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Head and Neck Cancer

Archives for July 2016

Flavored water?
Headed into week four of rads and chemo and water tastes pretty salty. Did anyone have any success with flavoring their water to taste better? I'm thinking fruit, but seems unlikely I could taste the difference. I find if I drink cold water it tastes better, but I carry around my water all day and it tends to get down to…
Caregiver stressed to the max
My husband was diagnosed with nasopharygeal cancer in February. Been through 6 weeks of radiation and 3 doses of cisplatin 3 weeks apart. He became depressed in March but didn't get help. Kept telling doctor he was okay. Made it through all treatments without peg and only 16 lb weight loss. Very last day of radiation found…
Had surgery June 30, no path report yet; worried about a few things
I apologize in advance for this long post. It was hard to sit down and put my thoughts together. I am 17 days post-op, after going out-of state to JH in Baltimore. It looks like I am healing pretty well from the surgery itself, but nervous about a few things and anxious about what's to come. Some background: The biopsy I…
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Five days post rads
Fatigue is draining, but that's not a big deal. Sores in mouth actually worsened the last few days, and there is some tongue and gum bleeding when I rinse with soda rinse. Normal? Still eating solids, but takes forever to get through a saucer or bread plate size portion. Thankful I can still do it. Ear pain comes and goes.…
First food you could eat after treatments
I'm still on shakes and can't imagine what would work at this point. Do you remember the first food that worked for you post treatment?
Week 3 almost done (Monday)
Having a rough time with this last chemo. I am really annoyed and going to get in touch with the coordinator who we met at my first chemo and said if we had any problems to call him. I had chemo tues and was fine wed. Thurs I felt lousy. I threw up my protein drink and was so tired went back to bed. I woke up at…
After Surgery
Hi everyone.I went in and my a splint wired into jaw and he also trimmed gum lines as he did.He also from what I was told relexed my tounge flap somewhat.He also ran a tube down my nose to stomach so I get to eat that way again for a week or so.I found that I can't get implants do to the high radiation treatment as the…
My radiation recovery - Week 2
It's hard to believe I'm 16 days past my last treatment. My recovery seems to be going well, just slow as expected. But, I think I've turned the corner, at this point. I'm staying on liquids through July. The salty taste is just too much to attempt solids. Amazingly, I am still maintaining my weight with just 2 shakes a…
Week Three Done
Hi Everyone, Just checking in after completing my third week of rads yesterday. The fatigue is definitely starting to catch up with me and after each treatment my mouth feels a little sore for a while, but then it fades away by the morning. I have my magic mouthwash at the ready, but haven't had to use it so far. I've got…
checking in
Hello everyone, So many new names on site. For those of you that I haven't met yet, keep the word BELIEVE in your vocab. from here out. And know that everyone's walk with the beast isn't the same....tx's maybe, surgeries maybe...but not outcomes. I am almost 5 yrs. out. Dx was adenoid cystic carcinoma of the large saliva…
New treatments and trials for head and neck cancer (especially HPV+)
A couple people mentioned in my Back In The Saddle thread that they'd be interested in some of the information I've discovered about new treatments for head and neck cancer. I'm in an interesting position because while I can have approved treatments for either lung cancer OR head and neck cancer (both HPV+ squamous cell),…
Margins unclear decision to make
Hi I had surgery in May for tumor removal that turned out to be olfactory neuroblastoma. MRI came back good - no spreading. Radiation oncologist has concerns because pathologist could not confirm if the margins were clean or not. So, do I have radiation in case we have cancer cells left or do the wait and see and if it…
Do I accept a doctors diagnosis that it "most likely" isn't cancer or push for more tests and a defi
Hi Everyone, I've been reading the forum for a few weeks and decided I should join and ask for advise. About a month ago I felt a lump inside my lower left cheek. It's not easily seen or visible when looking inside my mouth but I can feel it and if I stretch my cheek somewhat you can clearly see it. I pointed it out to my…
Acupuncture Question
For those of you who had acupuncture to reduce or alleviate dry mouth....how often did you have it and for how many sessions? We tried the ALTENS clinical study which is supposed to simulate acupuncture but it had no effect. We'd like to try the real deal now. Hopefully a year out we can still reap some benefit. I know…
getting started
