Radiation survivor stories of women

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Radiation survivor stories of women

by Charlene_F_1 on Mon Sep 08, 2003 12:00 AM

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I have had removed a cancerous mass next to my left parotid gland and I have been advised to have six weeks of radiation. This treatment would be five days a week. It would involve having a stomach tube put in in case I have problems swallowing. I would like to hear from women who have had this type of cancer and been given radiation. Please email me if you can give me info. Thank you Char

RE: Radiation survivor stories of women

by Christy_D on Tue Sep 16, 2003 12:00 AM

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I had Nasopharyngeal carcinoma and was diagnosed last Decemeber. I had 12 weeks of chemotherapy (going 1 day a week) and 8 weeks of radiation (going 5 days a week)to my head and neck. The first two weeks the only trouble I had was with the drug amifostine that they gave me to help prevent the loss of saliva. Amifostine made me extremly sick and I stopped taking that. I was fine and then suddenly about my 4th week in, my throat was so extremely sore that I could not even take water. I quickly became dehydrated and was hospitalized for 2 weeks and was given a feeding tube. The feeding tube does take some getting used to but I would highly recommend having one before it is medically necessary. I had dropped 40 pounds before I had one installed ;) You become quite fond of it once you realize its a great and easy way to take codeine and other medicine. I also developed sores in my mouth and would go through phases of having dry mouth to having an abundance of saliva and drainage from my nose. They should give you special mouthwashes that will fight germs and numb your mouth and throat. Stay on top of those and stay away from acidic fruits and vegetables. It's not a pleasant experience but as of April I am cancer free and feel that it is well worth the trouble. The after effects that I have are a dry mouth, but it's not that bad unless I talk a lot, and I'm not able to open my mouth that wide. My jaw is very tight but it's loosening up a bit. I also am really sensitive to spicy foods, no matter how mild they are and pepper is my tongues worst enemy. My favorite substance became ice cream. That's something to look forward to. How often do you hear a doctor tell you to eat all the ice cream you want? I hope things are going well and encourage you to continue. Please feel free to contact me if I can be of any other help. I would like to hear how you are coming along. Good luck.

RE: RE: Radiation survivor stories of women

by Charlene_F_1 on Thu Sep 18, 2003 12:00 AM

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Christy, Thank you so much for writing. What were some of the foods you could not eat while radiation and is there any now that you can't taste? What type of cancer is the one you had? Is it squamous cell? Several people I have talked to said they did not have the stomach tube. My radiologist and my oncologist both say it is the best way to be able to take nourishment if you have problems swallowing. Did it bother you to walk around with the tube in. I also have to have a minor test done before the radiation and wondered if you have to tape it in place or something. Sorry for all the questions but you are the first one who has responded to my message that is a woman and had their radiation recently. Were you burned much and did the face mask bother you? Again thanks and congratulations survivor. Char

