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Extreme Salty Taste in Mouth
After jaw cancer surgery 20 months ago and radiation and chemo 11 months ago, my mouth has become extremely salty. The salty taste is all day long. I drink water all day long but nothing helps. Has anyone else experienced this problem?
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Proton or IMRT
I have HPV tonsil and back of tonge cancer spread to lymph node {T2 N1 M0}. I will be starting radiation treatment and weekly chemo. My question is I was suppose to start IMRT radiation and weekly cisplatin next Monday and just found out my insurance approved Proton Treatment but the hospital MD Anderson will not have a…
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Head and Neck Cancer Alliance Survivorship Webinars
Check the CSN Announcements section for information about a series of webinars on surviving HNC. They start on July 22 and run for the next four weeks. They are free, but you must register. mike
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Where to go for accurate diagnosis?
Hi everyone. I will start by saying that I have not been diagnosed with head and neck cancer or any type of cancer for that matter, so please forgive me for posting here. I'm just really concerned about some symptoms I've been having since January or February of this year (2020). I have a wife and two small children (1 and…
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Covid 19 & HPV BoT CANCER
I am about 2 years post all is well except the small amount of mucus and dry mouth symptons. Along with this comes the dry cough and runny nose that I have had since Radiation days. What makes it difficult is that these symptons coincide with the covid-19 symptons. Just wondering if there is any other problems they need to…
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parotid gland cancer
I found out in December 09 that I had parotid gland cancer . On Feb 5 th this year I had a operation at John Hopkins hospital for the cancer the operation went well Then on March of this year I had 33 treatments of Radiation to make sure they got all the cancer. It has been almost 8 weeks since my last Radiation treatment…
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Amygdala cancer
Hello friends, It's my first testimonial, I underwent cancer treatment in the oropharynx, lodged in the amygdala with cisplatin chemotherapy and radiotherapy 35 sessions. During chemotherapy I felt little effect, but when radiotherapy started together in the first week my suffering started. Mouth sores, blisters in the…
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One Of Our Very Own CSN Members
CSN member Mikemetz has written a book about his cancer experiences. The book was recently released on Amazon and Barnes & Noble. The title is "My Two Journies in the Cancer World: Team Mike Versus the Prarie Dogs". Mike learned he had cancer in February of 2009. He joined CSN in 2011 and has gone through much and shared…
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Survivor 3 yr 3 mo
Hi all, I do not post often, not sure if I am nervous to jinx my recovery. There was a time for sure that I checked in on the posts here daily. So....I survived a horrendous 3-6 mos of treatment and recovery. Was definitely hour to hour feeling and sometimes minute to minute. My advise would be if you are facing this, to…
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Cetuximab (Erbitux) for advanced Stage IV
So our new PET showed stuff and our prognosis was not great, but were determined to fight all the way. Chemos dont seem to be working anymore. We've chosen to go with cetuximab (Erbitux)...no additional radiation at this time. I've heard a rash and possible severe reactions. Has anyone done just this med for advanced Stage…
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getting hard to eat
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Nearly a year post tx
On August 23, 2019 I had my last radiation treatment for hpv+ scc in the left tonsil with 1 lymph node on the same side involved. I chose to forego chemotherapy and only do 33 radiation treatments. It was a tough road but it's in the rear view and all and all I'm doing well. Just wanted to check in and wish everyone well…
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It’s in my lungs
the biopsy came back showing spindle squamous cell carcinoma in my lung pleura. My oncologists seem to think that surgery and radiation probably wouldn’t be helpful. I‘m now being thrown into the clinical trial bin, which makes me feel like I have a death sentence. My birthday is this coming May 3rd - I will be 30. I had…
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Finished!!!!
Just wanted to post and say thank you so very very much to everyone on this forum, and those who kindly took the time to respond personally to my posts about my husband!!! Means so much, and was, truly, what got me through the early days of his diagnosis. Was my sanity. And the information I gleaned here, helped me take…
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Mucositis?
Hello fellow survivors, I'm now 3 1/2 years out from my last radiation/chemo treatments for tongue and neck cancer. I went through treatments twice in one year and it did a number on my neck. Mucositis was not really an issue up until about 6 months ago. Now I seem to have to clear my throat every 20 minutes. Anyone else…
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Wishing Everyone Happy 4th
Happy 4th of July folks. It is independence day once again and may we remember and celebrate the freedom and blessings we have living in the greatest nation on earth. God bless America-God bless us all. And above all may we take time to Remember our founding fathers and All who have served and defended the freedom we enjoy…
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Pain after neck dissection
I am the care giver of a head and neck survivor. My husband has been battling this disease since 2006. He had a recurrence and had neck dissection in May 2010. It has been 10 months and he is in constant pain. On pain medication 24/7. Has anyone else had this experience and will it eventually go away. He is getting…
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Three years out from treatment.
