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Craniofacial Resection Sugery on June 19th - Stressed like never before
Hello all,,, Well my surgery is on June 19th, next week. Its a 8 or 9 hours surgery, after that i have recovery period at hospital for a week, then recovery at home. After that i head for radiotherapy. But right now my concern is the surgery. Im freaking out, the idea of people working inside my head is killing, especially…
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Update on tooth decay drama
Hi folks, Well, I was correct, the back edges of 5 teeth are eroding and starting to decay from lack of saliva killing the bacteria. The plan is to get the decay out via drill (UGH), and then add composit bonding to seal them. Have 2 new products to use at home now: 1. NeutraSal which is an electrolyte solution to treat…
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Another PET scan
It just keeps going on and on :-( Wishing I could catch a break. About a month ago I had thrush and 2 lesions on floor of mouth that I assumed were from recent chemo. The thrush went away with meds and one lesion is gone and one getting smaller. Then about 2 weeks ago, my speech took a turn. Trouble saying some…
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Welcome
Welcome everyone. I recently completed radiation and chemo for mouth cancer, stage 3. Has anyone rung the bell of completion?? My hospital does not have that program so I improvised! I hope everyone is doing well. Feel free to contact me with any questions or suggestions. Now the waiting period for before the PETScan to…
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Don't always respond
Don't always respond to everyone's post But I do read most................some sad and some happy............... But I am here I love this site everyone is strong and very supportive ....................so with that said anyone can pm if they want to talk not sure how to check my messages but will figure that out soon…
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Emotional Support Treatment Starting Soon
To all my new found friends on this board, thank you so much for all the support you have given to me. I feel very blessed to have found a place where there are others who can truly understand what I'm going through. With all the surgeries, it feels like my energy has been drained. Now, as I approach the begining of my rad…
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Treatment Over
Friends, have finished 33 Rt and 3 cisplatins. Still eating minimal weight loss. No mouth sores, got saliva but dry mouth overnight, taste ok but staying off spicy food for a bit, on pain killers, got a bit of tender skin behind ear. A bit tired so early nights. Id just like to thank everybody for your wise words of…
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sherbear, KarenSuki, Robyn64, Donka...
Hello all, I was reading some of the posts, and i felt the need to write this post for :Shearbear, KarenSuki, Robyn64 and Donka.. all of the 4 are starting treatments, and new things, it must have been really hard to start new thing in life especially when its not a nice thing. Since i haven't started any treatment yet,…
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Checking in with inspirational quote of the day
When we are no longer able to change a situation, we are challenged to change ourselves. i thought this was an appropriate quote for the day in this room. had my 18 month check up yesterday and the doc said everything looks good and we would schedule a pets can in December. He also mentioned something that he didn't…
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Meniers.org
This is a great site great people it......Like a small family you can get all the info on ears tinittus vertigo fullness..............some people have ear problems on that site due to treatment ..............................Take a peek over it's a really nice site and you can learn alot of stuff from the people there It…
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Dentist - Update after Dr Visit
So, I went to the dentist today. It has been almost 4 years. My teeth are in great shape. That is a releif - I had radiation 7 years ago. HOWEVER, the dentist saw a lesion on my tongue. It is 5mmX7mm oval, and has a yellow halo. I got worried when he started asking me if I still see an ENT regularly and when I go next. He…
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Neck shrinkage and weakness
I was wondering did any one have the muscles of their neck shriveled up and have difficutly holding their head up due to muscle weakness? My neck resembles plastic man's neck when he is stretched out. I have a hard time holding my head upright due to weakness. So when I walk or run, the head just bobbles around freely like…
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Clinical trial Phase II at NIH
Christian Hinrichs at NIH is recruting for persons who have cervical, oropharangeal, vaginal, anal and penile HPV+ cancers. This is the one that involves taking one's T-cells and multiplying them and infusing them back into the body along with a drug called aidesleukin which boosts the immune system. It is open to those…
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Radiation burn creams , which is a good one ?
Hi there , I promised myself not to google too much on symptoms etc about my cancer, its too scarey to do that. But I did google radiation burn creams. Some are saying Biafine and then others recommend Miaderm over the previous cream. What have others used and how did you find it when using it ? I have still yet to see…
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Mid May health Update.
Update to my health status: Because not all of my friends and family are on csn I may not always post here Solution: I do have an email that I sent out with updates. If you would like for me to email you as well, please PM me with your email address. your email will be private and not shared or shown to anyone else, not…
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Paranoid in Montana.....
