Olfactory neuroblastoma in the maxillary sinus - recent diagnosis
Comments
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JMattjmatt said: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.
Have you self-referred yourself to a cancer treatment center? I self referred myself to MD Anderson and was accepted and treated there. Due to a mis-diagnosis from my ENT, my insurance company told me to self refer myself. You can go to their web-page and complete the application.
You are the only one who can knows your story and you are the only one who can get help. If I was you, Id scream until a doctor somewhere listened to me. Doenst matter which one, just decide today is the day I am not going to have someone tell me there is nothing wrong with me. Its your health not theirs, make a scene, get noticed and you will get results.
Best of luck,
Sirena0 -
All done with radiation....YEY!!
Just finished the last of my 33 treatments on Friday 3/20, the first day of spring!! I decided to keep the mask. I am going to paint it or something and hang it up in my home office. I had mixed feelings when I ended the last treatment. Sad to say goodbye to the team that treated me but excited that this part is behind me. I was very, very fortunate to not get any bad side effects. Didn't lose sense of taste, didn't lose my saliva. I didn't get any mouth sores or mucousa. Didn't have any fatigue or problems eating. I just got a little red in the face and my hair thinned out a little around the back of my head. So I feel really blessed that it was as good as it was. I followed a pretty strict nutrition and execise regiment during the whole treatment process and it seemed to have helped. Now I follow up with the radiation doctor April 15th. If everything looks good then I get turned over to the surgeon and he checks me out to make sure there aren't any signs of cancer. Then I go to the prosthodontist to get fitted for a more permanent looking mouth peice that will have some teeth. So little by little I am getting to feel normal again. Hope everyone else is doing well. Just wanted to give an update. Take it easy!!!
Brian0 -
congrats Brianjejrdn said:All done with radiation....YEY!!
Just finished the last of my 33 treatments on Friday 3/20, the first day of spring!! I decided to keep the mask. I am going to paint it or something and hang it up in my home office. I had mixed feelings when I ended the last treatment. Sad to say goodbye to the team that treated me but excited that this part is behind me. I was very, very fortunate to not get any bad side effects. Didn't lose sense of taste, didn't lose my saliva. I didn't get any mouth sores or mucousa. Didn't have any fatigue or problems eating. I just got a little red in the face and my hair thinned out a little around the back of my head. So I feel really blessed that it was as good as it was. I followed a pretty strict nutrition and execise regiment during the whole treatment process and it seemed to have helped. Now I follow up with the radiation doctor April 15th. If everything looks good then I get turned over to the surgeon and he checks me out to make sure there aren't any signs of cancer. Then I go to the prosthodontist to get fitted for a more permanent looking mouth peice that will have some teeth. So little by little I am getting to feel normal again. Hope everyone else is doing well. Just wanted to give an update. Take it easy!!!
Brian
Glad to hear you are done with radiation and that you didnt have any major side effects. The next week or so may be tuff, the week after radiation for me was the worst. Hopefully you will get your mouth piece and then day by day, life will return to as normal as we can expect. Life after cancer is never the same, but you sound like you have a great outlook and are healthy and that is the best way to be. Cancer sucks
Sirena0 -
congratulations brianSIRENAF42 said:congrats Brian
Glad to hear you are done with radiation and that you didnt have any major side effects. The next week or so may be tuff, the week after radiation for me was the worst. Hopefully you will get your mouth piece and then day by day, life will return to as normal as we can expect. Life after cancer is never the same, but you sound like you have a great outlook and are healthy and that is the best way to be. Cancer sucks
Sirena
hey brian, i'm glad you're doing so well. it's so good you had such few side effects. Thanks for the info sirena, you said you'd have your mri results by the 20th, how are things?
dad finished radiation mar. 20th too, this week has been bad. the cancer pain he had in his face is gone, so that's a relief, but the sores in his nose, mouth and throat are making it very difficult for him to swallow. for 6 days now, he's been sleeping steady, we are waking him every 2 hrs so he'll sit up...have an ensure, a glass of water and he goes back to sleep. it's very scary, we've been reassured this is normal and i know everyone says how tired they are....but i never expected this kind of total exhaustion, he just can't stay awake and he's really trying. he's worried about his lungs from lying down so long, he's losing weight and getting very weak. the drs told us it will be about 10 days of this, we have 4 more to go and just trying to keep him drinking.
