Our online cancer forum is full of information and resources about head and neck cancer. Connect with fellow cancer patients to compare stories, research treatment methods, and more. http://www.cancercompass.com/message-board/cancers/head-and-neck-cancer/1,0,119,39.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have read many of the accounts of radiation and how damaging it is to normal tissue, so I am wondering if the RO actually considers using the least damaging method or if the cost of each method and your insurance coverage are higher priority considerations?  I am the caregiver of a newly diagnosed base of tongue  SCCa.  What questions should I be asking the RO?  Presently we are scheduled for 35 RADs and chemo, as yet undecided. (chemo drugs and schedule)  Treatment to start Dec 3. 09.  I swear to God, I am paralyzed with fear.  How can I get through this ?  It isn't about me, it is about watching a truly wonderful man be put through so much!!! NOOOOOOOOOOOOOOO http://www.cancercompass.com/message-board/message/all,41718,0.htm kkaryn Sun, 22 Nov 2009 00:00:00 GMT Seven years ago I had Cancer in my left lower jaw.  Had surgery and radiation.  Now I am told I needa tooth pulled in the area I had radiation, I would need this barametric treatment for 6 to 10 weeks , 2 hours a day,or the socket may not heal.  I have a very ill husband and do not have the time to spend.  Has any one had a tooth pulled and not had the barametric treatments????? I really am not sure what to do, I have been putting it off as it will be Spring before my Husband will be through with all of his surgeries.  I do not have any pain as the nerves have been lost with the surgery, but the tooth is infected and I am on antibiotics. http://www.cancercompass.com/message-board/message/all,41712,0.htm kaiser2 Sat, 21 Nov 2009 00:00:00 GMT Survivors and caregivers, Head and neck cancer is a foe-but one we can beat together and with combined strength and support.  Have Faith in our Lord, He knows Your name and calls you his very own and Loves you more than your imagination allows-a love so perfect, true, faithful and unbending on your very best and worst days.....he knows how you feel...he has carried his Cross and will carry yours too. Try to enjoy the weekend-the life around you-those who offer support to us-and those whom we can support. Fight the Depression,the worry, the anxiety for Jesus said often "Fear Not...."  the Angels said aswell....replace your fear with a renewed strength in those who support you, a renewed Trust in Your God; and a new confidence in your Current Doctors or the Ones you are meant to have. Caregivers-be kind to yourselves-the Lord notices each act of kindness...and Mother Teresa said that no small kindness goes unnoticed from he who Created You or who died for you..... It's a rough road-be kind to yourselves....no what ifs or should haves....never believe you are unworthy of Love or forgiveness...and know that today You are in the Right Place at the Right Time....and no matter your circumstances, opportunities for gratitude, joy and service abound.  each of us are Precious in His Sight because we are His own.  And what Father would ever stop searching for His Lost Child? We will Offer each day up-we will fight each day-our grace shall be sufficient-and we will win each Day step by step up that difficult Mountain...but what a view from the Top. Have a great weekend.  I will pray for all on this Board and I know this Board, ever so kind, will do the same for me and you. Oudave83 With Gratitude, Joy, and Love one day at a Time.   http://www.cancercompass.com/message-board/message/all,41703,0.htm Oudave83 Sat, 21 Nov 2009 00:00:00 GMT Hello again....well this past week has been fun...CAT Scan results are in with mixed findings creating more questions than answers at this point.  I am scheduled for a PET Scan next Wednesday to confirm suspicions that the mass has encrouched on the the skull bone (CAT Scan is not fully discernable).   I have been staged temporarily with Stage 3 NPV, Type 2.   It could slip back to a stage 2, if the PET Scan does not show any other metasisis.  Currently, the only definable areas are in the original mass, measured at 2 cm b 5 cm, and necrosis in a lymph node in my left neck, that is less than 2 cm.  Treatment regiment planned is for radiation and chemo combined, which i am going to assume will knock my socks off in the coming weeks.  Also talking about putting a feeding tube in before treatment starts.  Had to have teeth checked to ensure they will survive, thank God they are fine. At this point it is all about the tribulation of the coming events and surely what will be a roller coaster ride for everyone around me.  