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Lookin' Like A Bunch of NEDs Out There!!!
So happy to see so much good news! Hoping I can add to the joy next week! I was originally scheduled for PET this week but asked doc to give me one more week to cool down. So I get PET next Wednesday and results on Friday. This whole process is so bizarre. One one hand, I cannot imagine anything other than living a long…
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Just back from MD Anderson
Well folks, that was an enlightening experience. They tell me that all in one day was extremely unusual but look at this schedule: 8:30 Met with head of Head/Neck department (he's a surgeon, that's important you'll see later) 11:30 Had video taken of my SCL/bot (pretty amazing) 1:00 Dental Oncology - Don't need any teeth…
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doctors comment -
Well, the doctor did not tell me, he told my husband. We went Friday for his 3rd weekd of rads and he came out and said the doc said he was doing goog with all the side effects but not sure the treatment is doing exactly what they planned. Of course, I question him and he side steps and changes the subject. I know he is…
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Coughing
Hi all, Hope everyone is doing as well as can be expected. I know so many are waiting on biopsies and to start treatment or to finish treatment or to simply start feeling well again so I feel a little silly addressing what may be nothing. I have a question, which is also a concern. I am 12 weeks from rads, 14 weeks from…
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Cleveland Clinic advice? why are things are taking so long in Youngstown?
my dad was diagnosed stageIV A in head and neck lymphs, nodes, submandibular and above where his larynx used to be. he is a total laryngectomee 20 years now and the cancer is back. he is 85. it has been since early summer for the discovery and has been such a long process to this point. his PET and set up with his…
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NED
Just got back from my ENT he had the results of my PET from last tues...NED...I can breath again. See my onco on Wed , then my rad doc on Oct 9th...ENT scoped my throat everything looks great, even the tongue where he removed the small spot. He still wants to see me every 6 weeks...so gladly I'll go. I asked about my raspy…
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Gardasil
A few months ago my rad doctor mentioned gardasil injection(s), he has discussed with my internist,and they agree that I should get the injection(s,) (even thougth I do don't fall within the age category the shots are intended for) since I had the 2nd spot of scc on the left side of my tounge back in June , that was not…
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Getting An Early Scan
Hubby has developed a "spot" at the back of his tongue that the doc wants to scan. Dale is 7 weeks post tx for stage 3 tonsil cancer. This "spot" won't go away so the ENT has decided to do a CT scan next week. Mouth sores were about the only side effect Dale did not have during or after his 34 rads and two rounds of…
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How do you clean your teeth outside home
I start working next week and wondering what will be best way to clean my teeth at work. For me just brushing the teeth does not take away all the food from gums. I have to use waterpik at home. Would be great if you can give my any tips from your experiences, I have seen that gargling with warm water seems to dislodge a…
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Dental visits
Hello everyone, from what I read most of us have our teeth cleaned 3 to 4 times a year. My insurance only pays for 2 cleanings per year, how do you get them to pay for all the cleanings we need?
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New here and wanted to say hello
I was diagnosed last week with scc, and came across this site and found it to be informational and supportive. It is great to see the multiple year survivors, and that gives me hope. I am having to wait until next Tuesday to talk to my oncologist. I am very concerned with staging, and trying to locate the spread. Seeing…
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FIRST FOLLOW UP WITH RADIATION ONCOLOGIST SINCE TREATMENT ENDED
Went to the doctor today for my 1st followup since ending radiation and chemo. He said I was doing great. Didn't scope me but looked in my mouth and throat and felt my neck and said everything looked and felt good. Get my feeding tube out next Wednesday since I haven't used it in 2 weeks and have maintained my weight. Pet…
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Possible New Cancer and/or Metastasis !!??
Hello all, I am totally freaking out. Over the last three weeks lumps started forming under my skin. The first one was under my scalp and a nurse told me that it was an ingrown hair and to apply a warm cloth to help. Then one showed up just to the left of my belly button. then one under my left breast. I alerted my…
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OHIO HERE WE COME
Hi everybody me and my family are taking a much needed vacation to NorthField Ohio we fly out today there be time spent at the club which will include a clam bake yummy,some ski shooting,the zoo and whatever else we can find to do my uncle is a 33 year survivor of vastecular,testecular,lymphoma cancer at the age of 22 he…
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Thought I'd add to the NED posts!
I switched ENTs. I was really unhappy with the one I've been seeing. I am so happy with my new Dr! He was really well versed in my type of cancer(ACC) and he wanted to have an MRI done ASAP b/c I had never had one and my cancer tends to spread along nerves. Spent over an hour in the tube because the MRI was for my brain…
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NED!!!
