Our online laryngeal cancer forum at CancerCompass.com is a valuable source of information and support. Visit us today to research additional laryngeal cancer treatment resources. http://www.cancercompass.com/message-board/cancers/head-and-neck-cancers/laryngeal-cancer/1,0,119,39,22.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/ My husband has laryngeal cancer he will be starting radiation treatment. His doctor is pushing for him to get a feeding tube in before he starts his treatment. He does not want to get a feeding tube. The doctor tells him that he will not be able to swallow after three weeks. He does not have to get chemo only radiation can anyone give us information about getting a feeding tube. http://www.cancercompass.com/message-board/message/all,41172,0.htm leevenezia Sat, 31 Oct 2009 00:00:00 GMT My husband has laryngeal cancer he will be starting radiation treatment. His doctor is pushing for him to get a feeding tube in before he starts his treatment. he does not want to get a feeding tube. the doctor tells him that he will not be able to swallow after three weeks.  he does not have to get chemo only radiation can anyone give us some information about getting a feeding tube. http://www.cancercompass.com/message-board/message/all,41171,0.htm leevenezia Sat, 31 Oct 2009 00:00:00 GMT I am a 66 year old man who finished radiation in May 2007 for stage IV tonsil cancer. All the PETs and CTs since are negative. That's the good news. The bad news is that, owing to the 3 8-hour sessions of Chemotherapy and the 35 sessions of radiation, I have not had a meal since May 2007, and must take all my nutrition through a PEG tube. I can drink a bit, and do, but must take quite small bites of anything as the esophagus remains contracted despite about 10 endoscopies to dilate it. But even if I could eat, I have no sense of taste, and my salivary glands are virtually nonexistant. Anyone been here before, and regained his or her sense of taste or salivary glands? I am not thrilled with the thought of never eating again. http://www.cancercompass.com/message-board/message/all,40085,0.htm Ripvanwinkle Thu, 24 Sep 2009 00:00:00 GMT   If you are already on Facebook please join my throat, head, and neck survivors group. I'm 1.5 years out in remission Charles   http://www.facebook.com/group.php?gid=31602074239 http://www.cancercompass.com/message-board/message/all,39388,0.htm worldclasscoach Fri, 28 Aug 2009 00:00:00 GMT i had 39 radiation treatments and after 4 months still have severe ear pain lots of mucus and fatigue- plus voice is very weak and raspyanyone else experience this??? http://www.cancercompass.com/message-board/message/all,38549,0.htm spilcj Wed, 29 Jul 2009 00:00:00 GMT Hello, this is my first time to talk about how scared I am. My mum (63, smoker) has had a hoarse voice for about a year and a half, maybe even 2 years. She has been going to various doctors where they did not know what it might be caused by, and they gave her antibiotics. Anyway, she was finally sent to a specialist who suggested laryngoscopy with full anesthesia. They removed a little bit of tissue for biopsy. A week after, my mum went for an after-surgery check-up and they did not tell her that she has cancer, rather they told her that there are some cells that are not 'normal' however that it's too early to begin treatments (radiation they said). Apparently they will keep observing it and she should come again in 3 weeks.She and I are of course worried that 'not normal' cells mean cancer. They did not say that word though. My mum is depressed, so I am, I am scarred that they will tell her she has cancer. Can you please tell me how to communicate with her? I need to help her feel a little better and to be more positive. She keeps saying things like 'nothing matters anymore'. I am also worried that it might be in advanced stage, since she has had the hoarse voice for so long. It's getting better and then worse on-and-off. Thank you so much and all the best to you all. Sara http://www.cancercompass.com/message-board/message/all,38065,0.htm Sara32 Tue, 14 Jul 2009 00:00:00 GMT Hi Mike, its been a long time since ive seen any messages from you .I hope that you are doing well. I responded to one of your messages to me on the throat cancer site , but havent heard back from you , ( or have seen any responses to anyone else in a long while. ) I hope that this means that you are doing well with your classes and that you are getting back to a more out going way of life that its hard to get on the computer. As for me my g-tube came out 6/4/09 , i have been on soft foods and liquid nutrients since. I go back to my ent tomorrow to see what the next step with my trek will be. The precedure i had done on 5/27/09 seemed to have worked ( where they lazered my airway to widen it and unblock my vocal cords so i could talk and breath again ,so far so good ) I have been able to keep my pasy valve on all day now , where before the precedure i wasnt able to keep it on for more than 5 mins. at a time without losing my breath. So im thinking that its healing right this time , (fingers crossed )  