Went to church last night and prayed for the strength to get past this.  One thing my Oncologist said was there is a distinct chance this is uncurable.  Has anyone else heard that, or am I just at a bad stage? http://www.cancercompass.com/message-board/message/all,41702,0.htm FredStetson Sat, 21 Nov 2009 00:00:00 GMT i found this list to help those out that do not understand what some of the abbreviations are:Acronyms: BaCC = Basil Cell CarcinomaBiopsy = tissue sample removed for microscopic examinationBOT = Base of tongueBrachytherapy = Radiation therapy with internal radioactive “seeds”CAT = Computed Axial Tomography (scan)CCC = Cancer Care CenterCT = Computed (computer) Tomography (scan)Dives = treatments in a HBO unitDX = DiagnosisENT = Ear Nose and Throat Doctor and surgeonFNA = Fine Needle Aspiration – (Needle Biopsy)HBO(T) = Hyperbaric Oxygen TreatmentsHIPAA = Health Insurance Portability and Accountability ActHN = Head and neckHNC = Head and Neck CancerHPV = Human Papilloma VirusIMRT = Intensity Modulated Radiation TherapyMet(s) = Metastasis or cancer spreadMRI = Magnetic Resonance Imaging (scan)NCCN = National Comprehensive Cancer NetworkNCI = National Cancer InstitiutePCP = Primary Care PhysicianPEG = Percutaneous Endoscopic Gastronomy (G tube or tube) FeedingPET = Positron Emission Tomography (scan)PT = Physical TherapistQOL = Quality Of LifeRND = Radical Neck Dissection (sometimes Resection) also ModifiedRO = Radiation OncologistRT = Radiation Therapy also Radiotherapy (Radio)RX = Prescription or treatmentSCC(a) = Squamous Cell Carcinoma also SqCCA and sq cell caTX = TreatmentXerostomia = low salivaXRT = X ray Radiation Therapy hope this helps. GOD bless! teresa http://www.cancercompass.com/message-board/message/all,41691,0.htm homershoney Fri, 20 Nov 2009 00:00:00 GMT Hello friends. Just have a quick question this morning. I am 9 weeks post tx and my throat still hurts when I swallow. Not knock out pain, just enough to get my attention. How were you at a similar time?   Thanks''Steve http://www.cancercompass.com/message-board/message/all,41685,0.htm tristeve Fri, 20 Nov 2009 00:00:00 GMT 3.5 years ago chemo and radiation saved my life.  However, the long-term effects of the combination of Cisplatin + Eurbitx were and maybe still aren't known. Just over the last year it appears to have effected my cognitive ability.  I'm coming to grips with the fact that, there are times when I have trouble putting two sentences together.  My thoughts get all jumbled and I have trouble saying what I'm thinking.  There are even times when someone will tell me something and I'll get what I'm told totally wrong. Is it just me? I'm looking for answers.  To what?  I don't know, I forgot :)  Just happy to be alive. http://www.cancercompass.com/message-board/message/all,41683,0.htm ThreePutt Fri, 20 Nov 2009 00:00:00 GMT Hi! I am a 48 year old female with stage 1 or early 2 Epiglottis cancer.  Today I am getting fitted for my IMRT mask and will probably be starting radiation in about a week.  I work in an office and was wondering about time off of work and what to expect in general.  I know everyone's experience is different but if anyone with similar diagnosis would like to share their story or just need someone to talk to I'm here.  Good Luck to all!  Marla http://www.cancercompass.com/message-board/message/all,41679,0.htm drummergirl61 Fri, 20 Nov 2009 00:00:00 GMT Well, I haven't been on in a while...Life has been interesting over the past few months to say the least.  The one thing I didn't want to worry about is cancer.  Next week on the 27th will be 18 months out of 42 rad treatments and 7 erbitux treatments for stage 4 SCC in my husbands  throat.  He has finally gained all the weight he lost from treatments and all scans have been clean until yesterday... He had a CT scan last week but he happend to have a pretty nasty cold at the time as well.  Yesterday was his appointment for the results.  It was a roller coaster all around as his radiation oncologist out of nowhere left the practice on Friday so the Dr who saw Phillip had no clue of his history.  Apparently there were some enlarged lymph nodes on the scan that caused some concern to this covering dr.  He tells my hubby that you need a biopsy and a PET scan right away.  Well that just sent us both into immediate Freak out mode.  He did say that since he wasn't familiar with Philip's case that he wanted him to go see his ENT which thank God they were able to take him yesterday as well. The ENT scopes him, feels his neck, looks down his throat and reviews the scan.  He says that he doesn't feel or see anything either with his light or the scope.  