Jason had his first PET scan post treatment for oropharyngeal scc last Thursday and got the results today. His doc said the cancer is gone! Such a relief. The treatment was ROUGH, as you all know, and it's amazing to come out of it clear of cancer. Follow up scan in 6 months.
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SMALL PORTIONS
I am 5 weeks out now and have been fortunate to be able to eat without to much of an issue. Although I have not tested many of the foods I ate before being dx with cancer and treatments the ones I have are ok. My question is how long did it take to eat a full portion/plate of food. I used to eat a full plate of food and…
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another NED
I am six months out from finishing radiation and had my second CT Skan. It was NED....all looks good. The 3 lymph nodes on the left side of my neck have gone from 12mm to 7mm. They are no longer larger the normal. They are shrinking and they suspect all that is left is scar tissue. I am feeling great. I feel like I am…
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Crazy hospital
Well David is supposed to have his surgery tomorrow using the Davinci robot. The problem is they told us we would get a call this evening to tell us when we need to be at the hospital and where we need to go tomorrow. OK it is 10:30 and they have not called us. I am concerned that maybe he isn't on the schedule after all.…
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CSN ~ What It Means To Me.....Share Your Story
I've been thinking about this lately, and myself and some close survivor/caregiver friends have been discussing these same things. What CSN Means To Me CSN is a place that I find comfort in... I can vent, I can share, I can throw out things in my life that are cancer related, survivor related, or just life after…
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NED (and: a song for all y'all)
Had another PET/CT scan result today. As with all the others (with the exception of an initial false positive confirmed as such by biopsy) it was NED (oddly, none of my actual reports have ever used "no evidence of disease," but it's the accepted shorthand here), thank heavens. While en route to the doc office, in the…
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How long did it take to eat spicy food
I am 9 weeks post rad and can taste most things ( sweet is less) but cannot handle even 1% spicy. Anything spicy really burns my tongue. Flouride stings too. How long will flouride sting and how long for spicy food. I know everyone will be differnt but just looking for some examples so i know what to expect. Thanks, Sam
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Esophagus problems
I just had my 10th treatment of 2 GY and am having a big problem with my esophagus swallowing food. They gave me a med for taking just before eating and this helps a little. Not enough. I have had Gerd for 40 years and worry that this treatment will cause cancer or Barretts in my esophagus. I have no sores or breaks in my…
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Davinci surgery Thursday
My husband goes in to have the primary cancer, which was found on the right side of the base of his tongue removed using the Davinci robot on Thursday and to get the feeding tube placed. We have been anxiously awaiting getting started, now I have to admit it is all getting so real. I guess it is time to saddle up and be…
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jaw replacement: bone alternatives
Hi There, My father was diagnoised with oral cancer 4 1/2 yrs ago and he underwent lower jaw replacement surgery (where a bone from the leg was removed and fitted in lower jaw) followed by radiation theraphy. All his teeth were removed. He then had a few plastic surgeries in an attempt to get dentures. That failed, and it…
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My Voice Saga
Visited my voice therapist yesterday, and she got my voice prosthesis working again. For those that do not know: I've had my voice box removed and had a tracheal-esophogeal puncture (TEP) at the time. A one-way valve is fitted so when I cover my stoma (hole in the neck) air is forced into the esophagus, which vibrates to…
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I'm praying NED come November ?
First and foremost thanks for all the prayers ! I am soooo relieved I switched clinics and now have an onc, that knows and works with my dx. He won't say for positive until my next PET in November but is leaning towards no evidence of disease. My dx will return eventually, (no clear margins, and perineural invasion) and he…
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Pain medications can be a pain. An update
I apologize for the delay in my updates but it’s been rough It all started with last week’s infection had doubled my throat pain. so I increased my pain medication, when the pain subsided i simply quit taking my oxy, which threw me into almost a weeks worth of withdrawal symptoms i didn’t realize that stopping my…
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Swallowing
I finished my last radiology treatment April 12th (squanamous cell base of tongue, surgery removing cancerous lesion, both tonsils, and 4 lymph nodes,then 35 rad and 7 chemo). Since then I've gone thru 2 sessions (15 treatments each) of Vital Stem Therapy and still having trouble swallowing anything with any texture other…
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Long time no write! Have a question about a problem...
Hey gang! BFD here and while I haven't posted in a few months, I guess that's kind of a good thing. My "success story" continues. In remission and NED for 20 months now, approaching the 2-year mark, and that's good. Fibrosis down around 90%, L'Hermittes gone, range of motion back to normal thanks to my great chiropractor.…