Olfactory neuroblastoma in the maxillary sinus - recent diagnosis

jejrdn
jejrdn Member Posts: 28
edited March 2014 in Head and Neck Cancer #1
I was diagnosed with this cancer 11/25/08. The only sympton I experienced was that I had begun getting teeth pain in the upper left side for quite a few months. I was told to take a decongestant to aleviate the pain. The dentist just thought is was allergies causing sinus pressure to press on my teeth nerves. That worked for a short time. The pain got so bad and the teeth began to loosen. I also developed an abcess above the troubled teeth. The dentist sent me to an endodontist thinking I needed a root canal. He found the teeth alive and fine but thought that there was a periodontal issue going on. The periodontist flapped the gum, cleaned out the abcess but said there was bone loss between the two teeth and they would have to come out. I asked him to biopsy the abcess because I was worried about cancer but he didn't think it warranted a biopsy. I went to one oral surgeon and told him about my cancer fear. He full x-rayed my head and didn't see anything suspicious. I went to a different oral surgeon for the extractions and asked him so biopsy the tissue because of my cancer fear. He too didn't think it warranted it. The plan was to do a bone graft and then replace the teeth with implants. The bone graft wasn't taking and I continued to have pain and problems. I bounced back between the oral surgeon and the dentist. Finally put my foot down and told the oral surgeon something was wrong. By that time the area was abcessed again. He cleaned it out and did finally send it out for biopsy. Next came the dreaded phone call with the diagnosis. I have had two surgeries since then. The first, more of an exploratory to confirm the cancer and the extent and remove the exposed portion of the tumor. The second was a partial maxillectomy and removal of a portion of my pallet and bone along the tooth line. Scans show that it hadn't spread to any lymph nodes or other parts of my body. The bone taken out did test positive for the cancer. My next steps are to get 6 weeks of radiation once I heal a couple more weeks from the last surgery. Now that I have to wear a prosthetic device in my mouth, I am worried about the side effects of the radiation on my mouth, throat and salivary glands. Any suggestions that can be provided going into this would be great. Especially if there is anything I can do in preparation for the radiation and to help make post radiation symptoms not as severe. Thanks very much in advance!!
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Comments

  • slickwilly
    slickwilly Member Posts: 334
    jejrdn
    Hi. I am sorry you have to deal with any of this. I had Lymphoma in the right side of my face and not in my lymph system where it should of been. I also had the nerve related problems. I lived on 50 motrin every two weeks for two years and had many root canals. The thought of cancer never entered the dentist minds. I finally developed a bump that was seen on cat scan as a mass. It still took almost 5 months, an operation and 7 boipsies to come up with my cancer. The nerve damage I have will never go away and as I saw a dentist yesterday it seems like I need 4 more root canals. Holy am I hurting! Anyway, I suspect they will make a mask for you and bolt you down to a platform for your radiation. They might make a tattoo on your chest to line things up each time. I had a clay like mold formed for my mouth to help protect saliva glands, taste buds ect. There will still be some loss but its not always permanent. Some people get things back and some don't. About two weeks into radiation I was getting pretty burnt up. Most facilities will recommend Aquaphor healing ointment for your outside skin. My sinus was burnt up and a humidifier will help with that and help prevent nose bleeds. My upper palet turned completly white and was quite painful. If eating is an issue you might have to go to Ensure or Boost type products for nutrition. I lived on Kentucky Fried Chicken as it was the only thing I could taste. Soups are good. Everyone has their own pain tolerance so don't be afraid to use whatever drugs you need to get through this. You will be tired and need lots of sleep. Its perfectly normal. I lost the little hairs inside my inner ear and had a few problems with balance. The outside burns will heal. I had problems with scar tissue in my sinus and had an operation last summer to help breathing through my nose. If they form a mouth mold really take some time to make it right so it protects as much as possible. Having a hospital radiation dept that knows what its doing is critical to your health and life. So make an informed decision on where your going to have it done. Ask questions! I would have my radiation done early in the day so I could drive the 180 miles home on the weekends. So if your out of town having the treatments keep this in mind and don't be afraid to ask for a schedule change. After everything was done I survived. But I still have the facial nerve damage. My face hates the cold or people messing with my teeth. Sometimes everything can't get fixed and we just have to adjust our life to it. As I lost about half my saliva glands and taste buds I use Biotene tooth paste and mouthwash. My mouth feels much better after switching to these products. And I lean towards spicy foods I can taste. Well best of luck and I hope I helped some. Slickwilly
  • jejrdn
    jejrdn Member Posts: 28