On 6/29/09 i will be seeing a speech therpist ,shes gonna do a berrium swallow test to make sure everything is going down the right way . Then if that goes well she will get together with my dietician to ween me off of the liquid nutrients and start adding normal food to my diet,from what i understand they will have to teach me how to swallow right so that food doesnt go down into my lungs.Anyway enough about me , if you get this i would sure like to hear from you to see how you are doing .,and im sure others on these sites would also like to know how your doing . until i hear from you again my friend GOD BLESS YOU AND YOURS  and to EVERYONE ELSE GOD BLESS AND KEEP THE FAITH............JR449 (JEWELL) http://www.cancercompass.com/message-board/message/all,37462,0.htm jr449 Wed, 24 Jun 2009 00:00:00 GMT Any laryngectomys having trouble with shrinking stoma and putting back trach ?? http://www.cancercompass.com/message-board/message/all,37160,0.htm nichols Sun, 14 Jun 2009 00:00:00 GMT I would like to chat with some one that had a total laryngectomy. Had mine June 30- 2008,would like to compare notes and experiences after surgery.  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- http://www.cancercompass.com/message-board/message/all,37077,0.htm nichols Thu, 11 Jun 2009 00:00:00 GMT i don't know how to get started but it just hit me in the head like a brick yesterday and it just kills me to watch my husband of 47 years setting there while others are talking and he wanted to say something and could not because of his operation on may the 5th removal of the vouice box. he had tears in his eyes and it made me so sad and angry at the same time. i know it will take time but i am not sure if i am as strong as i thought i would be. i pray to God he will guide us as we go through this stage. http://www.cancercompass.com/message-board/message/all,36706,0.htm cnasandy Sun, 31 May 2009 00:00:00 GMT A year ago this week I was informed I had larynx cancer.  The following week, at the direction of my ENT, I began 36 radiation treatments.  The radiation, unfortunately, didn't help.  Vocal cords became immovable making breathing a little interesting and on 9-11-08 (yes, that date) I had a full laryngectomy.   Now a little over 4 months from the surgery, except for taking Aciphex for acid reflux, and something for potential allergies, I am medicine free and I have to admit pain free.  My weight is back, and my color is back.I am missing the front portion of my throat where the larynx was removed, and there is that gaping hole the size of a quarter where my adams apple used to be.  I put an adhesive patch and push button over the hole that conceals a voice prosthesis that allows me to speak, somewhat, when I push the button.  My nose no longer works and it occasionally drips. Something to learn to cope with because you can't blow your nose anymore.  I have lost all taste and smell...nothing to do about that.  It takes an extra hour each morning cleaning the hole which is called a "stoma" and attaching the adhesive patch and button.  They are 24 hour throwaways...if you wear them every day that's an additional $340.00 a month.  Not a horrible cost for being able to make sound and sometimes speech. It takes an extra hour each night preparing for bed as everything has to be removed and then the stoma cleaned.  And can't forget about the three or four coughs each hour of the day.  Did I mention that all your breathing and coughing and mucus expulsion comes out the stoma.  They say that mucus production diminishes on some laryngectomees but it hasn't much with me.  My employer hung on for a good while but because verbal communication was a big part of my job, they canned me on 12-31 when they saw that my speech was, well, not very good.  Can't really blame them...they hung in there all last year and actually even paid me during the 9 month absence.  Purpose of this 1 year anniversarry email?  99 out of a 100 laryngectomy patients were smokers.  Do you hear that?  I am a college educated somewhat intlelligent individual that allowed the addiction of nicotine alter my thought process.  Not me...will not happen to me.....Every morning when I am cleaning that God awful hole in my throat or I have to get up and move quickly to the men's room during one of my infrequent ventures into the public so I can cough out mucus from the hole in my throat, I pray to God that if only smokers could see me...feel my humiliation when small kids point at me, the difficulty in getting from one day to the next......you know, cancer kills so many folks each and every year and many and most of those poor souls did nothing to cause it except to be alive.  This is one cancer that can be prevented by almost 100% by changing lifestyle habits.   I am convinced that people like me are left alive to show the damage, to show how very much your life can be changed so much, with none of it being good.  Smokers, grit your teeth and realize it is the nicotine that keeps you convincing yourself to smoke...just google laryngectomees and take a real gross look at what you can become if you continue to smoke.  