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To VivianLee
I'm going to go out on a limb here; but I hope our little group agrees with me. Vivian's love for David is the single most noticeable facet about their journey. Her love is beautiful. Her love for David lifts us all. It is the type of love that makes life worth it. We see all her pain and we respond to that pain. But…
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I know I am getting annoying
Hey Everyone, I really need to know if anyone out there lost their swallow after treatment only to do excersises and regain control. I know it can and does happen during treatment and you fight to maintain and regain. I am climbing my mountain and you have all (as they said long ago on SNL) PUMP ME UP! i was just wondering…
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do u have a permanent trake
do u have a perm trake? if so, how long have u had it? do u still cough a lot? have u had any complications? what problems do u have with it? any info will be appreciated. on another note, if someone reading this knows chefdaddy, can u please give me an update on his status. i haven't been on here for over a year so i'm…
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Janymac- stroke damage
Having recently seen the follow up thread on 2011 roll call and finding no one has noticed that I am there - not sure if I count though as I am from UK, but find myself 10 years on from NPC with ever more problems when I am meant to be being discharged am being kept on the books. These last two years have brought very…
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Leukoplakia on the Vocal Cords
I have a friend who was diagnosed with leukoplakia on the vocal cords, where they come together. He saw one ENT who said it was cancer and sent to another ENT. The next one was like a Mc Donald's drive through and scheduled surgery without any diagnostic work up leaving him with no confidence in her plan of care. The…
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Hidey-Ho Neighbor!!!
I just realized it's been a really long time since I was on here. I hope everyone is doing better, getting better, getting healthy, etc... As for me, I get another scan on Friday. Everything has been clean as a whistle so far. Let's have a repeat of that please! My swallowing is good, the saliva is the issue there. I have…
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Evoxac for Saliva
I've been using Evoxac now for about 4 weeks. I'm about 4 months out from my 2nd rad/chemo treatment for nasalpharengeal/maxillary sinus and eye orbit cancer. I have to say, that, my saliva generation seems much better than it has since my first rads in 2010. Could just be my time to feel better. But I would like to hear…
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Right Tonsil Stage II, 1 lymph, 9 teeth gone IMRT 35, 3 Cisplatin
HI all, I just wanted to say hello, coming up to my 3 year anniversary and thought it would give some hope. I too was obsessed in the early stages with info and looking for someone to tell me how long I had to live, but, now 3 years on, here is a short description which most of you will relate to. 45 year old female…
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Two types Squamous Cell - Rare Combo
Curious to find anyone else surviving with returning squamous cell cancer. My mother started with diagnosis in Sep2005 at 71 yrs old. No teeth already - but now no dentures either. Feeding tube installed Dec2005. First surgery JAN2006 lost inside cheek area with reconstruction from hip graph. No bone involvement at this…
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Todays scan
had a chest and neck scan at Hershey today, this comes following surgery I had in September to remove a small cancerous nodule in my left lung. Doctor said no cancer, still have a small 4mm nodule in left lung that is not cancerous, it's been there since 2010 and has not changed, I did not know it was there, so I had two…
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Peg Tube late in treatment
Oncologists want me to get a g-tube on Monday morning. I have finished chemo and have 4 Rad Tx left. Problem is, as many of you are aware, no appetite, everthing smells and taste like Boost or ensure to me,not able to eat any solids at all. Surviving on a 1300 cal smoothie per day and that takes 8 hrs to drinkand starting…
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Smell of Radiation or Chemo???
