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Head and Neck Cancer

Archives for May 2016

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…
It's the big day
we arrived in Houston on Sunday, and spent yesterday at Trader Joe's and SAMs club, a museum and using the small gym at the apartment complex. Why sit around getting anxious? Pointless. The info packet from radiologist's nurse mentioned nothing about face care or what to avoid as far as moisturisers and makeup. I'm…
Sinonasal adenocarcinoma
Hi everyone, I'm brand new here. I'm wondering if someone went through anything somewhat similar. So my husband, 44 yrs old, was diagnosed with sinonasal adenocarcinoma in March. He had surgery to remove it. his surgeon rec was to do radiation for 6 weeks and chemo once a week. We heard about proton beam therapy and we…
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,…
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.…
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?
My radiation journey - Week 2
Just completed 10 treatments today. Seems to be going quickly. Ever notice the older you get, the faster time goes? Anyway. Sores are beginning to get serious. Still eating but getting a bit difficult. I'm noticing serious pain in my throat upon swallowing. No real fatigue to speak of. Treatment is an hours drive in the…
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…
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…
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…
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
radiation induced brachial plexopathy
I am now 63 years old. I had oral cancer, and was treated with Cisplatin and radiation. They beat me up pretty good, and I have several residual issues but the cancer is gone. About three months after my last treatment, I started getting numbness and tingling in my finger tips. It spread within a month or so all the way up…
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…
Second opinion on olfactory neuroblastoma
What doctor/hospital would you go to for a second opinion on this type of tumor. I have just been diagnosed and worry that the head and neck surgeon that I will see on June 1, 2016 may not be familiar with this tumor. I have read that it is very rare. Thanks for any information you can give me.
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…
Newbie - Need advice for my husband re PEG
I found this network by accident and have read many, many of the posts. Thank you for being here!! Brief intro: My husband is 66 years old and other than the recent news about cancer, he is healthy and physically fit. (Side note: 2 years ago he had a partial shoulder replacement and last year he had both of his knees…
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…
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?
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
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…
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…
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…
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…
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…
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
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…
Adding pictures HELP
Could someone please help a tech-deficient individual to post a Profile Picture step-by-step. Need to explain this to me like "Profile Pictures for Dummies". Thank you
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…
Brachytherapy For Base/Posterior of Tongue
Hi! I have just been dx with a base of tongue tumor (posterior in oropharynx:not oral tongue) and was offered the choice of IMRT with "mild chemo" or HDR brachytherapy and I was just wondering if anyone on CSN have received this treatment and how it has impacted your swallowing? This will be my second time going thro…
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…

Head and Neck Cancer

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