Hi David,

His MO did not tell him about the water but I will make sure that he has 48 ozs a day.

He does not have flouride trays. He had one flouride treatment with a regular dentist prior to Radiation.

I don't know what TSH is.

They are not doing Chemo even tho the ENT and MO both initially mentioned it prior to the PET Scan.

He was tested for HPV and is HPV16 positive. (I think the HPV+ is possibly why they decided against Chemo).

Stacey

I'll let David deal with HPV as he is one of our experts
As for TSH, it's Thyroid Stimulating Hormones The Blood test for TSH can be done with the other blood test, all the doctor has to do is checking off two blocks on the blood test request: 866X- T4 Free, Non Dialysis and 899X- TSH.

I'm a bit of a nag on this issue because I got caught up in it.
If your husband does not have the actual TSH numbers from these tests , now, before finishing the radiation, even the smartest doctors in the world will just be guessing on what it should be. Why? The "normal " range is from 0.5 to 4.9 in some labs, and many endocronologists think 3.0 should be the highest. That wide range is meaningless for an individual, it's like saying normal weight for your height is between 100 and 200 pounds or maybe 250. Each weight can be normal for a thin ultra marathoner, or a burly football linepacker but not one for the other. So if the doctor says normal, it's meaningless to the individual if he does not have a pre radiation baseline.
If he gets his numbers now, then after radiation, they can check and see if his numbers are higher (which often happens and can be fixed with a pill)
So much information, so much worry, I am so sorry that you had to find this forum and that you are suffering through this. I know how hard this I found it and how hard it was on my wife.
This is a good place with good people, Welcome
Charm

Thanks to everyone! I appreciate all advice and helpful hints. It is very helpful to me to know that I can talk to others about this.

Hi, Stacey,
Where in Ohio are you? And where are you being treated? I got the fluoride trays and a feeding tube after my surgery and prior to my treatments. I did have chemo, as well, but my primary was on my tongue and my cancer was stage IV. I also had a port put in for my chemo. You will find a lot of support on this site, and you will "meet" some amazing people. Good luck to you and your husband on this journey. Caregivers are very special people. I couldn't have made it without my husband's care.

Hi Zengalib,
Thanks! We are in Cincinnati area and the treatment is by Oncology Hematology Care. They told me my husband would have been Stage IV if they found a Primary Tumor. My concern is it seems as tho the Radiologist, that read the PET Scan, thinks there may be a neck mass but the MO discouraged the radiologist from outright stating that on the report (MO seemed to think it was all b/c he had surgery earlier). The radiologist wrote on the report that it could be due to surgical activity or it could also be a mass.

http://fnic.nal.usda.gov/fnic/interactiveDRI/index.php

Here is a link from the USDA for Health Care Professionals containing an "Interactive Dietary Reference Intake" by age, gender, activity. There are daily intake requirement Guidlines for oncocology patients too, who may have metabolic changes from the tumor itself, surgery, radiation, chemo that may increase Resting Energy Expenditure(REE), so the daily intake may be more. Head and neck patients may be more malnourished for these, and other reasons, but more in extreme excess is not good either since excess nutrients can feed cancer, and excess protein puts a burden on the kidneys due to them emliminating the Ketones in the urine, which may also contribute to dehydration, so if more protein is needed, so should the water.

The input for my age, 51, height 5'10" 180 lbs, and a sedentary lifestyle, showed I need the below daily requirements, but other input is not included, like tumor, type of chemo to flush out kidneys, etc. Its nor far off from another calculator for water, which comes to about 1/2 your body weight in ounces. Mine was 90, plus more from food. I also read elsewhere that 80 percent of your water need should be liquid by mouth, and 20 percent by food for cancer patients.

Caloroes: 2438
Protein: 65g
Fat: 54-95g
Carbohydrate: 274-396g
Total Water: 3.7 liters (about 16 cups = 128 ounces)

I hope this helps

Paul,
Thanks so much. My husband is 55, 180 lbs, 5'10" and sedentery. I appreciate the help.

Thanks

Hi KP5,

Thanks. It is great to have a place to talk to fellow caregivers. We have sons (in their early twenties) that leave the room if I cry. No one wants to hear the possible 'bad' side of any of this. I am totally different and I would want to know what could possibly be ahead so I would be prepared to fight it. My husband is already talking about stopping RT because he views it as prevention only. I am more determined to keep him in RT tho.

I will keep hanging in there.

RT is not prevention, it's the only thing potentially curable, besides surgery, and Chemo does not cure our type of cancers, it only assists radiation work better. Do you know how many lymph nodes were cancerous, and what levels in the neck they were from?

Stacey, quitting is NOT an option! Your husband hasnt even gotten to the difficult part yet. He needs to be educated about oral cancer! Many caregivers have their patients who dont want to know anything about the ins and outs of treatment. They dont do research and dont realize oral cancer is a deadly disease. I started out unaware but quickly learned that its not going to just go away on its own. It needs to be hit with all that is available to get rid of the cancer so it doesnt return. Many caregivers will print things out pretending they want to read them later, only to leave the papers where the patient will "accidently" find them and read the info. This would probably turn your husband around without you confronting him and it becoming an argument with him thinking you arent on his side of this.

Being a caregiver sure isnt an easy job!!! Dont forget to take some time every day even if its a couple minutes to walk around the block or a long hot shower to clear your head. You have alot on your shoulders and can use support as well.

Sorry to hear your sons dont understand everything either. Its a very hard thing for a child to be faced with their parents mortality. My children had a rough time of it too. My daughter didnt handle it very well at all (any of the 3 times I went thru it). She would cry everytime she looked at me and would tell me she didnt want me to die. My son was deeply affected as he ended up being the closest thing I had to a caregiver at the age of 17. Since your boys are in their early 20s please consider talking to them about getting the Guardisil shot to prevent the cancer causing strains of HPV (16 and 18). This shot is available to both males and females ages 13 - 26 (pretty sure this range is correct). It took me some convincing with my son, but he is getting his third shot of the series next month. I had my daughter immunized when it first came out and was controversial, I think she was 16. Since your husband's OC is HPV+ they may be easy to convince by telling them they dont want to get OC. There is tons of info about this and all kinds of other important things on the main OCF pages. There you can print things out about treatments and all kinds of other info.

So glad you have found the forum to help not just your husband but also you and your family get thru this. Dont worry, we are right here with you. Best wishes with everything!!!!