Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Head and Neck Cancer

Archives for September 2012

Toluidine Blue Stain question
Hi All. I have a regular appt with my ENT tomorrow. He is very good though I'm not as endeared to him as much as I am my Oncologist. He always does a scope and finger exam so I am expecting that tomorrow. However, a couple of appts ago (2 months ago) I had this raised spot / lump on the inside of my left cheek that I keep…
I've been on a food adventure... :)
I know it's a little early since I'm just at the beginning of my 3rd week post chemo, but I am SO hungry all the time. Last Friday I was able to return my dentures to my mouth, and tho it stung I forced myself to drink my VHC and Ensure, instead of tubing it...Anyway yesterday I went to Costco and tried nearly everything…
Surgery tomorrow
Well we just received confirmation of David's BOT surgery, using the Davinci robot for tomorrow. We are to be at UK hospital at 5:45 for an 8:20 surgery. Hopefully the second time is a charm, since last week we thought he would have surgery only to find out they had rescheduled and not told us. I am a little worried about…
First PET scan better than I expected
Just got the results today, of Thursdays PET scan. I was told my SCC is "regionally localized" , at least I don't have to worry as much about how far it has spread. I am gearing up to give this cancer one hell of a fight, and I hope to be NED in 6 months, and get on with life.
Xylimelts for dry mouth
I was actually excited to know that I left my water bottle on 2 separate occasions last week. There was a time that I never even sat it down let alone walked off and left it. Saliva improving :-) Matt, I'm going to give you the pat on the back for that one. I went on-line and ordered the sample of Xylimelts. I used one and…
Sore Tongue
Maybe I should know, after all I asked my RAD and ONC doc about the left side of my tongue but neither had a absolute answer. Its a sore that still persists 5 weeks after rads. I was dx with BOT with multiple lymph nodes. 33 RADS 2 Cisplantin 9 Erbitux / just not sure why my tongue was slightly disfigured on the left side,…
Tube feed formula vs smoothie/shakes
Nelson has had his PEG for a few weeks now and we are using the prescribed formula - Osmolite 1.5. We are having a hard time meeting his calorie goal and he continues to lose weight. We are able to consistently get in 4.5-5 cans of the 7 that are goal. Did anyone start on formula and switch to smoothies? Do you switch it…
Getting A Little Scanxiety
My scan is Wednesday and I see the doc on Friday. Getting nervous only because I know how large and widespread the tumor in my tonsil was and it was only partially removed during biopsy. I guess I should be more concerned about the lymph nodes but I'm not. I really feel like I'm fine now but its just one of those things I…
Can you share some smoothie recipes with me?
Okay...I've seen a lot of posts on smoothies in the past and I just got out the old blender and am wanting to eat a bit better ...so I thought I would try some healthy smoothies (for those of you who don't know, my pre-cancer life was a really bad diet - you don't get to be 320lbs and have a good diet). I might have had 5…
Just a thought ;)
There are SO MANY good responses on these threads, I wish there was a "like" button...THANK YOU all of you wonderful, caring people!
Quality of life (so to speak) continued w/more info - long
Thank you to everyone for your comments in my previous post on whether quality of life is or should be an option. This is long and I am sorry for that :( I also appreciate everyone's prayers for healing and our feeling overwhelmed. The overwhelmed-ness comes from deciding what to do. I'm not worried about the extra time…
Awful week - long post!
Hello all! We have been lurking here for awhile but after the last two weeks, need to compare notes with you and see if there were any similar experiences. I'm an RN, so I was hoping that would give me a leg up on handling things, but that has not always been the case. Wife first, nurse second. :) My husband was diagnosed…
Ok, now that I know it's chemo and Rads, what products do I need to gather?
Reading here you guys know what works. What do I need for my skin, mouth sores and all the other products to make this as livable as possible. Thanks folks, Joe
Dental visits
Hello everyone, from what I read most of us have our teeth cleaned 3 to 4 times a year. My insurance only pays for 2 cleanings per year, how do you get them to pay for all the cleanings we need?
It isn't Whooping Cough
The reason whooping cough was even mentioned is that I live in Snohomish County (Washington State) which has the largest current epidemic of whooping cough. So I text my Primary Care Physician. Since I said Whooping Cough in the text, I was initially treated in the parking lot. Nose swab plus vital signs. The physician…
Air travel, TSA and a PEG tube
