hello...i was recently dx with BOT cancer related to HPV...T3N2 stage...I had noticed the right side of neck became very swollen with no pain around holidays and my ENT had CT done to confirm mass on base of tongue was cancer...petscan was clear except for base of tongue. treatment starts in a few weeks with 7 wks radiation and 3 sessions of chemo--cisplatin? every 3 weeks apart. Get port and peg next week along with mask....I was only a social drinker but quit that and smoked(not very heavy)as well but since quit that as well....very scared and hardly sleeping since I hear of the horror stories with this treatment I am about to go thru...strange that I feel fine....I still exercise and have no sore throat or trouble eating or swallowing....just an occasional stiff neck/shoulder but not sure if that is related to this or my lousy bed pillow. Anyway...any advise on what I should be doing before and during treatments....I am 49 yrs old, 6'2 and 225lbs and been maintaining my weight....thanks for listening

Hello, sorry you have had to join our club. There are many posters here with very similar/same diagnosis.
Your treatment plan sounds like the standard one. HPV positive cancers respond much better to chemo and radiation so the prognosis is better. So you are already on a better footing.
It's good that you will have the PEG inserted prior to beginning treatment. Most people lose a good amount of weight while undergoing treatment. Your main job until you begin treatment is to eat as much as you can and gain weight.
I just want you to know that this treatment is very doable. The going can get rough at times but you will be ok. I hope you have a support person to be your advocate and cheer leader - you will need one.
Others will chime in soon and give you great advice.
You will get through this. I think the waiting for treatment to begin is the hardest. Once you start you know and feel like you are making progress at ridding yourself of this disease.
It can be a hard journey but you too will get through it. Come here often for help and advice with any hurdles. I think members here have experience with anything and everything that happens along the way and after.
Thinking of you,,
Tammy

Welcome to OCF! So glad you have found the forum to help you get thru this! OCF is full of helpful knowledgeable members who will offer you info and support. I know its very scary but you CAN do this!!! We are always afraid of the unknown.

Not everyone suffers, some patients will sail right thru their treatments. Good nutrition and hydration are what makes the difference. Every single day take in at least 2500 calories and 48 oz of water. I know it sounds like alot but its not when your body is fighting both cancer and the effects of treatments, calories are burned up at an amazing rate.

Before you begin, make sure to have a full blood count done including thyroid. This is very important as most patients will end up taking thyroid meds down the road (myself included).

Anyone who offers to help, write down their name and number. Tell the person you will let them know what they can do when the time comes. Now is not the time to let pride stand in the way of getting people to help. You will need help, everyone does so get used to the idea of having helpers. Its a hard idea to adjust to for some, as they are very independent. It wasnt easy for me as I had no caregiver and was accustomed to doing everything by myself as I was a single mother raising my children alone. I was also a bit stubborn which isnt a good thing when fighting cancer.

Im sure there are a bunch of other things you will need to prepare for but other members will chime in with their advice and welcomes soon. Stick with us and we will see you thru this. Dont be afraid to ask questions, we will help. Read and go thru the forum plus the main OCF pages are full of important and informative articles.

Best wishes!!!

Hello, Eagle! Welcome aboard, but sorry to hear about your diagnosis. I think you'll find just about everything you could ever possibly want to know about OC here. There's some incredibly kind and knowledgeable folks here that will respond with sincerity and above all-EXPERIENCE. There is a wealth of info on the other pages and you can do searches in this forum to see what others have experienced with similar issues.
My own chemo/rad (round 1) was noteworthy in that no, not EVERYBODY gets sick as a dog on chemo (not so true THIS time, however); and yes, I SHOULD have gotten the peg BEFORE radiation but I'm stubborn. One of my good 'taurean' qualities, but by the end of rad tx I was down 55 lbs and I've got a picture (somewhere) of me that barely looks HUMAN. I'm a 5'8"/160lb man so this was kindof radical and they did end up putting one in. I actually liked it as I tend to be the "busy beaver" and found it delightful that I was saving so much time by not having to fix meals! :-)
Radiation can be a bear. But you can bear it. My discomfort started with the very first treatment (VERY unusual) but was 'tolerable' (boy is THAT a subjective word for a constantly changing/evolving state of mind) for the most part. Believe it or not, you WILL get through it. You're a heck of a lot stronger than you've ever given yourself credit for and you'll find that what is scary as hell from this end can, and will be successfully done when you come out the other end. You'll be helping others to go through similar situations in no time; and THAT'S a good feeling.
Please post as often as you want with WHATEVER is on your mind-you'll get some real support here, my friend. You're NOT alone, no matter what you're probably feeling right now. We've been there and can help you go there, too.
Stay strong and keep us posted
Gordon

Sorry you had to join our club.

OK so now I will give you MY opinion on your Tx plans. Realize I am NOT any kind of doc just someone who had what you have.

You don't mention nodal involvement and you don't mention any biopsy that really is the only way to confirm cancer so that worries me a bit especially since they are recommending concurrent chemo.

Cisplatin is the best choice IF YOU NEED CHEMO but I would request or at least ask to have that delivered in 6 smaller weekly bags vs the 3 bag method they are suggesting. I had the 3 bags and that was before HPV was found to be easier to kill than non HPV and before some centers started using the weekly bag approach which seems to be just as effective and easier on the patient.

