My name is David, I'm 60 yrs old and live in Northern California. In nov, 2007, as my wife and I were preparing for a 2 week trip to Puerto Vallarta, I discovered a lump on the right side of my neck. Well, I really wanted to go to Mwxico so I didn't say anything. Shortly into our trip my wife, who is an RN, noticed it and thought right off that it may be cancer. That put a dark cloud over our trip. When we got back home I went in to have it looked into. Was sent to ear, nose, throat doc who did a needle biopsy and confirmed it was malignant. Went for a pet scan which only showed the tumor on my neck and nothing else, so, the ent doc did an exploration of my throat and found the primary tumor on my right tonsil. By now it was into jan. 08 just to find the enemy. Finally started chemo on feb 1st and radiation on feb 4. Five days a weeki for 7 weeks on the rad and chemo every wed. Had wonderful support from my wife and step son but I admit there were times I felt like giving up. In may I had a pet scan which showed that the tumor had shrunk from 4.5cm to 11mm causing much optimism with the rad and chemo docs. At the end of aug. I had another scan which showed the neck area clear of cancer however there was something nasty looking in my right lung. I pretty much resigned myself to having to go through more cancer treatments and even surgery. A needle biopsy was done and after 3 days of sweating it out I got the word that it was benign and so I am cancer free. Now I'm just waiting for my taste to return so I can enjoy some real food. I know that that my salivary glands are probably a loss so it will take a lot of liquid to wash food down but that's ok, just as long as I can eat. I'm pretty tired of Ensure. But that's pretty small stuff considering that I am alive and cancer free.

That is a great story, David! I was born and raised in the Bay Area before moving to Ohio 14 years ago. Yeah, the taste and the fried salivary glands are not a lot of fun, but not bad at all, under the circumstances. At just about 14 months post treatment, my taste is about 85%. I can taste just about everything, but some things are still a bit off, and overall taste is a little muted from before.

As for salivary glands, well that has been a slower process, and I am probably close to as good as it's going to get. Lots of Biotene products and lots of water, and I can eat just about anything.

An inspiring story -- keep up the good work!

David,

Don't give up on the taste or dry mouth as the recovery in these areas can take up to 2 years. When I was 16 months post Tx I had a big improvement in both so as I said don't think you are anywhere near finished in the improvement category.

Watch out for your thyroid. Many of us had to start taking a daily pill months post Tx. Have your TSH levels checked regularly and especially if you feel tired and have sweats and feel cold.

Did they tell you what caused your cancer. I was a non smoker and tested positive for HPV. If you were not a smoker you are a good candidate for HPV as well.

Hang in there for a while longer and give your body a chance to recover from that barbaric treatment.

Awesome news, David! Welcome and I pray your current health status will remain and there will be no reoccurence for you.

Good job David and thanks for coming on board and posting. Like you I am waiting for my taste to return andf a sloppy mouth at times. LOL I miss them both but mainly miss my teeth. It's been a long slow journey so gfar, but as long as I stay one step of OC, I am winning the battle. Good Luck to you and wecome to our home.

Hi, I am new to the site. I am a caregiver. It is really difficult watching a friend endure chemo and radiation. He is loosing weight and I don't know how to help. He has a feeding tube but is not gaining weight. I try to remain upbeat but it is very difficult. My friend has throat cancer but was never a smoker or heavy drinker. He has had one infection with the tube and was readmitted to the hospital. The infection is gone but now he can't gain weight. Any advise?

Thanks for the welcome. I didn't mention that I quit smoking 20 years ago and am a light drinker. None of my doctors has mentioned the HPV virus, they just kinda say "luck of the draw" because they don't know the cause. Well, I'd rather that "luck of the draw" work for the lotto but, there you go. As for gaining weight, I've been downing 2800 calories a day of Ensure and lately have been able to eat ice cream and the weight is coming back very slowly. I lost 45lbs and have gained back about 8 here 6 mo.s post treatment. Everything seems to happen very slowly. Best wishes to all;
David

Welcome to the site David. You sound like you have good perspective on your situation - you are right - things will come back but it takes time and patience is a virtue some of us have to work at!

Keep posting.

Donna

Even today many doctors do not even recognize HPV as a cause of the type of cancer you had, much less advise the patient that a test for it exists. Mine fought me at first and I was seen at what is called a Comprehensive Cancer Center. I had to twist their arm to send my biopsy slides to John's Hopkins to get tested. That was 2 years ago. Now Moffitt tests anyone fitting the HPV profile. You may not care what caused your cancer but if you do check out HPV by clicking on it.

You also may want to check up on Carnation Instant Breakfast VHC which packs 560 calories in the same can as your Ensure. If your interested just ask for more details. It was a life saver to me. Even today I have a much harder time gaining weight than pre Tx and I seem to eat way more now than I ever could afford to.

Welcome to the site David! Sounds like your doing great...I've been here for about a month and from what I read, a lot of people gain back losses in the 16mo to 24mo post tx. I started my rad txs the other day and my RO told me take it day by day and about 3 or 4mos post tx you'll notice changes. So, I'm not going to accept my new normal until I hit the big FOUR ZERO!