He shows us the scan and the lymph nodes in question and says he is not too concerned at this point due to 1-the blood flow through them looks good and if they were cancerous there would be little grey circles inside them, 2-they were alot higher near his jaw line and higher than the area of his original tumor which according to doc, the radiation was not as concentrated and 3-the largest one was 1.2 cm and he says they really don't start worrying until 1.5 - 2 cm.  He feels like the lymph nodes are reactive due to his cold and Phillip is going to be scanned again 12/9 after things have had a chance to calm down. Needless to say I feel MUCH better, but I feel like I cannot truly rest easy until we get that next scan.  Has anyone else encountered anything like this and what was the outcome?  I guess I am just hoping for reassurance that everything will be OK!  I feel like the end is in sight and that 2 year mark is actually in sight now and I feel like we have been WAY too far with "awesome" scans to have a setback now! Well I feel better to have gotten that off of my chest.  Any comments would be greatly appreicated. God Bless http://www.cancercompass.com/message-board/message/all,41643,0.htm g8orgal79 Thu, 19 Nov 2009 00:00:00 GMT My dad has stage four renal cancer.  For the first time a few weeks ago, the doc took him off all meds.  Apparently the last meds were not working anymore and his immune system was depleted.  The doc wants him to regain strength and try an interveneous drug.  Today is the first time he has been hospitalized with fluid on his lungs.  Tpday feels like the first time he was diagnosed.  I am so frightened and I feel so bad for him.  He is a trooper - goes with the flow - on the outside anyway.  I sat by him in the hospital and was falling apart inside.  He looks good actually - but I know part of it is that he is bloated a bit and looks like his old husky self.  Where is my hope?  Guess I need people to talk to. http://www.cancercompass.com/message-board/message/all,41639,0.htm dptilleraas Thu, 19 Nov 2009 00:00:00 GMT I'm at my two year anniversary - out of treatment - as of tomorrow. Sphenoid sinus cancer - 6 weeks radiation, 2 rounds of chemo, Oct/Nov 2007. About 1-1/2 weeks ago, had a physical exam (scoped) and the last week, a PET scan. All previous scans were stable, no disease. This scan, not so lucky. Doc said that there was a "hot spot" with some glucose take-up in the same area as the previous tumor. Wants me to take an MRI - which I'll have on Sunday - to get a better look. He's not pushing the needle into the red zone yet - says it might be inflammation from sinus disease, bone necrosis from treatment, etc. So will have the MRI done and then we'll discuss. Can't tell you how disappointed I was since the two year mark is so important. I was hoping for a handshake and a kiss and some celebration. But not yet. Have any of you folks out there had any issues with recurrences of cancer in the same area? Have you experienced any red herrings? I'm at 50/50 what this might be. Don't want to jump to any conclusions and the doc asked me not to either. But I'm curious what your experiences are. Any advice or guidance would be greatly appreciated! - Jeff http://www.cancercompass.com/message-board/message/all,41620,0.htm ErthWlkr Wed, 18 Nov 2009 00:00:00 GMT Thank you so much for all the information. My husband appreciates it. He is not the very computer knowledged so this is why I am on he. One question he has is we have friends that have small children and the wife is pregnent and they keep telling him their doc said he shouldn't be around children and pregnant woman during radiation treatment. So we asked our oncologist and he said it would be ok to be around them. i told him to trust his oncologist he should know. Is this true or should we be cautious. It is making him worry about things he doesn't need to be stressing about when there are bigger problems. What can you tell me to tell him. http://www.cancercompass.com/message-board/message/all,41615,0.htm excalifgirl61 Wed, 18 Nov 2009 00:00:00 GMT I had a total laryngectomee in June of 2008. Doing very well, would like to correspond with someone that went thru the same thing to compare notes. http://www.cancercompass.com/message-board/message/all,41603,0.htm nichols Wed, 18 Nov 2009 00:00:00 GMT i am about to start my 30 day radation treatmnet after having surgery. Has any one had less than 30 days in order to reduce side effects? It sounds like that is the hard part of this cure. http://www.cancercompass.com/message-board/message/all,41595,0.htm robertv Tue, 17 Nov 2009 00:00:00 GMT He has just been dianosed with cancer of the throat. his is on his false vocal cords so it is spreadable. he just went for a CAT