Olfactory neuroblastoma in the maxillary sinus - recent diagnosis

bany

jejrdn said:

Hi Sirenaf42
I sent you an email to the address you supplied. I certainly don't mind conversing with you on this. I look forward to hearing back from you. Take Care.

Brian

hi brian
hi again, sorry i've been a while getting back here. i'm glad your first treatment went well, i find it a relief that my dad has started radiation too. it's how you described...just that finally they are doing something to stop the cancer. now he has 8 down, 25 to go.

his pain started gradually after his surgery in june as his nerves began healing, since his biopsy in december, it escalated until he was unable to function, speak, eat or walk around. the drs believe it was damaged nerve pain and now the cancer is growing into these exposed nerve. as of last thursday, they found the right mixture of meds that have finally given him relief. they put in a central line for continuous dosage with a pump for breakthrough pain, he's now on hydromorphine and ketamine.

his spirits have improved immensely, he'll be staying with me for the duration of his radiation and the drs allowed him to come to home for about 6 hrs each day on the weekend to see how the pain is in an uncontrolled environment. so far so good looks like they may discharge him within a week.

i hope you're still doing good?

elaine

Edge

SIRENAF42 said:

Esthesionueroblastoma
I was diagnosed with EST as well, 2 surgeries and 6 weeks of radiation. You are the first person I found with this same type rare cancer... Would you mind conversing Im still in my recovery phase and would love to hear your story. Email me here or at sirenaf40@aol.com.

Esthesioneuroblastoma
I was diagnosed 4th December 2007 after surgery to remove polyps from my sinuses (mostly the
left side).

My tumor was small and the remainder was removed at MD Anderson in January 2008.

I too would be interested to hear your stories.

SIRENAF42

Edge said:

Esthesioneuroblastoma
I was diagnosed 4th December 2007 after surgery to remove polyps from my sinuses (mostly the
left side).

My tumor was small and the remainder was removed at MD Anderson in January 2008.

I too would be interested to hear your stories.

Esthesionueroblastoma
I was diagnosed in May 2008, had my tumor removed in san antonio and radiation done at MDAnderson beginning in August 2008. Started off with a polyp on my right sinus cavity, then after about 3 months, I began having the nosebleeds that lasted forever.... finally a cat scan showed another mass had formed, upon removal, thats when I was diagnosed. Thankfully it was caught very early and had not spread. The radiation was tolerable but the side effects were awful.

SIRENAF42

jejrdn said:

Hi Sirenaf42
I sent you an email to the address you supplied. I certainly don't mind conversing with you on this. I look forward to hearing back from you. Take Care.

Brian

Hi Brian
I dont think I received the email. I will go look in the spam, maybe it is buried between all the junk mail.

jejrdn

Edge said:

Esthesioneuroblastoma
I was diagnosed 4th December 2007 after surgery to remove polyps from my sinuses (mostly the
left side).

My tumor was small and the remainder was removed at MD Anderson in January 2008.

I too would be interested to hear your stories.

Hi Edge
So far I am 2 1/2 weeks into my radiation treatments. 4 weeks to go after tomorrows treatment. So far I am not experiencing any adverse side effects. I am sure something is right around the corner but for now I am taking each day without side effects as a blessing. So did you just have the surgery by itself or did you have to get follow up radiation treatments. I would be interested to know if you don't mind. Thanks very much.

Brian

Edge

jejrdn said:

Hi Edge
So far I am 2 1/2 weeks into my radiation treatments. 4 weeks to go after tomorrows treatment. So far I am not experiencing any adverse side effects. I am sure something is right around the corner but for now I am taking each day without side effects as a blessing. So did you just have the surgery by itself or did you have to get follow up radiation treatments. I would be interested to know if you don't mind. Thanks very much.

Brian

Greetings
My tumor was very small.

The surgery was endoscopic and removed the middle turbinate on the left side.

I have not had any radiation treatments or chemotherapy. Obviously that will
change if the tumor returns.

I have MRIs every six months at MD Anderson (Next is end of March) and see
my ENT in between.

Jeffrey

jejrdn

Edge said:

Greetings
My tumor was very small.

The surgery was endoscopic and removed the middle turbinate on the left side.

I have not had any radiation treatments or chemotherapy. Obviously that will
change if the tumor returns.

I have MRIs every six months at MD Anderson (Next is end of March) and see
my ENT in between.

Jeffrey

Just checking in....
Here's my update. So far I am 21 radiation treatments done out of 33. Just about 4 1/2 weeks done out of a total 6 1/2 weeks. Two weeks to go after this Friday. I have been pretty fortunate so far not to be experiencing any side effects yet. I have a little redness to the face but that is about it. I don't know if the next two weeks will be the roughest but by what they were telling me, I thought I would start experiencing side effects around the end of the second week. I still have my taste and saliva production and haven't gotten any sores or mucousa. I am feeling pretty good and going to the gym 7 days a week for about an hour and a half. My appetite has been normal and I am not bothered by any particular foods. So I am hoping and praying to get through the next two weeks just as well as the past weeks. Hope everyone else is doing well!!!

SIRENAF42

jejrdn said:

Just checking in....
Here's my update. So far I am 21 radiation treatments done out of 33. Just about 4 1/2 weeks done out of a total 6 1/2 weeks. Two weeks to go after this Friday. I have been pretty fortunate so far not to be experiencing any side effects yet. I have a little redness to the face but that is about it. I don't know if the next two weeks will be the roughest but by what they were telling me, I thought I would start experiencing side effects around the end of the second week. I still have my taste and saliva production and haven't gotten any sores or mucousa. I am feeling pretty good and going to the gym 7 days a week for about an hour and a half. My appetite has been normal and I am not bothered by any particular foods. So I am hoping and praying to get through the next two weeks just as well as the past weeks. Hope everyone else is doing well!!!

Great Update
U sound like you are tolerating the radiation ery well. I didnt have any skin issues till about the last week of radiation. I did have the loss of taste and saliva though around week 2. Hang in there, you are almost done!!!!!!

jmatt

SIRENAF42 said:

Great Update
U sound like you are tolerating the radiation ery well. I didnt have any skin issues till about the last week of radiation. I did have the loss of taste and saliva though around week 2. Hang in there, you are almost done!!!!!!

A novel distraction
I am not a cancer survivor, nor have I been diagnosed. In fact, I haven't seen a 'doctor' in over a decade. I know I really do not belong in this thread, but my medical resources are largely limited to my own exploration. I have poked around here, there, and everywhere - finding things that give me insight, but ironically, this is the first time that I considered posting something in a forum.

Maybe it is the subject matter - a sympton that I can't ignore, but can't really address either. Maybe the posts that I read in this thread lead me to believe that this is a solid group of people that may be willing to offer me the objective guidance I need from a familiar perspective unencumbered by the constraints of the 'doctor'.

If I am intruding, unwelcome, a complete bore... ignore me and accept my apology...

I am finding it hard to decide between being direct to the relevent point of the matter or be a long-winded story teller of tales that are mostly only of interest to me; knowing my tendency, I again apologize for the forthcoming lack of brevity.

(I know you aren't necessarily doctors, but even TV stars get almost as good)

I am a 32 year old caucasian male.

I led a largely medically unspectacular first 18 years of life. I got the chicken pox, a whooping cough, but not much else considering many winters in the cold northeastern US. In fact, I think I only missed five days in my entire school history, perfectly willing to plow through even mildly serious colds and flus.

I was atheletic, played baseball and ice hockey my entire youth, retiring from baseball long before hockey. I can remember as a young kid complaining often of pain in my legs, which were probably correctly dismissed as growing pains. Unfortunately, as I stopped growing, the pain sort of went the other way, but it never did much to slow me.

