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Rang that Bell 8/16
I rang that bell 2 days ago! While waiting to go in an Aunt and her niece walked in (the Aunt rang the bell last week). They came back just to see me ring the bell!! I was so touched! My husband and our middle daughter were there when I went into treatment and when I walked out our oldest daughter was there as well!! She…
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New member with obturator
I'm a new member who has an obturator. See my CSN space for more info. I'd like to talk to others who have an obturator to ask how you manage it and what you can eat with it. I'm almost 2 years post-treatment and still dealing with mouth pain, taking pain meds. I haven't been able to move past eating smoothies, blended and…
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New Diagnosis-Going to Siteman Cancer Center-Anyone else?
Hi, My husband is newly diagnosed with Head and Neck cancer involving the right base of tongue, right tonsil, 4 lymph nodes, and a muscle in his neck. PET scan results were that it has NOT spread to other body parts. We're still waiting to see if it is HPV positive or not as the first biopsy didn't have enough cells to…
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Hearing loss
Before hubby started treatment his doc did a hearing test on him (just in case). During treatment he had super sensitive hearing, but not what you'd call "loss" in any sense of the word. It wasn't until after he was nearly done and afterwards that we began to discover that he had 30% loss. At the time it wasn't high on our…
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At The Concert
I had stage 4 tongue cancer with secondary in my neck lmphnodes. They removed 7/8 of my tongue and replaced it with my thigh. My wife and another couple went to a concert to see my wifes favorite band REO Speedwagon. My wife does not do well navigating from the seats to the concession stand plus she wanted to see this…
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Still getting sores?!
I finished rads on June 30th, about 7 weeks ago. I'm making good progress on recovery but noticed that I'm still getting sores popping up on the sides of my mouth towards my throat. They are not large and don't really hurt. They're just annoying when I eat. They seem to appear and reappear in the same spots. How long does…
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Just finished first clinical trial treatment this week
I had HPV+ SCC in my left tonsil and soft palate (Stage IV) in 2014, and had HPV+ SCC in my right lung and lymph nodes (Stage IIIa) at the end of 2015. Both times I had chemo-radiation, the first time with cisplatin and the second time with carboplatin+taxol. The three month PET scan was all clear, but at my six month PET…
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diagnosis
hi i went to a ENT doc may 20, they did a scope up nose into throat , the nurse said it doesnt look like cancer .... i went back to see the doctor a week later he did the same , he said it looks like cancer , so we scheduled a biopsy june 15 , all tests came back negative , so we scheduled another biopsy july 7 he said he…
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week 3
Hello all....to those finishing up rads/chemo...CONGRATS!!!! I am really happy for you. Hubby finished week 3 of radiation and week four of the eribitux. He has been swishing, swashing, spitting, swallowing, and rinsing, as well as rubbing creme on his face. Woke up this morning with pain (just like ya'll said he would)…
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Louisiana The Great Flood of 2016
Photos of our Neighborhood 1 day after the flood Hi everyone this is a video of Avies Knoll where I lived for the past 17 years, stop the video from playing right at 808 and look to the bottom left side you will see my White Truck and the Green roof on my work shop. We did ok and did not get flooded but everyone else and…
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Oral Cancer :(
Hello, my boyfriend was just diagnoised with the adenoid cystic carcinoma cancer located in his mouth specifically in the hard palate section. They advised us that he would need to under go surgery to remove it,, this would mean removing his hard palate , his full upper teeth and that they would reconstruct it with his…
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really confused
My ent doctor told me that i have hypertrophy on base of tongue so he sent for MRI two weeks ago and today i had a biopsy of lymph node . I don't understand why. Why he did the biopsy of my lymph node and not my base of tongue? ? I'm really confused Please help Thank you William
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Meeting Mr. NED
Just a note folks.... 3.5 years out - NED. Despite lingering side effects (definitely a PITA but all part of the "new normal") I'm functioning at 90+% pre cancer in terms of saliva, swallowing, eating, taste etc. Rad Onc couldn't have been more pleased. next poke, scope and prod in Feb. 2017. Keep up the good fight!…
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Chemo week three tomorrow
My husband is in the Siteman Cancer Center program which includes Cisplatin and Abraxane every three weeks for nine weeks. On the weeks he does not have both he has Abraxane only. The side effects thus far are body aches (Back and legs mainly) and fatigue. Legs also ache, but we think it was because his sodium level was a…
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Just checking in:
Hello to all, It has been awhile since on the board but just had my annual CT of head and neck with dye this week and NED!. All clear at year 3 having had SCC BOT stage IV HPV16+. I never take feeling good for granted. Had a lovely lunch with Phrannie when in Montana, She is amazing. Youngest daughter getting married in…
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Rang the bell!