Been a long while since I've posted here. Lots of new names here. Sorry for what you all are going through our have gone through. May is 3 years since my treatment. S4 BOT. Left side. 1 node each side of neck. 7 weekly cisplatin, 35 daily rads. No surgery. Other than a laundry list of side effects, I'm well. Good luck with…
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Starting Keytruda this week
I have stageIV tonsil Cancer that has metastisized to my left lung. I was originnally diagnosed 2015 with tonsil cancer stage IV and recieved 7 weeks of radiation and 5 1/2 weeks of chemo. That took care of it in my tonsil then then 2yrs later it metastisized to my left lung and was removed with pinpoint radiation. A year…
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Chemo Saliva
Hello Everyone, Daisy (Lisa). Here. Has anyone developed a disgusting horrible form of saliva called Chemo Saliva & I'm 4 yrs of dealing with it getting worse. It's, thick, disgusting tasting, no watery element to it. Though it was gone along with all Saliva but a great Accupuncturist followed a Dr who came up with an…
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Covid-19 Discussion, Support, Etc.
I thought I would start this coronavirus topic as a place for folks to get support and support each other in this trying time. Also as a place to vent, share information, comfort others, relieve loneliness in a time where we are told to "limit our contact with other folks and stay home as much as possible". etc. Basically…
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1 year after Radical neck dissection
Hi Not sure how to classify what I had, let's just say, HPV Tonsil cancer with 2 local recurrences, all told, radiation, dissection, chemo, dissection, and Keytruda for almost 10 months. Parts of tongue, base of mouth, tonsil area, jaw bone, lymph nodes, all one sidebut all surgically altered in some way. Rebuilt , this…
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My throat cancer
Hi Just heard about the Cancer Survivor Network and found it very helpful. I was diagnosed with throat cancer in May, 2019, had a golf ball size tumor on the left side of my throat. First general doctor in October, 2018 said it was nothing just by feeling it. 8 months later (as it got bothersome) saw a different doctor and…
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Recent Good News
Hello, I just wanted to let everyone know that I had My CT Scan with dye this week of my Head & Neck area on Tuesday the 26th as a follow up to my recent cancer episode. Today I talked to my radiation doctor as to the results and I got the best news ever as he sees no sign of cancer (NED) and the scan is unremarkable. I…
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Newly Diagnosed and SCARED!
Hi everyone! I am very new to this-3 days since learning I had Squamous Cell Carcinoma P16. i am 49 and am staring down my own mortality already. I can't believe the number of emotions that I have felt, been through, or worried about in these 3 short days. I have a PET scan tomorrow, and outside of being slightly…
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Trismus, neck pain, tooth pain, jaw pain, vocal chord paralis, trach tube
Hi Everyone I am new here. I had all my cancer treatments in the Summer of 2002 everything has been downhill since then. I have severe neck and jaw pain that no DR listens to. I have severe trismus and I have vocal chord paralis and because of that I have a trach tube. I have a horrible voice that people cannot understand,…
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IMMUNE SYSTEM WORRIES
Hey all, I'm sure this thought has crossed many minds so far. I'm 2yrs 2 months NED but the thought constantly crosses my mind if my immune system is as strong as it once was?? Never been one to get sick in the past so, I'm hoping that continues this go around.. Thoughts and prayers for all Jerry
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HPV+ 'Shame'. Do you disclose your HPV status?
Personally, it never occured to me not to be open about the fact that my base of tongue cancer tested positive for HPV. However, after meeting numerous people (online and in person) who have received treatment for HPV+ cancer, I have encountered several who have choosen not to reveal that their cancer was most likley…
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ATC free for now - what is next??
My husband's PET Scan (3 months after end of radiation/chemo) showed no new or remaining cancer. He was diagnozed with Anaplastic Thyroid Cancer. His doctor said that in about 3 months time she will simply examine him for any pain, swelling etc, but no new scans would be scheduled at this stage. But how can we be sure that…
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forever effects
Many long term effects from chemo or radiation can show up unexpectedly and will effect your quality of life. I am 2 1/2 years out of chemo and radiation for neck cancer surgery and still no taste or saliva. Thought some was coming back a few weeks ago and I was wrong. I am dealing with painful neuropathy with no success.…