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Chi Ku: A Chinese term for what we face each day of treatment and recovery
I was relaxing in the park this weekend reading Oprah magazine and this phrase jumped out at me: Chi Ku. It translates literally as "to eat bitterness" and is a Chinese phrase for enduring hardship. It means to endure something unpleasant in good humor. Or to continue despite great difficulties in a general sense of…
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Brushing your teeth
For those just beginning radiation therapy, I highly recommend the Oral B electric toothbrush with the round head. Before I started treatments, my dentist recommended it for its obvious cleaning benefits. I didn't realize then how invaluable it would be for me. I usually take my brush to work so I can be clean for…
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10 Things To Never Say To Someone With Cancer
Today, I came across an in interesting article on MSN. The story detailed things not to say to people with various medical conditions, and one section was the “10 Things To Never Say To Someone With Cancer.” Here is the link:…
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Surviving 16 years post oral diagnosis
Hello to those who are interested. yes! It's been that long since my first diagnosis In 2000. The cancer came back 3 times. The jawbone replacement took place in 2013 but since then all is well. I'm very close to living my normal life except for the feeding tube ( 5 years now) but it has been a blessing in disguise . I…
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Waiting for first biopsy results today and scared
Hi, All. I'm a newbie. I just had a biopsy on Tuesday, March 31, 2016, and was told the surgeon would call today with the results. They took punch biopsies of my upper back gum area, left side, and one of the right side of my tongue. For years, I have suffered with Oral Lichen Planus, and the oral surgeon thought the…
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Lotions or creams?
I am not enjoying the Aquaphor. Sticky, gooey, yucky feeling. A nurse at MDA mentioned Jeans Cream, but at $45 for 7 oz, I think I'll pass. Basically they said it's okay to use Coconut oil or any lotion we want as long as there is no alcohol. I think someone mentioned Calendula. What worked for you?
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Alternative Treatments
Looking for some candid feedback. I am 61. Healthy and strong. Except, I have stage 4 squamous cell cancer with a tumor at the base of my tongue. Docs are gearing up for chemo and 6 weeks of radiation. Is this the way to go? It seems wrong to me. Kill my good cells to kill the cancer and hope I survive it. As others who…
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Geographic mouth from radiation
I have been in remission since January 2008. Have some side effects from chemo and radiation. Loss of hearing, lots of mucuous but one of the most pain ones that has continued over the years and wish I could resolve is geographic tongue. It causes my mouth to burn and be very painful. My ent has prescribed "magic…
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Follow up visit
I had my second follow up with the surgeon today. (Tumor removal, tongue). Everything looks good. He did say that he could do an outpatiet surgery to fix the lump of skin on the top of my tongue, but I said I'd wait to see if it goes down any further. I keep messing with it and it is somewhat inflamed. I'm gonna give Advil…
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Going for implants and wondering
Hi everyone.I had a cat scan yesterday to check for the density in my jaw from the radiation.Doctor was very happy with the results so now we moving forward.And wondering if anyone else has gone though this?He is going to trim my gum line and move my tounge flap back a little.And also having the denist make up a splint as…
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New member, husband with tonsil cancer - post-surgery and protons, possible lung spots
Hi everyone, It is strange to be here, in this forum, after my husband has already gone 8 months or so into the process. He was diagnosed with tonsil cancer in August 2015: T3-4, HPV+18. I appreciate your many stories. I'm hoping for guidance. I didn't think I'd need to post on a forum, thinking my 46yr old husband was in…
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Squamous Cell Carcinoma
Hello! I am new to the site and am seeking some advice and encouragment. My mother, age 74, was recently diagnosed with squamous cell carcinoma of the tongue. She was not a candidate for robotic laser surgery as they determined it would be too extensive for her. She began daily radiation treatments two weeks ago, has a…
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Only 9 treatments So far
And I was stunned to see how irritated my gums were on the side that's being treated. I have a canker sore in upper mouth back where the molars are, the front part of my lower lips, and the gums already look blood red and swollen. Dentist said it's the beginning of mucositis :-( I'm trying to be positive and not get down…
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Help me treat sebaceous carcinoma
Hello, Does anyone have any information regarding sebaceous carcinoma. Doctors don't seem to understand how to treat and I need someone else who has is or a love one who has it to tell me what treatment if any they have had or what to expect. Thanks and God Bless NRIO99
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Is spitting up blood a common sign of oropharynx cancers?
Hello everyone, I've posted this on several forums, because I am hoping more people see this and might chime in. Over the past year, I have had several episodes of spitting up blood. It's not from bleeding gums or tooth decay. I feel that the blood is coming from the back of the throat. Over the past year, I felt that I…
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I need to be talked down, please.