Today I finally rang that bell. I can't believe those seven weeks just flew by. Everyone says it gets harder bef it gets better and that has certainly been true. I've been vomiting mucus all weekend and today and it's hard to keep anything inside my stomach. I've been keeping up with the mucinex and doing salt and soda…
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The end of week 2
I thought I would check with a progress report on hubby's progress to date. He is getting 8 chemo visits...doctors but him on Erbitux and is at day 10 on radiation. So far absolutley no ill effects at all. He was encouraged to eat and to actually put a bit of weight on which he has been doing becuase he doesn't want tubes.…
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Cholesterol Concern Week 6 of treatments
I'm not sure if anyone can provide advice, but I just need to vent. I've read most of the posts on here and have followed much of the advice so I am very thankful for those who share their experiences and suggestions. Definitely get more helpful information here than from oncologists! I'm the caretaker for my husband,…
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6 month NED
Well almost 7 months actually. Husband has his scans on Moday, and the doctor called with the results this morning. Nothing abnormal anywhere. So very happy!! We have been doing well. Husband and I went on vacation at the end of July and had a great time. Kids getting ready to go back to school next week. And husband is…
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Dry throat help
I am having difficulty in sleeping at night due to the dry throat. I wake every 15 to 20 minutes to sip water. Is there anyone who has found a way to extend the sleeping time with this side effect of radiation? Dan
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Waking up each morning , extremely dehydrated
Hi there , Its beem a very long while since I was here last. Been moving forward with my life It will be 2 years on monday since I finished my treatment. I initially lost 43 kgs and have put a fair bit back on now. My appetite is most certainly back and can eat most things now, I struggle a bit with chicken , some meats…
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Done and done
Last treatment was today. I rang the bell. I never thought this day would come. They didn't give me my mask though.I didn't care. Thank you all for being there with me. I will report on my post tx. Not looking forward to post effects but I am so glad for no more zappings. Journey forth.
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NED -- Three Year Checkup
Friends, Wanted to add another NED Report!!! Scan went great this week and my lead MD at MDA Houston gave me the thumbs up and actually even said that the area that recieved radiation looks incredibly good. So one more trip down to Houston to recived the good news and dont need to return till 2017!!! All is great with the…
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7 weeks down and finished - some thoughts on what worked for me....
Just finished 33 radiation and 7 weekly chemo (cisplatin) today and am the proud new owner of a radiation mask, a lei and diploma given to me by the radiation staff. I wanted to share some of my prep work as the doctors both said that I was lucky enough to be in the top 1% for how well I have held up during the treatments.…
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Movement of head & neck cancers
Hi All Have a question about our particular type of cancer hoping all you experts can answer! Is it right to say head and neck in general doesn't tend to move around the body all that easily (mine is low to intermediate grade but officially the latter)? I know obviously every case is different but generally? Lots of things…
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5 more and done!
Next Tuesday I'll be ringing that bell loud and clear after 7 weeks of rads. I have totally lost my voice and now using liquid pain medication in addition to the magic mouthwash and gabapetin. A lot of mucus...have vomited a few times because of it. I am still swallowing and haven't had to use my peg tube yet. The skin…
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Chemo starts tomorrow...Any tips or tricks to share?
Hello, My husband's chemo starts tomorrow. Cispaltin is the drug being used. Any tips, tricks, ideas to make the day easier? Thank you! MJG1
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Hi Everyone!
Just checking in with a little update. (Tongue SCC Stage I). Almost 5 months post surgery. I have moved to New Hampshire and no receive care at Dartmouth. I love that everything is there. Lab, pharmacy. all doctors. I quit smoking three months ago. I had a follow up with the surgeon recommended by my surgeon at Yale. They…
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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…
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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.…