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PET scan results today
I received my results today from the PET scan, CLEAR OF CANCER!!! Best three words I have ever heard. Been a long road but I can now breath and I want to thank all of you for getting me through all this. I swear this site was a life saver. I healed fine eating, swallowing well, all taste has returned and no pain other the…
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Lymphedema v.s recurrence?
Hello everyone, Hope everyone is healthy and well. So my dad has Nasophangeal carcinoma with lymph nodes involvmenet on both sides of the neck (more so on the right side). So far, two of his scans came out clear ever since finishing treatment (which he finished exactly a year ago. Last scan done was three months ago).…
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What is base of tongue throat cancer death like and what i should do to help
My father got base of tongue tumor removed 2 years ago. Got 35 radioation and this year 12 chemo and 2 immunotherapy. End of july doctor said maybe 3 months left to leave. Now he takes 10/500mg xeloda palliative chemo. His pain is getting worse and lips swelling. What should i do to help and how the death would be like ?…
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jawbone replacement surgery
I am scheduled for jawbone replacement in 6 days. I have osteoradionecrosis from intensive radiation 10 yrs ago. Has anyone had this operation where they take out a part of the jawbone and replace it with bone from the fibula (leg)? If so how did it go? How are you now? Do you know of any other options available? The…
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Pet Scan Completed!!!
To all my H & N friends: A quick update regarding my pet/ct scan. I took it today and got through it!! I'm so happy about it. The imaging facility was great. What a major difference than the last one I went to. The techs were extremely knowledgeable and they even had thier own doctors overseeing the tests. Results should…
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bad patient- what is success of treatment
Tonsil Cancer - III/IV -my family member is a horrible patient, he didn't show to appts or kept everyone in dark about appointemtns or diagnoiss or treatments. he may have Traumatic Brain Injury (unrelated) he had regimee of chemo and radiation. tumor seems to have gone away.other probs exist, especially weight won't go…
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Saliva back
One year post radiation of pure hell and I just got saliva back. Doctor said it wouldn't happen. I did have faith and stuck with it. Taste not back but I am eating and I feel it coming. Those of you in similar situations keep the faith and pray. You have nothing to lose. Best wishes to all and good luck.
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Abscess in Neck
My husband has a neck abscess. He kept complaining about bad tasting stuff being secreted out of his upper jaw/cheekbone. Then his temperature started going up; his incision and drain site looked red and puffy. I wasn't taking chances, so took pictures of his neck and sent by text to the doctor's assistant. They had us…
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False positive PET scan?
Anyone havee sai experience with a false positive PET scan? Had surgery for BOT cancer right side in December, followed up with 30 rad treatments ending in March. Went for a follow-up PET scan last week and rad onc called to say something ("at the low end of what we consider worrisome") basicallh in the exact same spot as…
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just finished week #4 of 7
Have right tonsil cancer with 4 lynph nodes same side level 1 &2. Stage was 4a under old staging and now stage 1 under the new staging for my HPV positive. Things are going very well so far. The primary was the tonsil and it basically melted away after the fist 6 rads. The tonsil filled the whole right side of my throat…
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very slow taste bud returns
I am 10 weeks post treatment and feeling good except for my taste buds not really coming back. I can discern tastes on nearly all foods but the taste remains awful, to the point I'm not really eating solid foods. I drink 2 shakes a day but am really getting sick of them as well. I have read and re-read the other taste bud…
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Pet/CT scan FEAR
Hi H&N members: We'll i'm still plugging away. Treatment over with and my ENT did scope me. He found an elevated tissue where my tumor was on base of my tongue. He said it is still the cancer or just swollen tissue from radiation. So I have to have a pet CT scan. I have Severe claustrophobia and anxiety. I took the test…
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mouth blisters after any "food"
my hubby's mouth blisters along the roof and alongside his upper gums (between gums and cheek) after he tries to "eat" anything such as ensure, shakes, etc. water and coffee (with creamer) doesn't do this (so far). He thought it was just part of the process so he hadn't mentioned it to the doc until today. they had never…
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The C: Section Chronicles - Reflections - 18 months on
Hi everybody, I've been down in the dumps the past few months so hadn't been around to catch up with people on this board. It's been 18 months since I had my last radiation, and so far the oncologist has given me the all clear. To recap; I've had sepsis twice in the past two years, and throat cancer inbetween. The first…
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Trismus and Masseter Muscle
Hi All, After two rounds of radiation, the second to my right neck just under the mandible, I've developed trismus related to inflammation of the masseter muscle. That's the large cheek muscle just in front of your jaw joint. Feels like a ball to most. Has anyone experienced this? If so, was there a remedy for the…
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Head & Neck SCC, 3rd Recurrence. Any success stories with Immunotherapy?
