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ROLL CALL 2014
We survived and are into the year 2014. We had 124 folks who enrolled or checked back in. There were 46 who failed to return and their names have been transferred to the MIA listing. Enrollment is voluntary and is separate from the date you joined the forum. Thank you for enrolling. Please enroll or update your status.…
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Help! doctors disagree on treatment
A little about me.. 52 yr old woman living with 25 year old son and 5 year old grandson. DX is stage 4 SCC primary left palatine tonsil, secondary lymph node in neck and multiple suspiscious lymph nodes in chest. No treatment started. ENT has referred me to radiation and chemo docs. Chemo doctor unsure about starting…
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Surgeon canceled tongue surgery in middle of surgery--now what?
surgeon stopped tongue surgery-now what? in hospital now. Surgery scheduled early this morning to remove half of tongue, rebuild it with a flap (from arm), and have lymph node dissection on one side--this was supposed to occur this morning. Once surgeon got in there and saw that he would need to remove whole tongue, he…
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Year and a half update
Hi folks, Have been doing well since completing surgery and radiation for stage IV SCC BOT HPV 16+ in Dec 2013. Had one PET 4 months after, and am scoped and examined every 6-7 weeks and so far so good. Have about 99% energy back, decent saliva and taste buds. Not sick with a cold or flu since finishing rads, but perhaps…
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Swallowing difficulties after total glossectomy
Hi, I am from Hong Kong, my Dad, 81 years old, has been diagnosed with BOT cancer stage 4A (T3N2M0) in April 2015 and had total glossectomy with flap reconstruction, Right radical neck dissection, left selective neck dissection and laryngectomy on 7 May 2015. He has returned home for recovery since 29 May 2015 and we have…
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First brain tumor from ionizing radiation(not treatment)
Its very complicated situation. Im male in my early 30. I had a head injury at age 8. Nothing serious apart from loss of consciousness for some hours. Later in life I've spent sometimes talking over 8hours on mobile phone with gf, i was only 16. No symptoms of anything, until i started going to load concerts and gigs. I…
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4 Months Out on the 4th
Just a quick update. I know it is only 4 months since my last treatment but ENT sad things are progressing well. He said he thinks we can put this (SCC) in the rear view mirror. That sounds great but at only 4 months, is that even realistic? I don't know but he thinks they were successful with the treatment. Still dealing…
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PET scan
what exactly is a PET scan, how is it different from a ct scan. Why I ask is because I just had a neuclear scan with a radioactive injection. It attaches to neuroendoctrine tumours and lights up. It will only light up these cancers. Is it similar to PET SCANS. the injection alone is very expensive £600 about $900 and has…
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Chemo Treatment Plan - Help!
OK Question for everyone who has gone through this prior and had chemo treatments. My mom has to go through chemo and radiation treatment. We were originally told by her doctor that there would be 6 weeks of radiation and 3 chemo treatments spread out to every other week of the treatment. We were coming to terms with this…
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Mom not doing well
My mom is not doing well. Goes to retina specialist tomorrow to see if the radiation is working on the eye tumor. She is starting to loose weight a few pounds at a time. Losing appetite, coughing a lot and spitting up lots of blood and cancer tissue. The bad thing about going through head and neck cancer with my husband is…
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Post Treatment PET scan - just want to share good news
Got my result of the PET scan. All negative and tumor (NPC) "resolved." Four months out of treatment (radiation and chemos). Report said there is activities detected at the salivary glands as well as "diffused muscles activities." So I take it that the "physiological acitivities" are good things indicating they are…
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Clean bill of health
I am 2.5 years post last treatment for NPC stage 3 (radiation and chemo, no surgery). 2.5 months ago I had a bad infectious otitis media, followed by a nasty vertigo – and this scared me a lot, I thought it was a reoccurrence. The ENT specialist ordered a few tests, CT, MRI, and nasal scoping done by him, and upon…
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Need to make a decsion
I will be 4 years post treatment this November. My last CT/PET was over a year ago. Medicare will only pay for 3 PET scans and I have had my limit. Here is my dilemma. My rad onc does not think it is necessary to have any further scans, but my ENT would like to see me continue with scans up to the 5 year mark. They are in…
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checking in with a few questions
Hi everyone! I am doing so much better than I was!! Thank God! I do have a couple of questions tho. I have terrible xerostomia and my oncologist just doesnt seem to take serious. Anyone ever have a prescription that helped? It just makes me feel that now that I am out of txs and hes gotten paid BIG BUCKS, that hes now done…
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CSN family members meet up in TN
Grandmax4 and I were in TN at the same time and made time in our day to meet each other. It was such a great feeling to finally meet one of our family members in person. I hope this happens for all of us, that we all get the chance to at least meet one CSN family member in person. God bless, dj
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From 35 to 13
I have made it from 35 to 13 radiation treatments left. 3 erbitux remaining. I can still eat some. I have mucositis, It is difficult to swallow. I do have a lot of mucus. But I do have to say, between the radiation tech's and this sites encouragement I am happy to say I am starting to regain hope again. Can't leave out…
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Cancer recurrence
My mom has cancer again. About 9 months ago, she was diagnosed with mouth cancer. She had been complaining for years about a rough, very painful red spot on her gums. Finally it grew white spots and she was diagnosed with Cancer. She had surgery and they removed half of her upper jaw, gum, nasal cavity and part of her…
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Debbie Downer
One of these days I hope to have something good to post. Am back in hospital again. Suspect c diff Angry as was here six weeks ago and they kept throwing antibiotics at me. Left with two or three and couldn't tolerate any. Antibiotics cause c diff. Unable to do water or ensure so little choice than to come back this is…
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Ear ringing help please!
