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Newly diagnosed
My husband was diagnosed on August 11th with Metastatic Squmaous Cell Carcinoma of neck with unknown primary. He does not smoke or drink or use any tobacco products so I think it may be HPV, although we haven't got that far yet. He is suppose to have a scope to take multiple biopsies in hopes of finding the primary and…
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4 years yesterday
Hi all: Yesterday marked 4 years of Charlie's passing and home going. It's still rough being without him of course. I always read over the cards and letters and look at the book at all who came and then watch the dvd the funeral home did of the pictures. Had to stay late at school last nite for curriculum nite for all of 2…
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Prayers for son
I know it isn't cancer until they say it is cancer but after what I have been through I can't help but worry. That said I want to ask for prayers for my son Lonnie. He started having jaw pain on his left side near the ear (where Jim's pain started) and thought it was his wisdom teeth. Dentist said no, maybe he grinds teeth…
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HBOT here I come! Update number 1
I have my first appointment next Monday. I don't know how long it will take to get set up. Local ENT is hopeful that it will help my ear problems and when he looked in my mouth today he said back tooth is loose and 'fissure' goes right up the tooth to the sinus. Luckily my husband likes to read and recently downloaded some…
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Canker sore becomes Cancer after PET scan
In October of last year I had a PET scan because of a high CEA blood test reading. I had a canker sore at the time. Within days I had an extremely sore tongue. Saw my regular doctor, referred to an ENT, saw him several times, medicine prescribed, nothing helped. By January 2014 I was so weary of hurting and nothing…
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Good Vibes needed for Steve
Steve (hawk711) is having a jaw resecting (left side) this coming Tuesday, August 26. He and I have been in fairly regular contact leading up to and after my own same procedure in early May. Please send him your good vibes (in whatever form you generate them) on the 26th, and into the next several weeks afterwards, so that…
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checking in
Hey everyone, Been crazy here trying to get ready for my son's upcoming wedding. Aug. 30th. So excited to be a part of it ! My brother is doing pretty good after his tx's. About 3 mo's out. (almost) He's lost around 65 lbs though. They maybe pulled the peg a bit too soon. Doing the supp's is helping keep his labs in order…
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Carboplatin and 5-fu
Has anyone had the bad luck of having a second go round of carbo and 5-fu? Had rads and chemo Dec 2012-Jan 2013. Since then I was on avastin for mets to lungs for kidney cancer but this was changed to erbitux this past February when a biopsy showed it was squamous cell. Last Pet scan showed it had spread to left 6th rib…
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Still NED!
15 months after treatment and I got the all clear. NED! Side effects? Well, that's another story but tolerable with meds. The thing that I need to watch is the heart. I had two heart attacks, bypass surgey and stents prior to cancer treatment. My RO is concerned about the effects of chemo and rads on my arteries. I eat…
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Treatment options... Ideas??
Hi guys so I'm in New Zealand and feel that we have limited treatment options here... I have just had 5 days of radiation to the brain and that's all the docs want to do. The two tumours are inoperable and they are just hoping to slow growth with the radiation. gamma knife has come to my attention which I am going to look…
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Rang the bell today...
...well, my doorbell anyway...they don't have a bell tradition where I am taking treatment so today was the last day of tx and went home and rang my own bell. Kept the mask, not sure why, I suppose I'll resolve that later. I know from all of you that the next couple of weeks are often the worst so I hope I can cope ok.…
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Jaw replacement and osteoradionecrosis
first I really appreciate each if you. Here's my new situation I'd like to know if there is anyone out there going thru this. 3 years ago I had segmented mandilbectomy, fibula free flab to reconstruct jaw bone. All teeth removed and implants put in. Six weeks radiation. no reoccurrence of scc so far. I was told last week…
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One year check with the surgeon...
I saw the radiologist at my one year mark (June 21) and he said all was clear, so today was my one year check with the surgeon. He was VERY PLEASED with my progress and said "see ya in 4 months". Cancer free. Music to my ears. For those of you just starting your journey...be hopeful, have faith and lean on the support…
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Just Diagnosed
This is all brand new. I received my diagnosis today. I've suspected for 3 months that this was cancer. I was told it was a harmless Brachial Cleft Cyst but when the surgeon removed it the pathology said Metastatic Squamous Cell Carcinoma. He pulled a piece of tonsil and the lymph node near the cyst/necrotic lymph node (?)…
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went to doc yesterday.
