Our online pharyngeal cancer forum at CancerCompass.com offers community resources and information about cancer, Visit us today to research treatment options and more. http://www.cancercompass.com/message-board/cancers/head-and-neck-cancers/pharyngeal-cancer/1,0,119,39,28.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I would really like some in put to this cancer,,, I have suffered from Epstein Bar  Virus for at least 3 years,, i just found out that this EBV can cause cancer 1. being Lymphatic 2. Nasal pharyngeal cancer.Here is the problem i suffer from symptoms of both. Lymphatic has been ruled out [by me] because i have weight gain not LOSSwith the Nasal Pharyngeal ,,, i went for a MRI for my spine and they found [mucoperiosteal thickening of the bilateral maxillary sinuses. a polyp or retention cyst within the right maxillary sinus. and a small polyp or retention cyst in the right sphenoid sinus,, Impression: Inflammatory sinus disease.I went to my ENT doctor who said i didnt need a operation to remove this polyp if i didnt want it,, he told me the risks were blindness, and brain damage, so i chose to not have it.NOW i have constant iching in my ears both, ringing some times. WHAT ARE THE SYMPTOMS FOR THIS PHARYNGEAL CANCER.  all i have is trouble breathing,, [i have asthma]frequent headaches for at least 3 yearssharp pain in my ears infrequentlynow i have trouble hearing, or at least my son says i should have my hearing check. Help me.I am still waiting to see my doctor. and the wait is killing me.any advice would be very helpful, i need to know how other sufferers found out they had this type of cance.thank youClaudia http://www.cancercompass.com/message-board/message/all,40232,0.htm MisClaudia Mon, 28 Sep 2009 00:00:00 GMT 2nd pet scan done after treatment came back with no abnormal cell, which is wonderful news. However, the onco/chemo doctor wonders why my son's pharynx has still so much inflammation, and his airway is not too much more than 5% open. Has anyone heard and/or used that KANGEN WATER, it supposedly can flush toxins and neutralize acidity in your body, it is a powerful antioxidant. Some people claim that it does wonder for your body and helps in many situations.  I would like to know if anyone with pharynx cancer/inflammation has drank any of it daily, even through their peg and if it has helped them -  Thank you  http://www.cancercompass.com/message-board/message/all,40126,0.htm CIGALOU Thu, 24 Sep 2009 00:00:00 GMT My son, 47, was diagnosed too late with Head and Neck cancer, stage 4A [squamous cell cancer pharynx or hypo-pharynx] While in Cancer Critical Unit, he was fitted for a trach- then a feeding tube- got bi-lateral pneumonia - allergy to anti-biotics he was given- then got superbug MRSA.... To make our story short...he went through 7 weeks + 2 days of radiation [we were told the most that is allowed by law] as well as chemotherapy [with Cisplatin]every Wednesday following radiation for the first 6 weeks. The results of his following Pet Scan: no abnormal cell.  One should rejoice...However, his trach hurts him constantly, he complains about constant pain, especially behind his neck, even though he takes heavy pain killer every day. Difficulty to breeze,  he wants it out.  The problem, the massive radiation has "fried" him. He only has 5% of his airway open. Lots of scar tissues and lots of inflammation. He carries a cup no matter where he is, because he constantly has those gooey matters that force him to cough and they expel from his trach, although some from his mouth.   Anyone knows what can be done to get rid of that inflammation?Are the scar tissues permanent or can there be some kind of operation , laser or other, to eliminate or diminish them?    It would be so wonderful if he could eat or drink even if it were a limited amount, which he has not done in 6 months. Unfortunately, he had 3 swallowing tests, but when you look at the imagery, the half teaspoon of liquid they gave him, hesitates at one point and then plummets in his lungs!   