I never got seriously hurt, other than a blown up spleen that started to hurt bad when I discovered that I played a couple of high school hockey games with mononucleosis.

My mother's insurance was great and I can remember getting my first dental filling at age 17, for a very small cavity - the dentist deciding we may as well get it before mom's insurance stopped covering me.

Oh yeah - my mother was diagnosed with breast cancer when I was ten or eleven, living for nearly ten more years, years I think she was most proud of.

Leaving my teen years, I had gone of to college, but returned home in less than a year. My mother had fought for her own sake a long time ago, now it was mostly for others, and I went back. To be truthful, I wasn't thrilled with living in the Mission Hill area of downtown Boston either; classes all week and 48 hours of work, shifts that ended at midnight.

Around this time, my teeth, which I had never had so much as that lone minute cavity, went completely to hell. Granted, I continued to play hockey, despite increasing knee, back, and neck pain, and probably jarred a tooth or two loose in that setting.

I quickly began working for the State in a great job, so easy and unfulfilling, I feared that I may not get back to school. But, I had the same nice insurance as my mother had and so I began frequenting the dentist.

From zero to sixty, we were doing three root canals a day, twice a week until the insurance ran out. I never did get anything capped or crowned and eventually ended up with a mouth full of metal and holes to the point that I lost track. Two years earlier, I hadn't had a cavity.

At some point in this time, I began smoking, about a pack a day at my peak at this stage.

I had never heard of psoriasis in my life. Ever. So I was a little curious what in the hell was all over my elbows suddenly and seemed to be spreading. The kind dermatologist told me all about it, which wasn't reassuring as it simply seemed to get worse and worse regardless of medicines or sunlamps.

Well, my mother died at about this time, and shortly thereafter I traded in my good insurance and easy job for a couple of part timers and some classes at the State University.

I also continued to play hockey, which was getting difficult because of body pain and this new aggravating habit of vomiting after the first few minutes of intense activity. I have always and for the most part continue to attribute it to either smoking or what is probably a few undiagnosed hockey-related concussions, or a combination of both.

In the meantime, my teeth are continuing to fall apart or simply out at an alarming rate. Over and over, I have bouts with absesses in the gum line, swelling my cheek like a chipmunk. I no longer have insurance at this point, so I usually get away with pleading for antibiotics from an urgent care place so I don't miss work.

Since my teens, I have been well aware of my good friends I. Buprofin and Ty LaNol - taking 800 to 1200mg at a kick three times a day without ever considerin it. At this point, ten years later, I am routinely taking 1400-1600 mg of ibuprofen every two or three hours for tooth and body pain and it really is seeming to help less and less.


At some point in my mid-20's - I am pretty unhappy overall and get a wonderful opportunity to do something that had been a dream my entire life. I packed a bag of clothes, my cat, and flew across the country to the Southwest. I left out the number of parts where I took extended peiods of summertime off to spend at the racetrack. I fell in love with horse racing at a young age and despite being a hockey and ball player, I really always wanted to be at the track.

The place I was headed was not only going to give me a shot to live out a dream, but I'd be in a climate that was recommended more than once for both my joints and my skin.

So it began - I did everything that I never dreamed possible - blew all of my money learning the hard way, eventually training my own and a few for other people, and then training for a leading owner and even winners of major local races.

I thought I had a pretty full life at 25. By the time I was thirty, I felt like I had lived two. Figuratively and literally.

At this point, age thirty, I am already feeling terrible more often than not. Mind you, for five and a half years, I have worked 365 days a year, from 4am until night, and thought it was often incapacitatingly laborious, it never was really work. The work was the stress of the business end.

I still haven't seen a doctor at age 30 since one of those urgent care guys gave me some amoxicillin years ago and it showed. My teeth are throbbing sore constantly and I can't keep the advil in stock. My sore body has been pushed for so long that the rest of me feels like it is falling apart around the original problems.

Nonetheless, I turn 31, and after taking my first 'week off' (spent a week at the ranch with the horses), I went back to work. I wanted to throw in the towel pretty quickly, but I was doing rather well with my small string of runners and so I tried to stick it out. I began taking methocarbamol (robaxin) to help my back as it seemed to work on the horses.

Late in the meet my teeth became unbearable, well, what was left. I had extracted a few myself and even became very adept at 'floating' my teeth, after learning how to do it with horses. However, I didn't eat for nearly a week this time and when my advil stash couldn't help me sleep for three days straight, I took far too many phenylbutazoldin tablets, which left me feeling rather worse.

A friend provided me with some antiobiotics and a couple of vicodin or perkocet or something that was better than advil but wasn't going to leave me like a pile of sludge a la bute.

Though it helped, I wasn't great a day or so later and a former jockey friend gave me a few fetanyl patches. I had never heard of them, and read the warnings and knew I shouldn't take it, but if I was dumb enough to take a half bottle of bute, this was hardly a stretch.

It was the greatest seven says of my body's life to my memory. I forgot what it felt like to get out of bed and be able to move, to go up and down stairs, to get out of a chair in one motion. It was a bit of an eye opener as to just how bad I felt the rest of time. Particularly when that third patch ran out of steam. That was tough.

But the teeth felt well enough to resume enduring the constant mild pain untouchable by my daily 16000mg ibuprofen regimen, of course in annoying 200 mg doses, eight at a time.

About a month later, I had a bizarre attack, much like a mini-stroke (so I learned months later) at the barn. I was in a foul mood anyway and had lost about 15 pounds in a couple of weeks, leaving me at about 120 and feeling weak and rotten.

Every time I drank coffee, which I cannot live without, I vomit. If I take ibuprofen, suddenly, I am sick. So I move to acetominophen on the advice of someone. I can't eat.

I sold four horses, turned one out, and moved one to another barn. I sold almost everything I had at a loss to cover the bills and went back to the ranch again.

For the first few weeks, I couldn't eat well and never drank coffee. I also tried not to take any NSAID.

I felt better and better with rest and a month later, went back to the track, but without the horses - doing a different, but almost equally enjoyable job. It was also much easier, a day off, not nearly as much physical work, but the same bad pay that never left enough for anything but gas and a little food. And cigarettes - I am now, and have been up to almost two packs a day for a few years.

My new career ended rather abruptly, things like that happen in racing, so I went back to work for someone working with the horses.

I could barely do the work. But I forced my way through it day after day, and quickly I was back on full tylenol tilt with a healthy splash of ten or twelve horse robaxin (750mg).

Unforunately, after two and a half weeks, payday never came, so neither did I. That happens on the track as well. I returned back to relaxing on the ranch and a few days later, I turned 32.

A few days after that - I had another of those 'attacks' - like a mini stroke, or perhaps a heat stroke, it was hot and I was too, but I was all but out, paralyzed, and took a good three days to get my wits back.

But alas, not to be quelled for long, I took a string of four horses back to the track a few weeks later, determined to prove that only I can kill me, I guess.

This was about six months ago.

In November, after a protracted bout with my teeth that led to a rather gory manual extraction, I must have appeared particuarly disgusting as I was basically dragged to a dentist.

My first visit to a doctor or dentist in... a decade or so...

The man was appalled to say the least and refused to pull the bad teeth, counting out 14 teeth that needed pulled and referring me to an oral surgeon. He was kind enough to give me amoxicillin and... ibuprofen... thanks.

I actually made it to the surgeon and after unsucessfully attempting to do a fancy panoramic x-ray for an hour, had three of the teeth pulled based upon the basic poke till it hurts method. The work was being done with money from a benevolence program as I literally had no dollars and fewer cents.

My mouth felt a lot better within a few days and in a cruel twist, of my four horses, three got hurt within two weeks and I sold the other. I continued to work a little for a friend, trying to find more work without luck. I also began feeling pretty terrible again, finding it increasingly difficult to go without tylenol and robaxin non-stop.

