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Mr NED and Mr Not
Hi Folks, At 10 months out, my mouth and throat look as pink as Pepto Bismol. Things have totally healed and accounts for my swallow improving. It's still chew, chew, sip, swallow but improved. I'm even up to eating the one pepper dishes at the Thai restaurant :) Getting close to the 1 year post Tx mark and I'm still NED.…
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THANK YOU ALL!
Hi all that responded. When I went to bed yesterday am(night owl) I was discouraged, as I hadn't had any responses. When I just checked now, I was blown away with all of the people that wrote to me with compassion/welcome and support. I now feel like I have a family and am not alone. Since I can only sleep in day; it…
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R.I.P. ToBeGolden
Friends, I just got off the phone with Rick’s wife Arlene and she said Rick Passed away in October of last year. That was just a short time since his last post in September. I told her how special a member of the H&N forum he was and how much we loved his participation and I spoke of how I loved the stories of Peanut his…
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Is it safe to drink sodas?
With post treatment for NPC, would it be safe to drink sodas and eating fast food like McDonald? PM
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Dental issues post tx
Hi Jude, I did not realize I was replying to post in the roll call thread. Repy to this post of yours. ORN? ORN.... sounds like an acronym for oral radiation necrosis, or possibly oseos radiation necrosis??? He had a level 7 radiation. Ruben had two lower molars extracted, one on each side, prior to radiation. The right…
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Anyone out there that has lost their nose/sinus due to cancer surgery?
Hi all! Just joined and thanks so much for your warm welcome. Wanted to know if their is anyone out there that has lost their nose/sinus area to cancer surgery and has had to be left unreconstructed due to previous recurrences. Have to wait 2 yrs. now after last surg. Dec. 19 and area has to be cleaned/packed with surg.…
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Low Grade MEC, long term survival rate
Hi, Is there any evidence about long term survival of low grade MEC? I have looked online and most reports are about 5 or 10 years, but is there documented eveidence that people survive say 20 or 30 years without recurrence. Thanks,
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in hospital now
Aalthough the nursing staff and room are very nice, this has been a total nightmare. Just horrible yesterday. I'm still recovering from it. Short story. Basically put off my biopsy, food and meds to make me less dizzy missed first two meals. Only had button to push for pain which made me dizzier Was told more than once…
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More prayers please.
I am in need of more prayers, and need I say, pray for Jim. FRiday Jim started to cough up small specs of blood. Saturday it was about a teaspoon of blood. The on call nurse came by to check. She said it was from the cancer. His heart rate has also been in the 100s but they don't seem to be worried. She said she could hear…
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Feeling selfish and guilty
I was so excited when I first found this forum. Now I come here feeling selfish, guilty, and scared to continue reading. I have always been a person who likes to research and be prepared for all possibilities. Coming here and asking questions made me feel better, like I was preparing in some way for what was to come.…
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An interesting read (article) regarding submandibular gland transfer for the prevention of dry mouth
Can be found at: http://7thspace.com/headlines/453155/clinical_observation_of_submandibular_gland_transfer_for_the_prevention_of_xerostomia_after_radiotherapy_for_nasopharyngeal_carcinoma_a_prospective_randomized_controlled_study_of_32_cases.html The essence of the article: The aim of this study was to evaluate the…
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I'm here in hospital now!
I'm finally here. Got in about 8:00 pm. Oncology dept. Even a private room. Wow. Got my Kindle fire online. Finally some real care. I've been trying to nurse my disabled sick self for 24 days at home. With the constant help from husband John....when not working and keeping up our home, pets, elderly mom, etc. I've been so…
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Proton therapy side effects?
