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Head and Neck Cancer

Anyone else mad as hell about what the docs didn’t tell us??
I’ll start right off by saying I am deeply grateful to both my surgeon and my oncologist and all the medical professionals who saved my life and continue to monitor my cancer. However, I gotta say that I have a lot of anger about the lack of information which was provided prior to surgery and radiation regarding the…
The Biggest Loser?
So sad reading about the newbies suffering with mouth sores, pain and weight loss...brings it all back. I'm a year out now and life is very much improved. How much weight did you lose in total during the first year/healing process? I'm 5'4", started out around 140 (a weight I was comfortable with) and dropped to 105 at my…
Surgery included bone from leg placed in jaw
hi I had bone put in my jaw 3/2014. Friday 5/27/16 surgical proceedure schedule to remove hardware that was used as support of bone replacement. Anyone relate?
Introduction
Hello everybody.... I am new in here and unfamiliar with the protocol. I thought I'd start here with an introduction. I'm Sam from Columbia, SC (actually relocated here in 2002 from NY). I had stage 4 head and neck cancer, originally diagnosed Oct 2015. Travelled to NYC for surgery/treatment at Memorial Sloan Kettering and…
Burning & Stinging when Eating
Hi, I'm Lisa. I am 1 month out from treatment for tonsil cancer. I had a PEG tube put in at the 3rd week of treatment due to horrendous mouth sores/Mucusosis. At one point, I could not even drink water. Since finishing treatment ( 7 wks Radiation, 6 chemo) I have been trying hard to introduce foods and drinks by mouth to…
Caphosol and/or Muguard?
For those who used these products, were they helpful? Did you use both? Or is only one necessary? I was trying to find the ingredients to make sure I'm not allergic to anything in them. Please share your experiences. Also, did insurance cover these Meds?
Cancer with no insurance
I have great insurance through my employer. I'm lucky. After a $3,000 deductible, I am covered 100%. So far, my insurance has been billed $88,000 for treatments and surgery before radiation. Those treatments are $4,500 each, times 30, bringing the total to over $200,000. I know the insurance will knock the price down some,…
Expressions - - - They are gone!! They're BACK
I know many of us have done the "Expressions" and have spent hours on them and over the years with all the dates and times of our journey. They help tell our story and have photos and videos even. They are all gone. I wrote CSN and waiting for a reply. You might want to send them a message also. Bill
You can drink too much water, so have your blood sodium checked..
You can drink too much water; Just an FYI, or Did You Know? We didn't. As far as hydration and how much to drink or take in, the rule of thumb is half your weight in ounces. If you weigh 100 lbs it is 50 oz, if 200lbs you need 100 oz of water. Then there are some meds that might require you to do more or less. You can take…
Non healing ulcer in throat after radiation tx
Sorry in advance for the long post. I finished my treatment on November 5 of last year with 35 rounds of radiation and 6 rounds of Erbitux for Tonsil cancer- primary tumor was in tonsil and had spread to a few lymph nodes on both sides. Everything during the treatment went good except the radiation doctor at MD Anderson…
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…
Cetuximab and Radiation
This is my first post, primarily because I have not found a kindred spirit on this discussion board. On February 26, I had a cancerous (SCC) removed from my cheek. It was not in the parotid gland, but near the duct. There was no evidence of a primary source The tumor was sitting on the facial muscle, and was discreet.…
Recurrence + Checking In
Hi all, Thought I would say hi plus give an update. Prior to my 3 year scans in March I was suffering back pain and signs of just being unwell. My oncologist booked me in for a PET scan and unfortunately I lit up like a Christmas Tree. Tumours were identified in my spine, lumps in my lungs and kidneys plus a mass on my…
Expat living in India when diagnosed for scc tongue cancer
Dealing with the realization that my ulcer was malignant was definitely one of the hardest moments of my life. It was my first year in this new teaching job and I couldn't have picked a more caring group of administrators, colleagues, parents, and students. Immediately after revealing my condition I had a team of caring…
My radiation journey