At this point - it only makes sense to go to the ranch, I can look after the horses there and get fed and bedded at least.

So I do, and within two weeks, by the first of this year, I can barely function at a useful level.

I might consider the distinct reality of depression to explain away a herd of either new or worsening symptoms, but whereas most people are usually trying to convince themselves otherwise, I seem to try to make a case FOR it and can't really do it. At least not to my satisfaction - something is new and it is not new and wonderful.

I have always had difficulty with nausea, vomiting, and to some degree, heartburnish troubles - I have always figured I have some form of ulcer from the forty trillion milligrams of NSAIDS I polluted myself with. But suddenly, it is all much worse. After a period of eating extremely well when I first returned, I can barely eat anything, and when I do, it rarely hangs around for too long.

Yet, I don't show much weight loss. I feel like I'm 110 pounds, but look like I do when I'm 140, and I'm only short of that by a few pounds on a scale. I feel swelled up, but am so thin naturally, that I can't even convince myself of it, much less someone else. I look normal, but feel super light.

I have been lightheaded, dizzy, and demoralizingly and increasingly weak. I mean, it is hard to make my legs move at times. I can not stand up in one motion most of the time - it's up to a hunch, then straighten the back.

My chest and abdomen are consistently inconsistent in delivering bouts of daily pain, though it seems like mere rib stitches at times. However, I can virtually suffocate myself with coughing fits by applying just mild pressure at my collar bone near the center of the chest, where there also seems to be some heat and swelling, or boniness, or something.

My neck has little range of motion anymore, but that isn't new. But, instead of merely feeling stiff like it needs a good crack, often it just feels obstructed by swelling. My neck looks thick for as thin as I am and even my shoulders seem oddly muscled, but I can't really note any glaringly obvious lymph type swelling (though I may just not be very sharp)...

AND SO What does any of this have to do with the rest of this thread?

Okay... I may have had it forever with my tooth pain and general swelling and soreness, but I never really noticed it until I started paying a little more attention to myself -

I have a gumball machine gumball sized lump in what I believe to be known as the maxillary sinus cavity. Of course, my first thought was a tricky abscess - going up through the jaw bone rather than out the gum, but it has been there for months. I've had a lot of abscesses in my mouth and soaked many on my horses and they just don't last that long in one constant immobile state. I figured it was a result of one of few remaining completely broken teeth getting up in there, a root or something, but the tooth as actually hollow, in fact the hollowness is about four times its original size.

So - this is one of the few places where I have read anything other anecdotal tales of problems like this.

In recent days, as I have begun to feel worse and worse, odd things and just more things continue to surprise me...

My psoriasis is in retreat mode. I have been through wars of all kinds with this scabby body and my skin has NEVER gottent better, in fact, it has seemingly gotten worse with every year. Now, within a couple of weeks, I have half the skin coverage that I had and by all accounts, it seems like it wants to go away completely - it's just a long process.

I woke up with a herd of gray hairs on my head and in my stubble a few days ago. I never had even one, and every day, I've got more and more. Maybe it's a coincidence, but.

I have had terrible, terrible back pain the last ten days, high in the back, almost directly across from the spot in the collar bone one my chest where it feels like the stakes are pounded in to me.

Okay, okay...

I have read a million of these forums and I know I should be at the doctor, but I have no money. Zero. No insurance...

...Hear me out...

I will make it to the doctor, if I have to borrow money, if I can go in there and tell him what I want done. I have gotten to the point, from my own experiences, those of others, and frankly, a lot of what I have read that I am confident that I need to really almost know what I want to find out that which I do have or do not have and begin looking from there.

I can not go back and forth to a doctor. I may get one shot to get it right, and if I can feel like I have a legitimate reason for going there, I need to get done what I need and not waste one minute or dollar on whatever crap the pharmaceutical reps are pushing this year.

I always said that I would wait for a smoking gun - like coughing up or puking up blood on a regular basis, and other than a few spotty incidents that were most likely my teeth - I haven't been able to walk in and say...

"Doc - You got one chance to get this right - I have this and that and this and that, let's start with this."

I have a strong feeling that I have been hosting a nice infection for quite some time, the feeling of swelling, constriction of my chest, and long, long history of tooth problems has me considering the reality of some pleurisy accounting for some of my problems.

But, the face lump needs to be addressed too if it is a potential problem, and most of these urgent call types, hell, from the sounds of it, even the specialists aren't too quick on the draw.

The fact is - If I break down and borrow money or something with the intent of getting a blood test and chest x-ray and I get bullied into something else and go home with Rx for some crap that I'll never even fill...

...It'll be another decade before I consider a return visit. Well, easier said than done. I remember thinking that I wasn't going to a dentist ever again ten years ago.. chuckle...

Too back that panaromic xray machine was broke the one day I went...

If anyone read this and wants to reply, God love ya... if not, then I'm amazed you read it. Thanks for listening to my thoughts in any event...

bany

jmatt said:

A novel distraction
I am not a cancer survivor, nor have I been diagnosed. In fact, I haven't seen a 'doctor' in over a decade. I know I really do not belong in this thread, but my medical resources are largely limited to my own exploration. I have poked around here, there, and everywhere - finding things that give me insight, but ironically, this is the first time that I considered posting something in a forum.

Maybe it is the subject matter - a sympton that I can't ignore, but can't really address either. Maybe the posts that I read in this thread lead me to believe that this is a solid group of people that may be willing to offer me the objective guidance I need from a familiar perspective unencumbered by the constraints of the 'doctor'.

If I am intruding, unwelcome, a complete bore... ignore me and accept my apology...

I am finding it hard to decide between being direct to the relevent point of the matter or be a long-winded story teller of tales that are mostly only of interest to me; knowing my tendency, I again apologize for the forthcoming lack of brevity.

(I know you aren't necessarily doctors, but even TV stars get almost as good)

I am a 32 year old caucasian male.

I led a largely medically unspectacular first 18 years of life. I got the chicken pox, a whooping cough, but not much else considering many winters in the cold northeastern US. In fact, I think I only missed five days in my entire school history, perfectly willing to plow through even mildly serious colds and flus.

I was atheletic, played baseball and ice hockey my entire youth, retiring from baseball long before hockey. I can remember as a young kid complaining often of pain in my legs, which were probably correctly dismissed as growing pains. Unfortunately, as I stopped growing, the pain sort of went the other way, but it never did much to slow me.

I never got seriously hurt, other than a blown up spleen that started to hurt bad when I discovered that I played a couple of high school hockey games with mononucleosis.

My mother's insurance was great and I can remember getting my first dental filling at age 17, for a very small cavity - the dentist deciding we may as well get it before mom's insurance stopped covering me.

Oh yeah - my mother was diagnosed with breast cancer when I was ten or eleven, living for nearly ten more years, years I think she was most proud of.

Leaving my teen years, I had gone of to college, but returned home in less than a year. My mother had fought for her own sake a long time ago, now it was mostly for others, and I went back. To be truthful, I wasn't thrilled with living in the Mission Hill area of downtown Boston either; classes all week and 48 hours of work, shifts that ended at midnight.

Around this time, my teeth, which I had never had so much as that lone minute cavity, went completely to hell. Granted, I continued to play hockey, despite increasing knee, back, and neck pain, and probably jarred a tooth or two loose in that setting.

I quickly began working for the State in a great job, so easy and unfulfilling, I feared that I may not get back to school. But, I had the same nice insurance as my mother had and so I began frequenting the dentist.

From zero to sixty, we were doing three root canals a day, twice a week until the insurance ran out. I never did get anything capped or crowned and eventually ended up with a mouth full of metal and holes to the point that I lost track. Two years earlier, I hadn't had a cavity.

