Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Head and Neck Cancer

Archives for May 2016

Going, going. GONE!
In the vein of "kids, don't try this at home..." my husband finally removed his PEG tube - himself. Note: he is a doctor and kept telling me he could do it and it would be easy. I know KDot (Karen), who is a nurse, also removed hers. Are you guys pioneer men and women or what?! In any case I am thrilled that he finally has…
Normal?
Someone else just posted about tongue discomfort/pain they are having post surgery. I feel the same way but don't know what "normal" is for the situation. My tongue is driving me absolutely nuts. It's misshapen, irritated and sometimes there is a little "pulling" feeling when I move it a certain way. After surgery, there…
Port is gone!
Ok, so gall bladder out....check, chemoport out....check, PEG tube out....uh, almost. Husband is no longer using it for the last 10 days, so basically, it can come out. He's managed to get back to his pre-diagnosis weight of 158 lbs. also. He keeps saying, he'll just take it out himself (like KDot- Karen). That would be…
New to Forum but can't seem to get my messages posted. Any help?
Lets see if this gets posted
nausea returned
My husband finished his 32 rads and 6 wks of Cisplatin on april 5 for cancer to his tonsil. Just prior to treatments he underwent 2 surgeries, one to remove tonsil mass and then partial neck disection for lymph nodes. About 3 wks into treatment he started on Prilosec and Reglan and Marinol to control nausea (among other…
Decaying Teeth and Treatment Options - Insurance Paid 80% Medical
Good Afternoon All..I'm 34 years old now, I was 24 at time of diagnosis... I'm new here, so I'll give a back story...April 2005, I was told I had squamous cell carcinoma non melanoma, it was located in my throat, it was a golf ball size tumor on the right side, the doc went in removed it, sent me home, and a few days later…
Burning Sore Mouth & Tongue Now HBO
its been quite some time since I last posted. I'm back with an update and hoping to find others that can relate to my experience. First, and most importantly, I am now 21 month NED from tongue cancer. What a journey and I'd like to thank everyone for their incredible support. I'm feeling much better, but I continue to have…
NED Update
Hi, If anyone remembers I had a glowing subpectoral lymph node at my three months scan. Not sure if I posted here but 6 weeks later (two weeks ago) my CT was negative. I really am NED :) I elected to keep my port until my 6 month scan is negative. I guess its kind of a safety thing for me. Still having dry mouth of course.…
I'm So Lost
I don't know if this has anything to do with my tongue cancer. Maybe it does some because at the time I was diagnosed, I was planning a big change in my life. I was planning on moving out of state without my husband. I did make the move finally a week ago tomorrow and I'm finding myself scared, confused and asking myself…
Freaking Out
Ok, I had a squamous cell tumor removed from my tongue in 2001 and neck dissection, radiation; and a recurrence on neck (other side, tumor removed, neck dissection, chemo and radiation) in 2003. This was supposed to be in my past. Five months ago my dentist identified a new lesion, removed New Years Eve, brachy radiation…
Any recommendations for a mucus suction machine?
Hello all, New member here. I am writing in regards to my 75 year old father who was diagnosed with head and neck cancer (tonsil) late last year. He went through the typical course of radiation and erbitux for 8 weeks. His last treatment was the end of February and he seemed to be doing a lot better however a few weeks…
Extra cans of Osmolite 1.5
My hubby has long since been off the tube, but we have some leftover Osmolite 1.5 for anyone who is interested. We have 12 cans that expire July 2016 and 24 cans that expire Sept 2016. You can have it no charge, just pay the shipping. I'm not sure how that would work, though. Feel free to message me.
Changing jobs after cancer
Good morning all, Now that my life has changed, I was pondering my prospects for future employment should I need it. Having tongue surgery has left me with a noticeable speech impediment. My current job does not require much talking and I work for a solid company, luckily. But there is always the possibility of changing…
Re-occurance of tongue cancer
Hi All, This is Manoj from India, i was diagnoised with SCC in Sep'13 just before my 35th birthday on right side of the tongue - went through surgery with flap replacement. Post surgery went through 50gys of radiation. went through multiple MRI and scans over last 31 months with no major issues apart from not able to eat…
5 Years and so far, so good.
I was diagnosed with cancer of the Vocal chords in 2011. In fact my ENT orginally said "It's either warts or canncer. And you'd better hope it is Cancer, that we can treat while warts keep coming back. Well it's now 5 years later and my ENT is just about to cut me loose. I only had 34 radiation treatments. No chemo. After…
Squamous Cell Carcinoma
Hello! I am new to the site and am seeking some advice and encouragment. My mother, age 74, was recently diagnosed with squamous cell carcinoma of the tongue. She was not a candidate for robotic laser surgery as they determined it would be too extensive for her. She began daily radiation treatments two weeks ago, has a…
3 years minus 1 month
June 4, 2013 - the last day of treatment. It's been rare days during the past three years when concern about recurrence flitted and danced across the conscious - not all that surprising when one possesses ultimate confidence in the team of doctors, their collective, boundless expertise, and the best treatment plan…
Cetuximab
So I got fitted for my radiation mask. Thank God I'm not claustrophobic! I don't how those folks deal with that confinement. Anyway, my radiologist says I'm on the fence in terms of needing chemo. So she gave me information on Cetuximab as clinical trial, vs. regular chemo. She says it's less toxic. Has anyone been on this…
Website post reformatting
Is driving me crazy. Anyone else having problems or is it just my ineptitude?
Lurk no more
Hi - it is unfortunate to have to meet you all this way - I would it rather have been on the street or in a wonderful restaurant somewhere. I have been lurking around reading many words of wisdom for a few weeks, trying different suggestions, reading great blogs (thank you Surfer). My husband has just finished…

Head and Neck Cancer

Discussion List