Hello everyone, I posted earlier about starting rads with no feeding tube. I started week #1 of 6 on May 16th and thought I would journal my progress here with you. So far, the first 5 treatments have been largely uneventful. I am experiencing the onset of dry mouth and a slight loss of taste. Water tastes a little like…
Radiation
My path report, which is still confusing after meeting with the oncologist and surgeon's PA (he's almost always away!), says the following: Metastatic scattered viable squamous carcinoma clusters in one lymph node. Extracapsular extension. Rare atypical sub mucosal squamous clusters, squamous mucosa and submucosa with…
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…
Loss of full use of hands from chemo
Here is my story. I am also looking for a warrior. I was a kidney donor Dec 2006. Ten months laterI was diagnosed with Sstage 4 nasopharangeal carcinoma. With such extensive testing to be an organ donor for my brother, how could I be sick. Through IMRT radiatin and very aggressive chemo-Cisplatin and 5Fu, I appear to now…
Radiation to sinuses only for ENB
I was diagnosed with Olfactory Neuroblastoma 1/12/16 after surgery to remove what was thought to be a polyp obstructing my right nostril. I had a second surgery 2/4/16 to remove remaining tumor, and to get clear margins. It was Grade II, so while my neck was clear on PET scan I am starting 31 IMRT radiation treatments…
Anniversary
Wow time can go so fast this week is my Anniversary, me a PEG got married 4 years this week. As much as I love Peg I am hoping and praying to divorce someday soon. But for now she is a blessing every day in keeping me alive Tim
ISOSOURCE 1.5
I have a case and 1/2 of Isosource 1.5 that I will ship free to anyone who can use it. I called my local ACS but they don't currently have anyone who can use it. It is all unopened and in date. Private message me and I'll happily ship it. Barbara
Radiation without feeding tube
Hello all, My radiologist at Sloan-Kettering is not recommending a feeding tube for my 30 rounds of tongue and neck treatment. Yet, I see so many here have either needed, or were advised to have one put in. Who went without it and can you tell me your experiences? I'm happy with the recommendation but worried about trouble…
SCC, forgoing treatment, ulcerating tumor
Brand new and looking for any advice/knowledge/wisdom for my father (66 years old). He was diagnosed with stage 2 SCC under his toungue in July 2015. He underwent radiation and chemo, was in remission in September. He started having severe pain Oct-Jan, he was rediagnosed in Feb - stage 4a. He has opted to forgo radiation…
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…
PET Scan done...if I can post....
Testing....testing.... I had my 3 month post PET scan Friday. When the Dr. hadn't called by last night I figured I wouldn't hear from him until Monday....or for sure on Tuesday, since I have an appointment with him. Figured I'd just pretend for the weekend that I didn't even have a scan. The little stinker called Saturday…
New & Humbled
I was diagnosed July with Cancer of the vocal chords. Drs. consensus was 100% cure and "you'll live to be 100!" I'm 67 now and pointed out I'd only made plans up to 90. Anyway I'm now left with 8 more Radiation treatments out of 34 and my throat is so sore I cant swallow with nothing to go down let alone with food or drink…
Hyperbaric feedback?
anyone out there gone through hyperbaric oxygen treatment? I finished my 12th dive today. I've been approved for 40. I realize healing takes place very slowly. I'm told it takes about 20 dives before you may even begin to see improvement. I'd like to know more about your hyperbaric experience. How long before you saw…
SSD Amount
What is the average amount people get if they go on Social Security Disability ? Reason I am asking is due to my cancer has came back and I just don't know if after my second go around if I am going to be able to perform my job. I had treatment 15 yrs ago, the 7wks of radiation, 3 chemo treatments and then they removed the…
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…
Stage 4 tonsil and lymphnode cancer advice
Hi My name is Mike and I have been diagnosed with stage 4 tonsil cancer and Am on the 6th radiation treatment out of 35 treatments . I guess I knew that it would be terrible but the change it taste of food and the feeling of sand in my mouth are awfull . I was wondering if anyone had advice on a beverage of a soft food…

Head and Neck Cancer

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