At some point in this time, I began smoking, about a pack a day at my peak at this stage.

I had never heard of psoriasis in my life. Ever. So I was a little curious what in the hell was all over my elbows suddenly and seemed to be spreading. The kind dermatologist told me all about it, which wasn't reassuring as it simply seemed to get worse and worse regardless of medicines or sunlamps.

Well, my mother died at about this time, and shortly thereafter I traded in my good insurance and easy job for a couple of part timers and some classes at the State University.

I also continued to play hockey, which was getting difficult because of body pain and this new aggravating habit of vomiting after the first few minutes of intense activity. I have always and for the most part continue to attribute it to either smoking or what is probably a few undiagnosed hockey-related concussions, or a combination of both.

In the meantime, my teeth are continuing to fall apart or simply out at an alarming rate. Over and over, I have bouts with absesses in the gum line, swelling my cheek like a chipmunk. I no longer have insurance at this point, so I usually get away with pleading for antibiotics from an urgent care place so I don't miss work.

Since my teens, I have been well aware of my good friends I. Buprofin and Ty LaNol - taking 800 to 1200mg at a kick three times a day without ever considerin it. At this point, ten years later, I am routinely taking 1400-1600 mg of ibuprofen every two or three hours for tooth and body pain and it really is seeming to help less and less.


At some point in my mid-20's - I am pretty unhappy overall and get a wonderful opportunity to do something that had been a dream my entire life. I packed a bag of clothes, my cat, and flew across the country to the Southwest. I left out the number of parts where I took extended peiods of summertime off to spend at the racetrack. I fell in love with horse racing at a young age and despite being a hockey and ball player, I really always wanted to be at the track.

The place I was headed was not only going to give me a shot to live out a dream, but I'd be in a climate that was recommended more than once for both my joints and my skin.

So it began - I did everything that I never dreamed possible - blew all of my money learning the hard way, eventually training my own and a few for other people, and then training for a leading owner and even winners of major local races.

I thought I had a pretty full life at 25. By the time I was thirty, I felt like I had lived two. Figuratively and literally.

At this point, age thirty, I am already feeling terrible more often than not. Mind you, for five and a half years, I have worked 365 days a year, from 4am until night, and thought it was often incapacitatingly laborious, it never was really work. The work was the stress of the business end.

I still haven't seen a doctor at age 30 since one of those urgent care guys gave me some amoxicillin years ago and it showed. My teeth are throbbing sore constantly and I can't keep the advil in stock. My sore body has been pushed for so long that the rest of me feels like it is falling apart around the original problems.

Nonetheless, I turn 31, and after taking my first 'week off' (spent a week at the ranch with the horses), I went back to work. I wanted to throw in the towel pretty quickly, but I was doing rather well with my small string of runners and so I tried to stick it out. I began taking methocarbamol (robaxin) to help my back as it seemed to work on the horses.

Late in the meet my teeth became unbearable, well, what was left. I had extracted a few myself and even became very adept at 'floating' my teeth, after learning how to do it with horses. However, I didn't eat for nearly a week this time and when my advil stash couldn't help me sleep for three days straight, I took far too many phenylbutazoldin tablets, which left me feeling rather worse.

A friend provided me with some antiobiotics and a couple of vicodin or perkocet or something that was better than advil but wasn't going to leave me like a pile of sludge a la bute.

Though it helped, I wasn't great a day or so later and a former jockey friend gave me a few fetanyl patches. I had never heard of them, and read the warnings and knew I shouldn't take it, but if I was dumb enough to take a half bottle of bute, this was hardly a stretch.

It was the greatest seven says of my body's life to my memory. I forgot what it felt like to get out of bed and be able to move, to go up and down stairs, to get out of a chair in one motion. It was a bit of an eye opener as to just how bad I felt the rest of time. Particularly when that third patch ran out of steam. That was tough.

But the teeth felt well enough to resume enduring the constant mild pain untouchable by my daily 16000mg ibuprofen regimen, of course in annoying 200 mg doses, eight at a time.

About a month later, I had a bizarre attack, much like a mini-stroke (so I learned months later) at the barn. I was in a foul mood anyway and had lost about 15 pounds in a couple of weeks, leaving me at about 120 and feeling weak and rotten.

Every time I drank coffee, which I cannot live without, I vomit. If I take ibuprofen, suddenly, I am sick. So I move to acetominophen on the advice of someone. I can't eat.

I sold four horses, turned one out, and moved one to another barn. I sold almost everything I had at a loss to cover the bills and went back to the ranch again.

For the first few weeks, I couldn't eat well and never drank coffee. I also tried not to take any NSAID.

I felt better and better with rest and a month later, went back to the track, but without the horses - doing a different, but almost equally enjoyable job. It was also much easier, a day off, not nearly as much physical work, but the same bad pay that never left enough for anything but gas and a little food. And cigarettes - I am now, and have been up to almost two packs a day for a few years.

My new career ended rather abruptly, things like that happen in racing, so I went back to work for someone working with the horses.

I could barely do the work. But I forced my way through it day after day, and quickly I was back on full tylenol tilt with a healthy splash of ten or twelve horse robaxin (750mg).

Unforunately, after two and a half weeks, payday never came, so neither did I. That happens on the track as well. I returned back to relaxing on the ranch and a few days later, I turned 32.

A few days after that - I had another of those 'attacks' - like a mini stroke, or perhaps a heat stroke, it was hot and I was too, but I was all but out, paralyzed, and took a good three days to get my wits back.

But alas, not to be quelled for long, I took a string of four horses back to the track a few weeks later, determined to prove that only I can kill me, I guess.

This was about six months ago.

In November, after a protracted bout with my teeth that led to a rather gory manual extraction, I must have appeared particuarly disgusting as I was basically dragged to a dentist.

My first visit to a doctor or dentist in... a decade or so...

The man was appalled to say the least and refused to pull the bad teeth, counting out 14 teeth that needed pulled and referring me to an oral surgeon. He was kind enough to give me amoxicillin and... ibuprofen... thanks.

I actually made it to the surgeon and after unsucessfully attempting to do a fancy panoramic x-ray for an hour, had three of the teeth pulled based upon the basic poke till it hurts method. The work was being done with money from a benevolence program as I literally had no dollars and fewer cents.

My mouth felt a lot better within a few days and in a cruel twist, of my four horses, three got hurt within two weeks and I sold the other. I continued to work a little for a friend, trying to find more work without luck. I also began feeling pretty terrible again, finding it increasingly difficult to go without tylenol and robaxin non-stop.

At this point - it only makes sense to go to the ranch, I can look after the horses there and get fed and bedded at least.

So I do, and within two weeks, by the first of this year, I can barely function at a useful level.

I might consider the distinct reality of depression to explain away a herd of either new or worsening symptoms, but whereas most people are usually trying to convince themselves otherwise, I seem to try to make a case FOR it and can't really do it. At least not to my satisfaction - something is new and it is not new and wonderful.

I have always had difficulty with nausea, vomiting, and to some degree, heartburnish troubles - I have always figured I have some form of ulcer from the forty trillion milligrams of NSAIDS I polluted myself with. But suddenly, it is all much worse. After a period of eating extremely well when I first returned, I can barely eat anything, and when I do, it rarely hangs around for too long.

Yet, I don't show much weight loss. I feel like I'm 110 pounds, but look like I do when I'm 140, and I'm only short of that by a few pounds on a scale. I feel swelled up, but am so thin naturally, that I can't even convince myself of it, much less someone else. I look normal, but feel super light.

I have been lightheaded, dizzy, and demoralizingly and increasingly weak. I mean, it is hard to make my legs move at times. I can not stand up in one motion most of the time - it's up to a hunch, then straighten the back.