scan and friday he goes for a P.E.T scan. So he is  just beginingall of this. My concern is will he still be able to work? He is a truck driver and does long haul. I know while going through Radiation with possible chemo every day for 9 weeks that he won't beable to, but after it is done how long before he would be able to return. he is concerned be cause he will need to comunicate over the phone? http://www.cancercompass.com/message-board/message/all,41576,0.htm excalifgirl61 Tue, 17 Nov 2009 00:00:00 GMT My husband had a feeding tube put in 6days ago. He is very uncomfortable. When he moves it hurts. He was against having the tube put in but his doctor said he will need it We were  told it was no big deal. He starts he first radiation treatment tomorrow. It has been 6 days how long does it take for the body to heal and how long before you get use to having a feeding tube?  Any information would be appreciated. http://www.cancercompass.com/message-board/message/all,41574,0.htm leevenezia Tue, 17 Nov 2009 00:00:00 GMT Hi folks, have to beating the dead horse, you have seen my recent posts on fatigue. Question, has anyone been sucessful with acupuncture to relieve fatigue? Thanks, steve http://www.cancercompass.com/message-board/message/all,41569,0.htm tristeve Tue, 17 Nov 2009 00:00:00 GMT ONCY - NOV 17TH - AACR-NCI-EORTC     16-Nov-09 07:45 am     CALGARY, Nov. 16 /PRNewswire-FirstCall/ - Oncolytics Biotech Inc. (TSX:ONC, NASDAQ:ONCY) ("Oncolytics" or the "Company") today announced that a poster presentation covering updated results of a Phase I/II U.K. trial (REO 011) of REOLYSIN(R) combined with paclitaxel/carboplatin for patients with advanced cancers will be presented on November 17, 2009 at the 2009 AACR-NCI-EORTC Molecular Targets and Cancer Therapeutics conference being held in Boston, Massachusetts.The poster presentation is entitled "Phase I/II Trial of Oncolytic Reovirus (REOLYSIN) in Combination with Carboplatin/Paclitaxel in Patients with Advanced Solid Cancers With Emphasis on Squamous Cell Carcinoma of the Head and Neck (SCCHN)." Re: ONCY - NOV 17TH - AACR-NCI-EORTC     16-Nov-09 06:00 pm     its actually quite easy to figure out what we will see tomorrow. this came from a nr last March>>3/20/2009The Phase I/II trial has two components. The first is a Phase I, open-label, dose-escalating, non-randomized study of REOLYSIN® given intravenously in combination with paclitaxel and carboplatin every three weeks. In this portion of the trial, standard dosages of paclitaxel and carboplatin are delivered to patients with escalating intravenous dosages of REOLYSIN®. Eligible patients include those who have been diagnosed with advanced or metastatic solid tumours such as head and neck, melanoma, lung and ovarian that are refractory (have not responded) to standard therapy or for which no curative standard therapy exists. The second component of the trial is a Phase II, 14-patient, single arm, open-label, dose-targeted, non-randomized trial of REOLYSIN® given intravenously in combination with a standard dosage of paclitaxel and carboplatin. Eligible patients include those with advanced or metastatic head and neck cancers that are refractory to standard therapy or for which no curative standard therapy exists.<<<<so we should see an update of this with a few more patients and longer data.This is what they report in march>>> To date, fifteen head and neck cancer patients have been treated in the Phase I/II trial (REO 011). All but one patient had prior platinum treatment. Of 12 patients evaluable for clinical response, five have experienced Partial Response (PR) and four have experienced Stable Disease (SD) ranging from two to six months. For patients who have been followed for at least six months since their initial treatment, the median progression-free survival (PFS) is currently six months, while the overall survival is currently seven months. The literature suggests that platinum refractory patients typically have a PFS of approximately two months and a median survival ranging from 4.5 to 6.5 months. The overall survival figure may evolve as many of the patients are still alive.“In patients previously treated with platinum agents, where the response rate (PR and Complete Response (CR)) is generally in the 3-10% range, a response rate of 42% and a 75% clinical benefit rate (SD, PR, and CR) are dramatic,” said Dr. Karl Mettinger, Chief Medical Officer for Oncolytics. <<<<<<< http://www.cancercompass.com/message-board/message/all,41567,0.htm kz7m Tue, 17 Nov 2009 00:00:00 GMT I have just returned home from my ENT appointment today.  My doctor did another physical review of my neck and throat.  Everything was pretty much the same.  