    jejrdn
    Hi. I am sorry you have to deal with any of this. I had Lymphoma in the right side of my face and not in my lymph system where it should of been. I also had the nerve related problems. I lived on 50 motrin every two weeks for two years and had many root canals. The thought of cancer never entered the dentist minds. I finally developed a bump that was seen on cat scan as a mass. It still took almost 5 months, an operation and 7 boipsies to come up with my cancer. The nerve damage I have will never go away and as I saw a dentist yesterday it seems like I need 4 more root canals. Holy am I hurting! Anyway, I suspect they will make a mask for you and bolt you down to a platform for your radiation. They might make a tattoo on your chest to line things up each time. I had a clay like mold formed for my mouth to help protect saliva glands, taste buds ect. There will still be some loss but its not always permanent. Some people get things back and some don't. About two weeks into radiation I was getting pretty burnt up. Most facilities will recommend Aquaphor healing ointment for your outside skin. My sinus was burnt up and a humidifier will help with that and help prevent nose bleeds. My upper palet turned completly white and was quite painful. If eating is an issue you might have to go to Ensure or Boost type products for nutrition. I lived on Kentucky Fried Chicken as it was the only thing I could taste. Soups are good. Everyone has their own pain tolerance so don't be afraid to use whatever drugs you need to get through this. You will be tired and need lots of sleep. Its perfectly normal. I lost the little hairs inside my inner ear and had a few problems with balance. The outside burns will heal. I had problems with scar tissue in my sinus and had an operation last summer to help breathing through my nose. If they form a mouth mold really take some time to make it right so it protects as much as possible. Having a hospital radiation dept that knows what its doing is critical to your health and life. So make an informed decision on where your going to have it done. Ask questions! I would have my radiation done early in the day so I could drive the 180 miles home on the weekends. So if your out of town having the treatments keep this in mind and don't be afraid to ask for a schedule change. After everything was done I survived. But I still have the facial nerve damage. My face hates the cold or people messing with my teeth. Sometimes everything can't get fixed and we just have to adjust our life to it. As I lost about half my saliva glands and taste buds I use Biotene tooth paste and mouthwash. My mouth feels much better after switching to these products. And I lean towards spicy foods I can taste. Well best of luck and I hope I helped some. Slickwilly

    Thanks very much for your
    Thanks very much for your information and quick reply. I already had the mask made for the radiation treatments. I will ask about the mold that you had done and seee if there is something similar that I can get. The radiation I am having is IMRT using a state of the art tomotherapy machine. It is the only one of it's kind in my state at this time. They can manipulate and bend the radiation beams to the shape of the area being treated so that the strongest doses go there and lower doses go to areas that they don't want to affect. So I am hoping with this new way of doing it will have a smaller impact on my over all side effects. I like that you say after everything you survived. That is the main goal. I can live with the changes I will have as long as the cancer is gone. I hope you do okay with the root canals. I can't imagine what that must be like for you now but I wish you the best. Thanks again for your help. I really appreciate it.
  • bany
    bany Member Posts: 38
    jejrdn said:

    Thanks very much for your
    Thanks very much for your information and quick reply. I already had the mask made for the radiation treatments. I will ask about the mold that you had done and seee if there is something similar that I can get. The radiation I am having is IMRT using a state of the art tomotherapy machine. It is the only one of it's kind in my state at this time. They can manipulate and bend the radiation beams to the shape of the area being treated so that the strongest doses go there and lower doses go to areas that they don't want to affect. So I am hoping with this new way of doing it will have a smaller impact on my over all side effects. I like that you say after everything you survived. That is the main goal. I can live with the changes I will have as long as the cancer is gone. I hope you do okay with the root canals. I can't imagine what that must be like for you now but I wish you the best. Thanks again for your help. I really appreciate it.