My chest and abdomen are consistently inconsistent in delivering bouts of daily pain, though it seems like mere rib stitches at times. However, I can virtually suffocate myself with coughing fits by applying just mild pressure at my collar bone near the center of the chest, where there also seems to be some heat and swelling, or boniness, or something.

My neck has little range of motion anymore, but that isn't new. But, instead of merely feeling stiff like it needs a good crack, often it just feels obstructed by swelling. My neck looks thick for as thin as I am and even my shoulders seem oddly muscled, but I can't really note any glaringly obvious lymph type swelling (though I may just not be very sharp)...

AND SO What does any of this have to do with the rest of this thread?

Okay... I may have had it forever with my tooth pain and general swelling and soreness, but I never really noticed it until I started paying a little more attention to myself -

I have a gumball machine gumball sized lump in what I believe to be known as the maxillary sinus cavity. Of course, my first thought was a tricky abscess - going up through the jaw bone rather than out the gum, but it has been there for months. I've had a lot of abscesses in my mouth and soaked many on my horses and they just don't last that long in one constant immobile state. I figured it was a result of one of few remaining completely broken teeth getting up in there, a root or something, but the tooth as actually hollow, in fact the hollowness is about four times its original size.

So - this is one of the few places where I have read anything other anecdotal tales of problems like this.

In recent days, as I have begun to feel worse and worse, odd things and just more things continue to surprise me...

My psoriasis is in retreat mode. I have been through wars of all kinds with this scabby body and my skin has NEVER gottent better, in fact, it has seemingly gotten worse with every year. Now, within a couple of weeks, I have half the skin coverage that I had and by all accounts, it seems like it wants to go away completely - it's just a long process.

I woke up with a herd of gray hairs on my head and in my stubble a few days ago. I never had even one, and every day, I've got more and more. Maybe it's a coincidence, but.

I have had terrible, terrible back pain the last ten days, high in the back, almost directly across from the spot in the collar bone one my chest where it feels like the stakes are pounded in to me.

Okay, okay...

I have read a million of these forums and I know I should be at the doctor, but I have no money. Zero. No insurance...

...Hear me out...

I will make it to the doctor, if I have to borrow money, if I can go in there and tell him what I want done. I have gotten to the point, from my own experiences, those of others, and frankly, a lot of what I have read that I am confident that I need to really almost know what I want to find out that which I do have or do not have and begin looking from there.

I can not go back and forth to a doctor. I may get one shot to get it right, and if I can feel like I have a legitimate reason for going there, I need to get done what I need and not waste one minute or dollar on whatever crap the pharmaceutical reps are pushing this year.

I always said that I would wait for a smoking gun - like coughing up or puking up blood on a regular basis, and other than a few spotty incidents that were most likely my teeth - I haven't been able to walk in and say...

"Doc - You got one chance to get this right - I have this and that and this and that, let's start with this."

I have a strong feeling that I have been hosting a nice infection for quite some time, the feeling of swelling, constriction of my chest, and long, long history of tooth problems has me considering the reality of some pleurisy accounting for some of my problems.

But, the face lump needs to be addressed too if it is a potential problem, and most of these urgent call types, hell, from the sounds of it, even the specialists aren't too quick on the draw.

The fact is - If I break down and borrow money or something with the intent of getting a blood test and chest x-ray and I get bullied into something else and go home with Rx for some crap that I'll never even fill...

...It'll be another decade before I consider a return visit. Well, easier said than done. I remember thinking that I wasn't going to a dentist ever again ten years ago.. chuckle...

Too back that panaromic xray machine was broke the one day I went...

If anyone read this and wants to reply, God love ya... if not, then I'm amazed you read it. Thanks for listening to my thoughts in any event...

10 treatments to go
hey brian, that is fantastic news, i'm so glad you're not having any side effects yet. my dad is doing well too, the drs have been very pleased with his progress with only 2 weeks left. however, they are cautioning him that the worst is yet to come. he has lost most of his saliva production, has some sores and bleeding, difficulty swallowing, but he's so optimistic. he's managing almost 3000 calories each day and feels the cancer is shrinking, his mouth is smoother and the pain is decreasing. good luck brian, i hope you keep feeling so good sirena? are you still experiencing alot of trouble since the radiation has been finished?

jmatt, wow...that was one long post. lol it wasn't difficult to read at all though, you write well and have a great sense of humour. i don't even know where to start, i have no medical experience except i read everything i can find about problems my family or i have. my dr jokes about me making the correct diagnosis before she does. my first thought about your stomach problems was to agree with you, that it might be because of the amount of nsaid meds you've been taking. sometimes i do those symptom checkers on the mayo health site too, lol an easy way out, but i don't have much time tonight. i'd be tempted to ask for the drs to check every little box in those blood requisitions and that whole ct scan or mri. dad's tumour was mistaken for an infection for 2 yrs, so don't fall for that one. with so many systems of yours affected, i'd consider an auto-immune disease too. i'll check back in another day or 2, i really hope you can get to a dr and order every test imagineable! good luck,

elaine

PBailey

bany said:

10 treatments to go
hey brian, that is fantastic news, i'm so glad you're not having any side effects yet. my dad is doing well too, the drs have been very pleased with his progress with only 2 weeks left. however, they are cautioning him that the worst is yet to come. he has lost most of his saliva production, has some sores and bleeding, difficulty swallowing, but he's so optimistic. he's managing almost 3000 calories each day and feels the cancer is shrinking, his mouth is smoother and the pain is decreasing. good luck brian, i hope you keep feeling so good sirena? are you still experiencing alot of trouble since the radiation has been finished?

jmatt, wow...that was one long post. lol it wasn't difficult to read at all though, you write well and have a great sense of humour. i don't even know where to start, i have no medical experience except i read everything i can find about problems my family or i have. my dr jokes about me making the correct diagnosis before she does. my first thought about your stomach problems was to agree with you, that it might be because of the amount of nsaid meds you've been taking. sometimes i do those symptom checkers on the mayo health site too, lol an easy way out, but i don't have much time tonight. i'd be tempted to ask for the drs to check every little box in those blood requisitions and that whole ct scan or mri. dad's tumour was mistaken for an infection for 2 yrs, so don't fall for that one. with so many systems of yours affected, i'd consider an auto-immune disease too. i'll check back in another day or 2, i really hope you can get to a dr and order every test imagineable! good luck,

elaine

Esthesioneuroblastoma
Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

stayingcalm

jmatt said:

A novel distraction
I am not a cancer survivor, nor have I been diagnosed. In fact, I haven't seen a 'doctor' in over a decade. I know I really do not belong in this thread, but my medical resources are largely limited to my own exploration. I have poked around here, there, and everywhere - finding things that give me insight, but ironically, this is the first time that I considered posting something in a forum.

Maybe it is the subject matter - a sympton that I can't ignore, but can't really address either. Maybe the posts that I read in this thread lead me to believe that this is a solid group of people that may be willing to offer me the objective guidance I need from a familiar perspective unencumbered by the constraints of the 'doctor'.

If I am intruding, unwelcome, a complete bore... ignore me and accept my apology...

I am finding it hard to decide between being direct to the relevent point of the matter or be a long-winded story teller of tales that are mostly only of interest to me; knowing my tendency, I again apologize for the forthcoming lack of brevity.

(I know you aren't necessarily doctors, but even TV stars get almost as good)

I am a 32 year old caucasian male.

I led a largely medically unspectacular first 18 years of life. I got the chicken pox, a whooping cough, but not much else considering many winters in the cold northeastern US. In fact, I think I only missed five days in my entire school history, perfectly willing to plow through even mildly serious colds and flus.

