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Update, not good news and perhaps someone can make a suggestion on an Erbitux issue
Well folks, the beast is back, and for the second time. This time there's not much to do about it. It has metastasized to my lung(s) and more disturbing, it is back in the muscle under my tongue. The reason that's more disturbing is there is absolutely no therapy for it. The only good news is it looks like I'm the "poster…
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If I can do it so can you
I've been saying for quite some time now that if I can do it anybody can do it. Yesterday I went to see my surgeon for my 5 year check up. He scoped me and said I am officially cured. So again I say..............."If I can do it anybody can" I may even pull out my radiation mask on March 30th (my 5 year anniversary of…
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Hypothyroid Free T3 & Free T4 Testing?
Finished chemo/rad 9/5/14. Thyroid TSH was in the normal range until December 2014 when it went up to 5.02. Dr. Prescribed Levothyroxine 50 mcg. Thyroid damage from radiation (thanks a lot!) My chemo treatment consisted of 5FU & Hydrea. The 5FU caused hair thinning. However, my hair was falling out at an alarming rate even…
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Surgery this week
I will have surgery this coming Wednesday. The plan is to remove the fibula that replaced half of my lower jaw 3 years ago and hope the fistula will close (80% chance). Hinge is original and will remain. PET scans have remained clean, next one late February or early March. Cosmetically, that area is already a mess so at…
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Water and food
I am half way thru my radiation and the last 2 days I have been having to put water into my peg. Its not that Icant drink it, it just tastes soooo bad. Also I am NOT sleeping even with sleeping pills=maybe 2 hours a night. My dry mouth keeps me up. I have the Biotene and Stoppers 4 and it seems nothing I do gives me…
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Peg???
I am having such a time with my feeding tube! I had this put in Jan 5th and since then I have gotten an infection( am on antiobotics for it) and also it leaked alot. I mean some ugly stuff was coming out of the stoma. Stomach contents. Any how yesterday they were going to change it out, but discovered instead that it only…
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I need to give credit to Stanford Medical again...
I just need to give credit to my Doctor and the team at Stanford. For the last four days I have had a problem with the prosthesis in my neck so I can talk. It has been leaking down the center of my TEP [prosthesis] which means that I am asperating and liquid is going down my trach to my lungs. My GURD is the main cause of…
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Neck Dissection
Hi all, this is Tammy, wife to Dale. I posted awhile back but lost my user name so I had to just now make up a new one. Not sure if you all rememer me...him? Dale had stage 4 throat cancer and is now 4 years cancer free. Along with chemotherapy and radiation he also had a radical neck dissection. The usual stiff and tight…
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Coconut Oil
Have some of you tried "pulling oil"? If so, did it help in any way. I've read much about the benefits. If your suffering from dry-mouth from the rads, like me, and most of you I'm sure, doesn't swishing this oil for 15 or 20 minutes draw out what little saliva is in the mouth and make it even drier or worse? Is it worth…
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Lung biopsy update "there's good news and bad news"
Jim's surgeon had him come in today for his post surgery x-Ray. He also had final lung biopsy results. He said he didn't have confidence in the first lab results, so the sent his samples to The University of Louisville, which is the lab that found his cancer 3 years ago. They compared it to his slides from 2011 and…
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Green Tea
https://www.yahoo.com/health/green-tea-may-zap-cancer-cells-in-your-mouth-109500145432.html Now if they would only tell us how much to drink per day and can it be decaffinated
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My Journey with lower right tonsil Squamous cell carcinoma, 1 year out Clean scan 1.27.2015. last po
OK, here goes, This is long winded. sorry, Early to Mid May of 2013 my wife,Terri made me an appointment at the Dr. for a check up thinking sleep apnea was an underlying issue that was causing me to stop breating for short periods while i was sleeping. So when I went, we ended up doing a follow up with a ear/nose and…
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"Your scan looks good...but"
I got my results today from my first CT scan and I have a reactive lymph node under my jaw on the opposite side of original cancer. My onc says there is no way it is reccurrance from the tonsil. It is either backed up lymph fluid (neck dissection removed 40 lymph nodes on opposite side) or it is a completely new cancer.…
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Check In
Hi all. Although I have not posted of late I still read the board most days. Saddens me there are new members but also great to see all are taking things head on. This board is such a powerful tool for those in the fight, those helping and well anyone really! I am coming up two years post treatment for a SCC on my tongue.…
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Need advise on scan
Hello today I went to see my ENT for my first check up and he was very pleased with my progress . He said my nerve regeneration is fantastic and normally he is not a guy that gives compliment so I was very happy. When I asked about what to expect as follow ups he told me he will be seeing me every 3 months. He did not…
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Radiation Scatter
I wonder if there are others out there who are dealing with radiation scatter. I'm about 4-1/2 months post radiation & chemo treatment. my treatment was to the left side. I've had surgery to remove the primary on my tongue 16 months ago so that side of my tongue is pretty much numb. I'm experiencing pain on the right side…
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Is anyone a patient at Santa Clara Valley Medical Center/ Sobrato Cancer Center?