Hi all, Err...I need educating with a big thick cancer book around the head. I'm new to this cancer business and I could really do with some info. Here's the deal...I have advanced esthesioneuroblastoma with three mets to spine and hip. Anyhoo it's HEWUGE and they want to take it out and then do proton radiation with chemo…
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Honey
2014-02-19 When I first came onto the site before I started radiotherapy I mentioned the healing powers of Manuka honey. Before I started treatment I had a spoonful of this honey every day and I didn,t get ulcers or too much soreness in my mouth. Today on the local news they are using honey in hospital on dressings for…
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Ned
I had my two year CT scan and it is NED....All is good! Ann
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Secondary lactase deficiency
Hi all, I have a question: has anyone experience of this after Cisplatin? I have some symptoms that are perplexing my team. Basically I had about 15 rounds of Cisplatin ending in December 2013.(plus radiation) About six weeks ago I began to experience what felt like a sickness bug, lots of flatulence but no vomiting or…
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Asking For Opinions
Hello All, Just looking for opinions and/or our resident insurance guru, if we have one. As many others have done, my former company has decided to no longer be directly involved with supplemental health insurance for those of us on Medicare. I have received & tried to interpret(Ha, Ha!) all the new info. as well as…
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Neti Pot
My second radiation was for SCC of the soft palate. The radiation field to treat this cancer was high enough it encompassed my maxillary sinuses and lacrimal apparatus. Toward the end of treatment both my nose and eyes were absolutely streaming. Although my eyes impoved quickly after treatment ended, I continued to have…
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NED
Just to quickly report a [1 year and 4 months after radiation and 1 year after last (chemo) treatment] follow-up with my radiation oncologist. He scoped my nasopharynx (primary was NPC), throat, etc. and there was no macroscopic sign of C. In a nutshell I am doing great, although recovering after a common cold. I tend to…
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Great and Not So Great News
Saw the ENT today for PET results. The great news...the original tumor is gone and affected lymph nodes all look good. The not so great news is that he has a new growth "neoplasm" on or in his thyroid that was not there before. So he has an ultrasound scheduled in the morning and a needle biopsy scheduled Wednesday…
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unknown hardest part right now
Still waiting to be hospitalized on Tuesday for tests. Bone scan, lung biopsy, and arrange with new rad DR for rad to 2 brain lesions.( My previous rad has retired.) Shock is wearing off. Anxious for action plan. Fearful of any more bad news possibly to come. Thank goodness I have this group! Vicki
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Checking In, Clear Scans
Hi Everyone Haven't been on in a while, just thought I would check in and say hello. I live near Liverpool in the UK and had mucoepidermoid carcinoma back in 2011, my doctor said it was a strange presentation with a neck lump that was mostly fluid with a few cancer cells, but no primary has ever been found, low grade.…
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Unofficial scan results
Have had 2 sessions of ebitux and taxol (6 weeks) and had a CT scan this morning to see if it was working on my recurrence. The nurse told me I would not get results until Thursday but when I had the scan they told me the doctor would have in hand by lunch today. I waited til 2pm and called. The doctor had the written…
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NPC - treatment done!
HI All, I posted on here around September last year hoping for advice on how to make my mom's NPC Stage 4 (only locally advanced) treatment better. I've used all the wonderful tips that people have given and she has completed treatment! She did 35 rads and was only able to do 1 session of adjuvent chemo as she developed a…
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its been awhile-2 years since last recurrance
Hello everyone, I dont post much but I read almost everyday. On march 1st it will be 2 years since my moms last surgery. I am so greatfull becauce she really went throuh a lot and I believe its Gods miracle that she is here and well. For those who know my moms story: since nov of 2010 she had tonsil surgery with left neck…
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still waiting
Still waiting for a call for available hospital bed. Doctor's Office left us hanging for hours with out a return call. Husband has been following up. Feels like they are not giving good service. Putting us off. I've been so very sick in bed for weeks. We do what they say and get the short end Not happy. Scared and nervous.…
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anyone need Boost/liquid supplements in the toronto area?
My mom is having her feeding tube taken out this month and won't need these anymore. There's still quite a bit left for anyone who needs it and lives in the Toronto area, let me know!
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1st pet scan after treatment this week. Prayers for my father please!
I am so nervous its crazy! I pray that it was all worth it! Thank you all for the amazing support!
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postive first doctor visit
Just got back from my first doctor appointmentHe told everything they and the results.Took alomost 1/2 of tounge 80 lymph nodes and everything show they got the cancer.Will need radiation but no cemo.Will need to set up a portable sucking machine for home and he left the teach in but did cap it.Not sure when that will come…
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comfort from group 4:23am
Just a stop in to feel the comfort of my group's presence while awake at 4:30A.M.