every muscle in my neck and mouth.It has since gooten better, but still has not gone away. There are no lumps on my neck or tongue, no sores or marks in…
-
New Member
My husband had his 8th Rad today for stage 3 tonsil cancer. Anything he can do to prevent mucositis and so forth. Is drinking lots of water, salt and baking soda rinses and mugard. I am very nervous about what is to come in the near future! Trying to head anything off if possible!
-
Week 1 of husband's lingual tonsil cancer
My husband was diagnosed with Stage III lingual tonsil cancer (left side) with left lymph node involvement. We are doing rad and chemo (Cisplatin). He started both on August 24th (Wed.) We were under the impression that things wouldn't get challenging until end of week 2 or 3 but Saturday early morning he woke with a…
-
Fatigue
I was diagnosed with BOT that had spread to my lymphnodes . Finished treatments 3 years ago three rounds of chemo 35 rounds of radiation so far cancer free at last week's check up .My question is does anyone still have extreme fatigue some days are better than others but never got my stamina back totally .
-
PET vs. Ct Scan
Hello, Monday I am having my second scan since I finsihed treatment in Feb. I am a bit nervous, but that is par for the course. The first CT scan as NED. My question is I often hear of people getttin PET scans. I have never had one, I have only had CT scans and am curious if anyone can tell why doc sometime do CT or PET…
-
Constant Cough
On August 5th. I had a tumor removed from the base of my tongue near my epiglotis. I have had a constant cough since the surgery. Has anyone else experienced this situation?
-
Bone Scan Wednesday
I do not work because of Cancer side effects. I had stage 4 sqamus cell carcinoma with 7/8 of my tongue removed and a secondary in my neck. I had a double neck dissection with cancer in my neck. I had 6 surgerys along with Cisplatin and radiation. Something my doctor thinks Cisplatin makes my joints hurt so bad i take 90mg…
-
Post Treatment Depression?
My husband finished radiation and chemo on August 22nd. No PEG through the treatment and he managed to eat through all but the last 2 weeks when he lived on Ensure. Last week he was hospitalized for 6 days due to dehydration and high creatinine levels. This was probably due to the chemo (cisplatin) as well as throwing up…
-
Week two post treatment feeling blue
Tomorrow will be two weeks since I completed treatment and I'm feeling blue. My energy is slowly coming back, although I nap at least once a day. Still not eating other than tube feedings because of pain, but starting to feel like it's a possibility. Had a lot of nausea last night and today (threw up tube feedings) and…
-
Did anyone else have a crooked smile after mouth surgery?
I had very noticable damage after my partial glossectomy...my smile was very crooked. Half of my upper lip (the tumor side) was significantly higher than the other half. It was really hard to apply lipstick. From what I learned through Googling, apparently the lingual nerve can sustain serious damage during surgery. When I…