I was atheletic, played baseball and ice hockey my entire youth, retiring from baseball long before hockey. I can remember as a young kid complaining often of pain in my legs, which were probably correctly dismissed as growing pains. Unfortunately, as I stopped growing, the pain sort of went the other way, but it never did much to slow me.

I never got seriously hurt, other than a blown up spleen that started to hurt bad when I discovered that I played a couple of high school hockey games with mononucleosis.

My mother's insurance was great and I can remember getting my first dental filling at age 17, for a very small cavity - the dentist deciding we may as well get it before mom's insurance stopped covering me.

Oh yeah - my mother was diagnosed with breast cancer when I was ten or eleven, living for nearly ten more years, years I think she was most proud of.

Leaving my teen years, I had gone of to college, but returned home in less than a year. My mother had fought for her own sake a long time ago, now it was mostly for others, and I went back. To be truthful, I wasn't thrilled with living in the Mission Hill area of downtown Boston either; classes all week and 48 hours of work, shifts that ended at midnight.

Around this time, my teeth, which I had never had so much as that lone minute cavity, went completely to hell. Granted, I continued to play hockey, despite increasing knee, back, and neck pain, and probably jarred a tooth or two loose in that setting.

I quickly began working for the State in a great job, so easy and unfulfilling, I feared that I may not get back to school. But, I had the same nice insurance as my mother had and so I began frequenting the dentist.

From zero to sixty, we were doing three root canals a day, twice a week until the insurance ran out. I never did get anything capped or crowned and eventually ended up with a mouth full of metal and holes to the point that I lost track. Two years earlier, I hadn't had a cavity.

At some point in this time, I began smoking, about a pack a day at my peak at this stage.

I had never heard of psoriasis in my life. Ever. So I was a little curious what in the hell was all over my elbows suddenly and seemed to be spreading. The kind dermatologist told me all about it, which wasn't reassuring as it simply seemed to get worse and worse regardless of medicines or sunlamps.

Well, my mother died at about this time, and shortly thereafter I traded in my good insurance and easy job for a couple of part timers and some classes at the State University.

I also continued to play hockey, which was getting difficult because of body pain and this new aggravating habit of vomiting after the first few minutes of intense activity. I have always and for the most part continue to attribute it to either smoking or what is probably a few undiagnosed hockey-related concussions, or a combination of both.

In the meantime, my teeth are continuing to fall apart or simply out at an alarming rate. Over and over, I have bouts with absesses in the gum line, swelling my cheek like a chipmunk. I no longer have insurance at this point, so I usually get away with pleading for antibiotics from an urgent care place so I don't miss work.

Since my teens, I have been well aware of my good friends I. Buprofin and Ty LaNol - taking 800 to 1200mg at a kick three times a day without ever considerin it. At this point, ten years later, I am routinely taking 1400-1600 mg of ibuprofen every two or three hours for tooth and body pain and it really is seeming to help less and less.


At some point in my mid-20's - I am pretty unhappy overall and get a wonderful opportunity to do something that had been a dream my entire life. I packed a bag of clothes, my cat, and flew across the country to the Southwest. I left out the number of parts where I took extended peiods of summertime off to spend at the racetrack. I fell in love with horse racing at a young age and despite being a hockey and ball player, I really always wanted to be at the track.

The place I was headed was not only going to give me a shot to live out a dream, but I'd be in a climate that was recommended more than once for both my joints and my skin.

So it began - I did everything that I never dreamed possible - blew all of my money learning the hard way, eventually training my own and a few for other people, and then training for a leading owner and even winners of major local races.

I thought I had a pretty full life at 25. By the time I was thirty, I felt like I had lived two. Figuratively and literally.

At this point, age thirty, I am already feeling terrible more often than not. Mind you, for five and a half years, I have worked 365 days a year, from 4am until night, and thought it was often incapacitatingly laborious, it never was really work. The work was the stress of the business end.

I still haven't seen a doctor at age 30 since one of those urgent care guys gave me some amoxicillin years ago and it showed. My teeth are throbbing sore constantly and I can't keep the advil in stock. My sore body has been pushed for so long that the rest of me feels like it is falling apart around the original problems.

Nonetheless, I turn 31, and after taking my first 'week off' (spent a week at the ranch with the horses), I went back to work. I wanted to throw in the towel pretty quickly, but I was doing rather well with my small string of runners and so I tried to stick it out. I began taking methocarbamol (robaxin) to help my back as it seemed to work on the horses.

Late in the meet my teeth became unbearable, well, what was left. I had extracted a few myself and even became very adept at 'floating' my teeth, after learning how to do it with horses. However, I didn't eat for nearly a week this time and when my advil stash couldn't help me sleep for three days straight, I took far too many phenylbutazoldin tablets, which left me feeling rather worse.

A friend provided me with some antiobiotics and a couple of vicodin or perkocet or something that was better than advil but wasn't going to leave me like a pile of sludge a la bute.

Though it helped, I wasn't great a day or so later and a former jockey friend gave me a few fetanyl patches. I had never heard of them, and read the warnings and knew I shouldn't take it, but if I was dumb enough to take a half bottle of bute, this was hardly a stretch.

It was the greatest seven says of my body's life to my memory. I forgot what it felt like to get out of bed and be able to move, to go up and down stairs, to get out of a chair in one motion. It was a bit of an eye opener as to just how bad I felt the rest of time. Particularly when that third patch ran out of steam. That was tough.

But the teeth felt well enough to resume enduring the constant mild pain untouchable by my daily 16000mg ibuprofen regimen, of course in annoying 200 mg doses, eight at a time.

About a month later, I had a bizarre attack, much like a mini-stroke (so I learned months later) at the barn. I was in a foul mood anyway and had lost about 15 pounds in a couple of weeks, leaving me at about 120 and feeling weak and rotten.

Every time I drank coffee, which I cannot live without, I vomit. If I take ibuprofen, suddenly, I am sick. So I move to acetominophen on the advice of someone. I can't eat.

I sold four horses, turned one out, and moved one to another barn. I sold almost everything I had at a loss to cover the bills and went back to the ranch again.

For the first few weeks, I couldn't eat well and never drank coffee. I also tried not to take any NSAID.

I felt better and better with rest and a month later, went back to the track, but without the horses - doing a different, but almost equally enjoyable job. It was also much easier, a day off, not nearly as much physical work, but the same bad pay that never left enough for anything but gas and a little food. And cigarettes - I am now, and have been up to almost two packs a day for a few years.

My new career ended rather abruptly, things like that happen in racing, so I went back to work for someone working with the horses.

I could barely do the work. But I forced my way through it day after day, and quickly I was back on full tylenol tilt with a healthy splash of ten or twelve horse robaxin (750mg).

Unforunately, after two and a half weeks, payday never came, so neither did I. That happens on the track as well. I returned back to relaxing on the ranch and a few days later, I turned 32.

A few days after that - I had another of those 'attacks' - like a mini stroke, or perhaps a heat stroke, it was hot and I was too, but I was all but out, paralyzed, and took a good three days to get my wits back.

But alas, not to be quelled for long, I took a string of four horses back to the track a few weeks later, determined to prove that only I can kill me, I guess.

This was about six months ago.

In November, after a protracted bout with my teeth that led to a rather gory manual extraction, I must have appeared particuarly disgusting as I was basically dragged to a dentist.

My first visit to a doctor or dentist in... a decade or so...

The man was appalled to say the least and refused to pull the bad teeth, counting out 14 teeth that needed pulled and referring me to an oral surgeon. He was kind enough to give me amoxicillin and... ibuprofen... thanks.

I actually made it to the surgeon and after unsucessfully attempting to do a fancy panoramic x-ray for an hour, had three of the teeth pulled based upon the basic poke till it hurts method. The work was being done with money from a benevolence program as I literally had no dollars and fewer cents.

