All of the "ifs" are encouraging but I have appreciated the doctors being upfront on what their oppinions are about my situation. There is a possibility its something else but I'm preparing for the worst and hoping for the best.

Thanks for the link to the other member being treated at UAB. I will get in touch as soon as I have time.

I'm going to try and let it go until i get the results of my biopsy. I like the thought process of dealing with whats in front of you. I have to get through the biopsy and recieve the results. Then I will deal with whats next.

Thanks for all the comments.

Josh

Hang in there. You are doing everything right at this point.
After my biopsy confirmed the BOT tumor, I found that Percocet worked a lot better than plain oxy or hydro codone to dull the ear pain. One of the bright sides of radiation TX was it shrank the tumor quickly enough to relieve the pressure on the facial nerves that was causing my ear pain.
Personally, I found that reminding myself of my self image as "tougher than you want to find out" and an indefatigable opponent served me well, although the tumor tried to beat me in both of those categories (after all, it was a rogue part of me). And I was turning 60 so a young guy like you can and will do better.
Charm

Thats good to know that the ear pain will decrease with treatment. Right now it has the best of me. It is literally the kind of pain that would drive a man crazy. I don't see how they survived in the old days without pain medication.
My doctor at UAB seems like he is going to be conservative with pain management. My local ENT that referred me to UAB seems very open with pain management. I hate to get between the two. I want to do whats right but I don't want to walk around hurting all day. I'm kind of torn. I am trying to make it until Friday and bring it up again face to face with my doc at UAB. Its horrible though. I have to give myself a break about every three days to allow my stomach to catch up and have a movement. Thats when the pain gets out in front of me and it takes almost the entire next day to get caught back up. Its like there is a huge bug deep down in my ear. Constant ache with periods of piercing pain.

I will be consulting with him Friday if not earlier.

Thanks
Josh

Hi Josh,
I love your positive attitude. We handled it by taking each step one at a time too. It is doable. They seem pretty certain, so I would start eating whatever you want and as much of it as you want so you can gain some weight before tx. You will lose weight. Kevin lost 56 lbs, but he had it to lose so did ok. Now we struggle to keep his weight where it is though. Just another side effect of radiation/chemo I guess.
How old are you?
Please tell your wife that she can pm me if she would like to talk caregiver to caregiver. It will be very hard for her. Probably harder than it is on you because while you are going through it, she is trying to rock the house and babe and watch and help you too. It is gut wrenching to see your loved one hurt.
Please keep in touch with us. We'll be here for you.
Blessings,
Kathy

Josh,

It kind of sounds like something is affecting one of your cranial nerves (you have 12 paired cranial nerves) as the pain isn't being resolved with an opiate. Oxy is a relatively strong pain medication and should be able to deal with the pain you are experiencing. My thought is to ask your Dr for an anti-convulsant/seizure med as it may just be neuropathy (nerve pain) and opiates aren't generally effective for treating it. Many on these forums have used Neurontin (Gabepentin) with varying degrees of success treating neuropathy.

Marijuana (vaporized or ingested, never smoked) is another alternative that many here have used with success as well. The important part is to get the pain managed effectively as pain puts the body in distress, raising cortisol levels and is the enemy of healing.

Hope that helps

Eric

I am going to print my forum out before my next visit and have it in hand and ready to ask questions. I would not be against trying marijuana but i'm afraid it is not an option. I work for a gov't contractor and they test pretty regular and as far as I know Alabama is not on board with the medical marijuana movement. I should be ok until Friday and hope to go in armed with all the great info I am getting from comments and other forum info I have found at this site. Has anyone delt with using marijuana in a state that is not a medical marijuana state or a job that does not allow it??

I should tell a little about myself. I am 35. Smoker 15yrs+. Trying to quit. Horible timing. Heavy recreational drinker. Haven't had a drink in three weeks. That won't be a problem as much as smoking. I am positive for genital herpes and warts. That makes me think my biopsy will show HPV+. I currently work in inventory but I have worked in autobody and industrial painting since high school. I spent 6yrs+ painting military parts with CARC paint. A known carcigen. So I expected health problems later on in life. Just not this early.
I have regular check ups, dentist twice a year, no past health problems till this popped up. In the past year I finally started taking xanax for anxiety at work and trazadone for sleep. Until then I rarely ever took any meds.

Thanks for the replies. It feels good to be able to talk here. I am not a talker in person. It drives my wife crazy. I don't want to scare her or cause her to worry.

Josh

I'll bet that "conservative pain management" UAB doctor would be the first one demanding a fentanyl patch if he were the one experiencing the ear pain. Your description brought back bad memories. All of EricS suggestions are great.
There is no law prohibiting you from getting pain medication prescriptions from your ENT as well as the UAB doctor, although some pharmacies are so bullied by the DEA you might have to switch as I did.
Until the tumor shrank enough to quit pressing on my nerves, I just kept up the opiates and used glycerin suppositories for bowel movements. Laxatives were too unpredictable while the suppositories worked every time and within 20 minutes of insertion.
Oh, and Morphine has been sold by Merck since 1827. Laudanum (Tincture of Opium) has been around since the 1660s. Straight up Opium as pain medication was being used by the Babylonians as far back as 4000 BC. of course without radiation or chemo, base of tongue cancer patients died back then.
Charm

Josh,

I really don't give a "F" what's legal or what's not when I'm dealing with life and death situations my friend, I'm going to use or suggest what I know to work. You're going to light up a tox screen no matter what you do at the moment brotha and can explain most of that away. It would take a huge dick to tox screen you going through cancer treatment so I'm sure you could get a pass.

Many guys are the same way Josh, they don't talk about what they are feeling or experiencing mentally, physically, or emotionally. Use these forums as much as you can brotha, the more the better. I can honestly say I don't know where I'd be without them.

I wish Kevin would share more on here. He just keeps it inside and moves on. If he's feeling half of what I am, he should be talking to someone. Oh well. Boys!!!! ;o)

Kathy, it's good to know that men are just as frustrating to women as women are to men

Generally speaking it's difficult to get men to share on these forums...and those of us that do some people would rather us not some days, especially when we are having our own hormonal imbalances

I do wish more guys would share on these forums myself as the majority of those being diagnosed with Oral Cancer are men (Men are diagnosed with HPV related Oral Cancer at a ratio of 3/1 over women) however "sharing" must not be in our nature.