11 Months out of radition and Chemo, Still smell chemical of metal or Medical Office, Am I dreaming or is this still aftermath of rads etc....it's not stinky, thank god, but a wierd medicine smell...Any input thanks. Dennis
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mind, body, spirit
Hello guys and gals, I'm bringing up a subject that for me as a survivor needs to be addressed. Physical activity, and how to incorporate into our life styles after dx's and tx's. As most of you know my lungs are pretty banged up. The weather in Minnesota is not cooperating for walks outside. Ice, and more ice. Push ups,…
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Journal site now live - PLEASE JOIN and share
Hello fellow CSNers, I built and personal journal website. I did not care for the ones like caringbridge, more due their business model more than anything, and having skills and interest decided to build my own, specifically since I have full control over the look and feel, the content, and the features. The site is ready…
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Tonsil Cancer or Lymphoma or Both
(1) Noticed both tonsils slightly inflammed with one on the right bigger than the one on the left like 2 years ago in 2010. (2) Went to see the physician in Feb 2011 and he said its nothing and everything looked normal to him. One tonsil can be bigger than the other and it can just be an ongoing allergy. He prescribed me…
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When to call in Hospice
My husband's cancer has spread and he has elected not to do anything further. Surgery is out due to the fact that it has spread and he doesn't want to do anymore chemo since the chemo will be more and harder than what he has done already. Our oncologists have told us that more chemo won't cure only prolong and could even…
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30 Years Old - Stage 4 Paranasal Squamous Cell Carcinoma - Request for Help
My husband is 30 years old. He has always been the "picture of health" as an avid athlete and health conscious young man. In March of 2011 he was diagnosed with stage 4 squamous cell carcinoma of the paranasal sinuses with an unknown primary. The tumor spread along the nerves through to the sphenoid and cavernous sinuses…
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Speech Therapy session today:
Had my evaluation from new speech thrapist and now know what happens when you are all 1st dx and referred to speech. DO IT, there is no guareentee that what happened to me @ 12yrs clean won't happen to anyone, but much less likely if you are ahead of it. I would have been, but the technology or connection from rad to…
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About Cyberknife
Hi everyone, I have a question on cyberknife. If it can remove tumours, why do H&N cancer(such as NPC) patients still need radiotherapy?
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Lost My Voice
Hi, I am starting week 5 of treatments for tonsil cancer. I just lost my voice. I do not remember reading that this might be a sympton. I am so worried and really hope that this is just temporary. I did notice lots of throat swelling over the 4 day treatment break. Did this happen to any of you? Did you get normal voice…
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MATT talking to Matt
If Matt were to ask Matt... What advice would Matt give to Matt..., I mean concerning Matt of course..., LOL...? JG
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**New REPOSTING for Postie a/k/a Brenda**
Hi there, I have been reading all your posts and soaking in the infor. I am a Canadian girl, 47, with stage 2 Squamous Cell Carcinoma of the tongue. I am going for rad #10 of 30 today and have had one round of Cisplatin of 3 treatments. Round 2 is on Feb 19th 2013. I can't believe how much my mouth changed overnight as far…
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Squamous Cell Carinoma on Temple Leading to Nerve Invasion
Hi, I am new to this site. Glad to have found it. My dad has been diagnosed with Squamous Cell Carcinoma that has invaded his facial nerves. he is being told to do radiation. It is advanced and inoperable, so that is the treatment. Another doctor said radiation and chemo. Anyone out there who has been through this and has…
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Liquid diet formulation
Hi all, With all the recent talk about swallowing and "eating" of any form orally and the need to keep swallowing during treatment, I accellerated my experimentation with liquid nutrition so I am not going to be "eating" anything, only swallowing water and liquid nutrition. Personally, the Ensure type stuff is a bunch of…
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Who has recieved H&N radiation twice?
I had SSC on my left tonsil in 2006 and base of tongue on the right side in 2012. I got rads only in 2006 and rads and chemo in 2012. I am now almost one year post treatment and have still have partial anemia (low hemoglobin) and severe damage to my swallowing function (epiglotis is stiff and non functional) and my saliva…
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Turmeric?
Stumbled across this article and wondered if anyone has heard of turmeric being beneficial as an adjunct to cisplatin? Link: http://oralcancernews.org/wp/turmeric-makes-chemo-more-effective/?pfstyle=wp
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Katie....you finally added a picture
so we can put a face to the beautiful words, and genuine compassion and encouragement you offer on a daily basis....NICE seeing you, my dear!!! p
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Speech Therapy, finally!
Hey everyone, Tomorrow I finally have my 1st appointment with new speech therapist. They said expect to be there an hour, she will get all info and evalute situation to develop a treatment plan for me. Although I won't be doing another swallow study xray as of yet, they may order a tray and have me swallow to see where we…
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need to move posts to new thread
Please look at posts by "tackstrip" at bottom of thread with subject "Lost My Voice".... you will need to scroll all the way to the bottom of that fairly old thread. Does anyone know how to move them into a more current thread? They may not be seen by those who might want to help since finding them requires scrolling all…
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PET Can update - question
My husband completed his radiation and chemo treatment in December of 2011. He had a terrible time healing and had many set backs. Within the last month he has had a pet scan Pet scan did light up in 2 places 4.0 and d 4.2. One where the original tunor was and other one furhter down in his voice box. Yhe oncologist said he…