CancerCompass message board discussion started by Lynn A. on 7/6/2003 http://www.cancercompass.com/message-board/message/all,882,0.htm Thu, 28 Aug 2008 00:00:00 GMT Thu, 28 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am interested in hearing from someone who is or has been treated for this type of cancer. My husband was diagnosed in late March and is currently undergoing radiation and chemo. Thanks. Lynn A. Sun, 06 Jul 2003 00:00:00 GMT I have been diagnosed with this type cancer, in the beginning of June 2003, since then I underwent surgery and had a neck disection, removing of the lymph nodes on the left side of my neck, in 2 weeks I also will start chemo and radiation. joseph T. Mon, 07 Jul 2003 00:00:00 GMT I have had neck cancer for over three years and during that time I have done a great deal of research. Please send me a message, I can help you. Raymond D. Tue, 08 Jul 2003 00:00:00 GMT Hi, my brother was diagnosed with this type of disease in Oct.2002. He has completed his radiation but he told me about the side effects he still has e.g. dry mouth, lack of taste in foods...I once read about a radiation method called Cyberknife with minimal side effects. Perhaps you can inquire about this with his doctor. May God bless you all. Arthur C. Wed, 09 Jul 2003 00:00:00 GMT Lynn, In 1980, when I was 26, I was treated for Nasopharyngeal carcinoma cancer. I was treated totally with radiation therapy. I went every day for about 3 months for treatment. My head from my eyes down, and my complete neck were treated. In 1980 they told me that I probably had only about 6 months to live, but here I still am 23 years later! I only wish they had told me more then about some of the life-long side-effects that I was going to experience from the radiation treatment; things like a total loss of saliva glands, difficulty swallowing, inability to open my mouth anymore more than about an inch, etc. Tell your husband to work on stretching those mouth muscles and tendons now, before it's too late! Maybe then he won't have as much of a problem opening his mouth as I now have. While I had over 20 years more of life, 2 years ago I was totally devastated when I developed osteogenic sarcoma (bone cancer) in my jaw. The oncologist and radiologist both told me that this new cancer was a direct result of the radiation treatment that received 20 years ago for the nasopharyngeal cancer. This bone cancer is even more deadly though than the nasal cancer. In the past 2 years I've had 4 major surgeries on my head, and also went through 10 months of intensive inpatient chemotherapy in the hospital. I'm not giving up though! I had a long good run of 20 years of being cancer-free, and I hoping for another 20! Tell your husband to hang in there, think positive, remember that there are many people loving and counting on him, and he'll be okay. And if he believes in Him, don't forget about God! It may be tough at times, but I believe that he can beat this! I'll also pray for him. Feel free to write me or have your husband if he wants to. I'll help anyway I can, even if it's only to answer questions you might have. Lynn Lynn R. Thu, 10 Jul 2003 00:00:00 GMT I'm 28 and I was diagnosed with nasopharyngeal cancer December of 2002. I underwent chemo and radiation treatments until the end of March 2003. I am now 5 months cancer free! If there is anything I can do and questions you want to ask, please know that I am here and happy to share my story. I hope treatments are working and there is not too much pain. My heart goes out to you and your family. Christy D. Sat, 23 Aug 2003 00:00:00 GMT  On 7/8/2003 Raymond D. wrote:I have had neck cancer for over three years and during that time I have done a great deal of research. Please send me a message, I can help you.My husband was recently diagnosed (two months) with nasopharyngeal cancer - stage IV - has metastacized in his bones (clavicle, sternum, spine, hips, pelvis, shoulders, sternum and femurs.)  They are not doing radiation.. we just finished the first round (five days of chemo) - Cisplatin and 5FU ... doctors haven't been very positve about his survival.. any information would be appreciated. Mickies Sun, 17 Dec 2006 00:00:00 GMT  On 12/17/2006 Mickies wrote: On 7/8/2003 Raymond D. wrote:I have had neck cancer for over three years and during that time I have done a great deal of research. Please send me a message, I can help you.My husband was recently diagnosed (two months) with nasopharyngeal cancer - stage IV - has metastacized in his bones (clavicle, sternum, spine, hips, pelvis, shoulders, sternum and femurs.)  They are not doing radiation.. we just finished the first round (five days of chemo) - Cisplatin and 5FU ... doctors haven't been very positve about his survival.. any information would be appreciated. With the severity of this cancer because it has metastacized you must take action immediately. I would contact Dr. Ralph Moss a cancer information specialist at www.cancerdecisions.com, he will help you understand where in the world is the best treatment of your type of cancer.  