Esthesioneuroblastoma

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Comments

  • namaste
    namaste Member Posts: 11
    JPelar said:

    Mr. Bill, I'm wondering why you are going through chemo in advance of surgery... I had no chemo at all. In fact, I'm told that there is no clear cut chemo plan for Esther (what I call my esthesio tumor). For me, they just took it all out (tennis ball size) through my nose, and then I had 6 weeks of radiation three months later. Yours sounds very similar to mine. You should seriously read my book (Dealing with the Big C: Compassion). Save for you having chemo, your situation sounds remarkably similar to mine. Maybe the book will help you to see what's coming, and you'll be better prepared. Plus it's funny; I use humor to get through all stressful situations in my life, including Esther. Meanwhile, my sense of taste is actually fine now; back to what it was before surgery. I'm convinced my tumor was growing slowly for a very long time, and my sense of smell was pretty lousy as a result, and my sense of taste adjusted a long time ago. So, losing smell completely as a result of the surgery wasn't really much of a drop off.

    Good luck.

    Jack Pelar

    DEALING WITH THE BIG C -
    DEALING WITH THE BIG C - COMPASSION...wow...I could not put it down. Husband had esthioneuroblastomaectomy in 2006...stroke post surgery, unconcious for 1 month, 2 year IV antibiotic for MRSA at surgical site,2 additional frontal craniotomies searching for infection, radiation,seizures, rehab to walk/talk/feed self........currently dealing with macular degeneration in eye(blind in R eye) that was most radiated and myeloid maturation arrest probably from radiation......he is one of the funniest guys I know,says he was blessed to have cancer, he runs on treadmill, thinks each day is wonderful. I now can appreciate how blessed he was to be unconcious.....as he explains to inquiries, "I don't know I missed it all" Thank John and Colleen
  • JayWade65
    JayWade65 Member Posts: 2
    SIRENAF42 said:

    Treatment
    Has your Esthesio spread to the bone? Is this why they are wanting Chemo. I had Estheso and underwent two endoscopic sinus surgeries to remove the tumor from the Ethmoid sinus, right maxilary sinus and nasopharnyx and then several months later - 6 weeks IMRT radiation. I am now 3 years cancer free.

    I lose my sense of smell on days when I have allergies or any stuffiness, and my taste is better, but I just dont like the things I used to. Other than that, all I deal with is the side effects from radiation (dry mouth, thyroid issues, brain fog, forgetfullness, chronic dry eye, just to name a few) but better than the alternative :)

    Dry Mouth
    There is supposed to be a medicine you can take for the dry mouth. They didn't have it back in 1988 when I had my first bout with ENB. It is recommended because the dry mouth can have detrimental effects on your teeth. I can attest to that as all my teeth are crowns now.
  • JayWade65
    JayWade65 Member Posts: 2

    under treatment
    Hi, I've recently been diagnosed with esthesioneuroblastoma. It went misdiagnosed as a bad sinus infection for a month before someone wised up and did a CT which came back abnormal. Following this I had a Biopsy and then a PET scan to discover how badly it had spread. Thankfully though large, it is contained in my sinus and nose cavity on my left side only.

    I've completed my first round of chemo (3 types) and start my next round on 11/15/11. I met with my surgeon today and was informed that surgery is the final solution no matter how successful the chemo is. Following that, radiation.

    I'll likely lose my sense if smell and taste as well. Not very excited about that but reading the responses here, it seems to vary wildly with each person. Maybe I'll get lucky :/

    I welcome any responses.

    WOW
    You sound exactly like me 23 years ago. In 1988, I had a severe sinus infection (which I always battled with) and after seeing a Otolarnyncologist, he gave me antibiotics, decongestants and a shot of celestone (steriod) and I felt great for 2 days. Then it cam back with a vengence. Eventually I was passed around until they did a nasal scope and found that almost my entire left sinus cavity even beginning to grow down into back of the throat had the massive tumor. 3 biopsies later and they called it a small cell carcinoma becuase back then the record was 200 esthesioneuroblastomas. They did a radical maxillectomy and gutted the left side of my face which is now a big cavity. Half my palate all of my sinus and my left eye were taken out and the skinned all the tissue out and took skin from my leg to put back in the cavity. I have a prosthetic partial in my mouth that covers the missing section of the palate and I wear an eye patch to cover the left eye socket. An amazing job done back then by the Assistant Director of Otolarnyncology at the U. of Texas Health Science Center. All I had to do was a lot of radiation for treatment. No Chemo and I have had it 2 more times (head and lung) and never had to do the Chemo (thank God). Today I am going for my follow-up MRI (head) and CT (Neck/Chest/Pelvis). I will pray that your smell and taste remain intact.

    Jay
  • marfo
    marfo Member Posts: 1
    JayWade65 said:

    WOW
    You sound exactly like me 23 years ago. In 1988, I had a severe sinus infection (which I always battled with) and after seeing a Otolarnyncologist, he gave me antibiotics, decongestants and a shot of celestone (steriod) and I felt great for 2 days. Then it cam back with a vengence. Eventually I was passed around until they did a nasal scope and found that almost my entire left sinus cavity even beginning to grow down into back of the throat had the massive tumor. 3 biopsies later and they called it a small cell carcinoma becuase back then the record was 200 esthesioneuroblastomas. They did a radical maxillectomy and gutted the left side of my face which is now a big cavity. Half my palate all of my sinus and my left eye were taken out and the skinned all the tissue out and took skin from my leg to put back in the cavity. I have a prosthetic partial in my mouth that covers the missing section of the palate and I wear an eye patch to cover the left eye socket. An amazing job done back then by the Assistant Director of Otolarnyncology at the U. of Texas Health Science Center. All I had to do was a lot of radiation for treatment. No Chemo and I have had it 2 more times (head and lung) and never had to do the Chemo (thank God). Today I am going for my follow-up MRI (head) and CT (Neck/Chest/Pelvis). I will pray that your smell and taste remain intact.

    Jay

    ENB spread to the lungs?
    Hey everyone,

    I have some questions about this cancer and this forum seems like a good place to post.

    My dad was diagnosed with ENB in 2007 after a routine surgery to remove nasal polyps. He was sent to Mayo in MN where he had surgery followed by radiation and some chemo. Earlier this year in January, just short of the 5 year mark, at one of his routine 6 month checks, they found another spot in his nose (PET scan remained clear) so they removed it. He returned to Mayo last week to get an MRI to check the surgery results and although the spot is clear, the doctor noticed a suspicious lymph node. A biopsy showed cancer cells. A PET scan has revealed that the cancer has spread to his lungs.

