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Questions about mouth sores during head and neck radiation
Hi, 7 weeks out from surgery. This is the third regrowth in 7 years. The first two removals were done thinking it was a cyst. The second pathology showed it was a pleomorphic adenoma on the parotid gland. I saw an ENT/head and neck surgeon last August. We Watched the area with MRI’s and decided to go forth with the…
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Mugard
We have at least 3 full unopned bottles of Mugard. Can we give this to someone here whose insurance won't pay for it?
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Question/Request
I have heard quite a few people say this on here... that things will never be the same once treatment is over. It may sound silly to ask, but what is it that never is the same again? Is it emotionally, physically, etc... I just kind of want to know what to expect with dad as time goes on... Also, a friend of mine's…
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Feeling lost
Feeling a bit lost and unsure. It's been 19 months since my dx of adcc. Many of you know it's been kind of a wild, uncharted ride I've been on. I did a relatively dumb thing...cancelling my ENT appointment last month. I found a pretty large lump just below the resect site of my original tumor. Feels identical to the…
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inspirational quote of the day
i read these inspirational quotes every day and every once in while it hits home - so here is todays Once you start recognizing the truth of your story, finish the story. It happened but you're still here, you're still capable, powerful, you're not your circumstance. It happened and you made it through. You're still fully…
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Dad's treatment DONE
Hi Everyone, Dad had his last radiation treatment a few hours ago. Now I hope everything goes well and things start looking up. I know you all have said these next few months he may still be miserable, but if that means no more chemo/rads he will make it through! This treatment in my opinion was one of the worst I have…
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Scared- please read
I know that I may be a little out of line here since I myself was not diagnosed with cancer. However, about a month ago my dad was diagnosed with a "highly treatable" cancer in his sinus cavity and the doctors found the same type of cancer in one of his lymph nodes. My family has had a really hard time accepting this and I…
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Tim6003 Hello CSN family
Hello to my online family. Man do I miss chatting you all up! I'm hoping to get back on and post more often pretty soon. Mom is officially now in an assisted living facility. I won't pretend she is happy and all is well, in fact she is quite mean spirited and downright angry at me right now, but I know it has to do with…
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NED is the word
Went in for my results on the pet scan and was told by my doctor that I'm NED .He also stated that I wouldn't have to have another pet scan.I asked if that where true and that i thought i would have to have one every 3 mos. he said usually if your first pet scan came back as a NED then it was around about 90% to 95% chance…
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enough is enough
Since my surgery in November 2011, I have put on so much weight I can't stand it! I lost 50 lbs right after surgery, feeding tube, etc, but now, I find myself at the highest weight I've ever been, even while pregnant for a 10lb,1 ounze boy. The Dr tested my thyroid and it came back normal, I've talked to him about this,…
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FNA Biopsy Negative
It would appear that the FNA on my slighly enlarged node was necrotic and there were no viable cancer cells...so they canceled the selective neck dissection and said see you in six weeks for my post treatment PT Scan! Great news but still a little on edge about the first Pet Scan... Jon
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Yet another PEG question for y'all
Since this board is WAY more informative than anyone or anything else...I need to ask yet another PEG question. Peggy and I have gotten along pretty well. She saved me and I'm forever grateful for a rad oncologist who stepped in and ordered it for me. I am having one issue. It's no secret that I want this thing out, but…
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Something little, from the heart!
Well everyone...here is what I decided on! Not sure I shared the story of the mustache, but I was quite sad when dad lost his. I've never seen him my whole life without his...so now he can have one ;) Well ... kinda! Lol, hope everyone has a good one and thanks again for the suggestions. Next to me and my time, this is…
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Treatment Unsuccessful
The latest CAT Scan indicated that the chemo did not slow or reverse the spread of the cancer. Therefore, the chemo has been discontinued and the cancer is left to run its course. I should expect "months" to live rather than "years". For a short time, I will feel better as the side effects of the chemo wear off. There is a…
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Frustrated
I really thought by now I would be doing great but I'm not . My saliva glands were working then quit was starting to eat getting back to being me then bam quit working no saliva for 3 weeks now the dry mouth is horrible I have tried it all all I can do is sip water all the time. Can't eat or talk have not been out of the…
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NED...15 month scan
Woo Hoo!... My 15 month scan was NED!...all is well except the tyroid function is a bit low. The doctors want to wait 4 months to the next checkup and see if it gets better because she said once I start the medication for thyroid I would be on it for the rest of my life. So....I am going to try and eat better. Hopefully,…
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Dad's update - 1 year after he started Chemo/rads - all is great!!