I am sure he will recommend Germany, Germany is about 20 years ahead of the United States for cancer treatment. If you need more information please write.Raymond Raymond D. Sun, 17 Dec 2006 00:00:00 GMT unfortunately there would be no way we could afford to make the trip to germany... we still have two teenage boys at home... i am still working but my husband can no longer work... he does not have insurance so we are trying to get qualified on the state sponsored insurance here in louisiana.   what do you know about this type of cancer.... the doctor's do not seem very encouraging.. although they have been kind... they have said that it is treatable, but incurrable and that he might have a year at most.. but really coudn't say anything..... do you have any idea what we are looking at...my husband is already in extreme pain in his bones... Mickies Wed, 27 Dec 2006 00:00:00 GMT  On 8/23/2003 Christy D. wrote:I'm 28 and I was diagnosed with nasopharyngeal cancer December of 2002. I underwent chemo and radiation treatments until the end of March 2003. I am now 5 months cancer free! If there is anything I can do and questions you want to ask, please know that I am here and happy to share my story. I hope treatments are working and there is not too much pain. My heart goes out to you and your family. My husband was recently diagnosed (two months) with nasopharyngeal cancer - stage IV - has metastacized in his bones (clavicle, sternum, spine, hips, pelvis, shoulders, sternum and femurs.)  They are not doing radiation.. we just finished the first round (five days of chemo) - Cisplatin and 5FU ... doctors haven't been very positve about his survival.. any information would be appreciated. Mickies Fri, 29 Dec 2006 00:00:00 GMT Hello: My Mother was just diagnosed with nasopharyngeal cancer.  We will find out the biopsy results on Tuesday.  They did a ct scan of the neck and said there was nothing there.  Can anyone tell me anything about this.  They are saying no surgery just radiation or radiation and chemo.  We're all so frightened.  Could you share your experience with me please.   Thank you.Angel Rozelle Sat, 13 Jan 2007 00:00:00 GMT Hello:I am going to give you medcial information.Go into this site under Cancer Information, then scroll down till you see discuss. Click on discuss.You will now be in, cancer discassions, scroll down to the date 1-1-2007 it is called important subject cancer.Study this information as it can save your life.In God's WorkRaymond Raymond D. Sat, 13 Jan 2007 00:00:00 GMT  On 1/13/2007 Rozelle wrote:Hello: My Mother was just diagnosed with nasopharyngeal cancer.  We will find out the biopsy results on Tuesday.  They did a ct scan of the neck and said there was nothing there.  Can anyone tell me anything about this.  They are saying no surgery just radiation or radiation and chemo.  We're all so frightened.  Could you share your experience with me please.   Thank you.AngelMy husband was diagnosed with nasopharangeal cancer in october - unfortunately it had already gone to both sides of his neck and metatasized in his bones.  we have been encouraged by the first chemo treatment....(two days of cistaplan and three days of 5FU (they wouldn't give him any radiation either) They also began giving him weekly treatments of Zometa (which we understand is to stregnthen his bones and help with pain management)  Unfortunately the 5FU broke down the veins in his arms too bad for us to be able to do the 5FU this time (we are on a 21 day cycle of chemo) so we went in last week and did two days of Cistaplan and then they sent us home with two weeks work th Xoleda which is the pill form of chemo... My husband only lost his appetite the the third day during the chemo treatment and was week for a week after that... but this time he lost his appetite and hasn't gotten it back.  I think the Xoleda is making him sick... but they put a port in this last time so we can do the Cisplatin and the 5FU the next time.... tell your mother to get her port put in before her second treatement..... it's VERY important.  Our doctors told us that the 5FU is very rough on the veins...... Let me know how she is doing .... Did they tell her if the cancer had metastasized anywhere.  We are dealing with it in my husband's spine, hips, shoulders and sternum... but he is keeping his spirits up.... we have two teenage boys and he is determined to see them grow up....  I wish you the best.  If you are your mother's caregiver... hang in and take care of yourself...My husband can't work anymore so i am the only one working... plus dealing with the treatments, etc.... ASK QUESTIONS...... LOTS OF QUESTIONS.  and try to keep your head up..... it's rough on ALL of the family.... let me know how your mother does. Mickies Sat, 13 Jan 2007 00:00:00 GMT Hello!  My husband was diognosed with stage 4B Nasopharyngeal Carcinoma Cancer in September 2006. He has been doing chemo(cycplatin) every3 weeks and just finished radiation January 25. 39 radiation treatments.  His first round of chemo in October 2006 was cycplatin, docatexile and a 5 day treatment of 5-fu. The three made the tumor grow so they stopped the other and went to cycplatin and Erbitux.  The tumor had extention into sinus and bone it literally ate the bone it was attached to lymphnodes on both sides of neck where involved,  We found out in December that they had no choice but to radiate the brain stem, the tumor was attached and if they didn't it would kill him.  