    hi jejrdn, i'm sorry you're
    hi jejrdn, i'm sorry you're going through this. my dad is in a simialr situation as you, he had a total maxillectomy and will begin radiation soon. this information helps me alot too in trying to prepare for what he will need. good luck with the radiation :)

    elaine
  • wboaz
    wboaz Member Posts: 48
    jejrdn said:

    Thanks very much for your
    Thanks very much for your information and quick reply. I already had the mask made for the radiation treatments. I will ask about the mold that you had done and seee if there is something similar that I can get. The radiation I am having is IMRT using a state of the art tomotherapy machine. It is the only one of it's kind in my state at this time. They can manipulate and bend the radiation beams to the shape of the area being treated so that the strongest doses go there and lower doses go to areas that they don't want to affect. So I am hoping with this new way of doing it will have a smaller impact on my over all side effects. I like that you say after everything you survived. That is the main goal. I can live with the changes I will have as long as the cancer is gone. I hope you do okay with the root canals. I can't imagine what that must be like for you now but I wish you the best. Thanks again for your help. I really appreciate it.

    IMRT
    Hi jejrdn,

    I had IMRT treatments + chemotherapy for cancer of the tonsil. I have about 10% salivary function after 3 years. Things natural taste mostly OK. Things artifical (sweetners and stuff) taste terrible. Anyway, read through the previous postings as someone talked about some drugs that can help with the radiation. Some people tolerate them better than others but you should ask your radiation doctor about it.

    I've said it before in here, you have to fight and yell for the proper attention and treatments. Don't worry about being a pest as it is your life they are playing with and unless you call attention to even minor things you will be sent through the system like a number without a name.

    Good luck, I'm praying for you!

    Wayne
  • jejrdn
    jejrdn Member Posts: 28
    wboaz said:

    IMRT
    Hi jejrdn,

    I had IMRT treatments + chemotherapy for cancer of the tonsil. I have about 10% salivary function after 3 years. Things natural taste mostly OK. Things artifical (sweetners and stuff) taste terrible. Anyway, read through the previous postings as someone talked about some drugs that can help with the radiation. Some people tolerate them better than others but you should ask your radiation doctor about it.

    I've said it before in here, you have to fight and yell for the proper attention and treatments. Don't worry about being a pest as it is your life they are playing with and unless you call attention to even minor things you will be sent through the system like a number without a name.

    Good luck, I'm praying for you!

    Wayne

    Thanks Wayne for the
    Thanks Wayne for the feedback. It is helpful to know that there are other people going through or have gone through what I am going through. It is hard to talk to people that aren't or haven't been in these shoes. It helps to keep my mind positive and to keep pushing forward. Glad you mentioned about letting them know about even minor things. Some of the pains and twinges I have I wouldn't probably say anything about but now I know I have to. Thanks again.

    Brian
  • jejrdn
    jejrdn Member Posts: 28
    bany said:

    hi jejrdn, i'm sorry you're
    hi jejrdn, i'm sorry you're going through this. my dad is in a simialr situation as you, he had a total maxillectomy and will begin radiation soon. this information helps me alot too in trying to prepare for what he will need. good luck with the radiation :)

    elaine

    Hi Elaine,
    I hope that

    Hi Elaine,

    I hope that everything goes well with your Dad. If you don't mind, please keep me informed on his progress. Thanks for the good thoughts. My good thoughts go out to you and your Dad.

    Brian
  • bany
    bany Member Posts: 38
    jejrdn said:

    Thanks Wayne for the
    Thanks Wayne for the feedback. It is helpful to know that there are other people going through or have gone through what I am going through. It is hard to talk to people that aren't or haven't been in these shoes. It helps to keep my mind positive and to keep pushing forward. Glad you mentioned about letting them know about even minor things. Some of the pains and twinges I have I wouldn't probably say anything about but now I know I have to. Thanks again.

