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"Best" hospital for Head/Neck?
I am very pleased with the care I've been receiving at University of Chicago Hospitals (live in Chicagoland suburbs), but my squamous cell tongue cancer has proven to be quite resistant to chemo (and is described by one doctor as "mean"), and I'm no longer a candidate for follow-on chemo/radiation. They are down to choices…
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Audio Recording Doctors Visits
I've noticed in a few threads people mentioning that they were frequently frustrated with the fact that they often forgot crucial instructions or what was said during doctors visits because of the medications they were on or simply because of the chemo fog their brain was in. Some said this is why they tried to always…
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Nausea won’t quit
Hi All, well, I finished treatment two months ago and have to say I feel the after effects are far worse than the treatment. I had delayed radiation burns to my whole neck which we treated with the creams and they went away. I had the mouth and tongue sores but dealt with those and managed to maintain my weight so the…
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Proton Beam Therapy?
I've been doing some research on radiation treatment and found a couple of references to proton beam therapy. Only a few places in the country but lots more planned. Anyone been treated with Proton Beam Therapy instead of IMRT? Would like to hear how it went (side effects). Lizzie
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tips for getting through cancer treatment that worked for me
When I was diagnosed back in March, I was able to connect with some different individuals who were going through the process, or had just completed treatment, ahead of me. Here are some of the suggestions that I took that might help others. Some came from the my team at Sloan Kettering, as well. I'll give some quick stats…
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Post treatment therapies - survey
Hi all NPC survivors! I was treated for NPC stage 2 in 2013. Doctors did not recommend or mention of any therapy for side effects from chemo and radiation. Did anyone had or having any therapy post treatment besides medications? It seems we are on our own once we rang the bell. Please share your experiences if you receive…
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Cold feeling during Erbitux infusions? Anyone else experience this?
My husband had his 5th Erbitux yesterday. (SCC BOT IVa HPV+) He says he has been freezing during each of the Erbitux sessions. He feels like the cold is so intense it is painful. I got him a heated blanket to try but he says it didn't heat up fast enough to really help. Maybe the nurses could heat up the Erbitux a bit…
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Peg tube
I've read quite a bit on this forum and was somewhat prepared for the pain after the tonsillectomy which was pretty bad but not the excruciating pain I'm experiencing from the peg tube insertion this morning. About 30 to 40 minutes after the surgery while I was in recovery it felt like somebody hit me in the stomach with a…
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First day of radiation...I have noticed something already...help
Hi All, I went for my first treatment today. I took Ativan but probably won't need it again as I didn't find it stressful. My question is for anyone who has had neck dissection with resulting nerve damage, prior to rads. I found after treatment that the nerve in my ear was quite irritated and painful (that's part of the…
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Question for those that have tried acupuncture.
Hi, my husband (SCC BOT and lymph node on one side of neck, HPV+) has completed two rounds of Erbitux and 2 days of radiation! We know we have a long road ahead, but am trying to do what we can now to make the road as smooth as possible. For those of you that had success with acupuncture, did you start it during your…
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2 years ago
2 years ago yesterday, my husband was diagnosed with tongue cancer. And the day passed by without him even remembering. It was a busy day- he had meetings all day at work, and it took him an hour and a half to get home because of traffic. Our teenager's new phone came in the mail yesterday, so he spent part of the evening…
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Chemo created
i developed lower than average Sodium from Chemo a yr ago. Since thanI have been hospitalized 2xwith low Sodium. Just got released from My second trip were I dropped to a record breaking 109, which I had a seizure than a stroke. Not a good gift for your 60th birthday. So know another side effect from. Chemo. So tired of No…
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brand new, so scared/tongue-underarm nodes connection?
Hi, So thankful for a place to hear and be heard. My dentist found a 3 cm spot on my tongue. Is not very noticeable, not red or white colored, and it was found after I voluntary chose to get a scan with their newfangled light. I've been a smoker for years. I've been referred for a biopsy, and will be doing that as quickly…
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Going there...
Got the news this morning that my dad has stage 4a (possibly 4b-have to have a pet scan) squamous cell carcinoma. He had a tonsillectomyon 9/27. They said it was in lymph nodes. They want to do PET scan, dental appt and then feed tube. I guess I am still in denial but does anyone have any expierence with cannabis oil? I…
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Cesplatin and Hearing
I was diagnosed with HPV. Received 35 radiation treatment and 3 chemo Cesplatin. I completed treatement on Sept 1st. Since completion it has been very hard to hear. I feel I have about 20 percent in both ears. Also buzzing and ringing. Has anyone had these side effect and seen improvement? If so how long for improvement. I…
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When your dying loved one gets angry---what do you do?