Hi David and welcome. Glad to have you as a member. I love your attitude and hope that things get better for you in the eating department soon. Good things come to those that wait.

Kargeo,

You should read the first forum instructions for new members and learn how to start your own thread. It is difficult for us to keep track of you when you are hidden in another person's posting.

Jerry

Kargeo, your friend should be working with a nutritionist regarding his weight. If he is currently limited to what he can take in via the feeding tube, be advised that there are several brands of food that pack more calories per can than the regular ones. Nutren 2.0 has 500 cal/can vs the usual 285-300 cal/can.

If he can swallow and drink, Carnation's VHC packs 560 cal/can but apparently can't be used with tube (or at least insurance won't cover it).

This is Tom, my wife is GinnyLee. We live in Alaska and she had biosies in Aug with report of OSCC on her gingiva (gums) on 9/2. ENT referred us to Loma Linda Hosp where we met head of Dept of Head and Neck Surgery. CT Scan and chest xrays done and Tumor Board meeting today 9/23 and we'll get report Tomorrow.

We are snowbirds and winter in Desert Hot Springs and Loma Linda is conveniently close, however; how do we verify that Loma Linda and our doctor are giving GinnyLee the optimum opportunity for good treatment?

I've been working on a list of questions for when the doctor calls.

Thanks, Tom

When will you be traveling back to the lower states? Do a search under Comprehensive Cancer Centers and see if something close pops up. You really haven't said much about her cancer or their Tx recommendations so it's hard to comment at this point.

We arrived in Calif 9/15 and first appointment at Loma Linda on 9/16 and staying until ginnylee is better. I'm in the dark until we get the Tumor Board recommendation. Don't know stage of disease. Just trying to learn all about oral cancer as quickly as I can.

Tom

How do you retain your history at the bottom of each post?

Hi Tom,

I'm new here too, and it took a bit of trial and error to figure out some of this stuff. Go to "my stuff", "profile". Then go down to the "signature" section. That's where you can put any history info, personal favorite quotes, etc. If you go click on any member's name, you can view their profile and see how they wrote their signature sections. That's how I figured it out, anyway. I'll be darned if I can figure out some of those number * letter notations, though. My cancer saga started almost 3 years ago, but - as I said - I'm brand new to this site stuff.

Best of luck and I'm glad you found this site. I've only been here 3 days and I've been helped a lot already. I'll be watching for your updates and other posts.

Lani

Posted these some time ago but have listed them again.
Hope this helps.


BaCC = Basil Cell Carcinoma
Biopsy = tissue sample removed for microscopic examination
BOT = Base of tongue
Brachytherapy = Radiation therapy with internal radioactive �seeds�
CAT = Computed Axial Tomography (scan)
CCC = Cancer Care Center
CT = Computed (computer) Tomography (scan)
Dives = treatments in a HBO unit
DX = Diagnosis
ENT = Ear Nose and Throat Doctor and surgeon
FNA = Fine Needle Aspiration � (Needle Biopsy)
HBO(T) = Hyperbaric Oxygen Treatments
HIPAA = Health Insurance Portability and Accountability Act
HN = Head and neck
HNC = Head and Neck Cancer
HPV = Human Papilloma Virus
IMRT = Intensity Modulated Radiation Therapy
Met(s) = Metastasis or cancer spread
MRI = Magnetic Resonance Imaging (scan)
NCCN = National Comprehensive Cancer Network
PCP = Primary Care Physician
PEG = Percutaneous Endoscopic Gastronomy (G tube or tube) Feeding
PET = Positron Emission Tomography (scan)
PT = Physical Therapist
QOL = Quality Of Life
RND = Radical Neck Dissection (sometimes Resection) also Modified
RO = Radiation Oncologist
RT = Radiation Therapy also Radiotherapy (Radio)
RX = Prescription or treatment
SCC(a) = Squamous Cell Carcinoma also SqCCA and sq cell ca
TX = Treatment
Xerostomia = low saliva
XRT = X ray Radiation Therapy
http://www.oralcancerfoundation.org/facts/stages_cancer.htm

And here's the list of CCC's:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Gabe, there's an error in the list you posted -- A PEG and a G-tube are different.

The PEG tube goes through the abdomenal and stomach walls into the stomach; the G-tube or GN-tube is gastro-nasal and is a tube fed up through one's nose and then down the back of the throat into stomach -- GNT has no surgery involved unless they put in sutures to hold it in place.

At one time, we discussed putting all this pseudo-medical jargon in one place so it would be easy to refer to it and new members could find it, plus further explanations of things like Staging -- I personally know that it was a daunting task at first to understand this entire new language/code when I was rather distracted by what was happening to me, and I have to believe that was the same for many of us.

Gabriel,

Wow, thank you SO MUCH. I was starting to figure a few of them out, but this list explains SO MUCH. Maybe there's a place it can be posted somewhere in the "New Here" section? (Or maybe it is, but I just didn't find it yet.) As people log in I've been looking at their profiles to try and get to know them, as I assume they do when I log in, but this part was still pretty confusing to me. (I got the "SCC" one pretty quick, though)

Thanks again,

Lani

Pete,

Are we taking a vote? You know mine already. I vote for less confusion!