    Brian

    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
  • jejrdn
    jejrdn Member Posts: 28
    bany 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

    Hi Elaine
    Thanks for the list you posted. It helps having it all together like that. I will be starting my treatments in 1 to 2 weeks. I had my last surgery on 12/30 and the surgeon wants to check me again next week to make sure that the healing is sufficient enough to start radiation. The last check up I had he noticed some polyps forming in what remains of the maxillary sinus. He wanted to talk to the radiologist about it to see if they need to be healed or taken out before the radiation starts. He wanted to make sure that they are not in the way of radiation when treatment starts. The surgeon said it wasn't a big deal to remove them if necessary but he would still get a biopsy on them to be sure it isn't anything else. Right now it looks like it is just from the healing process. So yes, it looks like your Dad and I will be starting up treatments around the same time. Just curious, since your Dad had the total maxillectomy, did they do it through his mouth or did they have to cut outside on the face? My partial maxillectomy was done through the mouth. Just wondering if he has a prosthetic mouth plate like me. I am more concerned about not being able to wear it if I get a lot of mouth sores and mouth pain. Thanks again and I will definitely keep you posted on my progress.

    Brian
  • jejrdn
    jejrdn Member Posts: 28
    bany 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

    Hi again Elaine...
    Sorry, I also meant to ask you how long ago was your Dad's maxillectomy? Just curious how long it has been and the amount time you have been trying to get the radiation started. Thanks.

    Brian
  • Elliot16
    Elliot16 Member Posts: 6
    Radiation
    I was diagnosed with an esthesioneuroblastoma and had a craniofacial resection on 11/22/02. That was followed by 8 weeks of radiation. The radiation itself was not a problem although my taste buds were obviuosly affected. They are better now but not perfect. I found any tomato based products, due to its acidity were the most tasteful.I wish you all the luck in the world.
  • jejrdn
    jejrdn Member Posts: 28
    Elliot16 said:

    Radiation
    I was diagnosed with an esthesioneuroblastoma and had a craniofacial resection on 11/22/02. That was followed by 8 weeks of radiation. The radiation itself was not a problem although my taste buds were obviuosly affected. They are better now but not perfect. I found any tomato based products, due to its acidity were the most tasteful.I wish you all the luck in the world.

    Encouraging
    Hi Elliot16,

    It is encouraging to know that you had that done so long ago. And I am sure that technology was quite a bit different at that time. My case is a little more unique due to this type of cancer being located in the maxillary sinus and not above the nose like it should be. If you don't mind me asking, how often do you get tested/checked up. Thanks very much.

    Brian
  • Elliot16
    Elliot16 Member Posts: 6
    jejrdn said:

    Encouraging
    Hi Elliot16,

    It is encouraging to know that you had that done so long ago. And I am sure that technology was quite a bit different at that time. My case is a little more unique due to this type of cancer being located in the maxillary sinus and not above the nose like it should be. If you don't mind me asking, how often do you get tested/checked up. Thanks very much.

    Brian

    I had my surgery at
    I had my surgery at Memorial/Sloan Kettering and now follow up with my surgeon annually. For my own piece of mind, I am seeing a local ENT on the 6 month interval just to have someone put a scope up my nose at least every six months.

    If I can be of any help, do not hesitate to ask.
  • bany
    bany Member Posts: 38
    jejrdn said:

    Hi again Elaine...
    Sorry, I also meant to ask you how long ago was your Dad's maxillectomy? Just curious how long it has been and the amount time you have been trying to get the radiation started. Thanks.

    Brian

    I hope everything works out
    I hope everything works out for you to start your radiation soon. dad's surgery was june 2008, they made an incision along the side of his nose, from his eye down to under his nose and top lip. he decided not to have radiation as the surgeon managed to extract the cancer leaving clean margins. dad is a pilot and didn't want to lose his eye during radiation. he has a prothsesis that they have been adjusting every week for the past 7 months. he hasn't been healing with constant sores and pain. he doesn't wear his prothsesis anymore, he's learned to talk, eat and drink without it. pureed stews, soups and smoothies with ensure each day. i just ordered a cookbook sash recommended "easy to swallow, easy to chew' to try to give him some variety and keep his weight up.

    the doctors and test kept coming back saying he was cancer-free. they biopsied an unusal area in december 2008 and we were just told the cancer has returned in the first week of january 2009. so it has been 2 weeks trying to get the radiation started.

    we have been trying to get it started so quickly because since the biopsy, my dad's pain has escalated. the cancer is pressing on the nerves of his face and each day it gets worse. some days, he's unable to get out of bed, can't even talk through the pain. he is now on 75 mg of fentenyl by patch, 20 ml of liquid morphine every 2 hrs, lyrica, tylenol and advil just to get through and it's worse each day. so we're scared.

