CancerCompass message board discussion started by Michael12 on 12/27/2005 http://www.cancercompass.com/message-board/message/all,3835,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Does anyone know what the survival rates is for squemous cell cancer of the back of the tongue and tonsel with radiation only? Does chemo increase the odds substantially. One doctor told me he did not recomend it. Another did. Can anyone tell me if the trade off in quality of life is worth the chemo. I know we are talking life death but I have been given two different opinions by knowledgeble cancer surgeons. I am 61 and in good shape. I don't really have 30 pounds to lose. Needless to say I am quie scared of the whole process. Season greetings to all. ...Mickey Michael12 Tue, 27 Dec 2005 00:00:00 GMT Hi Mickey, I just finished chemo and radiation. My surgrey was done at Sloan Katering in NYC and Radiation and Chemo at North Western Memorial in Chicago. The radiation was much harder than chemo. I have neck cancer with unknown primarey. I lost 65lbs and may lose more. I started out 265 and now am 202. I got sick alot from infections but am ok now. I feel good however I do get tirered more easley. If you can start exercises for swolling do it now!!This will help you to advoid getting a feeding tube.Don't be overconcerned about getting sick from chemo they have lots of anti nausea meds that will make it ok. I am 54 I hope to live to 94. Feel free to contack 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 --- Mike Outlaw Thu, 29 Dec 2005 00:00:00 GMT Hi Mickey, 3 years ago I was diagnosed with oral cavity cancer. They found a T2 on the floor of my mouth, way back under my tongue. I don't know if there is much difference between yours and mine, but 33 radiation treatments later, I'm still here. It was painful as the radiation burned/effected my mouth and eating habits. Took quit some time for me to eat a steak again, but rest assured, they taste wonderful, again! There are parts of my mouth that recieved permanent damage, I'll live with that. Hope this is some comfort! Happy Holidays, Brian Brian N. Thu, 29 Dec 2005 00:00:00 GMT I had base of the tongue cancer, squamous cell carcinoma, 9 yrs ago. I had radiation only. My oncologist at UCSF recommended that I do not get chemo and I am glad since I have enough side effects from the radiation. It would be helpful for you to see a Naturopathic doctor or a holistic practitioner before your treatments as there are things that can help reduce the side effects. I did not know this when I had my treatments and your oncologist will not know or tell you this. I don't know what area you are in but I do know someone in New York State and in New Jersey. I was told that chemo does not help much in the throat. Hope all goes well- try to be postive, your mind is very powerful- visualize yourself getting well several times a day. Nora K Nora k Thu, 29 Dec 2005 00:00:00 GMT Hi Mickey, I read your message and thought you might want to try the Dr. Lorraine Day cancer treatment. She has several videos in regard to cancer. "Cancer doesn't scare me anymore" is very good. I have all of them. She has a web site to order them. She is a Cancer survivor without chemo or radiation. Good luck.Pat Pattie Thu, 29 Dec 2005 00:00:00 GMT Dear Mickey, I had the same thing you have and did both treatments @ Emory University this summer/fall. I was told that with both chemo and radiation that the survival rate was very good- 70% plus. Interestingly enough, I have a childhood friend who was diagnosed and treated 2 years ago (same base of tongue, etc.). He was told that chemo increased odds by 10% (treated in Miami). He opted not to do the chemo. I was not really given an option nor told the odds for a different choice. He and I are 61 also. I recommend a feeding tube as most people are unable to eat during the latter part of treatment. I had one and was able to maintain my weight for most of the treatment ( I had a complication and my esophagus sealed shut at the end of treatment. I have since had it opened surgically and am eating pizza, steak,etc., just fine now). This is a tough treatment- be sure to gather friends and loved ones around you to help- but it is definitely worth it. Also check out the website for ivanhoe.com- latest in medical research info. At U of Alabama they have been doing research on the use of a Speech Pathologist to work with our kind of cancer to do exercises before and during treatment to keep throat as flexible as possible. I would have definitely done it had I known about it before my treatment finished. Good Luck and Happy New Year. Let me know if I can help. Wishing you the best, Goose1 1right1 Thu, 29 Dec 2005 00:00:00 GMT Dear Michael, I have good news: survival rates apply to groups of people, not to individual people. So, whatever positive or negative information you get on survival rates for your type of cancer, do not assume that it's telling you how long YOU will live, or whether YOU will recover! My mom is an example of how rates don't apply to individuals: On May 19, 2004, a nurse told me that Mom's cancer was unlikely to respond much at all to the new intravenous therapy she was starting, and she'd likely be gone in a few months. It was thought very improbable that Mom would be here for Christmas of 2004. (I didn't tell Mom this.) In October of 2004, the last IV therapy quit working. The CEA numbers (that tell how much cancer is in you) were climbing. In November 2004, her oncologist shook slightly as he told her that there were no more approved therapies to try, but he'd try to get her into a clinical research study. When he looked, there were only a couple of Phase I studies available in which she could participate. The doctor in charge of them said that only 1%-2% of patients in a Phase I study actually get any medical benefit from the therapy being studied. She decided that it was much too much effort to commute frequently to the south side of Chicago to get a drug that had a 98-99% chance of doing absolutely no good. So, we waited for death. My mother's oncologist last saw her on November 21, 2005. Dr. Kapadia said that they had NEVER seen a patient like her, with so much cancer in her, who was still here after so long. He said "I don't know what's holding the cancer back." I told Dr. Kapadia that