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Follow-up/Petscan
Hi all, I'm writing a little follow-up to what I posted a couple weeks ago. We had been 'lurking' here for over 3 years and finally needed to chime- in. Dale had his petscan yesterday and the Doc called late last night to say "ALL CLEAN!!" There was a very small lymph node or salivatory gland under his chin line. They…
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Done with radiation - major meltdown plus questions
My husband is 1 week post radiation. He is still on a liquid diet (but after reading so many posts, we expected this). I had to laugh at him last night becuase he tried to eat a Gold Fish and about threw up at the taste (I'm not being mean, he's a little melodramatic, so his reaction was funny!) But prior to that, he had a…
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can a low grade mucoepidermoid carcinoma recur as high grade?
Hi, I was treated (maxiollectory only) for a low grade mucoepidermoid carcinoma on the hard palate, I had clear margins but reading the pathalogy report it seems that the bone was eroded (i am assuming this is the bone of the hard palate), I have been clear for a long time now and was woundering, 1) can a low grade…
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On day 9 of a common cold - on the down slope
Finished TX June 12th, 2012. 35 rads 6 cisplatin for SCC stage IV tumor in the throat near the epiglottis and had invaded a few lymph nodes. I was always wondering if my body would react differently to a cold or flu (haven't had flu in 25 years) post treatment. Well, a cold feels the same as it always did but it sure did…
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peg tube stitches
Those of you who have peg tubes..did you get stitches at first? they stitched my husbands actual tube to his stomach and it is hanging downward and driving him crazy..it keeps getting caught in his pants..they told us it would be two weeks before they take them out..is that the right thing? the dr said one thing and the…
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Piggybacking on JackFlash22's thread
My ENT wants to do a dilation and I was wondering if someone could tell me what's involved. I can't imagine that sticking a tube down my throat can be anywhere near comfortable. Thanks for some info. Joe
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Five to Thrive
I just received an e-mail about 'Cutting Edge Cancer Research.' I have seen the doctor at a conference with my favorite chef, Rebecca Katz. Short notice: Tonight, Tues. Feb 25 4pm (PST) 7pm (EST). www.w4cs.com Five to Thrive has been very informative to me during this journey.
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A bit apprehensive
I have an appt for day surgery on my throat blockage on Monday, I was told they will look to see why it's blocked and think it's probably rad tissue. I,m told if they can they will stretch my throat. I,m quite excited that I may be able to swallow next week but apprehensive that it may not work. can you swallow straight…
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Nasal problems
I had been having problems with breathing and sinus through my noise for years. Everything would be aright until I went to bed and then about 1am I would wake up because my noise was plugged up and I could not breathe. For someone with dry mouth you all know how that is. A few weeks ago my daughter told me about trying…
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New to board: Coping with Dad's diagnosis
Hi All, I have spent the last few hours reading through everything I could on this site. What a great supportive group you are. My dad was diagnosed with SCC on Labor Day of this past summer. He had a large tumor on the right side of his neck we were told from a lymph node. He did not have the cancer anywhere else and it…
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NPC hearing loss side effect & does IMRT really helps to reduce and prevent side effects?
Hello all NPC survivors. I was recently diagnosed with T2N2Mo and I am glad to have found this forum. I have yet to get any radiation or chemo treatment, but schedule to have it done soon. My concern is about side effects, especially hearing loss during treatment and post - treatment. Therefore, would greatly appreciate if…
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PEG replacement
I go next Monday to get my PEG tube replaced, this will be the first time and the doctor said he will need to pull it out. I told him he better plan to tie my arms down so I don’t knock him out or start running as fast as he can once he puts me in that much pain; so he decided to do my 5 year colonoscopy and while I am…
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Not So Great News Turned Great!!!
The results of the ultra sound and scan have turned up clear!! Sooo happy!!! Now we need to stay this way! Peg tube will come out soon but port will stay in for now. I am praying for those who continue to struggle and fight. Cindy
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Just checking in
As my Dad says when he calls, "just checking". I'm still at St. Joseph's medical center.... since Tuesday night. Had bone scan done. Needle biopsy of right hip. Consult with Rad oncologist. Two rads to large lesion in left side of brain. Feel absolutely weak all afternoons. Don't even want to open eyes. And dizzy. Better…
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treach tube and speach
Hi everyone...just curious if anyone else had gone though speach class? I started alittle bit while in rehab and going to try to go more now that I'm and hopefully during rad treatment.But seem I sound alittle hollow even with treach capped off.Am having trouble with some letters but want to start to make my tounge as…
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PEG Tube Diaper Rash
Lately I been having a lot of problems with the PEG tube becoming sore and red right by the Stoma. I have been trying a lot of different things to clean it up but was not working, the lady at the doctor’s office said try using a diaper rash cream. Well we just happen to have some in the house so I did and I could believe…
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Missed you guys
Hi, I am sorry I have not been around a lot. Just trying to adjust to losing both dad and mom this past year. Me and my kitties have been getting alon pretty good. Spot Cat is dealing with some UTI problems. I have had some changes in my life and may have more. I am seeing a new guy that is sweet and kind. He have known…
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getting ready to start treatment
Hi everyone as I'm nearing the start of my radition treatment am curious if they leave trach in or remove it.Also as I have read here my mouth will become pretty dry will I be able to sip anything with the trach in.During speach she has had me swallow and that's not a problem.The only problem I have is that I move tounge…
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just got my game plan
Well once out of rehab sunday have a meeting on the 27th with radition doctor.As far as I know right now it will be 5 days a week for 7 weeks 10 minutes each day.What can I plan on happening just to prepare myself...
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Floor of the mouth with lung metastasis
Good Evening All, I am new to this site. I've read through many of the discussion threads. But I don't see answers to my question. My husband was diagnosed with floor of the mouth SCC in 2011. He had surgery followed by radiation/chemo x 6 weeks. Shortly thereafter they found and followed several nodules in both lungs.…
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Squamous cell sinus cavity/nose=NEW to site and need support and connection
Hi. I just joined and have been battling aggressive invasive squamous cell ca of the nose/sinus cavity for 2 yrs. Have had 6 surgeries and 33 radiation treatments. Am homebound since last surgery Dec. 2013. I'm having trouble connecting with people. Tried the chat room and couldn't get in. Am alone and scared and really…
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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…