    I don't know how to process this information. It seems so quick that this has spread since his scan in January. Could it just not have showed up yet back then? This news is completely devistating to me. I am hoping to find some good information and maybe some positive stories from people. This seems to be the place. Any support would be wonderful.

    Has anyone had any mets? They plan on doing more chemo to see if that will shrink it, and if it does, they can then do radiation. Is surgery ever an option when it was spread to the lungs? I don't want to throw too many questions at my parents...

    Thank you in advance...
  • angel1974
    angel1974 Member Posts: 2
    JayWade65 said:

    WOW
    You sound exactly like me 23 years ago. In 1988, I had a severe sinus infection (which I always battled with) and after seeing a Otolarnyncologist, he gave me antibiotics, decongestants and a shot of celestone (steriod) and I felt great for 2 days. Then it cam back with a vengence. Eventually I was passed around until they did a nasal scope and found that almost my entire left sinus cavity even beginning to grow down into back of the throat had the massive tumor. 3 biopsies later and they called it a small cell carcinoma becuase back then the record was 200 esthesioneuroblastomas. They did a radical maxillectomy and gutted the left side of my face which is now a big cavity. Half my palate all of my sinus and my left eye were taken out and the skinned all the tissue out and took skin from my leg to put back in the cavity. I have a prosthetic partial in my mouth that covers the missing section of the palate and I wear an eye patch to cover the left eye socket. An amazing job done back then by the Assistant Director of Otolarnyncology at the U. of Texas Health Science Center. All I had to do was a lot of radiation for treatment. No Chemo and I have had it 2 more times (head and lung) and never had to do the Chemo (thank God). Today I am going for my follow-up MRI (head) and CT (Neck/Chest/Pelvis). I will pray that your smell and taste remain intact.

    Jay

    deciding
    In all reality, we all have trials to face, we all have mountains to climb, and we all have fears to overcome. I also think it's safe to assume that we compare our own personal struggles to everybody else's and believe our own to be more severe. With that being said, I have someone for you to compare problems with, ME. October of 2011, I was working concrete, but I was looking forward to the winter months because I would soon be working at a ski resort. One day at work, my nose started gushing blood like a tap and I was rushed to emerg. After a number of useless appointments, I finally got an appointment to check out the source of the problem. On November 16th I was told I have a tumor in my right nasal cavity. I was in for a biopsy a week later. I knew it was benign. "There is no way it's cancer. I'm 19!" I fooled myself until December 3rd. I received a referral form from the doctors secretary that I was supposed to take to a hospital in Toronto. As I looked over the form, I saw this word, esthesioneuroblastoma. The first line of it's Wikipedia article states, "Esthesioneuroblastoma is a rare form of cancer..." Imagine reading that 17 days before you turn 20. Talk about shock. The whole month of December was appointment after appointment, running back and forth downtown. I was told that they would do radiation and then surgery. I was lucky enough to have a nice radiation oncologist and very confident surgeon. I started radiation January 5th and had treatment on Monday to Friday until February 8th, 25 treatments in total. Near the end of it, I lost the little facial hair I had, and most of the hair on the sides and back of my head. I lost over 20lbs throughout the whole thing; quite a bit of weight considering I was a toothpick to begin with. The skin on my face and neck went internally red as if with 2nd degree burns. I ended up with canker sores all over the inside of my mouth, and the whole right side of my tongue had this ugly open wound that would not heal. Thick saliva also set in. It would get so thick that I would gag if I tried to swallow it. It would hang in blobs if i spat it out, as if it was gelatin. Eating became difficult and I was forced to drink meal supplements. I lost most taste, and what I could taste was less than desirable. The fatigue and lack of energy that came with it may have been one of the worst parts, I entirely lost all willpower. At one point I was ready to give up. Thank God he placed friends and family around me to get me motivated to keep on fighting. Since the end of radiation, I have healed quite well. Energy has returned and I feel motivated to move around every day. The ability to eat is back as well as nearly 15lbs. It was basically a month today, since the end of radiation treatment. Now we come to the exciting part of the story. The progression of esthesioneuroblastoma normally happens like this. It starts growing on your olfactory nerve, the part of your nose that smells. This is all the way up the nasal cavity above the eye, protected by the skull. It then grows with gravity and hangs down the nostril. Mine got a little funky and spread into my maxillary cavity which is the large cavity behind your cheek bone. It continued growing until it filled the whole cavity then started eating through the roof of my mouth. Three days ago, March 6th, I had an appointment with one of the three surgeons performing the operation. He gave me an idea of how they plan on doing the surgery. I will warn you now, if you don't think you can handle a somewhat graphic description, you should definitely skip this next paragraph...

    The plan so far is to start cutting beside my nose, down to my lip. Peel the skin back off my cheek. Remove my cheek bone so they can reach the tumor in that region. I will lose all the teeth from my eye tooth to my wisdom tooth on that side because the roots have been grabbed by the tumor. The next step will be to take a part of a small triangular bone from my shoulder blade and use it to replace the palette of my mouth. That piece of bone comes with muscle so they will have to incorporate some new blood vessels underneath my skin and down the side of my neck. They will cut into my neck so they can attach the vessels there. Then with miniature equipment they will go up my nose and remove as much as possible. Hopefully with this procedure they will be able to remove all the tumor, but if there is any question, they will have to continue with another "cut." They only plan to knock me out once so if this is the case then the surgery will continue. The next step will be to cut from one ear to another over the top of my skull. Lift the skin off my forehead and remove the top portion of my skull. My stomach still cringes at the thought. They will then be able to get to the olfactory nerve and be able to remove 100% of it. Between the brain and the sinus cavity there is a protective leather like covering. If the cancer has started eating through it then they will have to cut into my thigh and take a piece of similar fabric from there to replace that brain covering.

    After all this is said and done, I will have been unconscious for anywhere from 6-12 hours. I'm scared out of my mind.

    It wasn't until yesterday that they finally gave me a date. April 11th at Toronto General Hospital. This is when and where all this is supposed to go down. They estimate 1-2 weeks in hospital, and 2-3 months before I'm back to somewhat normal; but one year full recovery. I will lose my sense of smell completely but thats a small price to pay for my life. My eyesight will not be affected even though the tumor is pressing up under and beside my eyeball. I won't have teeth on the one side for a year at least. Implants can't be considered until I'm healed and a clip on denture may be my only option at that point, depending on the strength of the bone.