I thank you for any information you can give us….and wish you a very agreable Labor Day somehow!Cigalou  http://www.cancercompass.com/message-board/message/all,39630,0.htm CIGALOU Sun, 06 Sep 2009 00:00:00 GMT hi i was diagnosed 5 yrs ago i am still stuggling stage 4 terminal they filled me with morphine then hello told me they cant  find cancer i still feel shit i am having trouble no saliva hearing both ears they r going 2 remove gromets told me have 2 live with fluid how do i do that my balance is of angry all the time if any one is on ordine if u arnt in pain dont take it it is very addictive i have spent the last 3months coming of it why i dont no i thought i fuctioned a lot better i all so have rumatoid artheritis every thing is a fight i am very tired any suggestions would help http://www.cancercompass.com/message-board/message/all,39619,0.htm chezza Sat, 05 Sep 2009 00:00:00 GMT Hi, This is my first time of writing since my husband was diagnosed with pharyngeal cancer. He was diagnosed last August, operated on in September, and had six weeks of Chemo and Radio therapy. He is coping very well......that said, he obviously has gone through some terrible times. I am very proud of the way he has coped, but I am very worried about what little food he is now able to eat. He once had a very good appetite and loved trying different foods, but with the absence of saliva glands ( or very little) I find it a constant worry as to what to fed him. He still has overnight nutricia feeds. If there are any tips and helpful information I would be grateful.Thankyou Twinsnan  http://www.cancercompass.com/message-board/message/all,37661,0.htm twinsnan Wed, 01 Jul 2009 00:00:00 GMT   Some time ago, my doctor had said they looked for an indentation of the temple area which indicated something?  As he said I didn't have that, I didn't pay much attention. I have it now and can't remember what it indicated. I'm having several test and scans in the next couple of weeks and won't have access to my doctor until after these test. I'm seven months beyond radiation and chemotherapy and these are supposedly follow up tests. I'm losing weight again and having much trouble sleeping. This is hopefully anxiety. Does anyone know what the weight loss in the temples means? I can't tell you how helpful this forum is to mental stability. Thanks for all your help.--trumpetman 25 http://www.cancercompass.com/message-board/message/all,37090,0.htm trumpetman Fri, 12 Jun 2009 00:00:00 GMT hello cancer survivors In two days i am starting treatment for stage 2 nasopharynx cancer at unc-chapel hill. i have read thru some of the posts and have been told by docs what to expect. still, i have many questions / doubts. it would be good to have contact with some of you who are surviving this kinda cancer. I haven't been given a feeding tube as they want to wait and see how I take it in the first two weeks. Could this be a problem down the line. I have heard that it's hard to eat because of swallowing difficulties and loss of taste. Does one also experience loss of appetite? I am ~40 yr old and otherwise healthy / somewhat active. What should I expect in terms of activity during / after treatment? How long does it take to get some normacy back after treatment? I have had quite a bit of nasal allergy symptoms over the years. Do they get better / worse after treatment? Thanks. http://www.cancercompass.com/message-board/message/all,35989,0.htm roofi Sat, 09 May 2009 00:00:00 GMT my firend had a 1st stage naso pharingeal cancer in 2008, he was given a combination of radio theraphy and chemo theraphy, after his treatment he feels better but have had the mouth dryness which the doctor explained that it was just the side effect of the radiation theraphy.After 10 months 0f the treatment he started feeling irritable because of his having a mild difficuty in swallowing his food...is this a part of the healing process of his pharingeal cancer treatment? any advise out there pls...md  http://www.cancercompass.com/message-board/message/all,35820,0.htm mike57410 Sun, 03 May 2009 00:00:00 GMT Can someone help to tell me more about the side effect of radiation on the neck area.  http://www.cancercompass.com/message-board/message/all,35604,0.htm goodtimes Sat, 25 Apr 2009 00:00:00 GMT Radiation was the only treatment used for my husband's stage 4 Nasal Pharyngeal cancer.  He is now 15 years out and suffering from severe neuralgia in the neck.He tried acupuncture.  Lyrica did not work. Gabapentin provides very little relief.  Most of his relief is found through pain killers.  