We have to wait for the side affects from this. From radiation he has a dry mouth, the taste for most foods is gone,  He got very ill from the radiation I give him IV fluids daily because he can't drink enough to hydrate himself he has a g-tube and is getting better at tolerating the canned food.  He has gone from 159lbs to todays weight 115lbs.  He is scared about the weight loss and admitted tonight he was worried he was going to die, to the point he told me when he was going to sleep so I would keep an eye on him.  We are waiting to get an MRI to find out if the tumor is gone and if radiation worked.  We know the lymphnodes are clear now.  I told him i found this board and he wanted to know if anyone has had these issues and what they did to gain the weight and just some encouragement.  Thank you for any info God bless you all   Susie Susie d Wed, 21 Feb 2007 00:00:00 GMT  On 8/23/2003 Christy D. wrote:I'm 28 and I was diagnosed with nasopharyngeal cancer December of 2002. I underwent chemo and radiation treatments until the end of March 2003. I am now 5 months cancer free! If there is anything I can do and questions you want to ask, please know that I am here and happy to share my story. I hope treatments are working and there is not too much pain. My heart goes out to you and your family. Hello Christy:My husband has just been diagnosed with NPC.  You seem to have had a success story.  Can you share with me the treatment plan they used?  Where?Thank you,   Mediator Sat, 15 Dec 2007 00:00:00 GMT  On 1/13/2007 Rozelle wrote:Hello: My Mother was just diagnosed with nasopharyngeal cancer.  We will find out the biopsy results on Tuesday.  They did a ct scan of the neck and said there was nothing there.  Can anyone tell me anything about this.  They are saying no surgery just radiation or radiation and chemo.  We're all so frightened.  Could you share your experience with me please.   Thank you.AngelMy husband and I share a similar path.  Let's keep in touch and help one another thru the caregiver path, shall we?   Mediator Sat, 15 Dec 2007 00:00:00 GMT Its been 5 years since I was diagnosed with Nasopharyngeal cancer. I am still cancer free. For treatment, I went once a week for 12 weeks of chemotherapy (Taxol and Carboplatin), and also everyday (5 days a week) for radiation. I was finally diagnosed after sending my biopsy results and scans to MD Anderson. I was treated in Atlanta by Atlanta Cancer Care and had my radiation at St. Joseph's hospital in Atlanta. I heard they have come along way in 5 years, especially with radiation treatments. My treatment lasted only 3 months but while you are going through it, it seems so long, but in hindsight it was just a short time. During the first few weeks of treatment, I felt fine and then one day I woke up and felt awful, throat sore, weak, achy, dizzy, and zero energy. I wasn't able to swallow anything and lost a lot of weight. If they are going to be doing radiation to the neck, I would highly recommend that you have a stomach tube put in at the beginning of treatment. That way you are able to get used to it before you feel bad. Make sure you have a great ENT doctor. You should have a very close relationship with that doctor during and after treatments. Almost immediately after treatment, I started to have more energy and was able to eat again. About 6 months after treatment I felt almost normal again. I know cancer is tough on the patient and their family and friends. I know it is especially hard at this time of year. You would think after being a cancer survivor, I would know the perfect thing to say but I am always at a loss for words. What helped me (besides a lot of sleep) was to focus on what I was going to do in 3 months, 6 months, 1 year, 5 years and having a great support network of friends and family. If you have any questions, please don't hesitate to ask. Even if the questions come a week, a month, or a year from now. Christy D. Sun, 16 Dec 2007 00:00:00 GMT Christy:I was so excited to receive your email.  Please email me anytime, with any thoughts you have.  It is an inspiration to me to hear of your success.  I'm thankful you have been cancer free for so long!  Keep up the good work!  You are my light at the end of the tunnel.  I'm a direct person, so no need to search for words.  The information you provide helps me tremendously.  I'm certain to have a million questions for you.  I hope you'll hang in there with me.  I find reassurance in your straight out approach such as the stomach tube.  While my husband is hard to approach on health issues, he was in a receptive mood today.  I explained the stomach tube necessity and a possible pic line.  Did you have a line or just get stuck each time?  Seems worthwhile to get a line and a tube early on.  I'd appreciate your advice.  Also, we are seeing a nutritionist on Wed.  Did you see one?  I've heard they are good at keeping you physically balanced before and after treatments.  I imagine there is no avoiding the tube from what I have read.  Thank you, thank you, thank you.  Kara     Mediator Sun, 16 Dec 2007 00:00:00 GMT