    He is also debating on doing a detox and natural herb way instead of doing this surgery..He has posponed his surgery that was to take place early april and trying the natural path first..I myself his aunt needs to know has anyone else out there tried that first or have any thoughts on this..He also speeks about the alkline level as long as it is high cancer can not grow..his back ground is his parents do not believe in doctors the believe in the natural way of living..Can anyone give us strond advice as I do not know if he is running out of time..He is considered late stage c....Please help anyone..
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    angel1974 said:

    deciding
    In all reality, we all have trials to face, we all have mountains to climb, and we all have fears to overcome. I also think it's safe to assume that we compare our own personal struggles to everybody else's and believe our own to be more severe. With that being said, I have someone for you to compare problems with, ME. October of 2011, I was working concrete, but I was looking forward to the winter months because I would soon be working at a ski resort. One day at work, my nose started gushing blood like a tap and I was rushed to emerg. After a number of useless appointments, I finally got an appointment to check out the source of the problem. On November 16th I was told I have a tumor in my right nasal cavity. I was in for a biopsy a week later. I knew it was benign. "There is no way it's cancer. I'm 19!" I fooled myself until December 3rd. I received a referral form from the doctors secretary that I was supposed to take to a hospital in Toronto. As I looked over the form, I saw this word, esthesioneuroblastoma. The first line of it's Wikipedia article states, "Esthesioneuroblastoma is a rare form of cancer..." Imagine reading that 17 days before you turn 20. Talk about shock. The whole month of December was appointment after appointment, running back and forth downtown. I was told that they would do radiation and then surgery. I was lucky enough to have a nice radiation oncologist and very confident surgeon. I started radiation January 5th and had treatment on Monday to Friday until February 8th, 25 treatments in total. Near the end of it, I lost the little facial hair I had, and most of the hair on the sides and back of my head. I lost over 20lbs throughout the whole thing; quite a bit of weight considering I was a toothpick to begin with. The skin on my face and neck went internally red as if with 2nd degree burns. I ended up with canker sores all over the inside of my mouth, and the whole right side of my tongue had this ugly open wound that would not heal. Thick saliva also set in. It would get so thick that I would gag if I tried to swallow it. It would hang in blobs if i spat it out, as if it was gelatin. Eating became difficult and I was forced to drink meal supplements. I lost most taste, and what I could taste was less than desirable. The fatigue and lack of energy that came with it may have been one of the worst parts, I entirely lost all willpower. At one point I was ready to give up. Thank God he placed friends and family around me to get me motivated to keep on fighting. Since the end of radiation, I have healed quite well. Energy has returned and I feel motivated to move around every day. The ability to eat is back as well as nearly 15lbs. It was basically a month today, since the end of radiation treatment. Now we come to the exciting part of the story. The progression of esthesioneuroblastoma normally happens like this. It starts growing on your olfactory nerve, the part of your nose that smells. This is all the way up the nasal cavity above the eye, protected by the skull. It then grows with gravity and hangs down the nostril. Mine got a little funky and spread into my maxillary cavity which is the large cavity behind your cheek bone. It continued growing until it filled the whole cavity then started eating through the roof of my mouth. Three days ago, March 6th, I had an appointment with one of the three surgeons performing the operation. He gave me an idea of how they plan on doing the surgery. I will warn you now, if you don't think you can handle a somewhat graphic description, you should definitely skip this next paragraph...

    The plan so far is to start cutting beside my nose, down to my lip. Peel the skin back off my cheek. Remove my cheek bone so they can reach the tumor in that region. I will lose all the teeth from my eye tooth to my wisdom tooth on that side because the roots have been grabbed by the tumor. The next step will be to take a part of a small triangular bone from my shoulder blade and use it to replace the palette of my mouth. That piece of bone comes with muscle so they will have to incorporate some new blood vessels underneath my skin and down the side of my neck. They will cut into my neck so they can attach the vessels there. Then with miniature equipment they will go up my nose and remove as much as possible. Hopefully with this procedure they will be able to remove all the tumor, but if there is any question, they will have to continue with another "cut." They only plan to knock me out once so if this is the case then the surgery will continue. The next step will be to cut from one ear to another over the top of my skull. Lift the skin off my forehead and remove the top portion of my skull. My stomach still cringes at the thought. They will then be able to get to the olfactory nerve and be able to remove 100% of it. Between the brain and the sinus cavity there is a protective leather like covering. If the cancer has started eating through it then they will have to cut into my thigh and take a piece of similar fabric from there to replace that brain covering.

    After all this is said and done, I will have been unconscious for anywhere from 6-12 hours. I'm scared out of my mind.

    It wasn't until yesterday that they finally gave me a date. April 11th at Toronto General Hospital. This is when and where all this is supposed to go down. They estimate 1-2 weeks in hospital, and 2-3 months before I'm back to somewhat normal; but one year full recovery. I will lose my sense of smell completely but thats a small price to pay for my life. My eyesight will not be affected even though the tumor is pressing up under and beside my eyeball. I won't have teeth on the one side for a year at least. Implants can't be considered until I'm healed and a clip on denture may be my only option at that point, depending on the strength of the bone.

    He is also debating on doing a detox and natural herb way instead of doing this surgery..He has posponed his surgery that was to take place early april and trying the natural path first..I myself his aunt needs to know has anyone else out there tried that first or have any thoughts on this..He also speeks about the alkline level as long as it is high cancer can not grow..his back ground is his parents do not believe in doctors the believe in the natural way of living..Can anyone give us strond advice as I do not know if he is running out of time..He is considered late stage c....Please help anyone..

    just my two cents
    Hello...I am not sure if two different people wrote this post, or if you, his aunt, wrote it like you were speaking for him? Is the April 11th surgery on hold now? I am confused....

    Anyway, I am not in the medical field and I don't have any deep pool of wisdom to draw from...and I hope I don't anger those who are into natural living and herbs etc....but my unprofessional gut reaction to doing detox and herbs instead of surgery is--NO WAY. I think it's like taking a perfume atomizer and filling it with water and using it to fight a forest fire. What did the doctors say when your nephew told them he was thinking of detox and herbs instead of surgery?

    But like I said, my opinion is worth about two cents. All of my research and all of my efforts, and all of my son's fighting spirit and all of the treatments we have tried have not been very effective in combating his brain tumors. So who knows. I sure can totally understand your nephew's desire to try something other than that surgery he described. It sounds like an absolute tortuous nightmare. Just please do not waste valuable time...if you don't see positive results pretty fast, please quit the herbal and detox strategy and go for the surgery ASAP.

    I really hope that your nephew is successful in beating this disease. It's beyond wrong for a 19 year old to have to face this. But his young age is a huge asset and will really help his recovery if he chooses the surgery, and it also increases his chances for surviving this condition.

    Please let us know what he decides and how he is doing. I really am emotionally invested in everyone on this site and I deeply care and want to know how they are doing. I will be thinking of you/your nephew and praying that he is an overcomer.

    Love and blessings,
    Cindy in Salem, OR
  • angel1974
    angel1974 Member Posts: 2

    just my two cents
    Hello...I am not sure if two different people wrote this post, or if you, his aunt, wrote it like you were speaking for him? Is the April 11th surgery on hold now? I am confused....