Alot of folks will say I'm preaching.  That's why I was left alive...so you can see how nasty this is...and how it could happen to you. This is not a glamorous cigarette ad.  No, I'm their worst nightmare...because I am what you really turn into......I am real.  And smoking caused this.  And it caused it in the other 18 folks with holes in their necks in my local support group...yep, you got it, all were smokers.  Hello?????It amazes me that I was that weak...that I am now a victim of my own addiction.  Godspeed to each and everyone that reads this.  And if there's one smoker that "lays em down" after reading this, then I'll know why I was left alive with this difficult lifestyle to maintain for the remainder of my life. http://www.cancercompass.com/message-board/message/all,32641,0.htm Mike1sc Thu, 29 Jan 2009 00:00:00 GMT My husband, 80, was recently diagnosed with stage IV laryngeal cancer and he has decided against all but palliative care. I've asked the oncologists and hospice, but they can't or won't offer even a possible time line for his passing. His energy is almost nil, but he keeps going nonetheless. I'm trying to plan for visitors and for his comfort. Has anyone any idea of how long he might have? Many thanks. http://www.cancercompass.com/message-board/message/all,32172,0.htm lotuslizard Thu, 15 Jan 2009 00:00:00 GMT Hi:It will be three years this Dec. since surgery and that less three months since radiation and chemo.  I had no problems eating until 10 days ago, my Onocologist says he cannot see anything, but I feel swollen in the throat, feels like there is something there, and creamed soups will not even go down,(radiologist could not find anything either).  Anyone else have this problem?  I am down to 95 lbs.  Thank you. http://www.cancercompass.com/message-board/message/all,29378,0.htm fransan Thu, 16 Oct 2008 00:00:00 GMT Hello I have been having this problem for over 3yrs I have a very enlarged lingual tonsil be hind tonge I guess a lymph node have had it removed it has grown back bigger than ever my voice is hoarce they said it wasn't anything but I just don't believe it said it was from acid reflux I take meds for that hard time swolling choke some times I cough alot and recently it taste like salt akward I know any advice Thanks Sheryl http://www.cancercompass.com/message-board/message/all,29229,0.htm sherylc Sun, 12 Oct 2008 00:00:00 GMT Want to thank all of you for the information you folks have posted.  I have stage 2 cancer of the larnyx and my Dr is encouraging.  He did paint a rather bleak picture of the side effects.  My greatest concern is swelling due to radiation... bad enough to hinder breathing.  Anyone had that problem and what can be done to lessen the problem?Thanks again,Ed http://www.cancercompass.com/message-board/message/all,28789,0.htm EddyMack Mon, 29 Sep 2008 00:00:00 GMT Hi, my mom is 50 years old and a heavy smoker.. For the past 2 months we have noticed a change in her voice that the best i can describe it sounds like she needs to clear her throat every time she speaks but she doesnt really need to clear her throat, she doesnt have any other symptoms that we have noticed.. Is that the change in voice that they talk about or is this prob something different? http://www.cancercompass.com/message-board/message/all,28263,0.htm angiedi421 Mon, 15 Sep 2008 00:00:00 GMT Hello. My mother is 53 years old she was diagnosed with cancer of the larynx in oct 2007. She has gone through 10 sessions of radiation and currently is one her way to her 4th set of chemo treatments. She has been on 5 fu pump and carboplatin. She has advanced disease. Her doctor told us she will die from this. We are very scared and are looking for alternatives to help her. In my heart she will not die from this and I strongly beleive this. The other problem is the scarring from radiation and the tumor are blocking her airway and for this reason unless it miraculously clears she will have her trach for life. This is very sad because it is painful and she always has infections. I placed her on so,me herbal remedies such as the cheese/oil cure, acai and now mangosteen. We are tring to pump as many antiox and vit and minerals in her to help her body fight. We need help please. Any suggestions about anything would be helpful . Thanks. http://www.cancercompass.com/message-board/message/all,21742,0.htm Trish28 Thu, 06 Mar 2008 00:00:00 GMT I'm going on 30, returning student who lacks health insurance.  