Hi everyone! Hubby has recently been dx with base of tongue cancer and freely admits he is in denial, so I have become the designated reseacher and found this site, which i have been reading for several weeks. We are now at the first oncologist visit and meeting with the radiation oncologist tomorrow. I plan on using this…
getting started
HI everyone Hubby has been diagnosed with base of tongue cancer and I have avidly been reading this site, which is very helpful. I thought I would get started by getting started. We are now in the process of first oncology visits and the radiation oncologist tomorrow. I'm sure we will have many questions and/or thoughts…
Lymphedema
My husband is 3 months post treatment. Does anyone have any suggestions on how to deal with lymphedema in the neck under the chin? He is having a hard time sleeping and tries to clear his throat a lot. He received a NED report after his 60 day checkup. Any suggestions would be appreciated.
Week Three- Finis
Today is the end of week three. I am halfway through. I wish the next three didn't seem like an eternity away. I felt my worst so far going in for the zaps today. It was meet with the doc day and I burst into tears (which is always a good look). I told her of my throat, mouth and ear pain. She gave me some liquid morphine.…
D day for me - last radiation!!
I used to imagine what the last day would feel like. I also used to think it would never come. I read all about symptoms and other reactions to radiation and was a pack of nerves at first...then I let go of fear and took it a day at a time. The best advice I got from so many sweet and thoughtful people here. People who had…
Scan results tomorrow UPDATED - a date with NED
and then we set sail! We get our next installment of scan results tomorrow - CT of head, neck and chest - 1 year post rads. I feel good about the results...with just a smidge of scanxiety. Friday we leave for Alaska and a cruise which we had to postpone when he was diagnosed 13 months ago. I'll be back to let you know how…
Swallowing after radiation...
I read radiation can cause swallowing issues years down the road, along with other issues. Right now, my swallowing is fine, nearly 2 weeks post rads. Has anyone experienced swallowing issues months, even years down the road?
Is radiation a good idea
Hi - I had a recurrence of an Olfactory Neuroblastoma removed on May 3rd. My first surgery was Sept 2014 and was misdiagnosed. It was later confirmed to be ONB. The results of my mri from 1 week ago, shows no cancer. The question is should I have radiation at this time or wait and have it if another tumor develops. Will…
Back in the saddle again
Quick catch up for folks since I haven't been posting here quite as often lately: I was treated for Stage IV HPV+ SCC of the tonsil and soft palate and lymph nodes in 2012 (chemo-radiation, IMRT, cisplatin). I was all clear until late 2015 when they found a large mass in my right lung and nodes around it (Stage III HPV+…
Not liking food or wanting to eat
I realized a long time back I am at an advantage when it came to difficulty in eating after the glossectomies--I have been a type 1 diabetic for nearly 45 years and I have little or no choice in eating. Once one takes insulin, there's no other choice. Since March of 2015, I've had 2 glossectomies, my top teeth pulled and…
Still losing Weight, "Burning Mouth" Pain Hampering Eating...Frustrated !!
I am sorry for not checking in sooner to support and congratulate everyone fighting the fight. Since my Mom passed away over a week ago I've been struggling with her passing, painful eating, and lack of energy. But I have been reading up and so many I would like to respond to personally. Until than, please know my thoughts…
My radiation recovery - Week 1
I am officially 9 days post rad and here's my progress, thus far. Mouth sores - they are beginning to heal. Brushing my teeth is much easier the past few days. I've noticed I'm not looking to rinse as much as before. My mouth feels cleaner each day. Mucous - still there, but diminishing. Taking Mucinex to help move it…
Struggling with eating
I think one of the toughest things for me two weeks in is dealing with how much of an effort eating is now. I'm still able to swallow without pain, but nothing tastes good, which affects my appetite, which then affects my mood and energy and so on. I've realized that I need to just move to tube feedings as I am struggling…
Pain is tolerable but, Fentanyl?
I feel as if I could get by with extra strength Tylenol, doc gave me Fentanyl patch, with no warnings. Was reading the old thread about do's and donts, and I'm scared to use it. What are the usual side effects? Will I walk around all groggy and out of it? I have several appts tomorrow as well as two "tanning sessions" as I…
When did your fatigue subside?
I'm less than 1 week post rads and the fatigue is hitting me hard. I can't stay active more than 2 or 3 hours before lying down. How long can I expect this to last?

Head and Neck Cancer

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