My mouth felt a lot better within a few days and in a cruel twist, of my four horses, three got hurt within two weeks and I sold the other. I continued to work a little for a friend, trying to find more work without luck. I also began feeling pretty terrible again, finding it increasingly difficult to go without tylenol and robaxin non-stop.

At this point - it only makes sense to go to the ranch, I can look after the horses there and get fed and bedded at least.

So I do, and within two weeks, by the first of this year, I can barely function at a useful level.

I might consider the distinct reality of depression to explain away a herd of either new or worsening symptoms, but whereas most people are usually trying to convince themselves otherwise, I seem to try to make a case FOR it and can't really do it. At least not to my satisfaction - something is new and it is not new and wonderful.

I have always had difficulty with nausea, vomiting, and to some degree, heartburnish troubles - I have always figured I have some form of ulcer from the forty trillion milligrams of NSAIDS I polluted myself with. But suddenly, it is all much worse. After a period of eating extremely well when I first returned, I can barely eat anything, and when I do, it rarely hangs around for too long.

Yet, I don't show much weight loss. I feel like I'm 110 pounds, but look like I do when I'm 140, and I'm only short of that by a few pounds on a scale. I feel swelled up, but am so thin naturally, that I can't even convince myself of it, much less someone else. I look normal, but feel super light.

I have been lightheaded, dizzy, and demoralizingly and increasingly weak. I mean, it is hard to make my legs move at times. I can not stand up in one motion most of the time - it's up to a hunch, then straighten the back.

My chest and abdomen are consistently inconsistent in delivering bouts of daily pain, though it seems like mere rib stitches at times. However, I can virtually suffocate myself with coughing fits by applying just mild pressure at my collar bone near the center of the chest, where there also seems to be some heat and swelling, or boniness, or something.

My neck has little range of motion anymore, but that isn't new. But, instead of merely feeling stiff like it needs a good crack, often it just feels obstructed by swelling. My neck looks thick for as thin as I am and even my shoulders seem oddly muscled, but I can't really note any glaringly obvious lymph type swelling (though I may just not be very sharp)...

AND SO What does any of this have to do with the rest of this thread?

Okay... I may have had it forever with my tooth pain and general swelling and soreness, but I never really noticed it until I started paying a little more attention to myself -

I have a gumball machine gumball sized lump in what I believe to be known as the maxillary sinus cavity. Of course, my first thought was a tricky abscess - going up through the jaw bone rather than out the gum, but it has been there for months. I've had a lot of abscesses in my mouth and soaked many on my horses and they just don't last that long in one constant immobile state. I figured it was a result of one of few remaining completely broken teeth getting up in there, a root or something, but the tooth as actually hollow, in fact the hollowness is about four times its original size.

So - this is one of the few places where I have read anything other anecdotal tales of problems like this.

In recent days, as I have begun to feel worse and worse, odd things and just more things continue to surprise me...

My psoriasis is in retreat mode. I have been through wars of all kinds with this scabby body and my skin has NEVER gottent better, in fact, it has seemingly gotten worse with every year. Now, within a couple of weeks, I have half the skin coverage that I had and by all accounts, it seems like it wants to go away completely - it's just a long process.

I woke up with a herd of gray hairs on my head and in my stubble a few days ago. I never had even one, and every day, I've got more and more. Maybe it's a coincidence, but.

I have had terrible, terrible back pain the last ten days, high in the back, almost directly across from the spot in the collar bone one my chest where it feels like the stakes are pounded in to me.

Okay, okay...

I have read a million of these forums and I know I should be at the doctor, but I have no money. Zero. No insurance...

...Hear me out...

I will make it to the doctor, if I have to borrow money, if I can go in there and tell him what I want done. I have gotten to the point, from my own experiences, those of others, and frankly, a lot of what I have read that I am confident that I need to really almost know what I want to find out that which I do have or do not have and begin looking from there.

I can not go back and forth to a doctor. I may get one shot to get it right, and if I can feel like I have a legitimate reason for going there, I need to get done what I need and not waste one minute or dollar on whatever crap the pharmaceutical reps are pushing this year.

I always said that I would wait for a smoking gun - like coughing up or puking up blood on a regular basis, and other than a few spotty incidents that were most likely my teeth - I haven't been able to walk in and say...

"Doc - You got one chance to get this right - I have this and that and this and that, let's start with this."

I have a strong feeling that I have been hosting a nice infection for quite some time, the feeling of swelling, constriction of my chest, and long, long history of tooth problems has me considering the reality of some pleurisy accounting for some of my problems.

But, the face lump needs to be addressed too if it is a potential problem, and most of these urgent call types, hell, from the sounds of it, even the specialists aren't too quick on the draw.

The fact is - If I break down and borrow money or something with the intent of getting a blood test and chest x-ray and I get bullied into something else and go home with Rx for some crap that I'll never even fill...

...It'll be another decade before I consider a return visit. Well, easier said than done. I remember thinking that I wasn't going to a dentist ever again ten years ago.. chuckle...

Too back that panaromic xray machine was broke the one day I went...

If anyone read this and wants to reply, God love ya... if not, then I'm amazed you read it. Thanks for listening to my thoughts in any event...

jmatt's post
I'm sorry if I offend you, but this post sounds to me like the lead-in to a scam. Take it for what its worth.

SIRENAF42

bany said:

10 treatments to go
hey brian, that is fantastic news, i'm so glad you're not having any side effects yet. my dad is doing well too, the drs have been very pleased with his progress with only 2 weeks left. however, they are cautioning him that the worst is yet to come. he has lost most of his saliva production, has some sores and bleeding, difficulty swallowing, but he's so optimistic. he's managing almost 3000 calories each day and feels the cancer is shrinking, his mouth is smoother and the pain is decreasing. good luck brian, i hope you keep feeling so good sirena? are you still experiencing alot of trouble since the radiation has been finished?

jmatt, wow...that was one long post. lol it wasn't difficult to read at all though, you write well and have a great sense of humour. i don't even know where to start, i have no medical experience except i read everything i can find about problems my family or i have. my dr jokes about me making the correct diagnosis before she does. my first thought about your stomach problems was to agree with you, that it might be because of the amount of nsaid meds you've been taking. sometimes i do those symptom checkers on the mayo health site too, lol an easy way out, but i don't have much time tonight. i'd be tempted to ask for the drs to check every little box in those blood requisitions and that whole ct scan or mri. dad's tumour was mistaken for an infection for 2 yrs, so don't fall for that one. with so many systems of yours affected, i'd consider an auto-immune disease too. i'll check back in another day or 2, i really hope you can get to a dr and order every test imagineable! good luck,

elaine

Hi Elaine
I still have issues with dizziness and what I call stuffy nose syndrome, most of my radiation was directed at my sinus's and my lymphs in my neck. My mouth still dries out pretty fast and constantly drink water. My taste is not the same. Cant eat anything acidy (tomatos, spices, orange juice) and milk taste awful. Other than that most other side effects seem to have faded.

I go back to MDAnderson on March 19th for my MRI and then get results on the 20th. All in all I feel pretty good and am staying positive, all though I have my moments of fear and "what if" mental sessions.

Im glad to hear your dad is doing well. Tell him to hang in there....

SIRENAF42

PBailey said:

Esthesioneuroblastoma
Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

Hey PBAILEY
As a Esthesioneuroblastoma survivor myself (diagnosed in 2008 as well) why are you having chest xrays? I get the MRI of my head/sinus but theyve never done my chest?

jejrdn

PBailey said:

Esthesioneuroblastoma
Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

Hello PBailey
I am glad that yours was caught early and you are able to treat it with little side effects. It is definitely good to keep up with the follow up exams. I too will be having regular exams/MRI's/x-ray's, etc.
If you don't mind me asking, how was your cancer found? What symptoms, if any, did you have. Just curious. Like you said, this cancer is not well known and it is beneficial to hear each others stories. Thanks.