    Anyway, I am not in the medical field and I don't have any deep pool of wisdom to draw from...and I hope I don't anger those who are into natural living and herbs etc....but my unprofessional gut reaction to doing detox and herbs instead of surgery is--NO WAY. I think it's like taking a perfume atomizer and filling it with water and using it to fight a forest fire. What did the doctors say when your nephew told them he was thinking of detox and herbs instead of surgery?

    But like I said, my opinion is worth about two cents. All of my research and all of my efforts, and all of my son's fighting spirit and all of the treatments we have tried have not been very effective in combating his brain tumors. So who knows. I sure can totally understand your nephew's desire to try something other than that surgery he described. It sounds like an absolute tortuous nightmare. Just please do not waste valuable time...if you don't see positive results pretty fast, please quit the herbal and detox strategy and go for the surgery ASAP.

    I really hope that your nephew is successful in beating this disease. It's beyond wrong for a 19 year old to have to face this. But his young age is a huge asset and will really help his recovery if he chooses the surgery, and it also increases his chances for surviving this condition.

    Please let us know what he decides and how he is doing. I really am emotionally invested in everyone on this site and I deeply care and want to know how they are doing. I will be thinking of you/your nephew and praying that he is an overcomer.

    Love and blessings,
    Cindy in Salem, OR

    deciding
    Thank you Cindy for the reply on my post..I am the aunt that wrote the little portion under my newfews story..He had this story posted on his face book and I went and copied it onto here..He wrote this story when he was going threw his radiation treatments...His doctors as far as I know do not agree with this..But what can they do about it.He is 20 and it lays in his own hands..I know far as I feel and seeing this on him everyday knowing he lives with me and my 2 children..we see the change in his face on a daily basis..He wants to try to give this detox 6 months to see if it works..But the sad part is he started with this detox over a month ago..I see no difference..But he claims there is one..He has a MRI coming up may 14 and he feels if his tumor as shrunk it is due to this detox..I informed him it could be due to the radiation treatment he had almost 3 months ago..That he can not determine and choose the detox over that...Plus he feels that threw his leaking nose that the tumor is coming out..I have mentioned to him that he should get that tested instead of living by assuming things..Facts I said support more then anything..When he asked his surgine about getting it tested the doctor told him there is no reason to as they know it is not coming out threw his nose..He keeps saying that the blood analyses informed him of this reg-amine that he is now on and that in time it should work..The blood analyses said they have seen this work in so many cancer patients..So I asked Dan my newfew did they state it worked for this type of cancer you have? He said that they said for all cancers..I do not know how to get him to see what he is doing...I also showed him pictures and shared storys with him from people with his type of cancers and he is still determined to go this herbal route..He has placed his alkline level high in his body..as he was also informed that cancer can not grow in high alkline..He truly believes this will work..My fear is he is at late stage B early stage c and that he has no time to screw around...As far as your question on the April 11 surgery..yes he has placed it on hold...:(
  • Utah Dave
    Utah Dave Member Posts: 2
    angel1974 said:

    deciding
    Thank you Cindy for the reply on my post..I am the aunt that wrote the little portion under my newfews story..He had this story posted on his face book and I went and copied it onto here..He wrote this story when he was going threw his radiation treatments...His doctors as far as I know do not agree with this..But what can they do about it.He is 20 and it lays in his own hands..I know far as I feel and seeing this on him everyday knowing he lives with me and my 2 children..we see the change in his face on a daily basis..He wants to try to give this detox 6 months to see if it works..But the sad part is he started with this detox over a month ago..I see no difference..But he claims there is one..He has a MRI coming up may 14 and he feels if his tumor as shrunk it is due to this detox..I informed him it could be due to the radiation treatment he had almost 3 months ago..That he can not determine and choose the detox over that...Plus he feels that threw his leaking nose that the tumor is coming out..I have mentioned to him that he should get that tested instead of living by assuming things..Facts I said support more then anything..When he asked his surgine about getting it tested the doctor told him there is no reason to as they know it is not coming out threw his nose..He keeps saying that the blood analyses informed him of this reg-amine that he is now on and that in time it should work..The blood analyses said they have seen this work in so many cancer patients..So I asked Dan my newfew did they state it worked for this type of cancer you have? He said that they said for all cancers..I do not know how to get him to see what he is doing...I also showed him pictures and shared storys with him from people with his type of cancers and he is still determined to go this herbal route..He has placed his alkline level high in his body..as he was also informed that cancer can not grow in high alkline..He truly believes this will work..My fear is he is at late stage B early stage c and that he has no time to screw around...As far as your question on the April 11 surgery..yes he has placed it on hold...:(

    Deciding
    I was diagnosed on June 7, 2005. I was 41 and had 2 boys (10 and 8). I had waited way, way too long to see a doctor about my "sinus infection". On July 13, 2005 I had three surgeries at The Hospital at University of Pennsylvania in downtown Philadelphia that took about 12 hours. Then I had 6 weeks of IMRT radiation also at Penn. Then I had 4 months of very nasty in-patient chemotherapy at Hershey Medical Center. The process was difficult. There were times that were pretty much unbearable emotionally. I lost 60 lbs (went from 212 to 152). And I am now going on 7 years clean. I am healthy and active and happy. The only real leftovers are some scars and no sense of smell. But I still eat like a horse and I can taste my food.

    I go to the gym 5 or 6 days a week. I skied 22 days this past season (I now live in Utah). My oldest son in now 17 and just bought his first car. My youngest son is 15 and is an outstanding football player. I would not have gotten to see any of this or do any of these things if I had not gone "the traditional route" with my treatments. I had great doctors, great technology, great support, many prayers and a lot of luck.

    I am not someone special. I am not a brave tough guy. I was scared out of my wits for probably at least the first 2-3 months after my diagnosis. But what I am trying to convey is that if I can make it through this, so can you. Having youth on your side makes a giant difference. Like I was told - you're healthy, but you have cancer.

    I just discovered this web site today. One of the things I have tried very hard to do since I was given a second chance at life was to help other people. No matter how much I try to repay all the good things that were done for me while I was ill, it will never be possible. But I promise I will try.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    Utah Dave said:

    Deciding
    I was diagnosed on June 7, 2005. I was 41 and had 2 boys (10 and 8). I had waited way, way too long to see a doctor about my "sinus infection". On July 13, 2005 I had three surgeries at The Hospital at University of Pennsylvania in downtown Philadelphia that took about 12 hours. Then I had 6 weeks of IMRT radiation also at Penn. Then I had 4 months of very nasty in-patient chemotherapy at Hershey Medical Center. The process was difficult. There were times that were pretty much unbearable emotionally. I lost 60 lbs (went from 212 to 152). And I am now going on 7 years clean. I am healthy and active and happy. The only real leftovers are some scars and no sense of smell. But I still eat like a horse and I can taste my food.