you're right sirena....cancer sucks
elaine0 -
Hi Elainebany said:congratulations brian
hey brian, i'm glad you're doing so well. it's so good you had such few side effects. Thanks for the info sirena, you said you'd have your mri results by the 20th, how are things?
dad finished radiation mar. 20th too, this week has been bad. the cancer pain he had in his face is gone, so that's a relief, but the sores in his nose, mouth and throat are making it very difficult for him to swallow. for 6 days now, he's been sleeping steady, we are waking him every 2 hrs so he'll sit up...have an ensure, a glass of water and he goes back to sleep. it's very scary, we've been reassured this is normal and i know everyone says how tired they are....but i never expected this kind of total exhaustion, he just can't stay awake and he's really trying. he's worried about his lungs from lying down so long, he's losing weight and getting very weak. the drs told us it will be about 10 days of this, we have 4 more to go and just trying to keep him drinking.
you're right sirena....cancer sucks
elaine
My appt went well, no new sign of disease. Still dealing with some side effects of the radiation. My side effect that keeps hanging around is dizziness... its driving me crazy, they say its from the swelling in my head (ears, nose area) and usually around the 6 month mark I should see some relief.... so one more month ... we shall see what happens!
For me, the 2 weeks after radiation were the worst. I couldnt eat, drink, and all I did was sleep. Thats the body shutting down to heal. He needs the rest so let him get it. Id get up to drink my smoothy, visit with my kids and shower, do my nasal rinse and slap some Aquaphor on my face, then I would head right back to bed. He will slowly feel his energy levels return. Even though I couldnt taste, I still hated that Ensure, and hopefully will never have to drink it again. The smell is enough to make me gag. ick!
He will start feeling better, but radiation sucks the life out of you.... so it will take time for him to heal. I dont think I felt really great until almost 2 months after my last treatment. Tell your dad to hang in there.0 -
thank you sirenaSIRENAF42 said:Hi Elaine
My appt went well, no new sign of disease. Still dealing with some side effects of the radiation. My side effect that keeps hanging around is dizziness... its driving me crazy, they say its from the swelling in my head (ears, nose area) and usually around the 6 month mark I should see some relief.... so one more month ... we shall see what happens!
For me, the 2 weeks after radiation were the worst. I couldnt eat, drink, and all I did was sleep. Thats the body shutting down to heal. He needs the rest so let him get it. Id get up to drink my smoothy, visit with my kids and shower, do my nasal rinse and slap some Aquaphor on my face, then I would head right back to bed. He will slowly feel his energy levels return. Even though I couldnt taste, I still hated that Ensure, and hopefully will never have to drink it again. The smell is enough to make me gag. ick!
He will start feeling better, but radiation sucks the life out of you.... so it will take time for him to heal. I dont think I felt really great until almost 2 months after my last treatment. Tell your dad to hang in there.
dad isn't able to talk much right now. i know he feels discouraged and has even said maybe the cancer is back. i read your post to him and it's reassuring that you went through exactly what's happening to him now. i tried to tell him the exhaustion is supposed to be normal, but to hear you describe how he's feeling might encourage him more.
i'm so glad your test came back clear the dizziness must be tough...is it like vertigo? i had that for 2 months and thought i'd go nuts. fingers crossed that yours goes in a month. dad did manage a chuckle at you gagging at the smell of ensure again, he won't be having that ever again when he's through this too lol
elaine0 -
Hi Dadbany said:thank you sirena
dad isn't able to talk much right now. i know he feels discouraged and has even said maybe the cancer is back. i read your post to him and it's reassuring that you went through exactly what's happening to him now. i tried to tell him the exhaustion is supposed to be normal, but to hear you describe how he's feeling might encourage him more.
i'm so glad your test came back clear the dizziness must be tough...is it like vertigo? i had that for 2 months and thought i'd go nuts. fingers crossed that yours goes in a month. dad did manage a chuckle at you gagging at the smell of ensure again, he won't be having that ever again when he's through this too lol
elaine
It is exactly like vertigo. During treatments I had a day that it lasted for 8 hours, couldnt move or Id throwup. Not good when you are barily eating anyway.
