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Head and Neck Cancer

Superthread (Read only) ~ contributed by Sweetblood22
Welcome new members! This is a read-only post that provides information about resources we, members of the head and neck cancer forum, found helpful as well as our answers to most frequently asked questions in our forum. Please feel free to send Skiffin16 a private message (PM) if you have something you think should be…
Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
lower dose chemo for the elderly
Was just reading about lower dose for the elderly some say it has no effect on outcome and others say it does have a negative effect on outcome . Idont want to do anything to affect the outcome.
excessive mucous production in throat following radiation
Last year my 82 year old husband underwent 6 weeks radiotheraphy twice daily for squamaous cell cancer of the epiglottis this proved unsuccessfull and in Jan this year had lazer treatment to remove the tumour, ever since the radiation he has suffered with excessive thick mucous whwich seems to be getting worse Dr's just…
Post-Op Partial Glossectomy - Please Help
Hello All - I had a partial glossectomy yesterday for the left side of my tongue. It resembles a “cookie bite” out of my tongue but goes down to the floor of my mouth. My throat and tongue are so swollen I can’t speak, it’s incredibly painful. The outside of my throat is huge from the breathing tube. Has anyone else had…
Osteoradionecrosis
I am starting radiation treatments this week, 35 total plus chemo. I am concerned about what I read about bone death due to RT, called Osteoradionecrosis. A friend of mine just developed this after five (5) years after her last RT session. Does anyone know the statistics on having this reaction after RT?
De-intensification Clinical Trial
Hello everyone! Thank you all for posting your journey lessons, insights, experiences, etc. I feel like I've read them all since I joined you as a cancer patient. I begin treatment after surgery in a couple of days as part of a clinical study. Your posts have been so meaningful to us that I hope that by doing the same I…
5 year anniversary
Just wanted to post an update on my health. September 20th was 5 years since I finished my treatment for HPV 16 tonsil cancer. I was stage 1 on the revised staging system. Was considered stage 4 the year b4 my treatment. The staging was changed for HPV 16 cases only. Anyway, I have not been on the site much since they…
Unfortunately RADIATION TREATMENT Causes Short And Long Term Side Effects
Here is a communication and study I have come across from a Doctor, Dr. Itzhak Brook MD about radiation's short and long term side effects. There is a link that takes you to a Pdf. He has covered the subject of radiation effects very well and it is good information for our H&N group very interesting and well-covered.…
After TORS, de-intensified trial of 3 weeks rad
Hi all. Massive thanks to you who have shared your experience and helpful tips about getting through your ordeals. You have shown me what patience and strength is. I'm here for support, but also want to be a resource for anyone going through something similar, as I seem to be a kinda niche patient with this early-stage ssc…
Surgery, radiotherapy and a marathon
It’s been one year and three months since my last radiotherapy treatment, and yesterday I ran my first marathon. PART 1 Hi, my name is Simon. I’m 47 and was diagnosed with pT2N1 ORL cancer. I received the news on the 28th of February 2022. It was a sunny day. I was on my way to the bookstore with one of my daughters to buy…
Well meaning relatives
Just spent a week with a relative who proceeded to tell me, that there was no cure for my cancer .This was such a depressing conversation and I am struggling to shake it. She took away my hope and I told her so. She says she is just being real.
My son has MPNST, need info please
My 14 year old son has recently been diagnosed with MPNST. Neurofriboma runs in my family on my side. I have it as well, but I have never had a malignant tumor that large. His is located in his neck and upper chest area, about 4.5". It is pushing his trachea to the side slightly and has completely encased some major…
tonsil cancer question, diagnosis and symptoms
I am sure you are all asked this many, many times, so I apologize if this is redundant. I have not been diagnosed, but currently taking all steps to figure out what is causing my tonsil pain. I had dysplasia on the roof of my mouth before, so not sure what is going on with my tonsil, but I have very localized pain (on my…
Boron Neutron Capture Therapy (BNCT) (Informational)
This is from the National Cancer Institute in a small description. I am posting this as information because at this point it is not widely available. I understand the most activity on this is in Japan. It seems there is strong renewed interest given the technology improvements. There are quite a few being built around the…
Tinnitus due to chemotherapy (cisplatin) and radiation to cure NPC
