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Rest in peace Kaitter
Hi everyone I am sorry to inform you all that our friend Kaitter Passed away last night, her real name was Debby and she was a wonderful person to know. Please keep her husband and family in all your prayers, God bless you all Tim
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Olfactory Neuroblastoma 4 year old
Hi My son Hudson was recently diagnosed with Olfactory neuroblastoma on 9/22. it took two weeks for final pathology results to come in. We started chemo on 10/5 and yesterday we had our first CT scan post chemo and it showed that the tumor is growing. I am looking for any input, suggestions etc on what did work if you have…
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No taste
My husband has a rare form of neck cancer as it is Neuroendecrine large cell carcinoma. He is half way through chemo and has 10 radiation treatments out of 35. He had to suspend radiation this week as his white cell count was too low and he needed a shot which he can't take with radiation. He is also scheduled for a CT…
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A Red Letter Day
Ok raise your glass of Boost, Ensure, or whatever you please...my husband is officially off all pain meds!! After being labeled a "complication magnet" by his oncologist and having some of the most severe mucositis she has ever seen, my husband was on heavy duty pain meds for extended periods. In the beginning he had…
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Well.....THAT'S over...
Finished rads today....gotta say I'm in a hell of a lot better shape this time, than the first time around. Partly (I'm sure) is due to having 10 less treatments than the first time...and the fact that they were aimed below saliva glands and taste buds, but above anything that could make a person feel funky. I am NOT…
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MRI results in. A question.- UPDATE
My husband had his MRI last week On 2/23. It was his first follow up scan since his rads, chemo, and surgery for stage 1 tongue cancer. The MRI was taken at about 5.5 weeks out from finishing the rads. We were supposed to meet with the rad onc this coming week on 3/3 to go over the results, but things have been really…
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Daughter undergoing tests UPDATE
Thank you all for your thoughts and prayers. We are in a semi-holding pattern. After my daughter explained that she is a flutist and didn't want to risk any facial nerve damage, the doctor at the imaging center postponed the fine needle aspiration/biospy and said she should go to an ENT. So far she has seen her general…
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Painful lymph nodes
Did you all find that your lymph nodes hurt when you were first diagnosed? My really swollen one has been hurting (along jawbone), but the last couple of days I have had pain alone my collarbone on the same side.
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SCC at base of Tongue
Well unfortunately I was diagnosed with a marble size tumor on the base of my tongue (Squamous Cell Carcinoma) it has effected 3 Lymph nodes on the right side of my neck, which swelled up or I would have never known. Going today for the first Doctors Appointment after diagnoses, Just wanted to say thanks for making this…
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new peg tube
Hello everyone: After procrastinating for 7 months after my radiation/chemo, I finally had a peg tube inserted 2 weeks ago and am receiving Isosourse...5 cans per day gravity feeding. This was a decision I should have made much sooner, as starvation nearly got me and I needed to be hospitalized. I weighed only 90 pounds.…
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Scar tissue above vocal cords
Hello, I was wondering if anyone else has whats called a interarytenoid scar. Mine is scar tissue above the vocal cords. It looks like a "hood" but its not impairing my one functioning cords movement. My other cord is paralyzed from previous thyroidectomy in 2003. Its so weird that my treatment caused scar tissue. My sore…
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Throat cancer help
Hi, I am 29 years old and was hoping to get some help. I had laryngeal cancer when I was 26. It was also in my esophagus. I received 31 rounds of radiation. My neck got pretty raw and towards the end I would wake up vomitting blood. Here I am now 2 1/2 years post treatment and my throat continues to bleed every day. I've…
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18 months
i finished 40 rounds of rad wig 28, 14. March of last year, my body fell apart. I'm now 42, even through treatment I kept up my fitness competitions but since many neuro problems starting in legs, then nov 15, sudden vision loss. over Labor Day I was hospitalized with congestive heart failure and was told I had lung…
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ISOSource 1.5
I have 3 cases of IsoSource 1.5 left it expires November 2016, and a group willing to pay the shipping to you. If you can use it please contact me here or on Facebook (Dave Pressler). **This stuff has to be used through a PEG Tube it cannot be drank** !!!!!!!!!!!!!!!!!!!!!!!!!!!MODERATOR PLEASE DELETE IS NOT ALLOWED JUST…
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very sore jaw
Has anyone experienced problems with their jaw? I mean where the joint is by the ear? I'm having terrible pain on my left side up near my ear at the joint when opening and closing. This just started last Friday. Its on the opposite side of my surgery. I finished the radiation treatments clear back last September so find it…
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Clean Margins and No Cancer in Lymph Nodes
Hi Everyone, I was diagnosed with SCC in November. I had a left neck dissection and a tongue resection to remove the tumor and now have clean margins. The tumor board is advising I do radiation. I have to wait weeks before I even find out what type of radiation they want to do. It is very frustrating, I don't understand…
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first Pet scan after treatment worries.
