CancerCompass message board discussion started by Awisesoldier on 11/16/2005 http://www.cancercompass.com/message-board/message/all,3484,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi I'm Kevin and was just diagnosed today with oral tonque cancer. Alls I know it is maligent, can be removed, and I have a tumor in my tonque. they say i got it from smoking but quit smoking 10 years ago but smoked 15 years ago before that. I'm interested in hearing from people who have had similar situations and how they're treatment and outcome have came out. I'll know more next week, but scared and lonely at the moment.thank you, Kevin Awisesoldier Wed, 16 Nov 2005 00:00:00 GMT Kevin, Did you serve in Vietnam? I ask because my husband had cancer of the tonsil last year and there are several others who also have had it. We are trying to establish a connection between Agent Orange and this type of cancer. Bernadette Wed, 16 Nov 2005 00:00:00 GMT I read your message and I have also contracted cancer in the tonsil. I was in Viet Nam and never smoked and drink on occasion. My doctors wrote a letter for me to present to the Veterans group but I have been dennied. I am going to fight this to the end. If we can get all of the names together, I think we have a chance. John --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Casey Wed, 16 Nov 2005 00:00:00 GMT There is a Congressman in New Hampshire who has sponsored a bill to allow cancer of the tonsil to be included in the cancers that VA pays for. I believe it is HR 3209. We have written to our Congressman to get him to sign on as co-sponsor and to alert him to the situation. My husband is on his next to last appeal and we don't know when the appeals board is meeting next. BTW, he is so far fully recovered. He had surgery with removal of tonsil and part of the hard palate followed by six weeks of radiation. After one year he has been cancer free. We hope that you have a good support system in place because love of friends and family is key. Bernadette Wed, 16 Nov 2005 00:00:00 GMT Kevin, my husband was diagnosed with tongue cancer last May. After 35 days of radiation and three rounds of chemo ending in August and surgery two weeks ago to remove two lymph nodes and do a tongue biopsy, Jim has gotten a cancer free report!! It was a frightening time for us, but we had incredible support from our cancer center. They worked with us endlessly to see that Jim was as comfortable as possible. He doesn't remember most of the summer because he slept most of the day and night. Do you have help to take over day to day decisions? Other good news is that many but not all of the side effects of treatment were temporary for Jim. Keep writing in with questions if we can be of help. Take care. Our thoughts are with you. Kay Kaygr Thu, 17 Nov 2005 00:00:00 GMT Three years ago, I received the same news. I also was very scared.In a 7 hour operation, the Drs removed part of my tongue and replaced it with tissue from my right arm. Put in a feeding tube for three weeks.I di not have to have chemo or radiotion. I have some trouble eating now. No hot foods ot "hard foods" You can make it. I know you can. Just hope you have good Drs.I know just how you feel and my thought and prayers are with you. Mildred Mildred D. Fri, 18 Nov 2005 00:00:00 GMT Three years ago, I received the same news. I also was very scared.In a 7 hour operation, the Drs removed part of my tongue and replaced it with tissue from my right arm. Put in a feeding tube for three weeks.I di not have to have chemo or radiotion. I have some trouble eating now. No hot foods ot "hard foods" You can make it. I know you can. Just hope you have good Drs.I know just how you feel and my thought and prayers are with you. Mildred Mildred D. Fri, 18 Nov 2005 00:00:00 GMT People and posts from people like you make me feel better. See what happened is in 2000 i had major brain surgery for seisures at the mayo clinic and was seisure free for 5 yrs. until in July i let my meds get old by accident had a seisure. I bit my tonque in sevaral places on the right side bad, it is five months later and still hasn't healed, they stiched part of it up but it still hasn't healed much. That's when they took a bi-opsy and then i find I have the tumor which probaly layed dorment for 10 years. i smoked for 15 years and quit 10 years ago. I find out more the 22nd about the biopsy so your prayers are deeply appreciated, thank you , Kevin Awisesoldier Fri, 18 Nov 2005 00:00:00 GMT I would be interested in emailing you or Jim. Curious about the permanent side effects of the cemo Jim has. Made me feel better about myself to here Jim has completely recovered. You or Jim can email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- thank you, Kevin Awisesoldier Fri, 18 Nov 2005 00:00:00 GMT Glad you had so many people respond to your message. I hope it helps to know that you are not alone.I will pray long and hard for you, espically on the 22nt.YOu need to keep your spirtis up. Hard, I know. Also you need to eat. I drink Ensure as well as eat and take a liquid vitimin. I have had three differant types of cancer and at 72, I am still here! I had no long term effects from chemo.My hair came back and the color returned to my face. I saw your email address and Will