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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…
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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…
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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?
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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…
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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…
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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…
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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.
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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,…
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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…
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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!
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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…
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Numbness in neck
Hello all I have a question last day of treatment was June 15th can anyone tell me how long before the numbness in the neck goes away. First let me explain I had 3 lymp nodes and cyst removed back in March and the surgeon said he had to go in deep due to the fact of the size and how it was growing. Then add the radiation…
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Soreness under jaw
I'm coming up on my 6 month check up post treatment June 27th. Three month PET/CT results were NED. Thank the Lord! A few weeks ago the area under the right side of my jaw started feeling sore to the touch. No noticeable swelling and didn't feel any pearl shaped nodes. I was diagnosed with BOT Stage IV Aug 2017 (now…
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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…
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3 years out update
My husband (stage 1 tongue cancer) had his 3 year check up with his head and neck surgeon this morning. Got the all clear once again, and the doctor told my husband that he has declared his initial cancer cured. Praise hands! He still wants to see my husband once a year for the next 2 years (next appt is Sept 9, 2019), and…
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Depression after finishing treatment
Just wondering if anyone has experienced a bout of continuing depression following the completion of treatment. I'm guessing this is fairly common, but if you anything you'd like to share, I'd be happy to hear it. My husband finished treatment about 8 months ago and while he feels better physically, he still feels…
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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…
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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…
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BOT Squamous Cell Carcinoma w/3 lymph nodes: Week by Week
Greetings, I've never posted on this site, but I've read it often over the past several months as I've gone through cancer treatment. It's been so helpful. I can't thank everyone enough. I know the following is long, but this is the type of information I was looking for when I was first diagnosed. I found it on this site…
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Lhermitte's Sign
After meeting with my radiation oncologist today, he enlightened me on the numbness and tingling down both arms, as well as the occipital neuralgia I had been experiencing over the last 3 weeks. It is subsiding. He told me that it was radiation induced Lhermitte's sign. A brief autoimmune syndrome precipitated by radiation…
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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…
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Can't get Dental Implants Need Denture Solution
I had a complete maxillectomy to remove a plasmacytoma in my left maxillary sinus. They removed the roof of my mouth and reconstructed using my fibula and rib bone. I completed radiation treatments which make post radiation surgery risky. I have no bone in the top of my mouth that will support dental implants. They had to…
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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…
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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…
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Have a Selective Neck diseection on September 25. Appreciate INFO.
Hi, I have a Selective Neck dissection on the right sde of my neck for recuurence of my cancer, and since besides biopsies I have never had an operation in my life I will highly appreciate sharing experinces from those who have had any sort of Neck dissection before. Tp me Neck disesection is almost like end of life. Will…
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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…
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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…
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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…
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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
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Recurrence of Base of tongue Cancer
Hello My Radiation Oncologist called me today and told me that my cancer has recurred based on result of PET CT scan I had yesterday. He asked me to sit tight, and he is putting a lot of efforts trying to reach a head and neck surgeon that he tursts for a biopsy. All of these Docs are in Stanford. He also told me my…