RE: RE: RE: Radiation survivor stories of women

by Christy_D on Fri Sep 19, 2003 12:00 AM

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I had nasal pharyngeal carcinoma - a tumor in the back of the nose/top of my throat. A squamous cell cancer that broke through the base of my skull and spread to the lymph nodes in my neck. I am 28 years old. Your taste and what you are able to eat changes gradually. In my case, the tumor had put pressure on some of my cranial nerves and had partially paralyzed my tongue making eating and speaking difficult to begin with. With the radiation drying up your saliva glands, it made it that much harder. Anything that is dry and dense, like bread, I found very difficult to swallow and still do. Although I have had much improvement in the past six months. As i loved all things spicy, I still have trouble with it but I am building up my tolerance slowly. I find that putting gravy or sauces on food helps out alot. My favorite foods were seafood, pastas, ice cream, yogurts, apple sauce, and steamed veggies. (did I mention ice cream?) Anything that slides easily with no acid or spice. The most frustrating thing is that you are hungry and it takes you a long time to actually eat and then the eating actually becomes physically exhausting. And when it does become painful and exhausting (about week 3 or 4 for me), that is when the Boost drinks become your best friend. My favorites flavors are coffee mocha, or chocolate mixed with a chocolate shake. Be sure to get the Boost Plus for extra calories. You can also use these when you have to do tube feedings. The tube takes some getting used to, especially feeding yourself. Be sure to have towels around for when you spill (or it could be that I'm just a klutz.) It's quite an odd experience but once you get the hang of it, is not bad. I became quite fond of my tube as I don't like tasting medicine. Physically, the only time it bothered me is if I tried to sleep on my stomach. But its easy to hide under a baggy shirt and shouldn't be a problem with your test. Once its out (and that is the painful part...that's the worst pain out of all this cancer stuff but it only lasts just a moment)it just leaves a small 1/2 inch scar. The radiation caused my skin to dry up a little and it did get red and splotchy, but nothing painful like a sunburn. The nurses gave me some special lotion for radiation patients, Biofine, and that helps. But that was the least of my concerns. I had mouth sores but we are not sure if that was from radiation or chemo (each one blames the others;) The face mask is an interesting experience. I'm not sure if you have had yours made yet, but it's something out of the movies. It's almost looks like bubble wrap that is a mesh and you can breathe through it. They didn't explain the procedure very well and I didn't know what to expect. All of a sudden they stretch this stuff over my face and you feel like they are trying to suffocate you until you realize that you can breathe through this "bubble wrap". This only last a split second and soon the mask will form to your face shape. The only time the mask was uncomfortable was for the last three treatments. For the last three treatments, they formed a new mask, where I had to stretch my neck as far back as i could. The 15 minutes or so it took to map out everything on my mask were uncomfortable. The radiation itself didn't last long enough to bother me in the mask and is not painful whatsover. It's hard to believe that its doing anything at all. I was given radiation in 3 different positions that lasted maybe a total of a minute and a half for the whole procedure. It hardly feels like its worth the trip in. I hope its convenient to you. I hope I haven't disuaded or discouraged you. I'm just being frank and telling things I wished I had known so I would know what to have expected. I wish you luck and good health and will share with you anything you want to know about what I went through. Sorry to ramble on and hope this soothes some concerns.

RE: RE: RE: RE: Radiation survivor stories of women

by Charlene_F_1 on Tue Sep 30, 2003 12:00 AM

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Hi Christy, I just wanted to let you know that I have decided to have the radiation and I start it next monday, October 6, 2003. I had the simulation done today and thank you for telling me that I could breathe with it. I recalled what you said and I was less nervous. I also had a scan done with the mask on right after the simulation. Is that how they did you too? On Thursday I will have a scope of the esophagus done at the diagnostic scan part of the hospital. At that time they will put in the peg tube. I hope you are still doing well. Are you taste buds still returning? The doctor is going to give me the Ethol. They used to give you a shot but it is now put under the skin like a tb test. I live in Syracuse, NY and the place I will be seeing my doctors and having radiation is a new building in East Syracuse. Again thanks for all the info. Keep in touch. Char

RE: Radiation survivor stories of women

by Viviene_W on Fri Sep 19, 2003 12:00 AM

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Hi, My freind had radiation for throat cancer in April for six weeks. After the radiation he was doing very well, he was get his voice back, eating and now he is very sick, he's very weak , his throat is smelling and their a red spot on his vocal cord, he can't eat, he is just not doing very good at all. He went back to the doctor they keeping telling him that the don't see no cancer they think he having reaction from the radiiation. They also put him on antibiotic for the smelling help a little but he is in plan. Please tell what is you think is going here. Thank you

Vocal Cord Cancer

by Mistified on Wed Jul 20, 2005 12:00 AM

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I am 37, and had it when I was 34, on my left cord. I did not need radiation, but they where going to do that, until a dr, sent me to the university of Michigan head and neck clinic (ototlyongology) my dr's name is dr. Norman Hogikyn, the best in the field! He removed it and I have follow ups often. As far as the smell and redness, sounds like he got burned from too much radiation....they where afraid of that with me, that’s why they sent me. Said it was very delicate tissue to kill. He needs to go elsewhere and get another opinion. I was a light smoker and said it was only common in heavy smokers and people over 55. I now have a good voice, I can sing to my three year old!!!
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