Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Head and Neck Cancer

Archives for September 2018

Affordable HME supplies for Total Laryngectomy patient
New My father had total Laryngectomy 45 days ago and he is going through very tough situation. He is too weak to do anything physically as well as mentally. As a son, I am helping him as much as I can. He is staying with me right now. I can provide food and shelter but medical expenses out of pocket without insurnace are…
Low Level Laser Therapy for Mouth Sores
Hello everyone, A local media personality in the Pittsburgh area where I live has HPV SCC and is documenting his journey on his website to raise public awareness and to support the effort to get children vaccinated. He is enrolled in a trial and is getting immuno therapy along with his chemo and radiation therapy. One of…
Swollen and painful lymph nodes 12 weeks after treatment
Hi all. I am 12 weeks post chemoradiation. Diagnosis: scc right tonsil hpv positive cancer with right side neck lymph nodes involvement. Brief history: i had 33 rads with chemo. Treatment ended on july 6th. Right tonsil was removed before xhemo and rads. Felt a significant shrinking in nodes in the first week of rads and…
Two years of pain
I had a tongue biopsy done two years ago and it still hurts all the time. It was precancerous. I've been to every kind of doctor I can imagine....I am desperate...any ideas?
Elderly Mother Update
Hello all, Wanted to check in and thank everyone who gave advice, support, encouragement when i asked for information for my 83 yr old mother last week. She has given it thought, talked to different people, and has come to the decision to not seek treatment for her throat cancer. She says that treatment would be too hard…
Hello everyone
I have been here for a month,month and a half probaly--1st time posting.My husband had stage 4 scc.He has just finished 35 rads--did very well,no feeding tube--eat everything from start to finish (steak chops etc)He has really been thru a rough time for 2 yrs now.Last summer he had a 3 way vascular bypass where they put a…
4 months post rad
I am doing quite well actually. Only lingering problems is I have trouble putting on weight. My appetitite is not what it use to be. MY mucus is still there, which i find abnormal. PET Scan was good, and my scope showed nothing. I suffer from fatigue which probably has to do with the weight loss. MY throat is still swollen…
Post chemoradiation tenderness in neck
Hi all. I am 12 weeks post chemoradiation. Diagnosis: right tonsil hpv related cancer with right side neck nodes involvement. Dear fellows I am feeling tenderness at the right side of my neck where my nodes were cancereous. These enlarged nodes shrunk significantly after the chemo and radiation doses. However, since last…
Has anyone had hyperthermia?
We are trying to meet with a UCSF radiation oncologist. Kaiser does not offer hyperthermia, but UCSF does. Has anyone had this? Did it help make other treatments more efficacious? He cannot have full course of radiation because of his childhood radiation for Hodgkins. We feel are options are narrowing. Thank you.
Need Advice for Elderly Mother
Hello all. i'm searching for information/advice/experience/thoughts as i look for ways to help my mother with her diagnosis. She is 83 yrs old and was told 2 weeks ago that she has throat cancer. We do not yet know if it's spread. We do know that she is not a surgical candidate. It has been recommended that she have…
Neck dissection and Oral surgery: They break Front teeth
Hi all especially phrannie51, My cancer has recurred and I am going to have a salvage surgery on Tuesday September 25 at Stanford. I cannot trust any oncologist. I saw my SO on Friday 9/21, by chance, and he told me my front teeth look weak and 1 or more may break during the surgery. He did not mention it on 8/20/18 when…
Pain.
Hello All, Has anyone else developed pain to hand and shoulder joints post Chemo/Rad treatment? I am about 2 yrs out of 7 Rads/36 Chemo Txs. I am a gym rat so I think that the more I lift and exercise the better the pain will be relieved. It is not happening. I am just curious if anyone has this pain. If not I guess I am…
Drinking occasionally after treatment
First off I am not a drinker never have been. But if I’m away I do like to have a few...I am going to Jamaica the end of October and was wondering if I could have a few drinks. My radiologists said maybe a drink a day but he didn’t look to be to happy when he said it. I am fine not drinking if that’s how it has to be just…
CT w/contrast next Tuesday
I finished treatment Nov 2017 at Levine Cancer Institute in Charlotte and am having ct w/contrast next Tuesday (9/25) to make sure I'm still NED. Area right below my ear at upper jawbone feels bruised to the touch. Keep me in your prayers! Thank you!
Good Northern California oncologists?
Hi, it is Mary, wife of head and neck cancer patient. The answers I received to my first inquiry were so helpful. We are still reeling and trying to get our balance after the tumor board at Kaiser deemed his cancer inoperable, and his childhood radiation may rule out a full course. Has anyone had really good radiation or…