    I go to the gym 5 or 6 days a week. I skied 22 days this past season (I now live in Utah). My oldest son in now 17 and just bought his first car. My youngest son is 15 and is an outstanding football player. I would not have gotten to see any of this or do any of these things if I had not gone "the traditional route" with my treatments. I had great doctors, great technology, great support, many prayers and a lot of luck.

    I am not someone special. I am not a brave tough guy. I was scared out of my wits for probably at least the first 2-3 months after my diagnosis. But what I am trying to convey is that if I can make it through this, so can you. Having youth on your side makes a giant difference. Like I was told - you're healthy, but you have cancer.

    I just discovered this web site today. One of the things I have tried very hard to do since I was given a second chance at life was to help other people. No matter how much I try to repay all the good things that were done for me while I was ill, it will never be possible. But I promise I will try.

    Thank you!
    Wow, Dave, thanks for sharing your history! It's absolutely wonderful to read about people like you who have been successful in overcoming this disease!

    To Dan's aunt...what is your nephew's status? What did his MRI show, and is he still committed and doing the herb and detox treatment? I hope that he is getting the best treatment for his situation. Please let us know how he is doing.

    Love and blessings,
    Cindy
  • Utah Dave
    Utah Dave Member Posts: 2

    Thank you!
    Wow, Dave, thanks for sharing your history! It's absolutely wonderful to read about people like you who have been successful in overcoming this disease!

    To Dan's aunt...what is your nephew's status? What did his MRI show, and is he still committed and doing the herb and detox treatment? I hope that he is getting the best treatment for his situation. Please let us know how he is doing.

    Love and blessings,
    Cindy

    You're Welcome
    I am amazed that there are this many people out there who had this same thing as me. I figured I'd go through the rest of my life and never come into contact with anyone else who had it. Somehow it makes me feel better to know there are many more like me out there. We kind of picked a "bad" cancer to get since it is so rare. Not a lot of research funding into this type since it doesn't effect that many people.

    I'll bet this will be a familiar refrain, but ever since I got cancer it seems like there are an awful lot of people getting diagnosed. Maybe it is because medical science is better at diagnosing diseases than in the past. But I personally feel like there are just more people getting cancer. Probably people who suffer from the many other life threatening diseases feel similarly about their particular disease. I have to wonder how much of this is due to the environment we live in.

    I spent 5 years working around heavy duty industrial solvents (toluene, heptane, xylene, VM&P naptha, MEK...)and another 10 or so working in a plant that makes rubber; lots of chemicals, dust, etc. I know that didn't help me. But I seriously wonder about our food, air and water supply. And there are too many young kids getting sick.
  • Lucero
    Lucero Member Posts: 1
    SIRENAF42 said:

    Hi Alison
    Hi Allison.

    I was diagnosed with Esthesionueroblastom May 2008. I too went in for a routine polyup removal, twice..... They removed the first one, 6 months later another had grown in the exact same place, same size. They removed that one, and the lab results showed the cancer. I had a total of 3 endoscopic surgeries and then was referred to MD Anderson for 6 weeks of radiation treatment. Your questions are normal, and you should never be afraid to ask. I had to have 2 teeth pulled before treatments as they had old silver fillings and they felt the decayed teeth would not survive after radiation.

    Side effects for me started about 2 weeks into radiation treatments. My eyes became, and still are, very sensitive to the sun light, I have to always wear sunglasses outside and I have noticed some vision change. I had severe dry nose and dry mouth, in which I had to use a nasal rinse and mouth rinse to clean. You could and most likely will lose your saliva during radiation. So drinking A LOT of water is very important in keeping your mouth healthy. I lost my sense of taste and smell around the same time, week 2. I lost a small portion of my right eyebrow (where the radiation went in) and lost about 4 silver dollar size spots of hair on the side over my right ear and 2 on the back of my head. Where the radiation goes in, the hair will not grow back. where the radiation goes out, it kills the hair and it just slowly breaks off, but it will grow back. I actually cut mine short during treatments so I wouldnt have to mess with it. I was really tired the last couple weeks, and wanted one less thing to worry about.

    I was surprised and did not expect the radiation mask. You can go to YOU TUBE and key in Radiation Mask, and you will see some videos people created explaining what it is and how it is made. I didnt know about it, and was not at all prepared for it. Its nothing bad, just not what I expected. Around week 4 of treatments, I couldnt eat anthing that was dry and mostly drank Ensure, smoothies and shakes, soups, oatmeal and liquid type meals. Food had no taste nor smell and chewing was impossible to do without saliva. I lost about 40 pounds during my treatments and months recovering from treatments.

    I am now 1 year past my last radiation treatment. Cancer free :) I will tell you, the 3 - 4 months after radiation, was harder than the radiation. I can only smell every now and again. Its like I get a hint of smell, but nothing major. My tastebuds have returned about 80%. I cant eat anything acidy (tomatos, oranges, etc.) nor spicy. My hair has grown back, the same color and texture as before (well a lot more grey)

    2 weeks ago I had laser surgery of my sinus's to remove the scar tissue caused from the surgeries and to repair the damage from radiation, and for the first time in over 2 years... I CAN BREATHE THROUGH MY NOSE... its the little things we take for granted :)

    I didnt have anyone who knew anything about what I was going through when I was diagnosed, and am always available to help you whenever you have questions, are scared, or just need someone to talk to. Soo please feel free to email me at [email protected] so we can exchange numbers.

    I also have some pictures of my mask and the treatment I went through I can share with you. Good Luck, stay positive and think HAPPY thoughts... cancer is just a bumb in the road, it does not define who we are and what we are meant to be!!!!

    Cancer Free since 2008
    Sirena

    Side effects
    Hi Sirena,

    Hope you are still on this site. I'm quite surprised that it took me this long to find a support group for our disease. I was diagnosed in Nov. of 2002 and have been fortunate to not have a recurrence. After surgery I underwent six weeks of radiation. My question for you relates to the dryness in our nasal cavity. Today I struggle with this on a daily basis. My nose is so very dry from the radiation and it doesn't help that I live in the desert (Las Vegas). My nose basically never heals. I am constantly scabbing and bleeding. It's a recurring cycle. I scab due to the dryness which when removed weather naturally blowing my nose and/or by me because I cant breathe I start bleeding. Sometimes I will just bleed if I look down or strain myself in someway. After the bleeding stops, the nose scabs all over again. Have you experienced any of this? Unfortunately, nasal sprays don't cut it. My ENT says it's a normal side effect. I also can only smell on a rare occasion. My taste seems to be ok but varies slightly. I always feel so blessed when I can smell even for a split second :)

    Thank you for taking the time to read this.

