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Diagnosis not good
Have just seen my specialist, my tongue cancer is back but also lung cancer that is non-curable , have been told I could survive for 9 to 12 months, have to undergo 6 courses of chemo cisplatin and 5 FU, has any body had this and what is it like thanks mike
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Anyone have pain a week after the feeding tube was out?
I do not know if this is normal, but it feels like a pulling, stabbing pain when I reach up or accross. It is wierd as I was sore for only 2 days after having the g-tube out last Monday, and then fine until Sunday when wow the pain brought me to my knees a couple of times. I do not know if it is musclular or what but it…
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Is this normal? Or possibly the new normal ;)
Hi friends! Pat has been out of radiation now for about a month and a half. He seemed to be doing remarkably well, almost, dare I say... finding a "new normal", until yesterday . Starting yesterday, he says he feels like he's just coming out of rads again. He is nauseas, very low energy, drainage...everything he dealt with…
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My neck is shredding
I'm half way through treatment, which means I have 19 rads to go and 3 chemos. Through a batch of different things, I had no rads for all of last week, but I kept on cooking anyway. Last Monday, I had a normal neck. Today I have a neck that has lost a lot of skin, it's shredding, the skin is coming off and it hurts a…
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General Information for ROLL CALL.
Please do not enroll or update your status in this thread. Please update or enroll in the ROLL CALL 2013 THREAD. THANK YOU. It is provided for information only. We started Roll Call a few years ago. It is a voluntary enrollment. H+N patients have had a very high survival rate and the enrollment/reporting would provide…
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ROLL CALL 2014
We survived and are into the year 2014. We had 124 folks who enrolled or checked back in. There were 46 who failed to return and their names have been transferred to the MIA listing. Enrollment is voluntary and is separate from the date you joined the forum. Thank you for enrolling. Please enroll or update your status.…
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Jim update and fishing news
Jim continues to lose energy and his breathing is declining as well. He now gets short of breath and wheezes, especially at night. The cold weather has kept him from fishing which depresses him. He was able to go these last two mornings so his spirits are up and he is smiling. We go to the oncologist on Tuesday afternoon.…
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Peg Tube formulas
Radiation and chemotherapy is over but still getting strong nausea that results in throwing up at least once a day. Spoke to oncologist and they said chemo is out of system so it can't be chemo. Then what is it? Been on peg tube from July, still can't swallow, working with therapist but gets exteme nausea which prevents me…
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One year jitters
Well I am getting ready for my one year go round. Next week I start off by seeing my radiation doc, then make the appointment for the scan, then the ENT AND AFTER ALL that THE DENTIST. Well it's been a year and this is where I am at 1- voice is raspy and still can't tolerate very cold weather as throat gets sore easily 2-…
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Checking in 14 months post treatment.
Hey Freinds, Just checking in 14 months post treatment, adjusting to my new normal, still struggling with taste and swallow, hearing, and PTSD, but definately feeling better over all. I lurk on here pretty regular but only post when I feel I have something to add. Trying to get where I don't think about cancer every minute…
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Neuropathy
I'm over 4 months done with chemo/rad. From time to time and today ALL day my feet will tingle. It doesn't hurt and I can walk just feel weird like they are falling asleep. I remember being warned about neuropathy. We were mostly worried about my hands because I play guitar. ANy experience with this and does it eventually…
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Past Posts
A few weeks ago someone shared the name of a protien drink their doc recommended. It wasn't the usuals such as Ensure, Boost, or the like. Also, a while back, someone said they were using a Sensodyne remineralizing toothpaste that could not be ordered from the US. I have been searching and searching the forums for these 2…
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Dental check
Had onc team dental check this week. the dentist didn,t like the scarring and deformed lip that I,m continuously biting. he,s getting a second opinion from his dental surgeon. The only thing he could do to help to stop the biting is to take the back teeth out. I,m not chewing or swallowing still (blockage in throat) but…
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Happy to Hear That I Have a STD - We Now Know the Source
I posted this on my personal blog, thought you folks might have comments on it (sorry for the length): Got a call from my ENT Doctor giving me the laboratory results from the biopsy they took during my surgery. He confirmed that the source of my cancer is the HPV-16 virus. Why is this good news? Because this particular…
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Day 1 of 2nd go round
Had my CT scan and Hohn cathether, instead of port, put in yesterday. Showed up for 7 hour chemo today but the back-up doctor was nearly 2 hours late! We had 10 inches of snow 3 days ago but roads good enough for her kid's school to be in session today. She claimed her 15 minute trip, to drop off kids, took nearly 2 hours.…
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First Bite Syndrome
I am curious if anybody else has experienced this or knows anything about it. Ever since my Extended Radical Neck Dissection surgery in December, I have been experiencing First Bite Syndrome. It involves the first one or two bites of food at every meal, which triggers an intense, almost painful, sensation in the lower back…
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Trach and treatment update
Had trache on Monday. They also did diagnostic scopethreat throat and esophagus. Cancer board metyesterday and the doc and his team came by last night. Surgery is the best treatment. Voice box comes out. Lower throat comes out. Upper esophagus comesan out and is rebuilt from forearm skin flap. Nearby lymph nodes come out.…
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Adxs11-001 clinical trial. Anyone done this?