He did try a nerve block, but it made his neck feel that if he moved it, his head would break and fall off. Can anyone let me know if there is a treatment that might work?     http://www.cancercompass.com/message-board/message/all,35034,0.htm jjinc Tue, 07 Apr 2009 00:00:00 GMT   I am nearly 6 months beyond radiation and chemo. I can swallow but have a peg tube for ALL nutrition. ( 6 cans of Jevity per day.) I have tried various foods but they are all repulsive to me. I have no physical desire for food. (But plenty of mental desire.) Has anyone had a similar experience? I have a small amount of saliva but must keep water very nearby. Help!!! http://www.cancercompass.com/message-board/message/all,34268,0.htm trumpetman Mon, 16 Mar 2009 00:00:00 GMT First: thank you. I'm very happy to have found this supportive resource online. My husband just finished his radio- (7wks), chemo- (2 rounds) treatments for cancer found in his tonsil, which was surgically removed. He’s not a smoker and started his treatmenta in prime condition: physically and mentally strong. We are both thankful that he didn’t need PEG tube, but living on Resource and Boost is grim. He has lost ~30 pounds and some hair in the pattern of the IMRT! He’s definitely not a gang member, but has a pretty cool hair thing going on at the back. Reading the posts on this site was a dose of reality for me. I had optimistic eyes on the End of Treatment and the road to recovery. I appreciate the personal stories, learned and adjusted my expectations. Getting through the treatment stage was a journey, I understand now that recovery and real food is a ways away.  http://www.cancercompass.com/message-board/message/all,33330,0.htm InfoEponge Wed, 18 Feb 2009 00:00:00 GMT does anyone know if snorting drugs Coke and stuff can cause this type of cancer or contribute to this? Just drugs period anykind?  thanx http://www.cancercompass.com/message-board/message/all,30264,0.htm karena5 Thu, 13 Nov 2008 00:00:00 GMT I friend of mine passed 2 years ago of nasal pharngeal cancer.After having all trreatments available he was terminal. The cancer had spread to the back of his eye which deformed his eye and side of face.. Why was this and does anyone know where on the internet i can bring up what this does to your outer face and the appearance of it since i didnt see my friend when he passed?Also does anyone know if sniffing drugs(coke) the likes can cause this?Also to all of you who have contributed to this site God bless you all because i understand its a terrible thing to go through. Keep up the good reports. Please respond.  thanx karena http://www.cancercompass.com/message-board/message/all,29974,0.htm karena5 Tue, 04 Nov 2008 00:00:00 GMT I am a 29 year old male asian, recently gone for a blood test and my doctor has informed me that my result for the nasopharynx cancer marker was higher than the reference range(result:15, ref range is 0-8). I have been to a ENT specialist to have a scope done and the ENT told me I was all clear. Now there is a pain in the soft bone where my nose meets the upper lips, should I be worried or am i too paranoid? If I do not have cancer, why would the EBV reading be out of scale or even exist at all?  I am a 29 year old asian. http://www.cancercompass.com/message-board/message/all,29799,0.htm weareone Thu, 30 Oct 2008 00:00:00 GMT I have been reading the message board but haven't really read anything on this type of cancer. My finance was told he had this type of cancer in April of 07. Has gone through 35 rad and 4 cemo.His peg tube was removed in May of 08. He is still on soft food or as i say mushy food in order to get it down. He thinks always of his cancer coming back. He was doing pretty good and went for his 4th cat scan earlier in June  and it was clear .But now he is complaing that he is tired and really does not want to do anything. Any kind of help on this cancer would help. I was wondering if anyone else went throught this.    http://www.cancercompass.com/message-board/message/all,25324,0.htm kathy825 Mon, 23 Jun 2008 00:00:00 GMT I have just been diagnosed with nasopharyngeal Carcinoma-Regaud Type.  What is RegaudType? http://www.cancercompass.com/message-board/message/all,24419,0.htm trumpetman Tue, 27 May 2008 00:00:00 GMT On 5/12/2008 Defjoeb wrote:Yes, rad is radiation. Where were you radiated? Everybody reacts differently to it and it may not be so bad in most parts of the body but in the head and neck area it's absolutely terrible. 