email you if you like. Do you have someone to help you at home? Keep your chin up! There is life after cancer. Mildred Mildred D. Sat, 19 Nov 2005 00:00:00 GMT Yes by all means go ahead and email me. I live by myself in my apt. if i went in the hospital i could find someone to watch my cat. I'm on disability and after tthe surgery i could get help through my social worker with chores around the house. It's strange finding this out after not smoking for 10 yrs and next month is my 46 birthday. I thought i went through enough with the brain surgery at the mayo in 2000. Oh, well I got back into the church seen bigtime, maybe that will help, This guy at church gave me some healing scriptures. Awisesoldier Sat, 19 Nov 2005 00:00:00 GMT Kevin, Find out from your Dr. if you will have a feeding tube or not. You will need to stock up on Ensure and plain broth. chicken and or beef. Also stock up on cat food and litter. You will not feel like shopping for a few weeks.If you like to read you might stock up on books as well You will drop some pounds. I went to Target and bought some sweat pants in a smaller size. You might check and see if the hospital has a volenteer center and get someone there to help you also. You can buy a blender, if you don't have one and and use that to make things you can get down. At my cancer center they has a receipt book for things to put in the blender. Ask questions, make a list of things you want to know. I am glad you are back in church. I am going to ask a group called "Prayer Warriors" to add you to their list.I will continue to pray for you and ask friends to as well. Will you be at a V.A. hospital? My e-mail address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---Feel free to email me. When do you go back to the Dr.? Know that you are in my thoughts and prayers and feel free to ask any questions you might have. Mildred Mildred D. Sun, 20 Nov 2005 00:00:00 GMT hi, i too have had oral cancer,at the age of 30 i was diagonsed. 3 partial glossectomies and a right neck dissection,chemo,radiation and a feeding tube later,here i am...lol....hopefully for a long time to come. would love to know how you made out.best wishes rose Rosebud Thu, 23 Mar 2006 00:00:00 GMT Hello Kevin, I just now read your message and it's four months later so I presume you are now, or have been, under treatment. Just want to send a note saying that my husband was diagnosed with a tumor on the base of tongue in August '05. He had 39 radiation treatments at 7000 centigrades and three chemo treatments with carboplatin. He also had a shot of Amifostin before every radiation treatment to save the salivary glands. This concluded on November 28th last year (2005), and so far he is feeling fine. My husband had major weight loss, big sore on the neck, sore and difficulty swallowing, very tired and slept a lot and still does... it's a very tough treatment. But now he is almost himself again - has gained some weight but needs more, his PET scans are clear so far; he has taste and smell, not as much saliva as before but he's not without; he's working in the yard, planning to re-tile the bathroom... We attend a support group every month through SPOHNC, which is very informative and helpful. There is light at the end of this difficult time. Take care, Swede Harvsfru Sun, 02 Apr 2006 00:00:00 GMT Hi Rose they did a 12 hr. operation at the mayo clinic, removed 40 lymph nodes and they believe they got all the cancer. I had 6 weeks of radiation and recently just got home. Swallowing is still difficult and still have the feeding tube of course. they made a 20 inch incision in my left leg and took out a muscle to make 1/2 of my tonque complete, thanks, Kevin Awisesoldier Sun, 23 Apr 2006 00:00:00 GMT Hi i wish i would have known about the amifostin, I would have asked them before giving me radiation to give it to me to save my salivitory glands. Let me know how your husbands swallowing is doing? thanks, Kevin Awisesoldier Sun, 23 Apr 2006 00:00:00 GMT My husband had tonsil Ca 3 yrs ago. Had radical neck disection, 13 hr surgery with wrist tissue grafted to thraot. All this followed by 6 weeks of radaiton Tx. We chose no amifostin because only 50/50 chance it will protect salivary glands. Instead we went with IMRT radaition which is a fine precise radaition wiht minimal salivary gland destruction. He lost some salivary function but compared to others I see (Am A Dental Hygienist) he is faring better and I believe he will not have hte problems with tooth loss and Jaw necrosisi seen in some of the older tx cases. Jim is 3 years cancer free and doing well. Keep praying, depend on God to see you through and seek all new information. Don't let the Drs. railroad you inot accepting treatment until you've looked at all choices. Get in touch with oral Ca support group and talk to others who have experienced different types of treatments. God bless you. Jackyrmtn Thu, 25 May 2006 00:00:00 GMT Hi Kevin: I hope you are recovering well. Radiation caused serious burns to my neck, especially the right side where I had the full dose. Kaiser prescribed Silvadeen. It was almost like a miracle drug; the burns healed very quickly. However, this gave me a false sense of optimism. I expected the inside of my mouth and throat to heal within