I think I will stick around for awhile!
Hello Everyone, I thought I'd drop by with words of encouragement. I know when I read Phrannie's post, it encouraged me! (I'm so very happy for you, Phrannie). And Matt and others were so supportive on this site. I want to give back. It's been a 14 months since my surgery (previous posts are here somewhere) I had radiation…
Tonge cancer
On September 7th, 2018. Had tonge surgery. They cut half of my of my tonge on the right side. And got reconstructed. Now, I am doing some exercise. The pathologist tells that will work, and eventually I will be able to tallk again, clearly. But, I had the feeling that will never happened and I will be talking funny for…
Husband in No Cal told squamous cell cancer in neck inoperable by Kaiser tumor board.advice?
Hello, I am new to this and hope I am not breaking an protocol. But my husband and I received devastating news from the Kaiser tumor board that they will not operate on the tumor that has grown in his neck and wraps around his carotid artery. To complicate matters, he had radiation as a teenager for Hodgkins, which led to…
Possible dentures after hbot ???
Hi there , Been notifiied by my maxillo surgeon that I will need to get hbo. Just waiting on next step. He has accessed all my cancer records and records from my dentist. Looking through the dosage of radiation I recieved which he said was high dosage of 75 , I would need hbo so he can extract 2 back teeth. 30 visits of…
Lhermitte's sign?
This is a shot in the dark, but... Over the past few weeks I've been getting these weird "electric" sensations near the base of my spine, thought it was a pinched nerve, Googling aroundit sounds like Lhermitte's sign: https://en.wikipedia.org/wiki/Lhermitte's_sign In reading about it, it can be a delayed onset result of…
Treatments
Hi, Recently l have been diagnosed with squamous cell carcinoma ( hpv virus ) I discovered a lump in my neck and sure enough it was cancer. The cancer is in 1 lymph node in my neck and their is a tumor on 1 side of my tounge at the base. The oncologist thinks that this is the primary. I am receiving 7 weeks of radiation (…
Scope appt over!
Hi everyone. Just had my appt with my ENT specialist today. He scoped me and said thier still is one spot where my tumor was that he will check again in a month. He said it's either swollen tissue from radiation or maybe might still be cancer. At that time he said if spot is still there he might do a biopsy. I'm not going…
High creatinine after treatment finished
I finished treatment 9 weeks ago (35 rad, 2 chemo-cisplatin). I didn't get the 3rd chemo due to the high creatinine. My creatinine was last measured at 1.92 and has been around that level since treatment ended. Has anyone had high creatinine this long after treatment ended and did it ever get better? If it got better, how…
Alternative Treatments?
I was diagnosed with Oropharyngeal cancer, primary BOT stage 4b HPV+ in August of 2016. I got 35 does of radiation and 8 doses of chemo from late Septermber 2016 to middle of November of that year. On August 2, 2018 based on my PET scan I was told that my cancer has recurred. My radiation onc., found a very good and…
Hyperbaric therapy treatment
Hi there, Its been a very long time since I was in here last. I had cancer, base of tongue back in mid 2014. Was absolutely terrified. Got very sick for a good year and a half. Had a stomach tube put into my stomach and couldn't swallow food by the 5th week of 6 radiation treatment. Anyway, 4 years on. Doing well except a…
Surviaval rates for recurrent oropharyngeal cancer
Hi, I met with my SO yesterday and among other things he gave me a paper. its says of 181 with Oropharyngeal cancer hpv+, the 2 years survival rate was 54.6% and the hpv- was 27.6%. I have a selective Neck dissetion on 9/25/18, and will be hospitalized and under observation 24/7, for 7 days if no complication arises. So I…
Is triple biopsy tough?
Just been told I have a large mass on my base tongu. having a triple biopsy done 9/20. He’s ordering an Awake Fiberoptic Intebation for it. Anyone have any info on this? I’m new to this forum, first post. Thanks, Bill
Important question recurrent cancer & surgery
Hi all, I have a selective neck dissection for my recurrent H & N Cancer BOT HPV+. My original cancer was stage 4.2 b T3. I read a few artilces on line by reputable sources that when the T size is T3 or higfher and stage is 4a or higher Neck dissection (also called salvage surgery) is the best way to "Manage" The cancer…
It Works For Me: Attitude
I came across this perspective on life many eons ago, and immediately embraced and incorporated it into my philosophy of how I live my life. This view has enabled me to positively enjoy, deal and cope with the many experiences and vissitueds that I have encountered on my journey in life; the wonderful, the good, the bad,…
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 ?…

Head and Neck Cancer

Discussion List