Email me on my private email address sirenaf40@aol.com. If you like I will give you my number and anytime you think you dad just needs to hear how someone else went through what he is going through, Id be more than happy to chat on the phone. Trust me, I wish Id had someone to say "what the heck is this" when I was going through it, so Im here to help anybody!
Look forward to getting to know all of you!
Sirena0 -
thxSIRENAF42 said:Hi Dad
It is exactly like vertigo. During treatments I had a day that it lasted for 8 hours, couldnt move or Id throwup. Not good when you are barily eating anyway.
Email me on my private email address sirenaf40@aol.com. If you like I will give you my number and anytime you think you dad just needs to hear how someone else went through what he is going through, Id be more than happy to chat on the phone. Trust me, I wish Id had someone to say "what the heck is this" when I was going through it, so Im here to help anybody!
Look forward to getting to know all of you!
Sirena
hey sirena, thanks so much! it's so good of you to offer to help.
elaine0 -
Catching up
Relatively new to the site...did sign on a couple of months ago....diagnosed with ENB in Oct 02....surgery followed by radiation beginning in Nov 02.....now seeing my surgeon once a year ( no longer doing MRI's)....no sense of smell...must irrigate 2X a day...other than that doing fine....nice to hear others are as well...very small community we are.0 -
Good news Elliot16Elliot16 said:Catching up
Relatively new to the site...did sign on a couple of months ago....diagnosed with ENB in Oct 02....surgery followed by radiation beginning in Nov 02.....now seeing my surgeon once a year ( no longer doing MRI's)....no sense of smell...must irrigate 2X a day...other than that doing fine....nice to hear others are as well...very small community we are.
Thanks for the reassurance that we can all overcome this cancer, I have renewed hope and would love to hear your story sometime.
Cheers and Blessings,
Patti0 -
ENB & Lots of good infoPBailey said:Good news Elliot16
Thanks for the reassurance that we can all overcome this cancer, I have renewed hope and would love to hear your story sometime.
Cheers and Blessings,
Patti
I was diagnosed in Feb 2002, had crano-facial surgery, radiation & chemo, wondered if food would ever taste different than cardboard. Tumor location in ethmoid sinus, penetrated through cribiform plate & just into brain. In 2003, had radical neck dissection as they found 5 nodes on r/side of neck (luckily my neck is skinny, so it doesn't look too bad). That was followed by more radiation & amiphostine treatments. Luckily, I still have some taste but smell is totally gone.
I went through lots of ups & downs, had wonderful Sisters who volunteered at the radiation dept at St Joseph Hospital, & I keep in contact with them as they helped keep my humor up through all the treatments. I'm currently on thyroid & seizure medicine, and doing very well now, just dealing with a few issues with eyes. Just went in for my annual MRI & the scan looks great.
Haven't been on forum for awhile, and it's a pleasure to hear everyone's comments about the positive/negative aspects of ENB & life. Hope everyone keeps up the positive outlooks & look forward to reading more responses in the future!0 -
Congrats Happe100happe100 said:ENB & Lots of good info
I was diagnosed in Feb 2002, had crano-facial surgery, radiation & chemo, wondered if food would ever taste different than cardboard. Tumor location in ethmoid sinus, penetrated through cribiform plate & just into brain. In 2003, had radical neck dissection as they found 5 nodes on r/side of neck (luckily my neck is skinny, so it doesn't look too bad). That was followed by more radiation & amiphostine treatments. Luckily, I still have some taste but smell is totally gone.
I went through lots of ups & downs, had wonderful Sisters who volunteered at the radiation dept at St Joseph Hospital, & I keep in contact with them as they helped keep my humor up through all the treatments. I'm currently on thyroid & seizure medicine, and doing very well now, just dealing with a few issues with eyes. Just went in for my annual MRI & the scan looks great.
Haven't been on forum for awhile, and it's a pleasure to hear everyone's comments about the positive/negative aspects of ENB & life. Hope everyone keeps up the positive outlooks & look forward to reading more responses in the future!
My ENB was in the Ethmoid sinus as well, luckily they caught it before i went into brain or eyes, but it had spread into my nasopharnyx as well. Im glad you are doing well, and your MRI was clean. Give me a warm fuzzy feeling and hope for clean checkups myself!