Large lingual tonsils, large neck lymph nodes just below and under the ear, a few smaller nodes under my jaw bone.  I then asked her to check out the hard growth under my tongue near my back molars under the base of my tongue.  She said it was a lingual salivary gland that was hard.  She expressed it so it still works, but it is hard and firm asymmetrically. She says that the ear pain that I have, loss of hearing, teeth/jaw bone pain, tongue swelling(possibly)...and as for the other various symptoms will not resolve if she takes out my lingual tonsils.  She did say that removing my adeniodal tissue again will help me breathe through my nose and possibly removing the linguals will help with my breathing and swallowing.  I asked her what was causing all the nodes to swell only on my left side and she said she didn't know.  It just was.  I did bring along photos of my last two hip surgeries to show her the hematomas I have after surgeries because I do not have von Willibrand's Disease, but I do have a rare form of autoimmune bleeding disorder that there is no treatment for.  She said that she does not want to do the surgery on me because my risk of bleeding out is too great and as a doctor she is sworn to do no harm.  Ok, I can understand her concern there. She also said to me that maybe I was a little obsessive about every little thing my body does.  I then showed her my list of surgeries, that were not asked for but needed, and then showed her my list of diagnoses and treatments since I was a young child, none of which I could have ever asked for.  And she then retracted her statement of me being obessive...I thought my two teenaged children were going to attack her when she said that.  They both remember how sick I was...shame on her! So, I did not agree to let her do the surgery.  I have decided to get a second opinion.  I think we are overlooking simple ways to rule out cancer or other things like infection or possibly other causes for what is going on.  Just stopping with a CT scan is not my idea of a clear diagnosis.  I don't know, this just doesn't sit right with me.  I did not schedule a follow up with her, but left it open that I would call her and let her know my decision. What would you all do?  I mean really, am I being a bit overboard, because I seem to feel pretty rational about it, not demanding and out of control.  I mean since 2004 I've been complaing about dysphagia and all the other various things I've listed...and then by chance they find the mass on the base of my tongue that is pretty large in size, my primary makes me go see this specialist because of my history of complaints and the incidental finding on MRI...so whose is exactly obsessive?  Thanks for listening! Kat http://www.cancercompass.com/message-board/message/all,41563,0.htm Signgirl Mon, 16 Nov 2009 00:00:00 GMT Hello Everyone. I wanted to come back and update all of you since you have been so supporting and took the time to respond to my fears last month. I saw the ENT today and he asked me a lot of questions and examined my ears and felt all over my neck before he sprayed the numbing stuff up my nose which went down my throat. He gave me a really good commentary as he put the scope up through my nose and down my throat. He told me exactly what he was looking at as he did it - nasal passage, back of tongue, langual tonsils, epiglottis, some other parts that I can't remember - he got me to make some vocal sounds and puff my cheeks out. He told me that everything looks normal. Once he had finished he went over the images with me again and explained it all and sat down to chat with me. He told me that I don't have throat cancer. He did say that given that I have had these symptoms for almost 1 year, that he would definately expect to see a tumor or lesion with the scope. He said that it could be several things including reflux, deep stones in my tonsils/glands and something else I can't remember. He has given me a nasal spray and wants to see me again in 6 weeks time. He said if my symptoms don't subside with that, he will do an MRI scan and if that doesn't show anything he said he does other tests with surgery and some other scope? I have to say that he was extremely thorough. He did put my mind at ease but at the same time I have read so many stories online where people were told by ENTs after having the scope that they were fine - only to find out later that they did have cancer. I hope everyone here is doing well and I do think about the people on this forum often. I think you are all so wonderful that you take the time to help others and each other during your hardships. God bless you all and I will keep you updated xx. http://www.cancercompass.com/message-board/message/all,41558,0.htm marcal Mon, 16 Nov 2009 00:00:00 GMT Hi, I'm 52 years old female schedule for a whipple pancreatic procedure next week, to remove a complex cyst.  