went to my oncologist yesterday for meds. she told me she does not want me to have surgery on the 25th. her and her partner both said to wait three more weeks so they can mesure the two spots on my rite lung the are 3centermeters now. if they grow in this this three weeks wait and see, that there is no sence in haveing to…
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Lip sore
had two appts today, first one my monthly checkup. He said there was no cancer left in my neck. The second was a biopsy on my lip for a crusty red sore that never heals. I've had it for months and twice had it frozen but it kept coming back. The doc said to be safe they would send off a biopsy. It was a strange sore like a…
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MOVING
Tomorrow will be four months since Jim died. Seems like yesterday. The closing on the condo is Tuesday so I am beginning to pack up. Jim had his own room the last few years. He kept his books, clothes mementoes, etc. in there. My sister offered to pack it for me but my son wants to do it. We were in there Friday and I was…
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Skiffin - Barium Swallow Test Scheduled
Just a quick info.... I'm scheduled to go in for the above on Tuesday..., hopefully to determine the source of the leak... (which I'm certain is the connection of my stomach to my intestinal tract). I talked to my onco, whom is in the same building and originally had me see someone about the cyst on my pancreas.... She…
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What Type PEG Tube are you using
What type of PEG are you all using, I have a low profile tube and from the day they put it in it leaks For everyone who has a PEG Tubes what type do you have. Two months ago I got a replacement Low Profile PEG Tube and all it does is leaks. I can eat all my Norman food with no problems but as soon as I drink water it…
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Another Update
Hi all: Basketcase checking in here and boy have I been a basketcase this week. First all, let me update you on Steve (bff's husband) Told y'all MRI showed brain lesions all but gone only a whisper of a lesion. Well the pet scan was good too no new problems; have dismissed him for 3 months and now talking in terms of long…
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1 year out, myoclonic jerks. Anyone else?
Rob went to ENT and Radiation Oncologist Monday. NED still. Woo hoo. He has been suffering from myoclonic jerks for about a month. Only at rest at the end of the day. Docs are not sure why. Has anyone else had these problems, one year out? He will take the myoclonus over the cancer anyday. Sandy
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Have Not Forgotten You, My Friends
Hope all of you are still beating the crummy beast. Please be strong, but gentle with yourselves. I have not left Kentucky yet as I have been in the hospita for 6 days with a mysterious lung infection. Started 2 weeks ago with sore throat which progressed to acute bronchitis & despite meds became pneumonia. A CT was…
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possible new problem_very strange-update
Hello everyone. I did not post for awhile. My mom is NED for 2.5 years now, as some of you may know she had recurrence 3 times and total of 4 surgeries. Today she noticed something on her bottom gum. She does not currently have any bottom teeth as she had to take them out. She had them removed in may. Anyhow something is…
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Lost most of my taste, sorta.
I never had any Chemo or Rad, but I lost most of tast on my tounge. I can tast some salt but that's it and not like it should be. I didn't realize it because when I swallow I do have tast, just not on my tounge until then. Yesterday I had my orange juice and cream of chicken soup [as everyday] and I noticed if I just hold…
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just want to say thank you!
Although we are not totally over healing from the treatments..we are getting there...getting the feeding tube out will be nice...i just wanted to say thanks..thanks to all of you who posted and encouraged me thru all of this..its nice to come on here and read that so many went thru the same thing and can relate and also…
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i hate this
Hello all, I know you all got things to worry about. But I need to let things out of my system! I have finished my 8th rads session today. I'm feeling weird, nausea is killing me and the weird constant taste & breath like metal or something like that. Starting to loose interest in food, but I'm trying to eat 2 times a day,…
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Thank God
Debbie got ahold of me and mentioned that Shawn was asking about me (I replied to your thread btw), but I wanted to just let everyone know I'm continously praying for you and thinking of you all although I've been a "no show" for a few months now. I'm still so greatful for all the advice I received while going through one…
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One year and counting. .
Hi All. For those of you who remember me, my brother has reached his 12 month post treatment. He finally got his peg tube removed a couple of weeks ago. He's doing alright, I guess. Unfortunately, his taste has still not rebounded. If you remember, my brother is trusting his ENT to find any recurrences. He has only had one…
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MRI Results in
Will my doctor filially got back from Vacation and called with the results of the MRI. And it is showing nothing that we did not know already, she is even more confused now then she was before. She is trying to get me to see another H&N doctor in New Orleans who deals with the wearied oh like me. In the mean time the…
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It's a beautiful day
Sometimes just nice to notice that. Sorry for off-topic. Hugs and smiles x x x