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HPV positive
Hooray...or at least I think it's hooray!! The oncologist just called and said my husband is indeed HPV positive. I have heard and read that if the cancer is HPV related the prognosis and outcome are better. I know that the plan of treatment is the same but after being told that he had a 40-50% chance of being cured the…
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desperate for tips on how to deal with Cisplatin and Radiation in Oral Cavity
Hi! So on the 11th Jan. I went in for Robotic Surgery to search for my Primary Cancer. (I had been diagnosed in late December with 4a HPV16 SCC in my right neck lymph nodes (by lymphectomy), one removed and two other possibly infected.) My surgeon removed both sets of tonsils and the base of tongue. No cancer was found…
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After radiation and chemo, getting your hunger and taste back
i have been almost 5 months out of treatment and wanted to share something that could possibly help you get your hunger and taste back more quickly. I did not see other info about this on the site about this possible solution and so, am posting this. i was on a feeding tube for a total of 5 months. To get the feeding tube…
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Bone Pain
Checking in again! Good day CSN members. I'll be having my 1 year anniversary PET 3 days from now. A little bit nervous as I've been having random bone pains. But I try to keep my mind off it. Anyone else having same experience with bone pains? It comes and go. I guess I'll know the news in 3 days and will keep you'all…
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3/2/17 will be 5 year NED for my mom-however....
Hello, For thos ewho do not know me, welcome. I am sorry you have to be here. For some of you that have been on this forum when my mom was in treatment you may remember me. My mom had a long almost 2 years fight with 2 recurrances. Anyway yes, on 3/2/17 ( which is also her birthday) it will be 5 years since her last…
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Chicken Soup for the cancer patient
This is not about motivation, this is about actual chicken soup. I was in considerable distress from no calories and having problems swallowing anything thicker than water. One of the nurses suggested boiling a complete chicken, and then not separating the fat from the broth. That turns out to be easier to swallow than…
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Lymph node cancer- treatment options - need suggestions
About a year and a half ago I was diagnosed with cancer on my tongue. Moffitt cancer center in Tampa cut out the infected part of my tongue and two zones of lymph nodes ( to see if they were also affected - they weren't) on the left side of my neck. Everything was good until month and a half ago when a lump under my chin…
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Can't sleep during treatment
My husband has just completed 10/35 radiation treatments and 2 Cisplatin treatments. He has lost his tastebuds and has no interest in eating within the last 2 days. He describes his mouth as being coated with the most disgusting layer of cheap butter. He is forcing smoothies at this point, did have a feeding tube inserted…
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Physical therapy for neck and swallow concerns
My husband finished 35 rads and 12 chemos over a 16 week timeframe for Squamous Cell Carcinoma stage 4-A and it was HPV positive Now that we're finished with treatment we're being sent to physical therapy to prevent Lymphodema and to show my husband how to do neck stretches so that he doesn't lose range of motion years…
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Surgical/Radiated Area
Like most I have gone through a lot of changes since my treatment ended August 2016. However, now that I'm about four months out I am starting to notice odid "feelings" in the area of my surgery and radiation. I see an ENT monthly, he actually performed the surgery. Thus far between physical exams and a scope as recent as…
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Treatment begins tomorrow
Was diagnosed with Stage II SCC of the lateral tongue with perineural involvement on Oct 26th. I had a partial glossectomy and right neck dissection on Nov 28. I healed well and have been eating everything I know I will miss!! I begin my first Cisplatin treatment tomorrow and radiation begins on Wed. I am feeling nervous,…
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Throat/Healing
I had SCC of the tongue. SUrgery, chemo, radiation. My radiation (35 treatments) ended in late August but my throat still bothers me. I don't have teeth anymore so I drink smoothies or eat soft foods only but I find whatever soft foods I eat afterwards my throat hurts a lot for several hours. Did anyone else experience…
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Just dropping by to say hello to all my fellow warriors
Hello. Wow, it's been awhile since I have stopped by. I miss you all and just wanted to share that this month marks my 5 year clean anniversary. Like many, I have my share of side affects, but at the end of the day I get to lie down and go to sleep after spending the day with those I love. I'm still in Alaska and this is…
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Chills / Shivers During Chemo
Hi all - wondering if anyone else experiences chills / shiver attacks during their chemo infusion? My episodes tend to last 30 minutes and I get chattering teeth, shivers and nausea. Things then go back to normal as if nothing happened. Nurses / Drs are unsure why this is happening and will wrap me in blankets until it…
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Sweating when I eat
Who else has this issue? After my second neck dissection, i sweat profusely from my head when I eat. Food doesn't have to be hot, either. Is there an end in sight for this?