2nd and 3rd degree burns in the throat, mucositis (it's much worse than it sounds), constant pain, the inability to swallow even saliva, damage to the mouth and gums (blisters, thrush), permanent damage to salivary glands (saliva is a very underrated fluid, you don't know how much you need it until you lose it), etc... Many people (myself included) lose the ability to swallow and have to relearn it. Thankfully most ill effects are temporary and the permanent ones can be dealt with. I hope I didn't scare any newbies. It's always good to hear someone who goes through it easily. It gives the newly diagnosed some hope that it won't be so terrible for them.Good luck.Joe  JoeHow did you relearn to swallow?I've been on a g-tube for a year and a half and it's getting old.Bruce http://www.cancercompass.com/message-board/message/all,24350,0.htm bruceb Sat, 24 May 2008 00:00:00 GMT Hello everyone my name is Mark I'm a 7 year nasopharnex stage 4 squamous cell carcinoma Cancer Survior. In 2006 I started having swallowing problems, food stuck and not going down constant coughing increasing dysphagia. M epiglottis doesn't close over. These problems are due to radiation treatment which caused a lot of scar tissue.I have severe Esophageal Stricture. I'm scheduled next week for Dilation I also have trismus approx 1.5cm which means I cannot open my mouth that wide at all due to radiation treatment which is what most head and neck patients have. My ent while I'm under general Anesthesia will stretch my mouth wider in order to see down by throat for the esophageal dilation. These are just muscles being used when my mouth is stretch wider has anyone had this done. To include Esophageal Dilation with severe stricture.I need to know everyones experience who has been thru this or in the process of going thru it. Thanks in Advance http://www.cancercompass.com/message-board/message/all,18325,0.htm mark5301960 Sun, 25 Nov 2007 00:00:00 GMT Dear all,I have received many emails since my last posting,  i appreciate all the nice notes and encouraging words!!!!For those newly diagnosed, i hope you get to read this, I've said it before and i'll keep saying it.  Being diagnosed with a neuroendocrine tumor is not the end of the world.  This type of pancreatic cancer is fightable!!!!!!  But everyone must get treatment with the doctors that specialize with this cancer.  A regular oncologist will not do!!!  No offense, but our cancer is rare.  Your doing yourself a disfavor if you think they know all there is to know about your cancer, they don't.  I'm not saying they are not good docs, but our cancer is rare and must be treated in a special way.  It is a cancer that can be contained if you seek treatment from someone who deals with this type regularly!!!!"if you can't tell" i feel strongly about anyone diagnosed with a neuroendocrine type tumor, please see a specialist, if you don't know who they are, get in touch with me and i will help you!!!!  Remember, i'm 7 years post original diagnosis and doing great!!!!Take care,Marcie  http://www.cancercompass.com/message-board/message/all,16991,0.htm Marcie77 Thu, 11 Oct 2007 00:00:00 GMT In early part of 2006, my sister was diagnosed with  cancer of the nasopharynx. She had I believe 3 chemo sessions but realizing it wasn't helping her at all, they proceeded with the radiation. The chemo took a toll on her health, and I came close to losing my sister. I made the decision to come home and visit her , even with the dilemma of missing a month's wage that could help towards the treatment expense. They don't have medical insurance in the Philippines so it was pretty tough. I was lucky enough to have a tremendous support from friends who generously gave money for me to bring home. The radiation did help shrink the tumor. She was clear from Nov.06 until now , when she started getting headaches and trouble with her vision and some facial paralysis ( mild cerebral palsy I think) She is scheduled to go for chemo again next week ... And again ... as if we are threading through either rough waters or piece of wire . My immediate action was to seek part time job , to come up with the money again for the chemo. Dr said would be 6 sessions , $1,000 per session!  I went pale for a moment , but I readily refocused and calmed myself down ,  I said to myself - if I have to do housekeeping jobs on weekend ( I am a licensed Dental Asst by profession ... but there are more of these housekeeping jobs opening for part timers ) then there is no question about that except that I only have to anticipate some back pains again. Nothing that an ample amount of 555 or Bengay will fix I hope. I started rallying for prayers and emotional support from family and friends. I had my interview last Friday, and I came close to begging the supervisor. I am optimistic I will get .... I have to. If not , I will again walk into another hotel or resort to hand in my resume until someone would say YES to me. My sister's life is worth all the back pains I will get , that's  a fact I so very well know ...  