    All the best,
    Tina
  • Chuck2339
    Chuck2339 Member Posts: 12
    angel1974 said:

    deciding
    Thank you Cindy for the reply on my post..I am the aunt that wrote the little portion under my newfews story..He had this story posted on his face book and I went and copied it onto here..He wrote this story when he was going threw his radiation treatments...His doctors as far as I know do not agree with this..But what can they do about it.He is 20 and it lays in his own hands..I know far as I feel and seeing this on him everyday knowing he lives with me and my 2 children..we see the change in his face on a daily basis..He wants to try to give this detox 6 months to see if it works..But the sad part is he started with this detox over a month ago..I see no difference..But he claims there is one..He has a MRI coming up may 14 and he feels if his tumor as shrunk it is due to this detox..I informed him it could be due to the radiation treatment he had almost 3 months ago..That he can not determine and choose the detox over that...Plus he feels that threw his leaking nose that the tumor is coming out..I have mentioned to him that he should get that tested instead of living by assuming things..Facts I said support more then anything..When he asked his surgine about getting it tested the doctor told him there is no reason to as they know it is not coming out threw his nose..He keeps saying that the blood analyses informed him of this reg-amine that he is now on and that in time it should work..The blood analyses said they have seen this work in so many cancer patients..So I asked Dan my newfew did they state it worked for this type of cancer you have? He said that they said for all cancers..I do not know how to get him to see what he is doing...I also showed him pictures and shared storys with him from people with his type of cancers and he is still determined to go this herbal route..He has placed his alkline level high in his body..as he was also informed that cancer can not grow in high alkline..He truly believes this will work..My fear is he is at late stage B early stage c and that he has no time to screw around...As far as your question on the April 11 surgery..yes he has placed it on hold...:(

    My story dealing with ENB
    - October 2008 I had, what I thought was, an annoying nose bleed. Didn't think much about it until a month later when I had 3 serious nose bleeds in two days.

    - So, off to the local ENT who told me I was suffering from nasal polyps. So I was put on a series of steroids to shrink the polyps and ease the inflamation.

    - Now its into December 2008 and the "polyps" hadn't gotten any better, so I was scheduled for a simple surgical procedure to remove the polyps. Surgery was scheduled for early January 2009.

    - I awoke from surgery to the concerned faces of my ENT doc and my family. "Your condition wasn't nasal polyps. We suspect a malignant tumor and have sent a biopsy in for analysis."

    - Upon hearing the results of the biopsy, my ENT doc immediately turned my case over to the ENT specialists at UVA Hospital (I live in Charlottesville), and Dr. Paul Levine in particular. I understand the he is one of the preeminent physicians in treating our rare cancer, Esthesioneuroblastoma.

    - My case was identified as Kadish 3 as the tumor had taken up residence in my frontal sinus but had also invaded the cribiform plate and was attacking the dura, the outer lining of the brain.

    - So, for treatment. Chemo followed by radiation. These treatments to finely define the tumor's margins. Then, finally surgery.

    - Feb to March 2009; chemo. Sickness, weakness, hair loss. Not a fun time

    - April to May 2009; 25 daily radiation treatments (they gave me the weekends off!) For the first 2 weeks everything was fine. The docs told me the effects of the radiation would be cumulative. Oh yeah. The last two weeks I was too weak to drive myself to the hospital.

    - They gave me the month of June 2009 off to recover. Surgery was scheduled for July 9th 2009

    - Two surgical teams. One, led by Dr. Levine was facial resection surgery to remove the tumor from the sinus and rebuild all the tissue that had to be removed. Evidently, the first rule of cancer surgery is that, in addition to the tumor, anything it touches has to go. The other, led by neurosurgeon Dr. Mark Schaffrey was to do a cranial resection surgery to remove what tumor had approached my brain.

    - I was on the operating table for 10 hours.

    I had to sacrifice my sense of smell and most of my sense of taste. I can only discern sweet, salty sour or bitter. I have no ability to taste flavors. A good buddy of mine told me that no taste is not so bad. Now you can drink cheap beer! My nose is a bit crooked from where it had to be rebuilt.

    But guess what? Now, nearly 3 years later I'm cancer free and back to living a normal life. I go back to see the docs every 6 months or so for them to look around. So far, so good.

    ENB, although very rare, if detected early, is readliy treatable and recurrences are not that common. I really feel like I've been given new life and if you're facing ENB and live close enough, do consider University of Virginia hospital.

    I'm thriled to be able to claim the title of Cancer Survivor.
  • Chuck2339
    Chuck2339 Member Posts: 12
    Treating the mucous crusting?
    With the surgery that is the usual ENB treatment, a significantly altered sinus landscape is the typical result. If your situation is like mine, you may have to irrigate (rinse) daily with saline solutuion to keep the crusting down. My problem is that regardless of the rinse solution combinations I've tried, the crusting still builds up and the docs have to remove it.

    I've tried adding Johnsons Baby shampoo to the saline solution and I've tried adding hydrogen peroxide to the saline solution. Neither of these solutions have been successful at keeping the crusting down.

    My question is: Have any of you ENB survivors found a treatment that works?
  • namaste
    namaste Member Posts: 11
    Chuck2339 said:

    Treating the mucous crusting?
    With the surgery that is the usual ENB treatment, a significantly altered sinus landscape is the typical result. If your situation is like mine, you may have to irrigate (rinse) daily with saline solutuion to keep the crusting down. My problem is that regardless of the rinse solution combinations I've tried, the crusting still builds up and the docs have to remove it.

    I've tried adding Johnsons Baby shampoo to the saline solution and I've tried adding hydrogen peroxide to the saline solution. Neither of these solutions have been successful at keeping the crusting down.

    My question is: Have any of you ENB survivors found a treatment that works?

    mucous crusting
    Sinus function: regulate temperature & amount of moisture in air breathed in. Loss of some sinuses is apt to set up an environment in posterior nose where mucous is too dry resulting in crusting. I would NEVER use soap or H2O2 on mucous membranes.....My post-esthesioneuroblastomectomy, 2006, husband's( most irratating) experiences with increased post nasal dryness is @ change of seasons( as membranes adjust to change), dry heat blown from car radiator, wood stove dryness..... Helpful at these times - car with heated seats- increased nasal irrigation,humidifier at night, increased saline nasal spray use and/or packing nares with xeroform dressing intermittently (keeps posterior nasal membranes at a more consistant moistness and temperature. I would say he has not found a cure but a "new normal' 6 years later.
  • namaste
    namaste Member Posts: 11
    Chuck2339 said:

    Treating the mucous crusting?
    With the surgery that is the usual ENB treatment, a significantly altered sinus landscape is the typical result. If your situation is like mine, you may have to irrigate (rinse) daily with saline solutuion to keep the crusting down. My problem is that regardless of the rinse solution combinations I've tried, the crusting still builds up and the docs have to remove it.