Sirena0 -
similar cancer/treatmentjejrdn said:All done with radiation....YEY!!
Just finished the last of my 33 treatments on Friday 3/20, the first day of spring!! I decided to keep the mask. I am going to paint it or something and hang it up in my home office. I had mixed feelings when I ended the last treatment. Sad to say goodbye to the team that treated me but excited that this part is behind me. I was very, very fortunate to not get any bad side effects. Didn't lose sense of taste, didn't lose my saliva. I didn't get any mouth sores or mucousa. Didn't have any fatigue or problems eating. I just got a little red in the face and my hair thinned out a little around the back of my head. So I feel really blessed that it was as good as it was. I followed a pretty strict nutrition and execise regiment during the whole treatment process and it seemed to have helped. Now I follow up with the radiation doctor April 15th. If everything looks good then I get turned over to the surgeon and he checks me out to make sure there aren't any signs of cancer. Then I go to the prosthodontist to get fitted for a more permanent looking mouth peice that will have some teeth. So little by little I am getting to feel normal again. Hope everyone else is doing well. Just wanted to give an update. Take it easy!!!
Brian
Brian.
In reading your postings, it seems we have had very similar experience in the discovery, type and treatment. I was just two months behind you as I finished my chemo/radiation the first of June.
If you are still coming into the site, drop me a line. You are the FIRST I have found with maxillary sinus cancer that was treated like mine (including the removal of half of the roof of the mouth, upper jaw, part of the cheek bone--and in my case removal of the lymph gland in my neck). I would really like to keep in touch and see how things continue for both of us.
Thanks
John0 -
Similar Cancer/TreatmentRedE2NJoy said:similar cancer/treatment
Brian.
In reading your postings, it seems we have had very similar experience in the discovery, type and treatment. I was just two months behind you as I finished my chemo/radiation the first of June.
If you are still coming into the site, drop me a line. You are the FIRST I have found with maxillary sinus cancer that was treated like mine (including the removal of half of the roof of the mouth, upper jaw, part of the cheek bone--and in my case removal of the lymph gland in my neck). I would really like to keep in touch and see how things continue for both of us.
Thanks
John
Hi John,
Good to hear from you. Your situation does seem very similar. Although, I did not have to get chemotherapy. My cancer was caught relatively early as it did not advance to any lymph nodes. With the surgery and radiation it appears that I am cancer free. My PetScans have been coming back mostly clean. There is just minor activity around the defect made where the bone and tissue were removed. I have my next PetScan in November and they are hoping to see that gone. I keep praying for that. For now I alternate once a month seeing the oncologist and then the radiologist. I am still working with the prosthodontist as he is fitting me with a new optorator plate which will be made out of metal and will have teeth. I should have that all done by the end of October. I really would like to keep in contact with you. If you want my email address just let me know of if you would rather continue posting on the discussion board that is fine too. Let me know. Keep the faith and talk to you soon.
Brian0 -
LUMPSjmatt 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...
I would suggest to get to a oral surgeon for a biopsy/ct scan ASAP. Fortunately in Canada this is all paid for. My husband had a lump on his upper palate the size of a PEA, and his mouth was burning a lot. He couldn't wear his dentures. So our dentist gave him a pan scan and immediately sent us to an oral surgeon that day. The next day a biopsy was performed. One week later he was diagnosed with Stage 4 of the Maxillary sinus. October 21/09 they took out a tumour after 19 hours of surgery the size of an ORANGE..............He starts 30 RT's on Jan 25/2010.
Please do not hesitate and run to your doctor. Cancer does not wait for anyone.
Take care and God bless you.0 -
ESTHESIONEUROBLASTOMA - suggestions required
Hi! I am ppn from India,
My father has got this disease and I am very upset today because I was not hoping that this type of disease doctor will tell.
I want your help. My father just got operated on 31.12.2009 and before operation he was not getting breath and we were not getting this name but after got operated he is taking breath but in the biopsy and IHC test the Nasal Polyp. shows the tissue of this disease.
I am very afraid because today after ceeing Contrast CT Scan and blood report the doctors confirmed that thas is the same disease.
