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Update on my freaking out
So last week, my husband was going to see his ENT about a suspicious spot at the back of his mouth. He is 5 months NED after stage 1 tongue cancer treatment. I was freaking out naturally. You all helped me calm down. He had the appointment, and the doc did not think it was cancer, but to be on the safe side, he decided to…
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Looking for tongue reconstruction survivors
Hi. After 12 years of remission my tongue cancer returned with a vengeance in December - two tumors removed, one round of targeted brachy radiation, a new tumor appearing almost monthly. I "changed teams" to University of Chicago - much more satisfied with the doctors and staff there. I went through five weeks of…
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ROLL CALL 2016 - UPDATE 3/1/16 CLOSED, SEE UPDATE
ROLL CALL 2016 Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014). Thank You. First off, please feel free to Enroll (name, town, state, dx) or Check-In whenever you see…
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Update and a few words about HPV+ SCC
I haven't posted in the past few months because dealing with treatments, etc. was pretty draining. For folks who may have missed my few posts last year, I had Stage IV HPV+ SCC in my left tonsil and soft palate in 2012. I was all clear for all scans and exams in that area. In late 2015, I had a persistent cough. When I…
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when you are dropped from a drug trial
Good evening: This is my first post regarding drug trials. My husband, who had stage four metastatic head and neck cancer, joined a phase one drug trial involving Keytruda and incye 02436 at the University of Pennsylvania Abramson Center in February 2016. Within three weeks he was hospitalized and dropped 15-pounds during…
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My radiation journey - Week 5
Well, the **** has hit the fan. As I expected, the dark side of treatments is rearing its ugly head. According to my doctor, I'm doing exceptionally well at this point. May be. But this week started getting difficult. My ferocious appetite has waned. The sores in my mouth coupled with the terrible taste of many foods, is…
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feeling hopeless
Hi everyone my name is william and i have few questions for you guys. 1. It is possible to develop oral cancer through hpv and just months after a possible exposure? ? 2 can someone get medical treatment for cancer despite lack of insurance? ? Recently i visited two ent doctors and both told me that i have hypertrophy on…
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Back home on the Bay Island
Sorry but it will not let me post
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1st post treatment scan results
Hey everyone! Got the results of my first PET scan post treatment and my results were as good as could be expected. NED, yay! thanks board for all your help and support. i know it's only the first but it is a relief for now. Now to get this darn tube out, lol.
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Mucous, Mucous (and did I mention Mucous)
17th of 33 rads and my 4th of 6 Cisplatin infusions are on my calendar for tomorrow. That being said, the overal mucous development in my throat has reached epic levels. I seem to spit mucous all day long. I rinse with salt/baking soda solution about every hour. I swish/swallow aloe vera juice with L-Glutamine 3 times a…
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Hearing loss...
I posted another topic about neuropathy and now would like to know about your experiences with hearing loss. I did two cisplatins and the third was carboplatin because the hearing loss was fairly dramatic after the two cisplatins. Seven months out my hearing seems to be getting worse. Not dramatically but very gradually. I…
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Received Possible First NED
Hi Everyone, Lisa here, Going on 6 wk post-treatment. Cancer located left tonsil area, HPV+. Saw my ENT last week for a scope of the mouth and throat. Pictures were taken. Compared to the "Before" pictures taken in January, the mass is no longer raised and is systemical to surrounding healthy tissue. My ENT pronounced it a…
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Peg tube
Had peg tube inserted Friday. Been in the hospital since. Can't keep anything down. Also in some pain. Taking me for a scan in a little while. For those that have or had them...any suggestions? Thanks, Joanne
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Hair Today.....maybe Gone Tomorrow
Hi again, Before I started this journey I made a decision to cut my longer/short haircut shorter so I would be prepared in case I did lose my hair due to chemo. If it didn't, it would grow back,....... except it's NOT growing longer. In 2 1/2 months besides turning salt and pepper grey and losing my back hairline from the…
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Inner and outer lip sores
For those who might have had these from radiation during treatment, what did you use? I tried Aquaphor but it does not help. Is there something medicated to use for the lips? The side of my lip is cracking also and painful. I'm using my soda rinse religiously, and also the glutamine. Cancer sucks and so does the treatment!