she's got a lot of people praying for her, and she's used some nutritional therapies. I don't know what are the relative effects of the alternative medicine vs. the small army praying for her -- but, if you want to beat the odds, God really does still answer prayer. And our bodies really DO profit from better nutrition than most of us are used to. So take heart! And, I need to say this, when all has been said and done, we all will die. And, as bad as that is, being in heaven would beat being on earth any day! Sharon B. Sharon B. Mon, 02 Jan 2006 00:00:00 GMT hi, i am 63 yrs of age n hve been diagnised with tongue cancer stage 4 affecting lymph nodes as well. i was told to do surgery and chemo and radiation all of which i did not opt for. i am on alternative remedies ayurvedic medicines,homeopathic medicines and resting at home. my children pray for me and give their support but now hve to attend to their lives too. i want to know how much more longer does one survive this type of cancer? i want to see the wedding of my son. Indira Sun, 28 May 2006 00:00:00 GMT Indira, You accidentally replied to MY reply to Mickey's posting. You might like to reply to HIS posting, or start one of your own. But what I said to Mickey I'll say to you: NO ONE can tell you how long YOU have to live! But there are factors that do affect how long you will beat the cancer. My mother survived LONG after her oncologist thought she'd be gone! (See my prior posting.) This sort of thing is so common that oncologists seem to be shying away from telling their patients how long the typical patient with cancer X will live. One of the reasons my mother was here much longer than is "typical" was that she had goals -- as you do! She wanted to attend her high school reunion on Oct. 1, 2005, and to see her youngest granddaughter graduate from high school in June 2006. She went to her class reunion, knowing she'd not be here to see another one. But, she was there that day, a year after the chemo therapies ended! She was here until things that really needed to happen, happened. Until she knew that Jesus Christ had taken personal responsibility for all her sins (see http://www.joshharris.com/theroom/originalarticle.htm). Also, I needed her here long enough to know that she'd be fine when she left. That happened in January. Jenny's graduation seemed a long way off, with no other goals likely to be fulfilled in the mean time. Mom went to heaven on January 27, 2006, 20 months after I was told she'd likely have 2-4 months. Tomorrow, I'm attending Jenny's graduation, and taking a card and gift from her Grandma. I doubt Mom is able to SEE what's happening on earth. But she probably knows. After all, God knows, and she's with Him. Goals that seem unattainable aren't very motivating. Maybe you could set up a series of goals for yourself, up to and beyond your son's wedding. If my mom had not had her goals, she'd likely have not lived as long! I don't know why you decided against chemotherapy and radiation. But they often give more time. My mother found chemo for her colon cancer much easier to take than was radiation. Both worked, for a while. Sharon Sharon B. Sun, 04 Jun 2006 00:00:00 GMT  On 1/2/2006 Sharon B. wrote:Dear Michael, I have good news: survival rates apply to groups of people, not to individual people. So, whatever positive or negative information you get on survival rates for your type of cancer, do not assume that it's telling you how long YOU will live, or whether YOU will recover! My mom is an example of how rates don't apply to individuals: On May 19, 2004, a nurse told me that Mom's cancer was unlikely to respond much at all to the new intravenous therapy she was starting, and she'd likely be gone in a few months. It was thought very improbable that Mom would be here for Christmas of 2004. (I didn't tell Mom this.) In October of 2004, the last IV therapy quit working. The CEA numbers (that tell how much cancer is in you) were climbing. In November 2004, her oncologist shook slightly as he told her that there were no more approved therapies to try, but he'd try to get her into a clinical research study. When he looked, there were only a couple of Phase I studies available in which she could participate. The doctor in charge of them said that only 1%-2% of patients in a Phase I study actually get any medical benefit from the therapy being studied. She decided that it was much too much effort to commute frequently to the south side of Chicago to get a drug that had a 98-99% chance of doing absolutely no good. So, we waited for death. My mother's oncologist last saw her on November 21, 2005. Dr. Kapadia said that they had NEVER seen a patient like her, with so much cancer in her, who was still here after so long. He said "I don't know what's holding the cancer back." I told Dr. Kapadia that she's got a lot of people praying for her, and she's used some nutritional therapies. I don't know what are the relative effects of the alternative medicine vs. the small army praying for her -- but, if you want to beat the odds, God really does still answer prayer. And our bodies really DO profit from better nutrition than most of us are used to. So take heart! And, I need to say this, when all has been said and done, we all will die. And, as bad as that is, being in heaven would beat being on earth any day! Sharon B. Dear Sharon,  I just wanted to thank you for helping me at a time when I was quite scared.  I have reached my first anniversary and just getting a chance to respond.  Thanks again,  God Bless.  Michael Michael12 Thu, 01 Mar 2007 00:00:00 GMT  On 5/28/2006 Indira wrote:hi, i am 63 yrs of age n hve been diagnised with tongue cancer stage 4 affecting lymph nodes as well. i was told to do surgery and chemo and radiation all of which i did not opt for. i am on alternative remedies ayurvedic medicines,homeopathic medicines and resting at home. my children pray for me and give their support but now hve to attend to their lives too. i want to know how much more longer does one survive this type of cancer? i want to see the wedding of my son.Dear Indira, I have gone the the radiation, chemo, surgery route and just now am getting back on my feet.  I pursued a number of alternative therapies as well.  How are you doing?  God Bless,  Michael Michael12 Thu, 01 Mar 2007 00:00:00 GMT