Now please suggest me that what should I do and which type of care I can take for my loving father. Also suggest the place where I can get help.
Thnaks and Regards0 -
rad burnbany said:hi brian
i think it would be very helpful if you let me know how you're doing and i let you know how my dad is doing. i've been hounding the radiation department trying to get my dad's treatment started, hopefully they said by next week. when will you be starting yours? i think you and dad will be going through the stages at the same time? i have been reading through this site and making notes from so many ppl generously sharing their experiences, problems and solutions. i made a list to ask my dad's doctors, hoping i can do something to make this easier for him. i'll paste it here and it might save you some time looking through and trying to find ways to prepare. i hope it helps.
elaine
For mouth sores during and after radiation:
-Magic Mix or Magic Mouthwash
-use a rinse of warm water and Alum (it can be found in the spice section of your grocery store)
-votrex and pedisone seemed to help with the sores
-restoril diluted in water
-a liquid called "swish and swallow" helped
-difulcan
-rinse with baking soda/salt/club soda
-For dental breakage after radiation:
-treatment in an oxygen chamber for strengthening teeth and jaw bone?
-rinse mouth with water as much as possible
Lack of saliva:
-Ethyol /amiphostine injections approximately one half hour before the treatment used to try to save saliva glands from the radiation* (could cause extreme reaction/nausea too)
-Evoxac
-Biotene mouthwash and gum, spray and toothpaste * (excellent-may have to order on the internet)
-Aquaphor Healing Ointment. Its use it for radiation burns . Its an Advanced Therapy for dry, cracked, or irritated skin
-try thaton your lips
-Orajel Dry Mouth Moisturizing Gel especially before bedtime
-TheraSpray Mouth Moisturizing Breath Spray by Omni
-OraMoist. It is a time-released Dry Mouth Disc that you put on the roof of your mouth. It's good for 4 hours. use 3 a day.
-zinc supplements to improve taste bud regeneration?
-use humidifer
-drink tons of water
bany/all, my neck was so burned I couldn't move it w/o terrible pain. I used Aquaphor on it and it was amazing. I was able to move my head painfree after the first trmnt. Keep in mind that each person is different but I'd definitely try it for the pain.
I wish you all the best of luck and will pray for you. I hope to hear that you are cancer free in a few months. God Bless.
Debbie0 -
youjmatt 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: Jmatt, I am so extremely sorry to hear the hell you've been going through! I've read many of the post on here and unfortunately I think you may have cancer. You've been thru a lot and I understnad you have no money but you really must go to the doctor. I would recommend you tell you to check you for all types of cancer that can been in the neck, thorat and nose. Don't take no for an answer. If you read other post sections you will find more info. I wish I could be of more help but I don't have any answers for you. Again, I'm trulyy sorry for what you've been through and what you will go though getting your body healthy again. I will pray for you and ask God to bless you with a doctor who will find the problem and then get started on the cure (with God's help of course). Please hang in there and PLEASE, go to the doctor. I hope to hear from you after you've gone to the doctor and like I said, I'll be praying for you.
May God Bless you and make you strong again,
Debbie0 -
ENB - suggestionsppn said:ESTHESIONEUROBLASTOMA - suggestions required
Hi! I am ppn from India,
My father has got this disease and I am very upset today because I was not hoping that this type of disease doctor will tell.
I want your help. My father just got operated on 31.12.2009 and before operation he was not getting breath and we were not getting this name but after got operated he is taking breath but in the biopsy and IHC test the Nasal Polyp. shows the tissue of this disease.
I am very afraid because today after ceeing Contrast CT Scan and blood report the doctors confirmed that thas is the same disease.
Now please suggest me that what should I do and which type of care I can take for my loving father. Also suggest the place where I can get help.
Thnaks and Regards
Hello ppn from India,
I was diagnosed with Stage IV ENB in 2004. Underwent facial/skull resection, several radical neck disections, 2 x 7 week radiation treatments and 1 round of chemo. So far I'm OK but a little worse for wear. I was treated at the Cleveland Clinic in the US.
The Mayo Clinic has a good website on ENB and its treatment. Google "mayo ethesioneuroblastoma". I had a very bad case and I'm surviving and happy. Your father will be comforted by your support.
Best Regards,
JohnScot0
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