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Introduction (Stage IVA Tonsil Cancer)
Hello. First off let me say this site and the Head & Neck discussion board is a wonderful tool to use for a journey through this disease. I appreciate all the users that I have seen on this board and their helpful experiences. I am a 54 year old male and I was diagnosed with Tonsil Cancer on March 1, 2016; and was…
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Introduction and a couple of questions
Greetings all. My name is Gregg and I live in Raleigh. I stumbled upon CSN while searching around for some recovery and after treatment topics on the web. I was diagonosed in August 2015 with stage IV squamous on base of toungue and spread to lymph nodes. Was fortunate enough to get into the de-intensified treatment study…
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Recovery
Hi everyone. It has been so long since I visited that I had to re- register with a new name. I have forgotten all the abbreviations and buzz words, but I had squamous cell stage 3 cancerous lymph on right side of neck, primary site unknown. Had right side neck dissection, feeding tube, Erbitux (sp?) chemo and full…
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New Treatment for head and neck cancer
http://m.ndtv.com/health/australian-researchers-find-new-treatment-for-throat-cancer-1216466
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Any tongue cancer patients here?
I'm almost 2 months out from surgery. Not a lot of time but my noticeable speech impediment bothers me. My surgery involved a smaller tumor on the left side, which made my tongue tighter while pulling to the left. Has anyone experienced a similar surgery and saw their speech improve with time? I honestly don't see how it…
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L Glutamine Help
Almost 3 months out of Rad/Chemo treatments. Mouth burning (Burning Mouth Syndrone) mostly back of tongue/ upper-throat, and extremely DRY Mouth. Have read on posts about taking L Glutamine during treatment. Does it still work post-treatment? If so, dosage and powder or pill form the best. Both conditions are driving me…
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And speaking of steak...what foods do you miss the most?
Steak is not a big thing for me...but I really miss fried chicken, pot roast, weiner schnitzel, BBQ...so many delicious meat and chicken dishes I used to enjoy. Used to love rice but it just swims around in my mouth now. Breads, pastries, cakes, cookies, danish and all those yummy desserts turn to glue in my mouth and…
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Hair loss near radiation site
This is especially for the ladies. If you had hair loss near irradiated area, did it grow back once treatment stopped? Mine is coming out in clumps and it's freaking me out.
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Treatment Update - ding ding, round 2
A little overdue but thought I'd share an update with you all. Deep into treatment now which consists of weekly infusions of Carboplatin. Fair to say this is not so much fun and I have 6 more to go. The main complaint I have is one of fatigue. I'm more or less wasted after chemo for 5 days. Nausea also comes and goes but…
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Ear pain
My ear started bothering me this week which is my third week. Feels like a bubble some times while other times it hurts like earache. PA told me to try Sudafed. Anyone else had this problem? Did it last through to the end? Got worse?
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Radiation fibrosis syndrome
I heard that vitamin E can reduce the cramping. Any truth to that? I'm 4 years into remission but the lingering after effects won't let go. Help.
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Aloe Juice
So I start my rads tomorrow and my nurse told me to get organic aloe juice and drink 2 oz before and after radiation. Just wondering if anyone here has tried this and if you felt it made a difference. Thanks , Shirley
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MuGuard
Finally got the package. I can now see why MDA does not push this product. It's been a hassle to get things sorted out for the last two weeks, and it wasn't on on my doctor's side. Anyway, used the first dose. It BURNS like no other at first, but hoping it will help protect those sores so I can eat with less pain. For…
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Peg tube
I'm not sure if this posted. I had my PEG tube inserted Friday and have been in the hospital since. I can keep anything down and still in some pain. They are taking me for a scan in a little while. Any suggestions. Thanks, Joanne
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My radiation journey - Week 4
Well, I just completed week 4. Nineteen treatments of 33 are in the books. Here is a breakdown of what's happening: Food tastes horrible. I still have a strong appetite so I'm eating normally. But each day food tastes worse and worse. I can understand why some folks give up eating. Mouth sores are still manageable with no…