I have been desperately browsing and searching to find useful information online, but only have been bumping into scary statistics. I found Inspire, Cancer Compass and CSN websites and decided to sign up on all three in hope to get more information. Our story. In 2010 my hubby was diagnosed with SCC after removal of a lump…
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Sore throat when speaking... feeling worried.
Ho all. I am 5 weeks post treatment of my right tonsil SCC and multiple right lymph nodes, hpv positive. Finished 33 rads on july 6th last month. I am very scared as i feel sore throat and little pain on the right side while i speak. I dont know whethet it is caused by radiation or something else more serious. I am…
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Feelings and Depression
It's not something we talk about. In fact, as a former EMT, depression is something people who are going to kill themselves never ever talk about. They smile, and when they are done, people say "he/she was always so happy" We are very good at hiding what we really feel. So, I'm going to start it, First, there's the "why…
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Stinging on scalp and face
I finished treatment (immunotherapy and radiation in March. For the past 3 weeks weeks every time I get hot or sweat I start to sting and itch on my scalp, face and neck. Has anyone else experienced this? Thank you Blessings of healing for all Orchid
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Personality changes
Has anyone experienced big changes in your personality? I know there is chemo brain but how has that affected you and did it end? My bf had 40 rads and 3 Cisplatins. He had an emergency tracheostomy and feeding tube. I know a ton of changes has come his way and I know he is trying to figure out a way to maneuver through…
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Checking in
hello all. I don’t know what made me think to check in, but here I am. Almost 6 years from my last treatment. Glad to see some of the people that were here for me during my ordeal Are still here. As a survivor we all know our inner feelings. It is easy to say you have to fight. For me it was the toughest fight I ever…
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Home Again - TORS surgery complete
I'm so glad to be home, friends! I thought I'd get on here while we were at the hospital ... but of course that was not of importance at the time. He had the TORS surgery, took out part of his tongue, a muscle that controls tongue movement, and part of his paryngeal wall. Then the regular surgery to take out the affected…
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Two Days From Surgery And Insurance Refuses
Just found out insurance is refusing to approve his treatment again. NEVER get an HMO. They're saying they approved the doctor and the hospital, not robotic surgery. We had a huge fight to get it to the teaching hospital. They KNEW we were asking for robotic surgery. It was the REASON we were able to get the referral ....…
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Just started
Just started my 35 treatments with Erbitux infusion once a week. Anyone do the same treatment for HPV neck cancer?
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Pain Meds other than Opiods
My husband and I are both concerned about opiod addiction. He called and asked for something this week because his neck and shoulder are hurting more and more, as well as a killer headache. They gave him oxycontin, which he's not wanting to take. Thus the question: ARE THERE GOOD PAIN MEDS OTHER THAN OPIODS? I figured…
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Last treatment was June 15
Hello all my last day of treatment was June 15....7 weeks of radiation to the left side five days a week and Cisplatin once a week for those 7 weeks. I faired pretty well during treatments although scared to death most of it. Doctors kept saying I’m doing well, no pain throughout just lost taste of all foods. But throat…
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Recurrent pa
I completed radiation treatment for suproglottis cancer one year ago and so far so good except the other side of my throat where the cancer was not has become painful. My oncologist scoped and didn't see anything abnormal. My ENT wants to biopsy. My question to long term survivors is: Is this from irritation? I do try to…
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Dad has Tongue Cancer - Need to understand
Hi to all, My dad was diagnosed in March with Stage 4b Tongue cancer. I don't know all of the numbers, but he had a 4.6cm x 2.7cm tumor in his tongue (OPSCC). He had the other lymph node involved on the other side. PET scan revealed something in the liver, which turned out to be the same cancer, albeit only about 2.3cm. He…
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SCC Back of Pharyngeal Wall - Break Jaw??
When we first went to oncologist (teaching hospital), the oncology intern told us that they would break my husband's jaw when they do the TORS robotic surgery. We did not think to ask the surgeon about it. My husband is concerned about it and wondering what to expect. He's hoping the intern was wrong. My husband insisted…
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Scarring of inside of throat
Wondering if anyone has had scarring inside your throat that affected your swallowing and what was done to alleviate it. Quick update...bf had Stage IV tonsil, had emergency tracheostomy and PEG, completed 3 Cisplatin and 40 rads. Passed 1st PET 6/12, had appliances removed 7/13. He's seeing PT for this issue and they gave…