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Checking in
Hi all I'm a long timer which possibly makes me a senior citizen of this website. (Everybody has to be sonething) Yesterday was my ten year anniversary of a full neck disection and today I return to the University of Pennsylvania for a yearly check because last year the **** showed up in my right lung. I see a lot of new…
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Worried that I have neck/throat cancer
Hi Everyone, I am looking for some help or possibly some guidance/insights (apologies for the long post but I would greatly appreciate any help): -My troubles started about two months ago when I woke one day and felt a bit of soreness on the right side of my neck under the jaw (it's really hard to describe the feeling…
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tongue burning
I had 40 rad and 6 chemo treatment for throat cancer, the last radiation was 4/3/07 but still have fairly acute sensistivity to spices especially pepper with my tongue and to some extent the back of my mouth or palate. I thought this would be gone by now, but still dealing with it on top of lack of taste and dry pasty…
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Fluid in middle ear post radiotherapy
About 2 weeks before I finished my 7 week radiotherapy course I noticed my right ear felt blocked. I was hoping it was just wax but apparently I have fluid in my middle ear. This is a radiotherapy side effect and I'd like to hear(pardon the pun) if anyone can tell me if this goes away by itself. The specialist was already…
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Pills that cannot be crushed for Feeding Tube
Asked 2 Pharmacists, one w/CVS, if the meds I am on are okay to crush, mix with water and shoot into FT. One did not know. The other thought one was okay, but another one he didn't. So, I did some searching. ismp.org/recommendations/do-not-crush ismp stands for Institute for Safe Medical Practice. The one med I was told by…
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Food TEXTURE (not taste)
Hello all, I'm new here, even though I've just finished my treatment protocol. I'm a 44 year old female, mother of 2, career as a veterinarian, diagnosed with nasopharyngeal carcinoma back in June. I recently completed 35 rounds of radiation (on 9/20) + 3 rounds of chemo (various protocols, stopping early due to side…
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Sore throat so soon, normal? Location of symptoms? Also remedies?
I woke up yesterday with the sore throat I was told to expect. The thing is, it is pretty bad and I have only had 11 out of 33 radiation treatments. For some reason I was under the impression that the side effects only got bad for the last two weeks or so. I'm seeing my radiation oncologist today, so I will ask her too,…
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Can nasopharyngeal carcinoma be treated without radiation?
Hi, I was diagnosed stage 4c NPC with mets in September. Was told 5-10% chance of survival with no chance of curing the disease. Have finished 3 rounds of neoadjuvant chemo (Cisplatin,Taxotere, 5FU). I also have worked the last month with a healer. A month ago, after the 2nd round of chemo, I decided not to do radiation,…
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Best Drinks
I know there was a recent discussion here about the best drinks for calorie intake. Not homemade but stuff you can purchase. I think there was a mention of a variety of boost that was extra high calorie but I can't remember the exact name. Maybe someone here remembers. Maybe boost HQ or something like that. Whatever it was…
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Mucus everyone hates
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How to make Thanksgiving livable
3 days of radiation left. Last one Wednesday before Thanksgiving. Last chemo cisplatin will be decided on on Wednesday and given on Friday if he is able. Not eating. Barely doing 4 cans of tube feeding per day. my husband fee absolutely awful. How can I help him?
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Metastisized SCC, HPV & Occult Primary
Just found this site and Discussion Board today and am hoping someone can share their experience with similar scenario. My 73 year old husband was diagnosed in July with SCC, HPV16 with Occult Primary in the neck. It had metastisized to his lymph nodes on the left side of the neck. He had surgery in Ocotber, removed a…
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Skin help neck radiation
Suggestions for helping pain and healing for neck radiation skin.