I had radiation and chemotherapy (Drug:cisplatin) in 2021 to treat my nasopharyngeal carcinoma. My treatment ended in Aug 2021. I had side effects that came with the treatment and had handle them well. However, recently (early Aug 2022), one year after the treatment, i suddenly develop tinnitus and it’s effecting me very…
8 weeks post treatment “backsliding”
My husband is 8 weeks post treatment. Standard protocol for treatment, chemo and radiation. No feeding tube(but definitely should have). The last week of treatment and the following two weeks his palliative care doctor put him on morphine for the severe pain. He only used the morphine about 10 days. He was eating some…
8 month post surgery problems.
Hello everyone, I am 56m have a history of tobacco abuse for at least 40 years. Last year September I was diagnosed with stage 4 squamous cell carcinoma in the oral cavity. The doctors told me the lymph nodes have been affected and I need to get rid of my lower jaw and have a bone transplant from my leg to the site. I had…
BLOOD PRESSURE INSTABILITY FROM RADIATION THERAPY FOR HEAD AND NECK CANCER
This covers baroreflex receptor and other problems related to radiation. this is an answer and information from Dr. Itzhak Brook MD. This is a question posed to Dr. Brook and his answer to it. The Question: Dr. Brook, thank you for sharing your article. I survived Stage IV throat cancer that started in my tonsil in 2014. I…
Please help my sister - Tonsil cancer and Covid
Hello all, My sister is 63 years of age and has been diagnosed with tonsil cancer more than 3 years ago. 1after radiation treatments, she can't eat any more and has to use the feeding tube since and the cancer is still with her. She recently got covid and getting weaker and weaker...All the nurses and emergency Dr sent her…
!st Chemo Down
Had !st chemo treatment on Wed and it has been ruff. Joint pain , pain in my feet and my heart was doing flip flops yesterday but it stopped. I didnt think it was going to be so painful
Recommendations for Pain Meds (non-narcotic)
Hello - I've found all your posts very helpful, and this is my first time posting. I have base of tonsil HPV+ SCC. I've had two surgeries, and I'm currently close to half-way through 35 radiation treatments (mix of proton and IMRT). No surprise, swallowing is starting to really hurt. I started Lyrica last week, but I don't…
Deleted - accidental duplicate
Deleted - accidental duplicate
Backsliding
Backsliding. I'm 60 days post treatment. I was doing good a couple weeks ago, or so I thought. Getting a little body weight exercises and yoga done, walking the dogs... This past week, and especially today, the exhaustion, and the loss of balance, it feels like it did after a week of treatment. I know some of the…
Parotid Cancer survivor - regaining nerve function?
What experience have others had when it seems like the facial and neck nerves are beginning to function again after 47 years? Read my bio for the background.
NavDX positive test
Hello, I have HPV related head and neck cancer. I've had three surgeries....a biopsy, radical tonsillectomy and a full neck dissection. I'm currently undergoing radiation treatments. I was told after removing the tumor from my tonsil that the margins were good and the cancer was removed. I recently had a NavDX test done…
Sharing Summer Pictures With Everyone
Summer is winding down quickly and we will be heading into fall soon. I took some pictures over the summer and would like to share some of God's Great Blessings and creations with others. I apologize if there is some repetition. I am sure many of you have wonderful pictures yourself so feel free to add on to this posting…
Radiation or no radiation
I just had my third surgery since May 2017. First surgery was to remove a liason on the floor of my mouth under my tongue. 2nd surgery (June 2018) was to remove my right neck lymph nodes. 3rd surgery (August 2018) was to remove my left neck lymph nodes. CT scan results were the reason for the right removal. Of 27 nodes…
Drivingdaisy (Lisa) A Dear Member And Friend Of Our H&N Group Has Passed
It is with great sorrow that I bring this news to the Head & Neck group. Not being able to contact her for a while a couple of the members were trying to find out about her and make contact. After getting some new possible contact information I made a phone call and left a message and soon received a text containing news I…
Recurrence / double radiation
So it’s been a LONG time since I posted, but as a search for the NAVdx on Google brought me back and I thought I would update my story. BTW I am a huge proponent of the NAVdx and trust it more than a PET or CT scan for HPV cancer. I was originally diagnosed in October 2020 with tonsil cancer with one lymph node involved,…
Photodynamic Laser Treatment for Osteoradionecrosis?
Please members make note of this, it may be helpful someday to you. Although not the frontline treatment on this a fellow CSN'er, Mavish, recently posted this as an add-on and update into another posting. I think this subject and this option is important enough to share as a posting to the group and the public at large.…

Head and Neck Cancer

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