Hello everyone, I'm new here. I was diagnosed with HPV 16 tongue base cancer about a month ago. It seems to have taken forever to get to where I am now. I am getting the feeding tube next Tuesday on the 7th and I'll start the radiation and chemo on the 8th or so that's what I've been told. I would really like to hear from any survivors of this type of cancer. I really can't say I'm glad to be here. I wish I never had any reason to look up this site but it is comforting to read about others that have been right where I am now.

Thanks,
Curtis

Welcome but I'm sorry you have to be here. As you can see I am a 6 year survivor of the same type of oral cancer you have. I didn't allow them to put a feeding tube in me until after my treatment was over. I am probably going to start the feeding tube war all over again but I am not in favor of getting the PEG but I am in favor of getting the nasal tube only when it's necessary.

You didn't indicate if you have some positive nodes but that's usually how HPV+ SCC is found and most likely why you are getting chemo. What type and frequency of chemo are they giving you?

Have your teeth checked by a qualified dentist (one that's familar with oral cancer and it's radiation treatment) and get trays made for daily fluoride treatment. Start them ASAP.

Have your TSH tested in the next blood work they do and record that number for later on.

I don't card what your weight is but start eating all your favorite foods in great quanity, the fattier the better IMO. Have pizza and ice cream for breakfast if you want! You will most likely loose your taste and it can take a very long time before you start to enjoy eating again so eat up.

We will be with you and your caregiver 24/7 from now until you don't want us anymore. Don't hesitate asking anything.

I'm so glad you found this site, Curtis! You will find a wealth of all the latest, accurate information from experienced and compassionate people here. On the main site (click on the upper left box of OCF) you can look up anything that interests you and be able to formulate any questions for your doctors or for anyone here. My son is a 6 year survivor of OC and doing great now, thanks to all the help we got from the great people who helped us through it every step of the way. Stay close and let us know how you are doing.

Curt, welcome to OCF! You have found the very best place to get correct up to date medical info and support. We will help you get thru this.

The feeding tube has been hottly debated many times on this forum. David is one of the "no tube" members and I am one of the "get the tube" members. While we sometimes disagree, we both have the best interest of the patient in mind. I prefer to have every tool available to use to get you thru this. Its so much easier on the patient to already have the tube in place than to need it when its not there. You will be a bit sore for a couple days after getting it. Then practice using it so you will be familiar with it before you need to use it. I have many tips to help you learn how to use it effectively.

Try to eat all your favorites now. During treatment your sense of taste will change and things wont taste like they should. You also may have some difficulty swallowing so you dont want to go into this with any cravings. Eat it all now and then have seconds.

During treatment, nutrition will play a huge role in how easily you get thru this. Your body will need a minimum of 2500 calories and 48 oz of water every single day. Thats the bare minimum, more is much better!!! You cant skimp one day and thing you will make it up the next, playing catch up never works and you will end up in the hospital for malnutrition and dehydration. Its happened to me several times.

Line up all your caregivers and helpers now. Anybody who offers their help write their name and contact info down and tell them when the time comes you will call on them. Now is not the time to be proud, you will need help even for little things like taking the dog out or doing a load of laundry. Helpers can do many little things that will mean a whole lot to you when you are down. If you have young children, a playdate or taking the kids to the movies or out for some fun can be a huge help to everyone.

Keep all your medical info handy. I would take a notebook and get a business card from every single doctor or professional I had. I stapled them on the back page of my notebook so when I needed a doc right away it was easy to find them. Even if I wasnt able to talk, my son could get the right doctor by checking their biz card.

When you have time, please add a signature so we can help you easier. At the top tabs, click on "My Stuff", on the drop down menu click "Edit Profile". Scroll to the bottom and type your info in the white box and hit 'submit'.

Best of luck today with your surgery.

Hi Curt,
My husband Kevin had the same dx as you and David. David is right...eat, eat, eat. Kevin lost 56 lbs. Luckily he had it to lose and now looks great, but we struggle to keep him from losing more. He eats everything, but not much of it tastes good. As a result, eating is just something he HAS to do.
I am also wondering what chemo you are having and whether you had lymph node involvement. Please give us some more info if you can.
The battle is tough, but you can do it. Please keep in touch with us. We are here for you.
Blessings,
Kathy
Oh...ps...Kevin had a PEG tube but wished he hadn't gotten it. He only used it a couple of times except for the formula, but he did use it for liquid meds. It came in handy for that. I don't know much about the nasal tube so can't compare.