Had my first scan after treatment. My neck came back looking all clear, then he says it showed a small spot on my lung that wasn't there from previous scan. He says he thinks it's little pocket of infection people get in there lungs sometimes. He was going to schedule next scan in 3 months. I was concerned and so he moved…
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Salivary Disfunction
Like all of you, swallowing is a major problem for me. With little-to-no saliva, trying to eat breads or crackers or meat is almost impossible because the salivary enzymes that start the digestion process are missing. Biotene products, and the like, don't work on this part of the eating dilemma, they last to hydrate the…
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Daughter undergoing tests
Most of you know me and my story as caregiver to my husband who is 6 months post treatment for Stage IV nasopharyngeal tumor. My 25 year old daughter, who lives in Anchorage is now undergoing tests for a large mass on one side of her neck under the ear. So far they have done an ultrasound to try and determine if it is…
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Biopsy Done
Well, he actually did the biopsy today. He believes that it most likely is cancer but doesn't think it has advanced. I'm going for the cat scans next week and I'll see him right after that for the results of the biopsy and the scans. He talked about removing the tumor and a lymph node as a precaution and that should do it.…
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Second opinion's matter with Doctors and even Meds...
Going to combine two different things. Goint to the best place for treatment does really matter. Where I live the doctors and Hospital is conciddered having a very good Oncology department, just top notch. First that could not be any farther from the truth. Now I do like our hospital and have been there for many things,…
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Surgery cancelled!
My Mandibulectomy was supposed to hace been January 20th, but I got the flu, then pneumonia, so they rescheduled for February 8th. Then we got a call that plastics couldn't make that date nor the 15th. Surgery was scheduled for the 29th. Seemed a long way off, but I figured I could get back in shape, get some things in the…
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Day to day living
Man somedays are just so hard to hold it all together when dealing with family, living, doctors, drugs and who knoews what else comes in our life everyday But don’t let it get to you, find something to keep focus on, as for me it is prayer and talking to my Lord everyday. Just don't know where i would be with out my Lord…
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Agent Orange - Tonsil Cancer - Vietnam Veterans
My husband was recently diagnosed with squamous cell carcinoma of the Tonsil, base of the tongue and spread to lymph nodes - in checking information about the possibility of Agent Orange being a cause of this as he does not fit the common risk factors of drinking and smoking I have found that if you contact Mary Burr…
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Montana Veterans with Squamous Cell Carcinoma
Hi all. I've written before, but now I reaching out for help. I've been asked to address a Congretional like panel that will be put together in Billings, MT, to address Veterans Issues in our State, and mainly those of the families, and of Agent Orange and Squamous Cell Carcinoma and Cancer in general. My feeling is that…
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adjusting to change
Had staples removed from neck with no problem. PEG finally removed without hassle of any type of swallow test or verification. What I am dealing with now is that, although I do basically have taste back, my saliva output/creation is so drastically diminished that I have to wash everything down with some liquid, which in…
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Introduction
I'm oldvamps wife, we are thrilled to find such a wonderful support system here. It's hard to understand head and neck cancers, they aren't like other cancers. I lost my dad to bone cancer in 98, my sister to lung cancer in 14 and step dad to cancer and old age in 15, then oldvamp was diagnosed 5 1/2 months after my step…
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Tongue Cancer?
Hello to all and thanks in advance for any comments. Around the holidays, I noticed what I thought was a canker sore. I finally went to my doctor Feb 4th and he referred me to an oral surgeon whom I saw on the 9th. He said it looked like a tumor and referred to to another doctor for a biopsy and I'm going on the 17th.…
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Salivary Glands
Like all of you, swallowing is a major problem for me. With little-to-no saliva, trying to eat breads or crackers or meat is almost impossible because the salivary enzymes that start the digestion process are missing. Biotene products, and the like, don't work on this part of the eating dilemma, they last to hydrate the…
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Two Part, Esophageal Spasms and Eye Probs Post Rads/Chemo
Hi all. I have a two part question. First, has anyone dealt with Esophageal Spasms post radiation...I had Stage 4 SCC tongue with METS to Carotid including 2 lymph nodes. Max treatment. Overdosed on cisplatin last treatment. Now have these Wicked spasms (PAIN!!!) from throat down to mid sternum on occ. Thought it was a…