Hi everyone my name is Roger and I have head and neck cancer. I have had 35 rounds of radiation and 3 rounds of chemo with cisplatin. My last treatment of radiation was April 27, 2015 my last chemo was a week before that. The Drs. Don't see anything on my right tonsil or the roof of my mouth which is great but I have to…
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Questions about removal of lymph nodes
Last June my mom was diagnosed with oral cancer in her upper left jaw. She was told by her first doctor to wait it out and watch it grow. Bad idea as by the time she had surgery in October, it had grown by 140%. It was successfully removed, they did a left neck dissection and she was declared thankfully cancer free. 8…
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Hi Y'all
Hi to everyone young and old, I just wanted to let you know I'm still alive and doing extremely well, Dx 2009 Right tonsil cancer, 3 chemo cisplatin and 35 rads. All my tastebuds have now returned, chocolate was the last one to get and saliva is about 70%, I chew sugar free gum everyday I think this helped my sweet buds…
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happy
I'm happy to say I am going from strength to strength since having my blocked bowel sorted. I have been working in the house sorting out cupboards, getting rid of clothes that are too big for me now. Taken about 10 bags of books bits and clothes to cancer charity shop. Today I've been clearing out the shed and back of shed…
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Happy Fathers Day
Happy Father's Day to all the dads in here! Hope you feel the love and support of your family today. praying for healing and good health for all of you today.
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NED!
My husband's had his first PET scan on the 2cnd of this month. NED!!! We were so happy and relieved. The rad onc says that it's the only one he'll have. He said that he'll go in every 3 months for a scope for 2 years, and then every 6 months from 3-5 years. As happy as this news was, the side effects from everything are…
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1 yr still fighting
Hello Hello, it has been awhile since last posting. Must admit the last year is one I would rather not remember. As you see I may look a bit different in the pic. It is funny how bad one can feel yet everyone around you tells you how good u look. I guess my new catagory is survivor at least so far. The after effects of…
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Oregano Oil
Hi Guys , I know I don't post much anymore but I still come here often to see how everyone is doing and see if there is anything I can add to help some of the new comers . I am feeling great just only bothered with dry mouth and throat and not much taste . Still having to fight to not lose anymore weight . My question is :…
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2 year cancer-versary today!
Two years ago today, I finished my treatment and was deemed Cancer free. Two years! I can't believe it has been that long, but sometimes it feels like just yesterday. I owe each of you a huge THANK YOU for the encouragement, love and support shown to me when I was at my lowest points. You all hold a very special place in…
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Chemo Question
Hello all, I am curious about what my Doctor said. Just wanting your opinions on this. I asked him how many chemo treatments I would be having with this new cancer they discovered and he got quiet and then said * When it stops working* but you may need breaks or we may have to try something new later on if it does quit…
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Mucus and Phlem
I have had 4 weeks of radiation and Erbitux so far. The past few days I've been drowning in mucus and phlem. I tried to call the Dr this weekend, no reply. Does anyone now what is going on? Does anyone know any tricks? I was up all night back and forth to the bathroom trying to clear my throught. I feel like I am literaly…
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Wondering about luv4lacrosse...update - RIP Mike
Has anyone had contact with or know how Mike "luv4lacrosse" is doing? His last post - I believe in February - was not as upbeat as I would have hoped. His journey has been very similar to that of my late husband's and I have always been so happy that he has been successfully winning the battles with this damned beast!…