I am really scared. As you all know, my husband was diagnosed with stage 1 tongue cancer (front, right side of tongue) in Oct. 2015. He has surgery, radiation and cisplatin, and finished treatment in January 2016. He has had 2 clean scans, the last one being in early May. He had a visit with the ENT back in May and with…
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Physical limitations after oral cancer
After having a neck dissection with radiation, I am wondering what are my physical limitations moving forward. Has anyone had to limit physical activities such as the gym, amusement parks, running, etc. My daughter loves roller coasters and we've become coaster buddies. But now I'm a little afraid of injuring my neck. I'm…
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tounge flap
Hu...just wondering if anyone has ever had or have heard of having thier tounge flap released??Denisit has aske me if my doctor said anything about it.Told him no and he said he talk to him.Just wondering how it went...
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Someone asked me if I was a "cancer survivor"? And if I was "worried my cancer would ever come back"
I recently had someone asked me if I was a "cancer survivor"? And if I was "worried my cancer would ever come back"? I never thought of myself as a "cancer survivor". I just had a crappy "speed bump on the way through life" (i.e. cancer)...on the way to growing old with my wife and kids. Then I started thinking about it.…
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Introduction
Hi! My name is Joanne. I was diagnosed with Stage IV A (T1N2bM0) cancer. Treatment plan is 7 weeks radiation, 5 days a week - chemo (cisplatin) 3 cycles, 3 weeks apart. I will have a PEG tube as I weigh 109 lbs dont have much weight to spare. I go to have my radiation mask made Friday and Monday will be the planning and…
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Introduction
Hello all, I joined a few weeks ago and have been reading your very helpful hints, which have been invaluable. My husband was diagnosed in March, Stage 3 SCC of the right tonsil. He has had 27 radiation treatments and two rounds of Cisplatin, no surgery, no peg. Fortunately, he is still eating some solid foods with the…
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Article about HPV and H&N cancers
I ran across an older article, but a new one to me and thought I would share it. It is from HemOnc today. I did use the tiny.url site to make the link smaller. With the prevalence of HPV+ cancers increasing, I encourage all of you who have daughters, AND SONS, to have them vaccinated with the HPV vaccine. I know it was…
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Radiation Doc Follow Up Today and Thank You
My husband met with his radiation oncologist today for a follow up visit. It has been 4 and a half months since he finished treatment for tongue cancer. The doc said that my husband looks excellent and that the prognosis looks great for him. The radiation and chemo was not required, and today the doc said he estimates…
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My dad's Voice prothesis was removed?? To enable speech ? How ? Why
It's a human right to speech yet dad's voice prothesis was removed to enable with swallowing difficulties . They have caused him to aspirate continuesly .. Now he can't , talk walk , eat or drink. 3. In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all…
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Oral Surgery is over
Well they did the procedure to uncover my implant and put in temporary posts. Surgery went well but they did some additional work where they increased the area in front of my lower gums to allow a better fit of the implants. They cut between the lower gums in front and put in a skin graft from my leg. Then put a splint…
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One week down
I feel good just having finished a week without screaming when the mask is bolted down. No symptoms yet. I had fatigue from surgery which is improving, but still there, so not radiation related. Stilk eating well, and able to do some exercise. Enjoying life. Met some really nice people in the radiation waiting area.…
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Necrosis problems in jawbone
I am sorry to bring up a new situation since there are enough going on already during everyone's cancer treatment. I survived stage 4 throat cancer that was treated in Chicago and Munster, IN. Since then I've had many more medical situations including falling over and getting injured and then being diagnosed with vertigo.…
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My radiation journey - Week 3
I just completed 14 treatments out of 33 and here's my experience to date. Lost one day to the holiday last week. However, the radiation forgot to celebrate Memorial Day like the rest of us. Sores on my tongue, inside my cheeks, and one near my throat, got pretty serious. Although I'm still eating a regular diet, I have…
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Is one month too long to wait to see oncologist after biopsy results?
I just got my biopsy results on June 2, and my report was faxed to Johns Hopkins by my oral surgeon. JH called today and said the first available appointment for my consult with the specialist that my oral surgeon recommended is July 5. His office told me that he will see me that morning and decide which scans/tests to…
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Sinonasal adenocarcinoma
Hi everyone, I'm brand new here. I'm wondering if someone went through anything somewhat similar. So my husband, 44 yrs old, was diagnosed with sinonasal adenocarcinoma in March. He had surgery to remove it. his surgeon rec was to do radiation for 6 weeks and chemo once a week. We heard about proton beam therapy and we…