    sorry i rambled on a bit there lol it took me longer than i thought to explain that he hasn't been waiting too long for radiation. he has the mask made, the mri finished, a mould made of his lower teeth, so he's good to go. he was laughing today that we're actually looking forward to his radiation starting, like asking to be hit with a hammer when everything already hurts lol

    elaine
  • bany
    bany Member Posts: 38
    Elliot16 said:

    I had my surgery at
    I had my surgery at Memorial/Sloan Kettering and now follow up with my surgeon annually. For my own piece of mind, I am seeing a local ENT on the 6 month interval just to have someone put a scope up my nose at least every six months.

    If I can be of any help, do not hesitate to ask.

    radiation started
    hi elliot, i'm glad you have been so long cancer free :) when you said the radiation wasn't a problem except taste buds, did you not have a problem with burns or loss of saliva? this has been the biggest thing i thought my dad would be facing?

    hi again brian, have you had any news on when your radiation will start? my dad started today. we just had the best news from his MRI results, his cancer is superficial in the lining of his cheek, it hasn't spread...no metastises :) his pain has been from damaged nerves, not cancer regrowth. they have started him on IV lidocaine and this is the first time his pain has been controlled. we are so hopeful :)

    elaine
  • jejrdn
    jejrdn Member Posts: 28
    bany said:

    radiation started
    hi elliot, i'm glad you have been so long cancer free :) when you said the radiation wasn't a problem except taste buds, did you not have a problem with burns or loss of saliva? this has been the biggest thing i thought my dad would be facing?

    hi again brian, have you had any news on when your radiation will start? my dad started today. we just had the best news from his MRI results, his cancer is superficial in the lining of his cheek, it hasn't spread...no metastises :) his pain has been from damaged nerves, not cancer regrowth. they have started him on IV lidocaine and this is the first time his pain has been controlled. we are so hopeful :)

    elaine

    Hi Elaine
    I just got the green light from my surgeon to start the radiation this Wednesday 2/4. He had to biopsy a couple of polyps last week and wanted to make sure it was clean. The biopsy came back negative so things look good so far. I am just over 4 weeks healing time from my last surgery. They normally like to wait 6 weeks but he was pretty pleased with how well I healed that he didn't want to hold up the radiation treatments unnecassarily. Nervous to see how I will respond to the radiation but there is no looking back now. I just have to plow forward and beat this thing. Glad that your Dad's MRI gave great news. That is awesome! Tell him I said good luck with his radiation. We'll have to compare notes as we go along. Take care and talk to you soon.

    Brian
  • jejrdn
    jejrdn Member Posts: 28
    bany said:

    radiation started
    hi elliot, i'm glad you have been so long cancer free :) when you said the radiation wasn't a problem except taste buds, did you not have a problem with burns or loss of saliva? this has been the biggest thing i thought my dad would be facing?

    hi again brian, have you had any news on when your radiation will start? my dad started today. we just had the best news from his MRI results, his cancer is superficial in the lining of his cheek, it hasn't spread...no metastises :) his pain has been from damaged nerves, not cancer regrowth. they have started him on IV lidocaine and this is the first time his pain has been controlled. we are so hopeful :)

    elaine

    Hi Elaine
    I just got the green light from my surgeon to start the radiation this Wednesday 2/4. He had to biopsy a couple of polyps last week and wanted to make sure it was clean. The biopsy came back negative so things look good so far. I am just over 4 weeks healing time from my last surgery. They normally like to wait 6 weeks but he was pretty pleased with how well I healed that he didn't want to hold up the radiation treatments unnecassarily. Nervous to see how I will respond to the radiation but there is no looking back now. I just have to plow forward and beat this thing. Glad that your Dad's MRI gave great news. That is awesome! Tell him I said good luck with his radiation. We'll have to compare notes as we go along. Take care and talk to you soon.

