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We might be going here again
My mother was diagnosed with Stage IV cancer behind the tongue in July 2010. After finally getting her some medical coverage they were able to start treatment. They tried a combo of erbitux and radiation but due to complications with the erbitux and other chemos she was only able to complete the radiation. After all the…
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Anybody else on a PEG permanently?
My diagnosis: no food or drink by mouth - ever - no chance of recovery of swallowing (nerve damage). I've been on Jevity 1.5 for about 6 months and am doing really well. I can do pretty much everything else I want. Questions: Who else is on PEG permanently? What are your attitudes, worries, etc about never eating again? I…
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Increased anxiety
It's so odd but now that my husband is nearing treatment my anxiety level is at an all time high. The dr scheduled his first post treatment head/neck ct in January and since then I am more anxious and emotional then ever. I guess it's the realization that nothing, not even all this treatment including surgeries x 2,…
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Well...there goes my thyroid!
I just had my first blood work and physical since the end of treatment. Treatment ended about 28 weeks ago. This was all supposed to be routine and to get a baseline after the completion of treatment. I have been tired since finishing rads and erbitux but just assumed it was to be expected and I still believe it is very…
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Our caregivers
Our caregivers have it hard, at times I think much harder than we do. Sure, we deal with our disease and all of the ‘wonderful’ impacts from treatments, but I honestly think that they have it worse. They take such good care of us, and they have the additional burden of worrying about our and their futures. My wife was…
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Atelectasis
Hello everyone...I rarely post but have been a "long time lurker" and follow along with many of you! My husband was dx in 2010 with stage 4 base of tongue scc and was treated with chemo, rads followed by neck dissection. todate all of his follow ups have been positive, however on the last 2 ct they have noted "bands of…
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Introduction and chemo/Erbitux question?
Hi Everyone, My mom is 66 yrs old and has been diagnosed for a 3rd time with Head and neck cancer. She was first diagnosed in 1994. Had neck disection, part of tongue removed, and radiation. She did great (was able to talk again eat etc)and was cancer free until July 2012! We are lucky we had 18 yrs with no cancer!! July…
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PEG tube issues?? Here is what worked for me
As most of you know I struggled with nutrition most of my treatment. I was able to use the medical food / formula then all the sudden became intolerant, same with milk, lots of nausea. So I started making gruel out f malt o meal, and it actualy helped, I am now moving to baby food, and although I have to push it through…
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First time in 24 yrs I forgot our anniversary
Hey everyone ! I can't believe it, but my husband pointed out that this Sunday will be our 24th year together. So much stress, I just started apologizing then crying, then laughing. We will be spending the day at home, with a nice dinner and rent a movie. I just want to hold him....and realize today is good. He is my…
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What food should I try?
I am four weeks post treatment with a peg tube and trying broths, cream soups, milk products are bothering the sores in my mouth so staying away from them for the time being. Should I try soups like vegetable need and see if I can chew and swallow? Or something else, I'm scared. I swallow fine but what if it gets stuck.
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Financial assistance???
I have been out of work since May 23, 2012. I used up all my FMLA and am now struggling to pay my bills and rent. Even close to being evicted because I have no money. I've been reading thru here and have read a couple of things about social security and some sort of allowment they have for people with head and neck cancer.…
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Bleeding?
I haven't seen this addressed on here just wondering if it's abnormal. Just finished Tx #12 of 35. Occasionally at night I'll wake up with a blood soaked pillow or hack up some blood during the evening. Discussed it with my Rad Dr and she says it's normal. I just haven't seen any one address that on here and was curious to…
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Terrible smell toward end of Tx....Is it from the Radiation?
Hi Everyone... So now he says he keeps smelling something terrible...like a sulfur smell...just terrible. Is this just the effects from radiation? Or could it be from the prescription cream they have him putting on his neck. He says no matter where he goes he smells it and it's making him sick to his stomach. He even kind…
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rad/chemo possible at local hospital and follow by major cancer cancer?
I am wondering if we choose to go with Dana Farber, can we get daily rad/chemo locally or do we need to travel each day for that? I'll ask the MD's but figured someone here would know. Thanks.
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Tongue Cancer Returns - Male / Age 52 - Treatment options?