    I've tried adding Johnsons Baby shampoo to the saline solution and I've tried adding hydrogen peroxide to the saline solution. Neither of these solutions have been successful at keeping the crusting down.

    My question is: Have any of you ENB survivors found a treatment that works?

    mucous crusting
    Sinus function: regulate temperature & amount of moisture in air breathed in. Loss of some sinuses is apt to set up an environment in posterior nose where mucous is too dry resulting in crusting. I would NEVER use soap or H2O2 on mucous membranes.....My post-esthesioneuroblastomectomy, 2006, husband's( most irritating) experiences with increased post nasal dryness is @ change of seasons( as membranes adjust to change), dry heat blown from car radiator, wood stove dryness..... Helpful at these times - car with heated seats- increased nasal irrigation,humidifier at night, increased saline nasal spray use and/or packing nares with xeroform dressing intermittently (keeps posterior nasal membranes at a more consistant moistness and temperature. I would say he has not found a cure but a "new normal' 6 years later.
  • 12nicky
    12nicky Member Posts: 2

    Survivor since 2001
    I'm not sure where to add to this thread, so I just picked a spot!

    I was first diagnosed in April, 2001. We thought I had polyps, but they were unable to remove the whole thing through my nostril. I had a cranial resection to remove the remainder, which included the right olfactory nerve. I have had all my treatment at the University of Michigan, by their Cranial Base team. They got negative margins, which dictated no radiation according to their protocol. My sense of smell was damaged, but I could still taste/smell a few things.

    I had MRIs every 4 months until April, 2004, when a spot which had been believed to be scar tissue doubled in size. I had another cranial resection, this time followed by 6 weeks of radiation. At this point, my sense of smell was gone. I've learned to live with it - your brain is an amazing thing. You eat from memory - if it looks like a brownie, and has the right texture, your brain says it's a brownie!

    I had a false alarm in 2008, which turned out to be scar tissue. However, it came back in Nov., 2009, and has moved to the right side of my head, outside my brain. Since it's so far from the original site, it's assumed to have metastasized to my spinal fluid. I completed 4 weeks of whole brain radiation on May 7, and am currently bald! I won't know if this took care of the problem until my next MRI in September.

    For anyone looking for treatment options, I would highly recommend the University of Michigan. The doctors are fabulous, the treatment I've received has been great, and I feel that they've kept me alive this long.

    Good luck to anyone facing this disease!
    Tammy

    2001
    my husband was told last year he had they did they sugery got it all out he had radasion and chimo he had last mri they told us its all gone no more cancer he need to go back in 9 mounths they told us
  • 12nicky
    12nicky Member Posts: 2
    SIRENAF42 said:

    Hi Alison
    Hi Allison.

    I was diagnosed with Esthesionueroblastom May 2008. I too went in for a routine polyup removal, twice..... They removed the first one, 6 months later another had grown in the exact same place, same size. They removed that one, and the lab results showed the cancer. I had a total of 3 endoscopic surgeries and then was referred to MD Anderson for 6 weeks of radiation treatment. Your questions are normal, and you should never be afraid to ask. I had to have 2 teeth pulled before treatments as they had old silver fillings and they felt the decayed teeth would not survive after radiation.

    Side effects for me started about 2 weeks into radiation treatments. My eyes became, and still are, very sensitive to the sun light, I have to always wear sunglasses outside and I have noticed some vision change. I had severe dry nose and dry mouth, in which I had to use a nasal rinse and mouth rinse to clean. You could and most likely will lose your saliva during radiation. So drinking A LOT of water is very important in keeping your mouth healthy. I lost my sense of taste and smell around the same time, week 2. I lost a small portion of my right eyebrow (where the radiation went in) and lost about 4 silver dollar size spots of hair on the side over my right ear and 2 on the back of my head. Where the radiation goes in, the hair will not grow back. where the radiation goes out, it kills the hair and it just slowly breaks off, but it will grow back. I actually cut mine short during treatments so I wouldnt have to mess with it. I was really tired the last couple weeks, and wanted one less thing to worry about.

    I was surprised and did not expect the radiation mask. You can go to YOU TUBE and key in Radiation Mask, and you will see some videos people created explaining what it is and how it is made. I didnt know about it, and was not at all prepared for it. Its nothing bad, just not what I expected. Around week 4 of treatments, I couldnt eat anthing that was dry and mostly drank Ensure, smoothies and shakes, soups, oatmeal and liquid type meals. Food had no taste nor smell and chewing was impossible to do without saliva. I lost about 40 pounds during my treatments and months recovering from treatments.

    I am now 1 year past my last radiation treatment. Cancer free :) I will tell you, the 3 - 4 months after radiation, was harder than the radiation. I can only smell every now and again. Its like I get a hint of smell, but nothing major. My tastebuds have returned about 80%. I cant eat anything acidy (tomatos, oranges, etc.) nor spicy. My hair has grown back, the same color and texture as before (well a lot more grey)

    2 weeks ago I had laser surgery of my sinus's to remove the scar tissue caused from the surgeries and to repair the damage from radiation, and for the first time in over 2 years... I CAN BREATHE THROUGH MY NOSE... its the little things we take for granted :)

    I didnt have anyone who knew anything about what I was going through when I was diagnosed, and am always available to help you whenever you have questions, are scared, or just need someone to talk to. Soo please feel free to email me at [email protected] so we can exchange numbers.

    I also have some pictures of my mask and the treatment I went through I can share with you. Good Luck, stay positive and think HAPPY thoughts... cancer is just a bumb in the road, it does not define who we are and what we are meant to be!!!!

    Cancer Free since 2008
    Sirena

    how are doing now
    hi my husband was told last year he had they got all out when he had his sugery. then they did radasion and chimo all mri came back clear they told tere is nothing there he need.s to go back in dec for a new mri they told us did not go anywhere and all looks good
  • paul22222
    paul22222 Member Posts: 3
    Chuck2339 said:

    My story dealing with ENB
    - October 2008 I had, what I thought was, an annoying nose bleed. Didn't think much about it until a month later when I had 3 serious nose bleeds in two days.

    - So, off to the local ENT who told me I was suffering from nasal polyps. So I was put on a series of steroids to shrink the polyps and ease the inflamation.

    - Now its into December 2008 and the "polyps" hadn't gotten any better, so I was scheduled for a simple surgical procedure to remove the polyps. Surgery was scheduled for early January 2009.