the next few weeks. It did not work that way. I am still a bit sore and a little sensitive to some foods. I have had no problems swallowing for many weeks now but the ridges of my tongue are not completely healed. Nonetheless, I have had a dramatic improvement over the last 6 or so weeks. I can handle a moderate amount of mustard, e.g. I do have some saliva but not enough. However, I do not panic if I walk off without a water bottle - I sometimes go a few hours without any. I also go the entire night without water. If I breathed through my nose all night I probably would not be dry in the morning; but I breath through my mouth so I am quite dry in the morning. Even then I feel no urgency to drink water. But I do drink a lot of water with each meal, of necessity. In case you are having a difficult time gainng weight you might try CNC's "1850 Weight Gainer". I had my last radiation treatment on October '05, by which time I had lost 28#. I thought I would start gaining weight in no time. Instead I continued to lose another 24#. On February 6 I started using 1850 and began gaining weight immediately. At the present time I seem to have plateaued at a gain of 15 to 17#. However, I have reduced my intake of 1850 so that may be the reason for the plateau. Regards, Harv Harvsfru Thu, 01 Jun 2006 00:00:00 GMT  On 11/16/2005 Awisesoldier wrote:Hi I'm Kevin and was just diagnosed today with oral tonque cancer. Alls I know it is maligent, can be removed, and I have a tumor in my tonque. they say i got it from smoking but quit smoking 10 years ago but smoked 15 years ago before that. I'm interested in hearing from people who have had similar situations and how they're treatment and outcome have came out. I'll know more next week, but scared and lonely at the moment.thank you, KevinHI Kevin, 2 years ago I was diagnosed with head and neck cancer, I went in and had the chemo, the radiation and a disession of the neck , which means they surgiclay removed the lymp nodes on the left side of my neck. I also smoked about 10 years prior to the cancer. I must say there were times that were tough especially with the radiation after effects, very hard to get food down, and sore throat, plus lots of phlem, BUT, with some carefull planning, and a positive attitude ,and the GRACE of GOD, I was able to move on and overcome most of the problems.Your Doc. can give you some great tips on what to expect,as far as eating and ways to keep your strentgh up.Preparing foods to liquify them in a blender and to keep you hydrated is very important.Cancer is scary and very demanding but hang in there, You can do it ,there are many of us that have it and many of us continue to survive ,by being POSITIVE, GOD bless, keep us up to date, Joe T Zotos Fri, 15 Jun 2007 00:00:00 GMT i have just finished 36 radiation treatments and 7 chemo treatments fot base of tongue fourth stage cancer the Doctors are now recommendend Brachytheraphy for me. Has anyone out there been through this treatment.  I am so scared and have now Idea what to do joe724 Sun, 02 Sep 2007 00:00:00 GMT My father has stage IV base of tongue cancer, diagnosed 6/12/07, with lymph node involvement on both sides of the neck.  He has just finished week five of M-F radiation along with once-a-week chemo treatment with Erbitux.  He has two more weeks of radiation/chemo.  He has a PEG tube which he is using for all his nutrition and medication.  He has not lost too much weight, however he weighs 139 at 6 feet tall.  He had lost quite a bit of weight before his diagnosis.I do not know what brachytherapy is so am sorry not to be able to comment on that.My father has had the throat, saliva, burn irritations from the radiation and is very tired most of the time.  He is completely overwhelmed by the cancer and is not holding it together very well.  His oncologist says he is doing very well, treatment-wise.  His behavior is nasty and mean.  This is basically his personality, but with cancer all those qualities have been accentuated.  I just came back from five days there and it was a most miserable visit.  He does not want me to help him, suggest things or come up with ideas that could help him.  Only if HE thinks of something am I free to look up information.  He yells, screams, swears and is quite awful to be around.I know that the stress of having cancer must absolutely turn one's world upside down, but I also recognize that his personality is shattering and pushing away everyone who attempts to help him.I wish you the very best.  It is a very tough treatment, and I know you are going through a rough time.  Feel free to write whenever.  I care.Maggie Memah Sun, 02 Sep 2007 00:00:00 GMT Hi there sweet daughter,May God be with you and your father through these rough times.  Last night I noticed a stain that looks like a bruise under my tongue and am worried sick.  Do you know anything about this?  Please let me know.   claire-God help! GOD help Sun, 02 Sep 2007 00:00:00 GMT I was diognosed just a few weeks ago with the same thing.  I have started a blod which vividly discribes my situation.  http://www.surviving-oral-cancer.com/  I am still going through treaments and I would be willing to help in any way I can.  Feel free to contact me if you wish. John Johnny47 Sat, 23 Feb 2008 00:00:00 GMT