    Brian
  • bany
    bany Member Posts: 38
    jejrdn said:

    Hi Elaine
    I just got the green light from my surgeon to start the radiation this Wednesday 2/4. He had to biopsy a couple of polyps last week and wanted to make sure it was clean. The biopsy came back negative so things look good so far. I am just over 4 weeks healing time from my last surgery. They normally like to wait 6 weeks but he was pretty pleased with how well I healed that he didn't want to hold up the radiation treatments unnecassarily. Nervous to see how I will respond to the radiation but there is no looking back now. I just have to plow forward and beat this thing. Glad that your Dad's MRI gave great news. That is awesome! Tell him I said good luck with his radiation. We'll have to compare notes as we go along. Take care and talk to you soon.

    Brian

    hi brian
    congratulations on the good news. how did your first day go? i've been in the hospital with my dad most days, he's been admitted for the last week trying to control his pain. there have been so many ups and downs with how they can control it, today has been a bit better and he's on his 4th treatment.

    i told him about you and he very much wants to compare notes and wishes you luck too. he had an unusual first treatment that may have been exagerated from side effects of one of his pain meds. he saw light similar to a strobe light, so bright it was painful and his eyes remained extremely light sensitive. so much so that he refused to go the next day. his pain escalated over the weekend as they tried to change drugs. i'm so happy to say he has had three in a row now and nothing unusual since a slight feeling of heat on the second dose.

    i wonder if anyone else has had different experiences with radiation, the radiologist suggested that maybe these light and heat sensations might be from stimulating the optic or other nerves.

    i hope you're doing well, brian

    elaine
  • jejrdn
    jejrdn Member Posts: 28
    bany said:

    hi brian
    congratulations on the good news. how did your first day go? i've been in the hospital with my dad most days, he's been admitted for the last week trying to control his pain. there have been so many ups and downs with how they can control it, today has been a bit better and he's on his 4th treatment.

    i told him about you and he very much wants to compare notes and wishes you luck too. he had an unusual first treatment that may have been exagerated from side effects of one of his pain meds. he saw light similar to a strobe light, so bright it was painful and his eyes remained extremely light sensitive. so much so that he refused to go the next day. his pain escalated over the weekend as they tried to change drugs. i'm so happy to say he has had three in a row now and nothing unusual since a slight feeling of heat on the second dose.

    i wonder if anyone else has had different experiences with radiation, the radiologist suggested that maybe these light and heat sensations might be from stimulating the optic or other nerves.

    i hope you're doing well, brian

    elaine

    Hi Elaine
    The first day went really well. I am surprisingly not nervous of the whole thing. I think because I feel like I am taking control some what and actively doing something to beat this cancer. When I was just waiting around for things to get going I sometimes felt that I was going to crawl out of my skin. But I feel good now. I met with the Doctor, Nurse and Nutritionist. Went over the whole plan so that I understood exactly where they are radiating and what to expect. The whole team where I go has been great. So 1 down and 32 more treatments to go. I finish on March 20th the first day of spring and the season of renewal.
    I feel bad that your dad is having so much pain. Is it since starting radiation or was it pain that was there before and is getting worse. Tell him to hang in there and that I hope he gets relief. Strange thing about the eye sight. Has he been to an eye doctor. I went to the eye doctor when I had some weird symptoms with my left eye before I was diagnosed with the cancer. I had like a white shadow in my peripheral vision sometimes and a bright floater when looking straight on occasionally. After the tumor was removed the peripheral vision problem went away and the floater is slowly getting less prominent. At the time I just wanted to be sure that my eye was alright. I went back to him last week and told him the peripheral problem is gone and the floater is better and he thinks the tumor could have been pressing on my optic nerve but the eye looks very healthy. Maybe it would be a good idea to just have an eye doctor check him out. Just a suggestion. Glad that he is doing a little better now. Well take care and keep me up to speed on how everything is going.

    Brian
  • SIRENAF42
    SIRENAF42 Member Posts: 202
    Elliot16 said:

    Radiation
    I was diagnosed with an esthesioneuroblastoma and had a craniofacial resection on 11/22/02. That was followed by 8 weeks of radiation. The radiation itself was not a problem although my taste buds were obviuosly affected. They are better now but not perfect. I found any tomato based products, due to its acidity were the most tasteful.I wish you all the luck in the world.

    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 [email protected].
  • jejrdn
    jejrdn Member Posts: 28
    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 [email protected].

    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