Hi all, I am from the gyn boards. I have cervical cancer. I was wondering if anyone on the head and neck boards have taken part in the clinical trial using adxs11-001. It is a theraputic HPV vaccine and since cervical cancer and some head and neck cancers are a result of this virus, I thought maybe someone here has taken…
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getting ready for tounge surgey
I also am due for surgery on I also am due for surgery on Jan 30th.But on the 16th they are doing an exploratory operation .I had a petscan and just had cat scan also.Was seen by my ent doctor and he referred to a surgen that did wanted the cat and wants to the exploratory which I'm not sure why.He did talk about a trac…
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Squamous Cell in the left Tonsil(P-16 Positive) and left Lymph Node
Hello everyone, As the title says, just diagnosed with cancer and they are getting ready to treat me at OHSU and the Portland Oregon VA. I've been told I will receive thirty five radiation treatments and three chemo treatments. Side effects include loss of saliva gland on left side of mouth, potential loss of some or all…
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One Year Anniversary
Happy New Year all. Whilst heading to work today I realised it is exactly one year today that I was diagnosed with cancer. Time sure does fly however I would argue it is hardly fun. However I am now 8 months post treatment and most things are coming back online albeit slowly. As so often stressed on this board, recovery is…
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Update
Yesterday, I had my 2 year exam and scope..very happy to report that my Dr said, I have healed perfectly and no sign of tumors. He said with my type cancer, epiglottis, usually if a reoccurance is going to happen, it happens in the first 2 years. I am 2 years, 2 months out. I will continue to exercise my neck and voice and…
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Is there a way
is there a way for me to search past posts to find a specific post? i'm looking for a post that stated I found a bump on my tongue. I need to know when I found it so I can know how long I've had it since it is still on my tounge. I appreciate all replies. thank you in advance. dj
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Vocal cord problem (after partial neck dissection)
Hello all!! I still come here from time to time to read how everyone is doing. I still see some old names of wonderful people who are always here for support and help. Bless you all!! Well, my Dad is doing ok, he had his rad/onc doctor check-up today. He had partial neck dissection (15 nodec removed - all clear) back in…
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PEG tube out today
Finally I got my G tube taken out today. They deflated the balloon and simply pulled the tube out. Just a little discomfort at the end when the deflated balloon exited the stoma. I am very happy. Now I can go about eating food with more room in the stomach and exercise with no hindrance. The nurse said it should heal up…
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Update On My Daughter, Johnnybegood
Today she forged her way to Louisville for results of her mid Dec. CT. Unfortunately, the news was worse than expected. As some of you may remember, she was hospitalized several weeks ago for undetermined bleeding & taken off chemo at that time. We expected minute growth in her lung tumos, but they have grown by at least a…
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Swollen Larynx
My hubby is 7 weeks post treatment - epiglottis with 2 lymphs - his voice is getting hoarse, & it feels like the larynx is now swollen. Food is also getting stuck in his throat, which hasn't happened since before treatment began. Hoping this is effects from rads. He has an ENT appt tomorrow, so we'll find out for sure. His…
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Sore tongue doesn't begin to say it.
I have toncil cancer with at least 2 lymph nodes affected. I am getting 8 doses of chemo and 40 of radiation. I have had 5 chemo treatments and around 18 radiation treatments, so I am in my fifth week starting Monday. My tongue is killing me! Thanks to the radiation, I have thrush and my whole mouth is a sewer. I will lose…
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Sciffin the Poacher LOL
Hey man hows it going was told to say hi so here I am Hi. Hope this finds you and family (dog included of course) LOL. Looks like I am in the fray again but what the hey
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Trach tomorrow
Ended up in the ER on Thursday. Breathing problems. Knew it was going to be a bad day when I woke up able to talk Still in hospital. Tomorrow is a diagnostic scope of throat and esophagus to see where the tumor is and biopsies to check the margins. And also a trach. The tumor is behind the vocal cord and is messing up my…