Please, has member had this procedure, I need help trying to undersantand the recovery and what to expect.  Should I be concerne???   http://www.cancercompass.com/message-board/message/all,41544,0.htm americap Sun, 15 Nov 2009 00:00:00 GMT Hubby had base of tongue cancer surgery, now 16 days out Anyone dealt with sloughing off of skin (tissue) from incision site? It's not bloody, but restricts swallowing, eating, even breathing somewhat. He tries to cough it up and has managed to get several pieces loose with his finger. Now has one flapping around his epiglottis....... this sounds silly, but really no laughing matter Diane http://www.cancercompass.com/message-board/message/all,41532,0.htm lovingspouse4 Sat, 14 Nov 2009 00:00:00 GMT Hi Folks: Back at the end of September, I had started a thread about a persistent fatigue that was still affecting me 2 years out of treatment. Thought I'd refresh the thread with a new discussion - At the suggestion of several people on this board, my cardiologist took some bloods and although my thyroid levels were normal, my testosterone level was below normal. He referred me to an endocrinologist. The endocrinologist then did a more substantial set of numbers - my test level came out borderline this time and again TSH normal, but FSH was high. We discussed and decided to try a testosterone hormone supplement and also discussed a possible scan of the pituitary. I showed the lab results to my oncologist who mentioned also that the pituitary was "in the line of fire" when it came to radiation. The testosterone supplement did part of the job - I don't have overwhelming fatigue although still more tired than I used to be at end of day - that is, pre- and post-treatment. My thinking has also been clearer where it used to be muddied by the fatigue. In about another 3 weeks - total of 6 weeks from beginning of supplement - we'll do another round of blood tests to compare. I might also push for the pituitary scan since it may have been affected by the radiation treatments. Hope this information is helpful. PS - Had my 2-years-out PET scan this week. Results will be ready by Monday/Tuesday. As my doc says, if the scan comes out clean, then the odds of the cancer reoccurring at this point drop dramatically. Fingers and toes crossed! http://www.cancercompass.com/message-board/message/all,41526,0.htm ErthWlkr Sat, 14 Nov 2009 00:00:00 GMT Hello everyone, I had the post earlier in the week about a possible re-occurance of my husband's tonsil cancer that had orginally spread to 3 of the lymph nodes in the neck on the same side.  Had the tonsil removed (SCC), chemo, radiation & yet more chemo. Cancer free according to the PET & CT as of August, 09.  Continued with the sore throat & unfortunatley it proved to be back in the orginal site.  Doc want to do a resecction through the mouth but we are concerned about some tiny cells in the orginial nodes?  Don't want this surgery & find out 6 months latter that we need a neck dissection.  We were given such optimisn that we are in shock!  I can hardly bear to think about how hard it is for him to go through this trial again.  I have a new respect & admiration for all the patients/survivors out there who endure the grueling trials & tribulations of this beast of a disease. Anyway, please let me know if anyone has a recommendation for a ENT oncology surgeon?Also, this is a huge network of friends ...so I ask you to please include my husband, Manjit Sambi in your prayers! Thanks to all... Brenda http://www.cancercompass.com/message-board/message/all,41518,0.htm brenda40 Sat, 14 Nov 2009 00:00:00 GMT About 36 hours ago I was notified that a biopsy has confirmed the presence of nasopharyngeal carcinoma Type 2, with severe pain in and below my left ear whenever I hiccup ( a recent phenomenon with uncontrolable bouts of hiccups).  The shock has subsided and now I am waiting for the tests to begin to determine what stage I am in.  My cancer was fouind by by hearing doctor for a dramatic loss of hearing to both ears, from the closure of both estacian tubes.  I am very nervous about the upcoming treatment and looking for advise not only for myself, but for my family as well.  I am a 57 Y.O., Caucasain Male, and I have the cancer background pretty good already.  I would appreciate the straight story about the upcoming chain of events, as my mind has me all over the place.  I was told that a chemical injection/Cat Scan is next.    http://www.cancercompass.com/message-board/message/all,41508,0.htm FredStetson Fri, 13 Nov 2009 00:00:00 GMT