Dear friends! I was away from this forum for quite some time now... To tell you the truth time is passing so fast, summer is here, we're really trying to enjoy life. Some of you know me and were a great help for me in times, when it was the worst and when I neede an advice. For all newcomers - this is wonderful place and I…
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Thyroid Levels/Blood Counts
It was suggested I have my TSH levels checked. I logged onto my page at Johns Hopkins (why I didn't do it sooner....?) and found that my levels as of 6-7-13 were: TSH 0.50-4.50 mcIU/mL 0.19 I also saw my red and white blood counts and hemoglobin were low as well. RBC 4.50-5.90 M/cu mm 3.20 WBC 4.50-11.00 K/cu mm 3.14…
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Timing of first scan post tx
The MO put the order for a PET and it was approved quickly as I got a call to schedule the scan. I am just 7 weeks post of chemo-rads and want to ensure sufficient time has transpired before getting the scan. Does about 10 weeks seem about right to let the rads cool off and things to be stable enough that a scan will offer…
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Epiglottis not working right after treatment
Good evening all...My husband is now almost 9 months out of treatment. A couple months ago after continually having trouble with swallowing and choking the ENT sent him for a swallow test and it was positive for aspirations on all foods except really thick ones. The ENT said that treatment can sometimes cause your…
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Is there a way to search old posts ? / other than clicking through all the numbers at the bottom?
Is there a way for me to search (say my own posts) over the last 20 months? Or even others who posted? If so, anyone know how to do that without having to click through the numbers at the bottom ..lol. Thanks, Tim
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Fur Kids ~ Dali' Stare Down
OK, peeples.... The forum is kind of being in a blah sort of state... Maybe time to add a little family life out side of the cancer arena... This is a photo of Kali and myself doing our "Salvador Dali'" stare..., LOL... Post up a few of your favorite fur kid photos... Kali and her sister Jazz were a tremendous part of my…
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Anxious
I am just a couple of days away from being 3 weeks post tx. Phlegm and sour throat are the only real after effects I am experiencing. I am not taking any pain meds, minimal throat pain, no peg, eating soft foods and drinking. Managed to put 5 pounds on so far. I am anxious to get back to work (carpentry), and riding my…
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Gerson Therapy
Since we are so desperate and confuse and in need for more suggestions we are thinking of alternatives. Does anyone have done Gerson Therapy in Mexico not that we able to travel since we can’t afford it but they also offer online or on phone consultation. Does anyone have any experience with it?? Thanks, Hetal
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they say morbid and radical surgery
This is a first post for me - I have squamous cell - cheek , nose, lip with nerve involvement . Their primary course of action would remove my nose (half missing already), my cheek bone because the CA is following nerve, hopefully not my eye ( "see when we get in there"), and my upper lip. This followed by radiation. I…
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throat dilation
i will b getting my throat dilated next week. for the first time it will b done in the office w/o any medicine. i've always been asleep when this was done. has anyone had it done in the office? does it hurt? how long after does ur throat hurt? i've had so much pain from different things in this past year that anything that…
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I need your help! (not cancer related)
So as some of you may know... dad's only has one day left of treatment after today. His birthday is Friday- the day after ending treatment. He keeps telling me "nah, don't get me nothing...I don't want you to," etc... I need your help. I'm having troubles trying to figure out something special he can enjoy right now. He…
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Side effects from Eribtux and Carboplatin
My mom is starting this new chemo tomorrow and the doctor told her she could get a rash from one of these drugs. I am wondering if anyone that has taken these chemo drugs experienced any side effects? she is very nervous due to the last chemo combo ended with her in the hospital for 16 days. My mother has SCC of pharynx…
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HELP Please -Different protocol from different doctor at University of Chicago.
Hello, Different protocol from different doctor at University of Chicago. We just got back from doctor at university of Chicago. He is not happy that my husband has to do second round of radiation and chemo. Per him my husband will have following treatment. One week twice a day radiation and chemo with 3 different…
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side effect question
I am going to see my ENT on tuesday but i figured you guys know more anyway so i am going to throw it out here. Question: i think i have thrush but i am not sure. i am not showing the familiar white spots on my tongue, however anytime i drink anything with bubles like soda or a beer or anything with a high level of acidity…