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Adding to Superthread
As many of you know, I am on a FT for the rest of my life. The Superthread does not have the option of adding. There is a section dedicated to Feeding Tubes, but I do not see 2 critical issues: 1) Amount of calories/day and water, based on height & weight, and 2) Crushed or liquid medicines put into FTs relative to the…
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Best Health Insurance
Thank you all for your advice on my previous post regarding my mother in law that we think might have some sort of throat cancer and no health insurance. She is seeing the ENT in a week and will be paying for that appointment out of pocket. She is looking at Obamacare plans currently, but that won't kick in until 1/1/20.…
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Best cancer center for H & N?
I would love to hear recommendations for great H & N cancer centers. Currently, I am being worked up at Moffitt and was quite satisfied with the way things were progressing up until last week. The main issues I am facing are lack of transparency in communication and a sense that am being manipulated. These two issues are…
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ROLL CALL 2019 - THIRD UPDATE OCT. 22, 2019
PLEASE READ ROLL CALL 2019 Third UPDATE October 22, 2019 All H&N members are welcome! Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014). Thank You. ROLL CALL Guidelines:…
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Radiation burn healing environment: Moist vs Dry
I am suffering from some pretty bad radiation burn -- moist desquamation over a pretty large area. It is by far my worst side effect so far. I have two rounds of radiation left to go. I am considering requesting a referral to a wound care expert, because I am more and more convinced that my radiation oncologist is not…
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Change?
How far into radiation did you notice tumor changes?
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Neutropenia delay cisplatin second dose. Scared it will lessen curative radiation.
My husbands second dose of cisplatin is delayed due to neutropenia. How many of you experienced this? We are fighting HPV tonsil cancer.
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Treatment options
I have metastisized HPV positive 16 throat cancer in my lungs now. I have been given two treatment options. * Fifteen treatments of radiation first and then follow-up with chemo or immunotherapy as denoted by testing. * Chemo or immunotherapy as denoted by testing The radiation is "out of the box" as being offerred by my…
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One More Update
Stated earlier that I had the neck dissection and 2 operations to stop the leaking khylie valve. At that point from x rays a suspicious node was discovered so I underwent another op to biopsy the node and thank God it was negative. And then I had a temporary feeding tube in my nose so another op to put one in my belly…
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Side effects of Fluorouracil (5FU) for NPC Nasopharyngeal Cancer
I was diagnosed with Nasopharyngeal Cancer back around the 1st of the year (2019). I have finished my radiation treatment, along with 3 rounds of Cisplatin chemo. At this point, I am scheduled for 3 more follow up treatments of Chemo - Fluorouracil (5FU) along with Cisplatin. This will be slow released, via a "ball" over a…
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Not doing well
Hi everyone: Appt tomorrow with speech/swallow therapist. Saw another specialist last week. He said my difficulty in breathing from scar tissue in airway area and from paralyzed cord also blocking airway. I can breathe just shortwinded. Kind if difficult, but living like that. I'm on a FT for life, and they want to put…
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Preventing
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extracapsular spread
My name is Angel and I have been diagnosed with stage 4b tonsil cancer. I had a neck dissection where my ent found 4 lymph nodes positive for cancer and extracapsular spread in the fatty tissue in my neck. He said my chances for a cure are at least 50/50. When I saw my oncologist, who had initially told me 50/50, but then…
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Voice Banking or Message Banking for Impending Voice loss
New here. Has anyone here ever done Voice Banking or Voice Message Banking? And then been able to get the use of the recordings turned into using your own voice rather than robotic sounding?? Is this technilogy even ready yet? My neurologist is recommending I bank my voice now because it seems I'm heading for loss of the…
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Wbcgar update
After five operations and complications I am hoping to be home soon. Too hard for me to post right now, but I will tell my story to you guys later. Wishing you all well - God Bless!
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Finally Home-Just a Brief Update
OK folks saying Hi and I am finally home. Just came home Monday afternoon Nov. 4 and had my first night at home in awhile. Had my first day today. The wife and I spent most of today dealing with the stuff they sent home from rehab,organizing meds and had visiting nurse and speech pathologist visit. I am still tired and…
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Full Disclosure Survey
Just wondering how many of you were informed of the severe consequences of treatment? Our docs soft-pedaled info and were quite evasive. Is this common?