Back in Oct I started to develope tiny bumps in my throat--the entire oropharnyx--bumps spread behind lower back molars. The bumps are flesh colored. I, like another poster with similiar problems, also have an inflamed left tonsiI, and I too have impacted wisdon teeth. I believe that I have had tonsil stones in the past--another wierd throat scare that I ened up dismissing as a cyst when it popped--and possibly post nasal drip.This is why I'm scared. I have had hpv for yrs, never had any real problems, but logically believe that I do have the virus in my throat. I have also smoked and drank for years. When I go to doctors(not specialist), I'm told they see nothing, don't know what it is, or say it's nothing. Since I have no insurance I'm convinced that they are (1)incompetent (2)lying to me about the information they have regarding hpv and throat cancer(I have had 2 women doctors tell me there is no connection before this Hopkins study was released (3)refuse to do anything because it may be in the begining stage (4) make me feel crazy by giving me pysc drugs to take my mind off of the fact that I can't get help because that would entail some sort of "socialized healthcare."So I'm crazy and scared. My schooling is falling apart, am now practically disabled my feelings of hoplessness, and broke. My whole life has already been to hard. If anyone can give me any information about what this could possibly be, please help. http://www.cancercompass.com/message-board/message/all,12267,0.htm Suicidal Tue, 22 May 2007 00:00:00 GMT Hello,DH was diagnosed in March with stage 4 cancer of the larynx.  He just finished his 10 radiation treatment.  This journey is harder than I ever thought it would be.DH is only 50 and in excellent health (other than the cancer).  He is a non-smoker.The cisplat was terrible!  We go in for round 2 on May 7th!  He is pretty scared.  He also has severe reactions to the Ethyol injections prior to radiation.  Voice is starting to go and food issues have only begun.  He has a peg tube, but we aren't using it yet.Looking for someone who is also going through this to chat with.  http://www.cancercompass.com/message-board/message/all,11645,0.htm Reading2kids Sat, 28 Apr 2007 00:00:00 GMT My Mom was diagnosed with neuroendocrine cancer of the throat in October of 2006.  A year or two prior, she had been having some issues with her voice, which had changed, and also had a bad odor coming from her mouth.  Her weight was down from 125 lbs. to 110 lbs. or so- and didn't have much of an appetite.  Several doctors prior to Oct. '06, suspected it was a post nasal drip- or allergy related.  Once her voice changed and became very hoarse, she went to an ENT guy who took a look down her throat and saw a tumor at her larynx.  The biopsy came back positive and she was diagnosed with neuroendocrine cancer.  More tests revealed that it had spread to her lymph nodes, and she was basically Stage 4 at the time of diagnosis.  The Mayo clinic in Scottsdale, AZ., agreed with the diagnosis, and concurred with the prescribed treatment of radiation and chemo.  They said if it had spread to her liver or lungs, they would not recommend any treatment at all, just care and comfort.   She began treatment at UMC in Tucson in November of 2006.  The first 20 or so radiation doses were aimed at the throat.  A month later, a scan of her head indicated several "spots" in her brain.  Spots, as they say, are synonomous with tumors and lesions- one in the same.  She did an addition 10 radiation treatments to her brain.  She went on a feeding tube during the radiation.After the radiation, she began 3 cycles of chemo, using Cisplatin.  Near the end of the 1st treatment, her hearing began to worsen, and the doctors recommended one more cycle of Chemo, using Carboplatin.  After this second cycle, she was going to have more scans to determine if any progress was being made.  At this point the prognosis was very poor, and in late February of 2006, she was given 2-3 months to live. She didn't know she was dying- nor did she want to.  We respected her wishes and carried on as though this was just a temporary sickness.During the 3 weeks off from chemo, her airway nearly closed up completely, and she had to have an emergency tracheotomy.  After the procedure, more scans revealed that her throat tumor had grown back, and she had 8-10 lesions (tumors) in her lungs as well.  She was on a ventilator for 1 week, and never regained consciousness.  She died 10 days later, in hospice with family at her side.  She was 64 years old. Neuroendocrine cancer is very rare, and not much is known about it.  She smoked from 1960 to 1985 or so- but lived a very healthy lifestyle after  that.  I suspect it was related to smoking, but that's just my guess.  Please email me if I can be of any help or answer any questions.  http://www.cancercompass.com/message-board/message/all,11578,0.htm Cdub67 Wed, 25 Apr 2007 00:00:00 GMT PLEASE PLEASE respond if u have knowledge or have had your voice box removed! due to cancer! I am 60 yrs. old & the 39 radiation treatments didn't workx. I live in SC & haven't found any support groups 4 this kind of cancer. I want to find out if anybody else has been thru this & can help me to understand some things.....how do i eat, drink or talk after this voice box removal. My doctor seems eager to operate but can't tell me the stage of cancer until after he operates. I thought since the radiation didn't work maybe chemo.but Doctor said it wouldn't help. Surgery is the only answer!  My health is not good, diabetis, high blood pressure & arthritis in some joints. After reading a lot of "stuff" on the internet many people (who have passed on) said if they could go back & do it again they would not agree to the surgery with stage 4 cancer! Seems like a lot of percentages with people who didn't live very long after the operation! Doctor said some lymph nodes would have to be removed but I don't know how many!  