Anyone have any experience with getting through TSA at the airport when you have a PEG tube? I will be traveling in the next 5 weeks to visit elder daughter in Orlando and will need to know what I'll need when I go through security. TSA's web site does not provide any direction. I saw a story on Drudge about an elderly…
Scan
Well, I have my cat scan of neck and chest on Monday, really nervous about this one after the discovery last May of a 4mm nodule in my lung. I am trying to heed everybody's advice about not to worry too much, but it's hard. Wish it were over and done with. Denis
How do you clean your teeth outside home
I start working next week and wondering what will be best way to clean my teeth at work. For me just brushing the teeth does not take away all the food from gums. I have to use waterpik at home. Would be great if you can give my any tips from your experiences, I have seen that gargling with warm water seems to dislodge a…
Tongue Cancer - Stage 1 - Surgery Successful
Dear All, Thanks for your great support for encouraging and moral support. My friend diagnosed with tongue cancer (Stage 1) 2 months back and decided to go for surgery. Surgery done on September 3 at Vellore CMC hospital, Tamilnadu, India. Dr removed 1/3 rd of the affected portion of the tongue and replaced with left arm…
Aren't feeding tubes fun
Got up this morning and prepared my blended gourmet breakfast in my Ninja blendsr; a great way to start your morning. I closed my tube to fill the syringe with water to flush the tube and when I pulled on the doo-hicky (plug) to allow me to insert ihe syringe the stupid thing broke off in my hand. Now this was a "first"…
Getting An Early Scan
Hubby has developed a "spot" at the back of his tongue that the doc wants to scan. Dale is 7 weeks post tx for stage 3 tonsil cancer. This "spot" won't go away so the ENT has decided to do a CT scan next week. Mouth sores were about the only side effect Dale did not have during or after his 34 rads and two rounds of…
Taste Buds and Eating Normal Again?
I was diagnosed with SCC on the right side base-of-tongue in July 2010. I started treatment in late September 2010. I had 35 radiation treatments and 3 chemo (simplatin). That was 2 years ago and I am doing great. The only thing is my taste still has not come back. I can taste food, and the first couple of bites actually…
Been a while
Been a while since I visited the site. Nice to see some of the old timers are still around but not so good to see so many new people. Looks like a lot of NED which is always encouraging. I recently had my one year eyes to thighs PET/CT which showed nothing unusual. No hotspots or abnormalities. Do most of you get the…
OHIO HERE WE COME
Hi everybody me and my family are taking a much needed vacation to NorthField Ohio we fly out today there be time spent at the club which will include a clam bake yummy,some ski shooting,the zoo and whatever else we can find to do my uncle is a 33 year survivor of vastecular,testecular,lymphoma cancer at the age of 22 he…
Cleveland Clinic advice? why are things are taking so long in Youngstown?
my dad was diagnosed stageIV A in head and neck lymphs, nodes, submandibular and above where his larynx used to be. he is a total laryngectomee 20 years now and the cancer is back. he is 85. it has been since early summer for the discovery and has been such a long process to this point. his PET and set up with his…
Coughing
Hi all, Hope everyone is doing as well as can be expected. I know so many are waiting on biopsies and to start treatment or to finish treatment or to simply start feeling well again so I feel a little silly addressing what may be nothing. I have a question, which is also a concern. I am 12 weeks from rads, 14 weeks from…
another NED
I am six months out from finishing radiation and had my second CT Skan. It was NED....all looks good. The 3 lymph nodes on the left side of my neck have gone from 12mm to 7mm. They are no longer larger the normal. They are shrinking and they suspect all that is left is scar tissue. I am feeling great. I feel like I am…
FINALLY HAVE A DIAGNOSIS AND PLAN
Hope all is well with you today. Yesterday I met with my Onco Doc, and I guess it went better than expected. I have Metastatic Disease in my lungs from my original SCC of my Tonsil and neck nodes. He says this is better for me VS A new primary in my Lung. Surgery is a no go as with Lymph Node involvement in my Mediastynum,…
Just back from MD Anderson
Well folks, that was an enlightening experience. They tell me that all in one day was extremely unusual but look at this schedule: 8:30 Met with head of Head/Neck department (he's a surgeon, that's important you'll see later) 11:30 Had video taken of my SCL/bot (pretty amazing) 1:00 Dental Oncology - Don't need any teeth…
Lookin' Like A Bunch of NEDs Out There!!!
So happy to see so much good news! Hoping I can add to the joy next week! I was originally scheduled for PET this week but asked doc to give me one more week to cool down. So I get PET next Wednesday and results on Friday. This whole process is so bizarre. One one hand, I cannot imagine anything other than living a long…

Head and Neck Cancer

Discussion List