http://www.cancercompass.com/message-board/message/all,16644,0.htm Balanguena Sun, 30 Sep 2007 00:00:00 GMT Dear doctor,Praise the lord        i am ashish from india and please give me some advise related to cancer, doctor diagonsed larnyx/throat cancer to my father and told that it is in 4th stage and only 40% chance to recover please advise me that what can i do and and how we cure it. please advise me doctor told forhere we send some points doctor prescribe during laborotary test: # cerivical lymphadenopathy.# pyriform sinun(right)# supraglottic mass with possible glottic extension.# lymph nodal mass seen right jugular chain# level 2nd & 3rd /mildy streky densities.Please advise and suggest me to help my fahter mew life because i have enough money for treatment.Is the cancer transmitted by somone who have what precautions we have to do.please advise me.thank youashish http://www.cancercompass.com/message-board/message/all,14298,0.htm raajbon1234 Fri, 13 Jul 2007 00:00:00 GMT My husband (51 years old now) was diagnosed with squamous cell cancer of the vocal cords 3 years ago.  He had radiation and chemo off and on for 9 weeks.  We live in Florida and that was the year of THE HURRRICANES which caused the treatment center to close and made driving impossible on some days.  After treatments, he was cancer free for 2 years. Last August he was having difficulty with his speech again (hoarse voice) - a CT scan showed something and a biopsy confirmed cancer again in the same place.  In September he had a total laryngectomy and radical neck disection.  He adjusted very well to breathing through and having to take care of his stoma (a hole in his neck that is what he breaths through now), loss of smell, and his new "voice."  He has a great attitude and did not let it bring him down.  In April, the cancer was back again (same place, minus the vocal cords).  He is doing radiation and chemo again to reduce and hopefully kill the cancer, but also to buy him more time.  They are going to do surgery on him in late July.  I believe it is called a radial forearm flap.  The way it was explained to us is they will remove as much of the twice radiated tissue that they can and anything else they need to remove that may have cancer.  They don't know how much they will need to remove until they get inside.  They will then take a flap from his forearm to reconstruct his esophagus, the surrounding tissue and skin they remove from his neck.  Has anyone out there had any experience with this?  The doctor was very positive and gave us a lot of hope, but I am very frightened by all of this.  Any feedback would be GREATLY appreciated!!!  My husband says he is not scared, he just wants to get it done.  He is so positive and has such a great attitude that I can't bear to share with him how scared I am of losing him!  I don't want him to be worried about me right now.  Thanks you for any help or information you can offer!           Debbie http://www.cancercompass.com/message-board/message/all,12713,0.htm Gatordebbie Sat, 02 Jun 2007 00:00:00 GMT One more thing. If the actual baseball hit comes and I fall. I don't need anyone. I have my cell right next to me for the ambulance. I have people who love me but I have to be a fighter. This is what you will eventually conclude from my messages. You must. Please help. http://www.cancercompass.com/message-board/message/all,9439,0.htm Hebah Wed, 07 Feb 2007 00:00:00 GMT I wanted to say before I accidentally pressed send message, please don't tell me to go to a he physician. I need some advice on this. I am aware each case is case-to-case, but I want to know what is cancer reversal in terms of the cancer being a feel and no energy present for a smooth rythm to the grave or the actual horrible hit that lasts for a few moments. Thank you. Please advice. It was my fault. I worked out religiously and now I have cancer for being extreme in this particular scenario regarding my health. It's not guilt, It's LIFE. Please advice. http://www.cancercompass.com/message-board/message/all,9438,0.htm Hebah Wed, 07 Feb 2007 00:00:00 GMT