Brian

jejrdn

SIRENAF42 said:

Hi Elaine
I still have issues with dizziness and what I call stuffy nose syndrome, most of my radiation was directed at my sinus's and my lymphs in my neck. My mouth still dries out pretty fast and constantly drink water. My taste is not the same. Cant eat anything acidy (tomatos, spices, orange juice) and milk taste awful. Other than that most other side effects seem to have faded.

I go back to MDAnderson on March 19th for my MRI and then get results on the 20th. All in all I feel pretty good and am staying positive, all though I have my moments of fear and "what if" mental sessions.

Im glad to hear your dad is doing well. Tell him to hang in there....

Hi Sirena
Do you use a saline solution for your nose? When I get a dry nose I just mist it with a good saline solution and it helps out. Glad to hear that all in all you are feeling pretty good and staying postive. Keep on the good track. Take care.

Brian

PBailey

jejrdn said:

Hello PBailey
I am glad that yours was caught early and you are able to treat it with little side effects. It is definitely good to keep up with the follow up exams. I too will be having regular exams/MRI's/x-ray's, etc.
If you don't mind me asking, how was your cancer found? What symptoms, if any, did you have. Just curious. Like you said, this cancer is not well known and it is beneficial to hear each others stories. Thanks.

Brian

Brian
Hi Brian,

Thanks for the interest, amazingly enough I just heard that a friend of mine has a co-worker who is newly diagnosed. It appears to either be in the rise or of course more cases means more information.the earlier the better I say.

My symptoms began over the winter '07, we went to Denver (drier & colder than I am used to) I began to get congested and once we returned to Virginia I started using Afrin, and when I read of the long term effects I went to straight saline mist..with little relief. After a few weeks I was noticing a "pea like blockage" when I tried my hardest to blow, so off the WebMD for my conculsion of a nasal polyp. Went to the local ENT in July 07 who ordered a CT scan and when that was "not just typical of a polyp" off to the MRI, it was still not typical but there was no brain connection, so the removal was scheduled (9/08). It was not until the "polyp" went through pathology did anyone ever think cancer. By the time I got to Pittsburgh there was no evidence of tumor, however pathology during surgery confirmed that there were "cells" in the olfactory nerve which is why I had radiation. And since the trait of this is to travel to the lymph nodes and lungs they will monitor me with 3 month MRI & 6 month x-rays. I just continue to pray that I will not be one of the re-occurance stats since I did not complete a traditional radiation routine, the oncologist & ENT did concur that the CyberKnife was just as effective in my case, and has been started as an option. I do not know where you are and what options are available to you but I was determined to get as many opinions as possible and go with what felt right for me. I am glad that I did. I completed my radiation on Friday and Monday I feel way better than I thought I would. I even called the oncologist today to see about weening off of the steroids they put me on for the last day due to some eye muscle pain. I am feeling no ill effects and while on steriods I cannot sleep so I can say I am tired I just cannot tell you why

As I was weighing the options, I have to say that the side effects of radiation scared me to peices. I am still struggling to regain some sense of smell, call it wishful thinking, but it has not come back after my surgery which was in November, but I still have the right side olfactory intact so maybe one day, by the time I realize it is not coming back I will be used to not having different smells through the day. I can taste but nothing has great "flavor" and cooking is quite a chore these days, sometime I forget that I have something on the stove and baking which I just love to do with my daughter has become quite boring. With each new day comes new hopes and the chance to enjoy the days God has given to me. I am truly blessed that this was caught so early.

OK Brian, I know you probally were not wanting that much of my story, it just finally feels "OK" to talk about it. How about your story? Let me know how your treatments are going. I think I have my first post radiation MRI in May/June but have had a couple since my surgery which show nothing {{{yippie}}}.

Cheers and blessings,
Patti

PBailey

SIRENAF42 said:

Hey PBAILEY
As a Esthesioneuroblastoma survivor myself (diagnosed in 2008 as well) why are you having chest xrays? I get the MRI of my head/sinus but theyve never done my chest?

X-Rays
Hi Sirena,

I think they just want the chest x-rays every 6 months to make certain it has not traveled since that is a trait of this. I had an x-ray prior to surgery and the Dr feels confident that it is precautionary but the more places they check the better.

I read you are having stuffiness, are you still rinsing with the sinus rinse? I find that 2x day works great for me, it also helps a little with the "radiation smell" I have. Do you still have any olfactory system left? I had a hard time accepting that I may not smell again even though they did salvage one side. The ENT says it could take a year to get some back or I may never smell again, we will see what is in my cards.

Grace and Peace,
Patti

jmatt

I'm not entirely sure if the
I'm not entirely sure if the message is directed at me or the others in the forum - but 'what its worth', if the message is directed at me, is that you are a fairly skeptical person by nature. Or, you know the punchline to a joke that I didn't realize I was telling... chuckle... but, for what it is worth, I rarely get offended, despite having strong convictions...

Let me rephrase if you are actually hoping to have skepticism confirmed or quelled...

You have no doctor. You have been sickly for years, but shuffled that to the back of the priorities of a life without days off.

Suddenly it has become difficult enough to work that coupled with the inherent economic difficulty of said work, you are no longer working.

Suddenly your problems have subtly drifted much closer to your consciesceness and seem a bigger priority.

You still have no doctor. But, you have access to the internet, where there is probably more information than most doctors have at their immediate disposal anyway.

Among the things that bother you some is a large, palpable mass above your teeth. Your other sypmtoms are at least easily recognizable and describable, unlike this one.

With a history of years of dental decline, tooth loss en masse, abscess after abscess, it is not until after this lump remains intact for months does it even seem out of place, more than a simple side-effect of another in many tooth casualties.

Now, try to Google that symptom.

Big lump under skin above teeth below eye socket.

Sooner or later, later in my case, you tire of reading of things that sounds nothing like your problem and get to some skeletal anatomy.

You discover by looking at the screen and feeling your face that the lump is in an area probably referred to as the 'maxillary sinus cavity'.

So you Google for Maxillary Sinus and what you get is a much better group of results, but they are almost entirely medical abstracts. Making it worse, most of the abstracts begin with constant repitition of the phrase 'patient originally presented with..." and then goes on to describe the myriad of misdiagnosis and wasted opportunities.

This thread in here actually has people describing their experiences and a few of them sounded familiar.

I can't just keep going to doctors, getting second, third and tenth opinions until someone gets it right. It's that simple. I just thought it might be of some value, on the off-chance that my story sounded a bit familiar when expanded, to hear that familiar story told from another perspective.

I have never wanted anything tangible and it shows to those that know me. But, yes, I have taken it for what it is worth.

SIRENAF42

jejrdn said:

Hi Sirena
Do you use a saline solution for your nose? When I get a dry nose I just mist it with a good saline solution and it helps out. Glad to hear that all in all you are feeling pretty good and staying postive. Keep on the good track. Take care.

Brian

Stuffy nose and sense of smell
I love my sinus rinse, use it twice a day. I have a lot of scar tissue in my sinus cavity and that causes "blockage". Down the road my doc said they may have to go in and remove it.

I never lost my sense of smell completely, it went dormant during radiation but came back faster than my sense of taste. My cancer (EST) was in my ethmoid sinus, nasopharnyx and sinus cavity.

I cant express how excited I am to finally find other with EST. NOt that Im happy anyone has this rare cancer.. but its nice to finally talk to people who know what I have gone through or someone I can help get through what I have gone through.

Sirena