Port is OK if you go the chemo route but I would NOT go with the PEG. Look into the nasal tube which does not require any surgery and can be removed by you at home when it's no longer needed and will do the job IF and WHEN IT'S NEEDED. I didn't need a feeding tube until 2 weeks POST Tx and I got the nasal tube which only takes a few minutes to "install"; used it for 2 weeks: pulled it out myself and that was the end of that.

I would also request a blood draw to test my TSH and record that number for later.

Be careful of the 3 bag method of Cisplatin and be quick to recognize any slight buzzing or "ringing" in your ears. Tell your MO immediately if you even suspect you are hearing something different.

Look into getting dental Fluoride trays and start using them asap. Go to a dentist with oral cancer experience and get a thorough exam pre Tx.

You don't say where you are going to be treated but if I were you I would get a 2nd opinion from VCU.

Knowing what I know this is eactly what I would do if I were in your shoes right now.

Good luck and you have found the BEST site in the world for your cancer and we will be with you 24/7 from now till you no longer want us.

Welcome. Seems like everything is medically set for your treatment, which is pretty standard chemoradiation. Everyone is different in how they respond to, and recover from treatments due to many factors, including amount of radiation, areas radiated, amount of chemo for body weight, comorbities, age, treatment center, but there are some very common ailments we all endure, and some more unusual than others. You will probably be sent to see a speech and swallow therapist, nutrionist, and dentist prior to starting, if you did not already, all of who are important. The speech and swallow therapist will give you exercises to do, nutrionist about eating an adequate diet, hydration for your body weight, and dentist checking your teeth, correcting cavities before radiation, giving fluoride trays, prescription fluoride, and sometimes mouth guards, amongst some. If any teeth are extracted, two weeks healing time is needed before starting. Also as mentioned, all the baseline testing, including an eye exam, which can be effected by treatment.

I did not go into my initial chemo induction treatment with a peg tube, a port yes, but a peg was put in when I was hospitalized afterwards, and barely remember having it done, but could not do without one for any subsequent treatments.

Something not often thought about are future needs for medical insurance, and employment, in case either one ceases or need time off for a longer duration. It may best to see what your work benefits are ahead of time for sick pay, FMLA, short term disability, etc.

The same for medical insurance, knowing your co--pays, deductibles, hospilization deductibles & limits, prescription costs, physical therapy, occupational therapist or speech and swallow therapist.

You may want to set up a filing system since the invoices, coverage letters are sometime unrelentless. I have one for every doctor, hospital, including copies of all tests done, cd's for future reference, which I needed often, and obtaining them afterwards can be inconvienant, and costly.

Good luck with everything, and may have more questions as you proceed further.

Sorry you have to come on the roller coaster ride, but welcome, nevertheless. John has a similar diagnosis, he is now five weeks out of treatment. In addition to what everyone has advised so far, you will need to get a hearing test too, to establish a baseline now in case your hearing is impacted. The treatment is tough but take it a day at a time. You can do it. Best of luck to you.

Hi, Eagle
this is a very scary time, but there are aspects of your treatment and recovery you CAN take control of - and DOING something positive will help you feel and do better. Regarding the sleep - make sure you avoid caffience after, say, 1:00 as it takes about 10 hours to mostly clear your system. Walking or other moderate excercise - especially early in the day - will help with your endorphin levels and let you sleep better at night. Is there a tai chi class you could take? That is very focused, and if you can get the techniques worked out now, you might be able to continue it through much of therapy! Walking our dog (now sadly over the rainbow bridge) helped my husband and me manage the stresses of diagnosis and therapy.

There are many posts on this site with excellent tips on nutrition and hydration. One of the factors in how effective your treatment turns out is how closely you are able to adhere to the schedule. You want as little drama as possible, and that means taking came of yourself as best as possible. And that is something that you have a decent amount of control over.

Do you have someone that can help as a caregiver? Many of our members have gone it alone and done fine, but there are some pretty tough bits, and help can make a world of difference.
Maria

EagleNest.

Good luck on the treatment. I have just went through it, and it is no picnic.

This HPV thing is completely out of control.(rant, Sorry) At the risk of repeating myself, here are my thoughts:

1) You will need help. Driving on chemo is doable but I don't recommend it. For me it was a no way. Another set of ears in room with the doctor goes a long way on getting it right. I had my wife with me on every visit. Someone needs to push you hard. You will have no appetite and it will hurt to eat but you must.

2) Chemo plays tricks on you. Create a log sheet of drugs that you take and when. Believe me you will not be able to remember what you took and when. Take the pills as recommended. Getting behind is the problem. Taking them after your sick is too late.

3) Get some boost, Ensure, other liquid drinks and start drinking them now and go as long as you can into treatment. At some point you might not be able to swallow but a few sips of water. I, and many others, had to get a peg. It sucks, but it works. It may take a week to get it, so don't wait until you can't eat or drink, you will have to make that call before then. Every day got worse until about 3 week post rad for me.

4) Post often and ask questions. If you don't post, we can't help. Somebody here has been through just about everything. I really pity the people that had to go through this blind.

There are many on here that have been through the same tx as you. My husband is now over a year out and doing quite well. As was said above, it is no picnic, but is doable!
It is very important that you have a caregiver. Hopefully you do.
I agree with Davidcpa on the Cistplatin. He has experienced, and so has my husband, hearing loss from it. Maybe it would not be as harsh if they did the smaller hits. You can at least ask.
I know you are in the panic, holy crap mode right now. We have ALL been there and we understand.
Come here with anything you need to know. Between the forums and the site, you're covered with info!
Keep in touch,
Kathy