    - I awoke from surgery to the concerned faces of my ENT doc and my family. "Your condition wasn't nasal polyps. We suspect a malignant tumor and have sent a biopsy in for analysis."

    - Upon hearing the results of the biopsy, my ENT doc immediately turned my case over to the ENT specialists at UVA Hospital (I live in Charlottesville), and Dr. Paul Levine in particular. I understand the he is one of the preeminent physicians in treating our rare cancer, Esthesioneuroblastoma.

    - My case was identified as Kadish 3 as the tumor had taken up residence in my frontal sinus but had also invaded the cribiform plate and was attacking the dura, the outer lining of the brain.

    - So, for treatment. Chemo followed by radiation. These treatments to finely define the tumor's margins. Then, finally surgery.

    - Feb to March 2009; chemo. Sickness, weakness, hair loss. Not a fun time

    - April to May 2009; 25 daily radiation treatments (they gave me the weekends off!) For the first 2 weeks everything was fine. The docs told me the effects of the radiation would be cumulative. Oh yeah. The last two weeks I was too weak to drive myself to the hospital.

    - They gave me the month of June 2009 off to recover. Surgery was scheduled for July 9th 2009

    - Two surgical teams. One, led by Dr. Levine was facial resection surgery to remove the tumor from the sinus and rebuild all the tissue that had to be removed. Evidently, the first rule of cancer surgery is that, in addition to the tumor, anything it touches has to go. The other, led by neurosurgeon Dr. Mark Schaffrey was to do a cranial resection surgery to remove what tumor had approached my brain.

    - I was on the operating table for 10 hours.

    I had to sacrifice my sense of smell and most of my sense of taste. I can only discern sweet, salty sour or bitter. I have no ability to taste flavors. A good buddy of mine told me that no taste is not so bad. Now you can drink cheap beer! My nose is a bit crooked from where it had to be rebuilt.

    But guess what? Now, nearly 3 years later I'm cancer free and back to living a normal life. I go back to see the docs every 6 months or so for them to look around. So far, so good.

    ENB, although very rare, if detected early, is readliy treatable and recurrences are not that common. I really feel like I've been given new life and if you're facing ENB and live close enough, do consider University of Virginia hospital.

    I'm thriled to be able to claim the title of Cancer Survivor.

    Questions
    I read your story and is sounds exactly like mine (so far). I am currently at UVA for treatment. Have finished chemotherapy and am 40% completed with the 25 days of radiation. My tumor may be slightly smaller than yours was, however, the treatment plan is exactly the same.

    I am curious to know how the surgery went and your recovery time. Do you know if your loss of taste is related to the radiation or the surgery?

    I am glad to read your story and see that someone has successfully gone through what I am in the process of going through. Thank you so much for posting your story.
  • CAROLANNVO
    CAROLANNVO Member Posts: 4
    Lucero said:

    Side effects
    Hi Sirena,

    Hope you are still on this site. I'm quite surprised that it took me this long to find a support group for our disease. I was diagnosed in Nov. of 2002 and have been fortunate to not have a recurrence. After surgery I underwent six weeks of radiation. My question for you relates to the dryness in our nasal cavity. Today I struggle with this on a daily basis. My nose is so very dry from the radiation and it doesn't help that I live in the desert (Las Vegas). My nose basically never heals. I am constantly scabbing and bleeding. It's a recurring cycle. I scab due to the dryness which when removed weather naturally blowing my nose and/or by me because I cant breathe I start bleeding. Sometimes I will just bleed if I look down or strain myself in someway. After the bleeding stops, the nose scabs all over again. Have you experienced any of this? Unfortunately, nasal sprays don't cut it. My ENT says it's a normal side effect. I also can only smell on a rare occasion. My taste seems to be ok but varies slightly. I always feel so blessed when I can smell even for a split second :)

    Thank you for taking the time to read this.

    All the best,
    Tina

    Nasal Dryness
    I was diagnosed in 2001 and was referred to M.D. Anderson Cancer Center in Houston, Texas. I have been cancer free for 11 years. I am now contemplating only going for the CAT scans every other year. I am like you. My nose is gross, but I think that is part of the reprocussions of the cancer. At least we are alive. I irrigate most every night and it is so gross. I do not think that the surgery area will ever heal. I have lost my sense of smell, taste, salivia gland production and ear wax (not too bad) but it is all a consequece of being alive. Whatever you do, continue to use the floride trays every night. I was very good for about 5 years and then I stopped. I am now having major problems with my teeth. I was told about all of this before surgery, but I became lazy and now I am paying the price. I hope that my post will help other people on the board. Feel free to contact me at amy time. I am now disabled from Multiple Sclerosis, but again it is just something else you deal with. Thanks for listening.
  • CAROLANNVO
    CAROLANNVO Member Posts: 4
    angel1974 said:

    deciding
    Thank you Cindy for the reply on my post..I am the aunt that wrote the little portion under my newfews story..He had this story posted on his face book and I went and copied it onto here..He wrote this story when he was going threw his radiation treatments...His doctors as far as I know do not agree with this..But what can they do about it.He is 20 and it lays in his own hands..I know far as I feel and seeing this on him everyday knowing he lives with me and my 2 children..we see the change in his face on a daily basis..He wants to try to give this detox 6 months to see if it works..But the sad part is he started with this detox over a month ago..I see no difference..But he claims there is one..He has a MRI coming up may 14 and he feels if his tumor as shrunk it is due to this detox..I informed him it could be due to the radiation treatment he had almost 3 months ago..That he can not determine and choose the detox over that...Plus he feels that threw his leaking nose that the tumor is coming out..I have mentioned to him that he should get that tested instead of living by assuming things..Facts I said support more then anything..When he asked his surgine about getting it tested the doctor told him there is no reason to as they know it is not coming out threw his nose..He keeps saying that the blood analyses informed him of this reg-amine that he is now on and that in time it should work..The blood analyses said they have seen this work in so many cancer patients..So I asked Dan my newfew did they state it worked for this type of cancer you have? He said that they said for all cancers..I do not know how to get him to see what he is doing...I also showed him pictures and shared storys with him from people with his type of cancers and he is still determined to go this herbal route..He has placed his alkline level high in his body..as he was also informed that cancer can not grow in high alkline..He truly believes this will work..My fear is he is at late stage B early stage c and that he has no time to screw around...As far as your question on the April 11 surgery..yes he has placed it on hold...:(

    Surgery versus herbal route
    What hosital is he going to? The herbal has never proved successful. Have the surgery and have it behind you. You are too young to fear. I have been cancer free for 11 years after surgery and radiation at M.D. Anderson in Houston. Please do not delay. It is a slow growing cancer, but you can not test the bounds of life.