I had tonsil as primary with bot involvemrnt. I agree with what everyone said, including a feeding tube. I will be having Reirridation and chemo in September afget another recurrence. Good luck, and keep posting.

Paul, why are you waiting until Sept.?

Yes Paul... NOW! Though I suspect this is related to surgery? hugs

Thanks everyone for your advice. This Wed. will be 5 weeks after last radiation treatment. I was part of a study at Hopkins that uses low doses of radiation. I still had 36 radiation treatments and 7 chemo treatments with carbo because I had some previous hearing loss. I did have a lymph node that was removed and tested positive with SCC. The first ENT never did a scope on me before he removed and biopsied the lymph node which in hind sight makes me scratch my head and wonder why that was at the VA Hospital. That ENT sent me to the oncologist at the same VA who told me straight off if I could get treatment at John's Hopkins that I should do that because they had IMRT and this VA did not have that particular type. So I went to the ENT at Hopkins and the first thing she did was a scope and found the tumor on my tongue base immediately. She then did a biopsy of the tongue base and told me that it was cancer from HPV 16+. After all my treatments I'm now wondering if they got it all and what are the possibilities of it coming back? I signed back on here and I see a lot of people talking about recurrence with HPV 16+ so I guess now maybe I wish I would not have checked this out. I read somewhere that the recurrence rate after treatment for people with HPV 16+ was almost zero but I guess they haven�t been on this site. I am getting my feeding tube out tomorrow thank God! I called and told them I have been eating solid food for over a week and that I was ready to get the tube out so they agreed to remove it early. I have my first follow up on the 6th of Nov. I guess I should consider myself lucky. I read some of the other post here and see what others have gone through and are still going through and I feel very sorry for them. I just turned 47 and even though I know I should feel lucky so far about my treatment I am still feeling depressed. I start back to work next week and I�m not really sure I ready to go back but maybe it will help with the depression. So much on my mind and so much of this stuff to process. It is a bit overwhelming. I am not sure if I get the PET scan at 3 months after treatment or 6 month? I�m sure they told me but I was just so happy to finish my last treatments I think that info went in one ear and out the other.

Hi Curt,
Glad you posted. It's good to hear you are doing well.
Kevin got his feeding tube out early too. It creeped him out!!
I don't know about the HPV+ recurrence. We have a much better chance of not having recurrence than HPV-, so try to relax a little.
Both Kevin and I were very depressed after tx. I think a lot of it is that you fight like a dog for months and then poof, you are back to work. The c weighs heavily on your mind in the beginning. We are just getting to the point that we aren't obsessing about it, so don't be too hard on yourself. We are exactly one year out. Just had a clear PET.
If they do the PET at 3 months, try not to freak out if it shows activity. That happened to us and it was just inflammation. Remember that it's not a recurrence until you have a biopsy to prove it.
You don't have your signature at the bottom of your posts yet. If you go under the "my stuff" you can add a signature that will show us exactly what you have been through. It makes it easier to understand without having to go back to your original post. I'm saying this because I am wondering if you had Cistplatin for your first chemo? Is that where the hearing loss came in? Kevin has lost quite a bit too, and I know Davidcpa has mentioned it as well.
Don't be afraid to ask your doc for something for your depression. It's a very natural thing at this point and you might struggle for this first year post tx. Many patients and caregivers find we need something to help lighten the load.
Please keep in touch. If you can help it, don't push too hard at work. Remember you will be healing for quite awhile and need all the strength you have for that!!
Best of luck,
Kathy

Curt,

Look it's very NORMAL to have a hard time processing all of this. Post Tx depression in varying stages is quite common in OC patients. Some process it themselves and some need professional assistance as we are all different. You mentally, your body physically and all your caregivers have been through hell so just take one day at a time. Forget the recurrence possiblities, it's most likely never going to happen and even if it does there's nothing you can do to prevent it so why worry. Concentrate on your recovery which can and very well may take all of 2 years. Eat, eat and eat more at least for the next year as your body needs a tremendous amount of fuel to complete it's recovery. Feel good that you are cancer free and the treatment phase is history so look forward to discovering the new post cancer you.

Congrats!!