I would appreciate some feed back from anyone that can address any of these issues.I have surgery scheduled the 2nd.week of April  & I will admit that I fear that this is going to kill me! I am alone & don't know who I can reach out to. I can only whisper & please tell me if there r any devices to help patients like me. I would greatly appreciate any replies to this email. God Bless u all!  ----------------- lX-07osh  http://www.cancercompass.com/message-board/message/all,10857,0.htm Heyladee55 Fri, 30 Mar 2007 00:00:00 GMT My 64 mother has been diagnosed with stage 4 laryngeal cancer. She has opted not to have a total removal of her voice box. She has opted to have chemo and radiation . Right know she has a trach to breathe, has anyone had this treatment. Im wonder if she will have additional problems with the treatment because of this. Any information is appreciated.                                                              scared daughter http://www.cancercompass.com/message-board/message/all,9887,0.htm Leman Sun, 25 Feb 2007 00:00:00 GMT Hello,I just came across this site/message board and this is my first post. I'm still trying to sort out all the terminology. Here's how this has unfolded.Early December 2006 my wife mentioned a lump on the right side of her neck just below the ear. The lump was noticeable and we decided to "watch" it for a few days and see if it went away. My wife had no symptoms at all  After a few days the lump had not changed and we went to see our family doctor who prescribed Levaquin for ten days. After completing the antibiotic there was no change in the lump and we went back to the family doc.We were then sent to a surgeon for a biopsy. The surgeon said this looked like something an ENT specialist should look at so we got referred to an ENT.The ENT ordered a CT scan to see if the lump was in a salivary gland or a lymph node. CT scan came back and showed the lump was an enlarged lymph node (3.5 cm x 3.2 cm x 1.5 cm).The ENT then did a needle aspiration biopsy. After a few days the ENT said the needle biopsy was inconclusive and the lymph node had to be removed.On 2/12/07 they removed the lymph node. My wife did very well and went home the same day. Prior to the surgery the ENT said there was a 50-50 chance it would be lymphoma. Two days ago (2/20) I took my wife back to get her stiches out and we got the biopsy results. Biopsy came back and showed a non small cell metastatic carcinoma. This was not what we expected because the needle biopsy had been negative, but the ENT said it may have been a case where the sample he took could have been from good tissue. He then put a fiberoptic scope down her nose and found a small (?) 1 cm squamous cell carcinoma on the right side of her epiglottis. The ENT said that we should probably expect 7 wks radiation, five times per week as well as the possibility of some chemo, but that the two oncologists he was referring her to would decide.Next step will be a PET scan (we are awaiting approval). On Monday we have an appointement with a Medical Onc. as well as a Radiation Onc. That's the reader's digest version of what has happened to my wife in the last two and a half months. (Sorry to be so long winded.)After trying to do as much search as possible, it appears that the cure is maybe worse than the disease. Some of the posts here make the treatment sound absolutely ghoulish and horrible. Any advice would be helpful. Any input on what questions to ask the oncologists would be really helpful. I think I know most of the questions I'd like to get answers on but input would sure help. Any good websites for answers? The stuff available on the web is overwhelming. Thank you. http://www.cancercompass.com/message-board/message/all,9833,0.htm Waltm5615 Thu, 22 Feb 2007 00:00:00 GMT My father has cancer of the larnyx and finish chemo and radiation right before x-mas. the past week or two his neck has started to swell and its just getting worse. is this normal?? http://www.cancercompass.com/message-board/message/all,9312,0.htm Lilsaunt Thu, 01 Feb 2007 00:00:00 GMT My daughter, age 40, was diagnosed with cancer of the tonsil. She had them both removed, they also did a neck disection. She is now going into phase 2 with radiation coming in a couple more weeks. This week she will go in and they will make the radiation mask. She is petrified, since she is clostraphobic. Can anyone give me some words of advice to comfort her? She isn't married and is going through this with family love and support. Her surgery was 4 weeks ago and she is still having trouble swallowing meats. Has anyone else been in this situation and can you tell me how long this will go on? She has lost 20# and needs to gain before the radiation treatments. Her right ear and side of the neck is still numb from the surgery. Any supportive words will help. A caring mother http://www.cancercompass.com/message-board/message/all,8091,0.htm Pm1947 Sun, 03 Dec 2006 00:00:00 GMT