My dad is currently 52 years old and two years ago he was diagnosed with small N1M10 on his left side of tongue (Stage 1 – squamous cell carcinoma). At that point he was treated with Radiation (33 times - tongue and neck area). Since then he has been in recovery stage, however he has always had discomfort in his tongue. At…
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Jaw reconstruction at Moffitt or MD Anderson Orlando
I live in Florida, have stage 4 of mandible and floor of mouth. Wondering about anyones experiences with jaw reconstruction at Moffitt or MD Anderson Orlando. Thanks
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SURGERY COMPLETE AND NOW HOME
Hi All. I am KTeacher's sister. I am reporting to you on her surgery, which occured last Thursday, and her recovery from same. The oncologist removed her eye and much tissue surrounding the eye and orbit area. He followed the optic nerve back as far as he could. Reconstruction surgery went great. The microvascular plastic…
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Tomorrow is my last treatment, then on to recovery, recieved a very sad phone call a few minutes ago
Well tomorrow is my last day of treatment, and doing relatively well, but just received a phone call from my oldest sister. She told me she was just diagnosed with stage 3 SCC with a primary tumor on the tonsil, with lymph node involvment on the same side, where as mine was same except stage 4 because of node involvement…
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Hi All...Just Catching Up
While I haven't posted much lately , I do look at the site, see old familiar names and new . I've been busy since I went back to work full time. Travel for work takes me to northern AZ weekly, I have a 100 mile buried fiber optic project going on , so that keeps me rather busy. I'm in MD right now, flew in yesterday , will…
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Acupuncture
Hi All, I haven't posted as much lately, just being busy with life and some light treatment. One of the last posts I made was about how well Acupuncture works. Most of the responses were positive so I gave it a go. Didn't help at all. The problem I have is when my Dr. did my rt neck dissection he disturbed my scapular…
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PICC line to be or not to be
Well David had his PICC kind inserted early Tuesday morning and every afternoon since they have had to redress it because he keeps bleeding. I'm not talking about a trickle here a trickle there but soaking through the dressing and his shirt. Today the chemo ONC came in and said if they can't get the bleeding to stop this…
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Long 3 week trip
Hi all, have not been around for a while, was locked up in a hospital bed. I had a small piece of my lung removed at Hershey, all was good until I got Atrial Fibrilation, I was kept another 3 days. The left the catheter in with instructions to have my urologist get it out. I left the hospital. When I met with my urologist…
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Neck muscle spasms
Hi All, It's been a while since I've posted. I finished radiation and chemo for nasopharyngial cancer in May of last year. It's been good so far with negative CTs and exams. I am truly grateful. Most of taste has returned and saliva is at about 70%. I can lick a stamp and envelop! Of late, however, I've noticed…
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Blood work results
OK so most everyone knows David was unable to do chemo today. I got a copy of his blood work from today. There was more wrong than right. Low RBC/Hemoglobin/Hemocrit/Platelet County/Chloride/CO2/GFR High WBC/MCH/MCHC/Metamyelocyte/Myelocyte/Reactive Lymp/Monocyte/Plasma Cell/NRBC/Abs. Plasma Cell/Glucose…
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how to start eating again
hello to everyone On 10-24 my dad finished chemo and radiation treatment (33). He had the feeding tube put in on 9-28- and that has been his only source of nutrition throughout his treatments. Now that he is done and trying to swallow he wants to start drinking and eating. I do not know where to start. What are the best…
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Possible Side Effect Assistance (Head, Neck and Sinus)
Possible Side Effect Assistance Head, Neck and Sinus It's been 3 years since my radiation and chemo treatments ended and I was pronounced amazingly healed for the moment, as we all have learned to avoid the CURED word! Since then, like many of us have suffered with post treatment side effects. Mine are constant dry mouth,…
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need resources for financial help
I am desperate and don't know were else to turn too does anyone know an organization that can help with rent? My husband has not drawn a paycheck since April 2011 and we have been living on one income we are seriously behind in our rent and I have looked everyone for some assistance. we live in a two bedroom apartment for…
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more delays
I took David for chemo today and they are postponing again until the 29th. His bloodwork was not good and his PICC is continuing to bleed. They are giving him IV fluids/minerals and shots of B12 and vitamin K. They want IV fluids 7 days a week at home and keep an eye on the PICC. They said they may need to change his…
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For those of you that had Erbitux
Just had my third round of Induction today and was advised that concurrent with the RADS I'm going to get Erbitux. They also told me to expect an acne type rash just about everywhere. So, to you folks that have lived through it, what am I going to need to cope with this? I'm working really hard not to buy tomorrow's…
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Mandibular Sarcoma
I am re-posting a reply I submitted the other day. I am wondering if anyone else has experience with this diagnosis? It is less than 3% of all head and neck cancers. Here's the post: My husband had mandibular sarcoma that was diagnosed in December 2011. Total shock to us, as he has never smoked or chewed tobacco. Little…