Hello Everyone--Is anyone caring for a loved one who's dying and become furious over little things? How do you handle it??? My sister had end stage oral cancer. The morphine and dilaudid barely make a dent in her endless pain.Lately, she's been havng outbursts of extreme anger over simple things,like asking if she wants a…
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3-Weeks Post Treatment
I'm a 47yr old male, non-smoker, non-drinker, in very good health. Diagnosed with Stage 3 SCC base of the tongue, HPV+. Did the traditional 35 rads and 3 doses of chemo. I did NOT use a chemo port or feeding tube. On This coming Tuesday marks three weeks since treatment ended. I think the entire treatment process went…
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Throat Bleeding
Have had 33 radiation treatments. Now have severe pain and bleeding in my throat and roof of my mouth. Almost unable to swallow. Existing on Boost and water right now. Any suggestions?
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Opinions from people who are or were in a similar situation (NX wait and see)
Hi all, Where to begin! I received a diagnosis of T1 tongue cancer after seeing 6 different Dr.s who refused to biopsy my tongue for fear it might "delay the healing process". I am 29 years old (28 at diagnosis), never smoked and occasionally will have a beer with friends. I have a feeling that my background information…
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CT Scan
Those of you that have been here for a pretty long time will remember that 3 years after treatment for laryngeal cancer I got a small nodule in my lung which turned out to be cancerous, had surgery to get it out. Today I had my 5 year cat scan on that and all was well and clear. Denis
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Experience with Immunotherapy?
Hello, I have been following this forum since my wife was first diagnosed with tongue cancer in October 2016 and would like to thank everyone for sharing their experience that helped us a lot to stay strong and positive. My wife is still going through her cancer treatment, we would like to get some advice on the next…
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Biopsy
Oh my, where to start. Just yesterday the doctor called and said I have Squamous Cell Carsinoma and he thinks it's probalby in the hard area (what ever that is) in the top back of my mounth. He says Tongue Cancer for short. I'm freaked out. I read everything from the major clinics about the potential treatment. Surgery…
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need information and support
My husband has recently been diagnosed with esophageal cancer (3-4 days ago). They are not sure yet if it is localized or has moved. I need to know everything I can. The Doctors are frightening us. We don't know if we should go to Mayo, or elsewhere, or if any of these new drugs will help. We appreciate any information you…
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3 months post treatment
Had a CT scan today and will have a PET scan this Thursday. Then follow up with the ENT Doctor next Monday. Very nervous about receiving results. Hoping for awesome news.
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What have you heard from your docs???
My husband was treated at MD Anderson for Nasopharyngeal Cancer. Stage IVC mets to lymph nodes and liver at diagnosis. He has been NED since finishing treatment Feb 2011. He just had Pet and MRI. Per our Dr, from studies done there, with patients at my husbands stage, 5 year survival is 10%., anyone at this stage have…
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Pain control
Hi Everyone, I'm new to the forums and posted about a week ago. My biopsies were inconclusive and the cancer grew in my neck for a year prior to selective neck dissection which basically removed everything but internal carotid. Surgeon said I had high 80 s chance of survival with chemoradiation, but first TORS to remove…
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Diagnosed with squamous today
Diagnosed today with squamous cancer. Growth on my tonsil could be from HPV virus. Will not find out out until I get pet scan done sometime next week. I am so scared but trying to be positive. how do I explain to my 16 yr old daughter?
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Mom- 7 months Post, PET/Biopsy
Hello Everyone, I posted a little while back talking about my Mom. She had Stage III T3N1MO, Laryngeal Cancer, hpv +. She received chemo and radiation for 7 weeks and finished in February 2017. She had her first PET/CT in May 2017, and that came back encouraging, significantly decreased uptake. She had another PET/CT a…
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Mugard
Hi, I am going to start a ten week program of continues 5 fu and 50 doses rad for tonsil cancer. I have read great things about mugard for mouth issues. Has anyone tried it? experiances? Any feedback would be great! Thanks in advance. John
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Mucoepidermoid Carcinoma Low Grade
I was diagnosed with MEC Low Grade on my soft palate. I have now had surgery and have been healing for a month. I have a oral nasal fistula about 5-6mm. I will be visiting a specialized dentist to make me a Palatal obturator. I was curious if this heals on its own with time. Chemo and radiation are not recommended since…