Va,

First off it's better to start your own Post by entering the Forum that best describes your Post and near the top you will see New Topic. Click on that and type away.

To add your particulars under your Signature Line, go to the top of a page and enter the My Stuff tab and then click on My Profile and then go down to the Signature and type what you want and be sure to Submit it to save it. You can then modify it forever.

With that said, welcome and of course I'm sorry that you're here but you are fortunate that you found this site as it will be as valuable to you as your Tx.

As you can see I also had BOT with mets to my nodes and I also tested positive for HPV. Studies have indicated that the majority of Oral Cancers involving the BOT and Tonsils test positive for the presence of the HPV virus.

I too had Cisplatin but 2 years ago the practice was to administer 3 larger doses 3 weeks apart instead of the now more commonly used weekly approach. I had pretty bad side effects from the larger dose but others that have gotten the weekly seem to fair better.

One thing to keep in mind throughout your Tx and recovery is that all of us can react differently to our Tx so when we tell you what to expect, it's usually from our personal experiences so you may respond differently.

The first 2 weeks or so of rad will be fairly routine. You may even say "what's the big deal". Beginning around week 3 +/- you may start to loose your taste and your mouth may start to get sore. When that happens you will naturally loose your desire to eat but you must and I want to emphasize MUST continue to eat and drink everyday throughout your Tx. I like to say 3000 cals and 48oz of water each and every day. You didn't mention a Peg. Some of us get one and some of us don't. Regardless of that decision it is equally important to continue exercising your swallowing muscles daily. You won't have a choice without the Peg so it's important to remember that if you do get the Peg.

As you progress in your Tx you may loose your thin saliva and then your thick saliva as well leaving you with what is called Dry Mouth. Your pain may also get worse so it's important to stay on top of your pain meds. Again not all pain meds work the same for everyone so don't give up if at first something doesn't work.

Your hair on the back of your neck will likely fall out but it will grow back usually during the first year of recovery. Your whiskers may also fall out and mine never came back under my chin but they did above the chin line.

Usually the first 2 weeks post Tx are the worst time and then it's like one day you finally walk out of a tunnel and you begin your recovery where over time you will likely regain most of your taste and most of your saliva.

Whew, I'm tired of writing. I hope I didn't overload you with to much stuff going in but we'll be here throughout your trip so ask as many questions as you want. You can also vent like we all did.

Hang in there and before you know it you'll be an seasoned "expert" just like us.

Thanks so much Jeff. I have been 15 minutes just trying to find whether my message was posted! I had a time figuring out where/what to write in the first place. I'm thrilled to get a response.
Yes, I'm at a great place but they only have a support group once a month. So this site is exactly what I need. Everyone seems so helpful and positive.
Do I choose another thread now? or will people continue to respond to this one? How long after radiation ended did you begin to feel better? Best wishes to YOU. Nancy

David - You're fantastic. I found this site awhile ago but it seemed I couldn't figure out anything. Question #1 Tx = treatment? lol. Everything you said was very helpful and I'm so glad I'm finally on here.
Would you suggest that I go back and follow your first suggestion or just stay on this thread? I absolutely had no idea what to do after I did my first write up. I was thrilled when I finally found where it was posted!
Anyway, I live in Va. and have been going to Hopkins for chemo with plans to do radiation at a closer hospital but they ARE very good so we're renting a place over there (Baltimore, Md.) for the 7+ weeks so that will make life much easier.
Oh, and I already lost my hair on my head at end of first chemo. Great wigs at American Cancer Society.com Thanks and GOOD LUCK to you, Nancy

I would just start a new post with the same intro in the same forum. Like anything else, it just takes practice. Unfortunately you'll get PLENTY of that in the future. LOLWR (with respect)

Virginia,

Best to start a new topic....go to the top of a forum, in your case..INTRODUCE YOURSELF is fine. Once you have done that and told us about yourself, you can move your questions into new forums under say, CURRENTLY IN TREATMENT.

You did find how to fill out your signature but add to it. Date of DX (diagnosis) / date treatment (TX) start/ what kind of chemo and perhaps radiation details. See my signature for help. This keeps you from having to repeat a lot of info each time you post.

You are doing fine and we are all here to help you thru this. I think all of us would have liked the opportunity to get treatment at Hopkins so it looks like you seeing the best of the best and that is good.

Keep posting here, it will give you a lot emotional support and great information.

Deb

Here's a list of some of the Acronyms we use. Study them, test tomorrow.

Acronyms:
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
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WE all have different reactions to the Rads and Chemo. I had both in heavy doses , after they removed my teeth for them and rad seed implants in my tongue following the rads & chemo. I never lost my hair and was shaving 2 weeks after Discharge.When I got the implants, I was out in space for 6 days and have no memory of the week plus a few days before them and no memeory at all of a few days after discharge. I guess I did evreything that I wasn't supposed to do including a fast recovery . I was just told by my Pastor, that some had given up on me making it. LOL Try to tell everyone that I am tough and a fast healer. I believe your attitude makes the healing go your way. Don't ever say I can't but have the positive outlook. Nancy, if you post somewhere else, althio I have no idea why you would, post and let us know where you are.