Hi, My mother is currently a patient at Santa Clara Valley Medical Center. She was diagnosed as Tongue cancer on Sep 17 through biopsy. After MRI and PET/CT Scan, it was said to be in stage I/II so she was scheduled for a removal of tongue and lymph nodes surgery on Oct 16. However, after the surgery, the doctor said it…
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Anyone heard from Pat, aka "Longternsurvivor"?
I have not been on CSN much lately but have heard nothing from pat on PM. Has anyone been in contact with him? Mike
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"Complete Response to Treatment"
We don't have a scan yet but these were the sweetest words we've heard yet. From the Oncologist after the manual exam on Thursday!! It's been a very rough go since the last treatment but Bob continues to be strong. Our order of Liquid Hope arrived today so we are hoping this will help his body be stronger for what we hope…
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Hi Everyone...
Hi everyone, Haven't been on due to watery eyes. Doc says it's a good thing, so trying not to complain. Decided they are going to take my PEG out instead of moving it, as I am eating a little on my own now. I am not going to have it moved lower, as I was warned that there is a great chance of infection if I do. I don't…
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neuropathy hand
Almost 18 months post treatment I had both Chemo and radiation, The neuropathy in my right hand has not gotten any better fingertips hurt very badly outside in the cold. I was just wondering if there is any medication that can be given. It has also gotten very hard to button shirts or in my case splice cable back together…
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Tonsil Cyst
Hubby had a good scan on 11/09 after treatment for hpv+16 SCC of the trachea. For the last couple of weeks he hasn't been feeling well (cough, congestion, sinus stuff...). We have a little one who brings all kinds of disease into our home from daycare. Anyway...today he woke up with a sore throat and tonight he discovered…
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Advice Needed! UPDATE
Thank you to all the wonderful people on this board.... I wonder if I could get some feedback please? I'm just 4-1/2 months post chemo (5FU & Hydrea) plus radiation (35 treatments) 7 rounds for tongue cancer. Surgery to remove left side tongue cancer 16 months ago. 2 surgeries to move affected lymph nodes, then tx.…
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winding road
IHello. I have been lurking for sometime now, I have a couple of questions.I am travelling the winding road with my dearest friendand though I have done my homework, I am looking for some experience I guess. Summer of 2013 she was dx stage 2 throat cancer. 7 weeks of rad with excellent results and hardly missed a beat. her…
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Lung biopsy results
Jim had his lung biopsy on Wed. Just got the results and it was NO CANCER! It was a benign granuloma, which means he is NED now for 3 years! We are so happy and relieved! Thank you for all your thoughts and prayers!
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Checking In
Friends, Been a while since I stopped in last...with two teenagers really dont have time to stop. It will be two year this April but had my last checkup at MDA Houston mid January '15. Physical exam and CT Scan with NED again as I slowly inch toward that wonderful two year mark (April 16 2015). MD's were very pleased and…
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Tongue continuing to be very swollen after Feb 2012 partial glossectomy and follow up radiation/chem
Hi everyone...I am writing to hopefully find some answers and/or support that I can bring back to my Dad. After deciding on a partial glossectomy (late Feb) to treat his tongue cancer (2 prior smaller sugeries, a first round of radiation and a chemo-like treatment kept it at bay for less than a year the last time), my…
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Touch wood
touch wood, I've been on a new formula Vital1.5 for three days. Day one my swollen tummy went down by half and no gas or pain. Same day two and more energy. Day three I felt so good went for a short walk. I'm hoping to continue this way. It's early days but I think at last ive been given a formula that agrees with me. I've…
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Half Marathon
I dedicate my first Half Marathon to the dear people on this discussion board. All is well with me as I ran my first Half Marathon on Sunday. It wasn't easy but I was thinking of what we all go throught, and how blessed that I am to still be here to do this. May victory be with you who are still fighting cancer.
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Lung Biopsy
My husband and I saw the thoracic surgeon this morning to discuss the 2 spots on his lung. He feels that the most probable case scenario is that his jaw sarcoma has made its way to the lungs. Good news is that its very, very small and we've caught it early. The plan is a lung biopsy on Wednesday, which will require a 3-4…