I've been freaking for about a week.....and can't seem to contain it to myself any more. I went to the Oncologist on May 22....all was fine....the same ol, same ol......decided to wait till August for another MRI. Then, 4 days later my right ear (that actual ear) started tingling....pins and needles, without stop. Strange…
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Weight gain difficulty
Please feel free to chime in or add your experiences in regard to gaining weight after treatment for NPC or any forms of head and neck cancer. I am about a little over 6 months out of treatment with 3 Chemos and 33 Radiations. Able to eat but struggle (manageable) with swallowing. Have been eating burritos, hamburgers,…
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Phrannie51
Good news I spoke to my hubby's colleague went through the same thing had the same feeling was worried to death went to her ent and it turned out to be the effects of the rad and chemo she is going on 15 months clear I spoke to her today she also had tinnitus before cancer soo try not to worry to much hang in there
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First scan after RADs
Gabe had his first scan post treatment on Friday. That was one of the longest weekends off my life waiting for those results! The Dr found some lumps on his opposite jawline from where the cancer was originally found so we decided to have the scans done a few weeks early. We are scheduled to head back to Houston the third…
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What changes did you make after treatment to improve your chances of cancer not returning ?
Hello there, I had my dentist today to see if they were taking any teeth out ready for my radiation treatment. Thankfully I get to keep them all. I am soo happy for once that something is in my favour. Speaking with the dentist, she said I have to take special care of my teeth because radiation can weaken them and muck…
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Docs app't result
At last found why I am so tired and breathless, it was the thyroid under active. The doc was smiling when I went in so I knew he had found something. he said it jumped out of the screen at him. I've been put on a low dose of Levothyroxine, he said I should respond quite quickly. I do hope so because I've felt so listless…
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Update on jaw resection
My jaw resection was 4+ weeks ago, and so far it's been a mixed bag to report. The good news is that the main surgical site appears to be healing well, as is the 'donor' site on my left leg where they took the skin and bone for my new left jaw. On the other side, I had some complications that have caused me to need a lot…
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Gum cancer in the jawbone 3 years out from treatment I'm here if u have questions
I don't get on her often but my email is debi16043@gmail.com for those out there with questions. I periodically post this and some have contacted me in the past with their questions. I am 3 years (June 15) post surgery, had fibula removed from leg to make my new jaw bone. I had stage 4 scc. Lymph odes all removed on…
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MuGard Feedback Please
I'm going to start treatment on June 8th. I asked my doctor to order MuGard for me and expect to get it on Friday. I've read that some have used MuGard to help with mucousitis. I'm interested in learning about your experience using it. Did it help? How and when did you use it? How many times per day? My understanding is…
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Docs tomorrow
had ECG and blood test on Mon, Doc rang yesterday wants to see me. With luck they may have found why I get breathless walking up stairs and slopes and feel tired all the time. They did several tests including thyroid. Several of you recommended to get a thyroid test. Fingers crossed they have found the cause now I may be…
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Titanic plate used in jaw replacement is broken
Md Anderson dentist x-rayed my jaw last month because my jaw isn't lining up correctly and she discovered my plate has been broken in two places. Anyone else have this happen? She seemed surprised surgery was just 3 years ago. debra
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Skiffin ~ 19MAY2014
Just a quick note... I didn't have an infection which is good... I still have two drains that are putting out about 1 - 2 Oz of gunky fluid that smells terrible, and they leak where the tubes are stitched and tied into my belly... Hopefully they will get these sealed off soon..., kinda demoralizing have crap leaking out of…
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four years out from diagnosis
Four years out from a late stage hypopharyngeal cancer diagnosis, Jim got an all clear from his ENT. This is rare for this kind of cancer so we are very happy with this report and hope others find the news encouraging. Remember: it's not cancer until they say it is cancer and, even then, statistics are just that. Keep…
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Starting the Journey
My husband just received his tongue cancer stage IVA diagnosis three weeks ago and we still have until June 9 before treatment starts. Up until I found this site, we felt so helpless and alone...just reading through some of the contributions from other people going through this process at various stages, gives us strength.…
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Diagnoses
1. for the first time I got a diagnoses on paper from the onc.......it says T1,N2b squamous cell carcinoma of the right tongue base treated with primary surgery and adjuvant radiotherapy completed Oct2013 3 cancerous lymph nodes. 2. hypopharyngeal/cricopharyngeal narrowing post radiotherapy can anybody translate this for…