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Doctors
Hi everyone. It's coming up on a year since my surgery. (tumor removal tongue and 42 lymph nodes removed). I consider myself fortunate in that no further treatment was necessary. Since then, I have moved and had to get a new surgeon-head and neck doctor. I had my first follow-up with the original doctor who did the…
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Struggling Caretaker
I have to admit I have taken so much from this blog without setting up an account. I cannot tell you the number of times I was awake all night reading the entries on this site Looking for hope and strength. My husband, 52, was diagnosed with cancer in July. I am still confused with the descriptions you are all so…
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Waiting for ENT visit
I wrote recently about my wait for an ENT visit. 2 yrs ago I saw an ENT who first treated me with antibiotics, to no avail. They diagnosed me with turbinate dysfunction and placed me on Flonase. The flonase seemed to do the trick as far as warding off my sinus headaches. Fast forward two yrs and I am back in the saddle…
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how long to recovery
This topic is one of considerable interest to many of us. I know, I know, "it depends". My experience: I am now seven days after my last rad treatment and am beginning to believe this might have an end. I got down +500 calories, walked easily, saw the last of my radiation burn skin drop off, and mucusities is now…
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Keytruda
I just had another CT scan last Wednesday. The results are mixed. The lung mets are responding and shrinking but the bone mets have increased in size a little. They also found a fracture in my pelvis due to the mets. So this week I start Keytruda. My oncologist is very positive about the immunotherapy route. Kind of…
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Post treatment advise
My husband had surgery the end of July to remove a tumor on the paratid (salivary) gland. Needle biopsy prior to surgery did not show cancer and confirmed it was a type of tumor that rarely is cancerous. However, the post surgery path report found cancer. The tumor had grown around the center main nerve branch feeding the…
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Pain - chronic post treatment
Hello Survivors!!!! Wow what a journey we have all been on and now....we're trying to get our lives back. I'd like to hear from survivors who are experiencing post treatment chronic pain. What are your current levels? What are you and your Drs doing for management? I am 3 yrs post concurrent chemo and radiation for larynx…
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ringing the bell
#33 of 33 radiations and #7 of 7 chemos completed. Initial diagnosis was made by my son, a resident in Emergency Medicine, investigating a cough. Time from initial diagnosis to final treatment was 9 weeks. Stage III N0 M0 HPV on my right tonsil. I had read a variety of horror stories about Kaiser-Permanete. I experienced…
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FEAR
first lesion biopsy was done on Oct 26 this year. total lesion was not removed, margins not totally clear, my tongue still hurts and burns! 2 Months later! I'm going in the hospital Friday to have the remainder of the lesion removed and hopefully get clear margins.... first biopsy showed moderate to severe dysphasi. Hoping…
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T minus 20 ... Radiation for SCC on lower tongue and in the lymph nodes
Got fitted for my mask today. My first radiation is Oct 6; it feels like a year away, but I'm sure I will be in the middle of it before I know it. My cancer journey started Aug 3, when I was told the lumps in my neck were lymph nodes that had SCC that had metastisized from "somewhere", but we weren't sure where.…
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Pre ENT visit
Hello! I am returning to this site after aprox 2 yrs. as I have a new concern that I thought was remedied! 2 yrs. ago my Doc referred me to an ENT as I had a blockage on one side of my nasal passage! History of allergies and previous smoker! I quit 11 yrs ago. The ENT diagnosed me with a turbinate dysfunction. He stated…
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How Healthy Eating Can Help You Beat Cancer
When I read in this NY Post article that a third(!) of all cancer death are due to malnutrition, my first thought was "no way." Then I googled and, sure enough, it's true. Pretty shocking actually. Anyway, this is a good read. So please, everyone...I know it hurts but stay hydrated and do your best to eat the good stuff.…
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Stage III Oral Cancer under Tongue/Tumor growth under Chin
Needing Support I'am a "Newbie" here and would like to know if there are Long Term Surviors of this Cancer. I was told I had a 30% of making it. This is my 3rd time to "ride this Monster." Will endure 8 weeks of Radiaition Therapy (5 Days of Week) plus Chemo once a week for 8 weeks (Cisplatin, IV Port). Could not remove my…
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Need advice and help about medication
My husband had bot surgery with infiltration into lymph node surgery on Dec 23. Sometimes, he can get pills down, sometimes he can't. Sometimes he can get liquid down, sometimes he can't and he vomits. We have his first oncology appt on January 23rd. Today his primary and the ent who did the surgery recommended a peg tube.…
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Time flies...
Haven't been here in awhile...So, exactly 2 yrs. 4 months out from the last treatment for Stage lV SCC BOT HPV 16+, with metastasis to the lymph nodes. Had the 3 cisplatin chemo marathons and the 35 rad cycle. PEG tube for a few months. Didn't have major problems with nausea or constipation at the time. Just dealing with…