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Head and Neck Cancer

Archives for July 2013

NED is the word
Went in for my results on the pet scan and was told by my doctor that I'm NED .He also stated that I wouldn't have to have another pet scan.I asked if that where true and that i thought i would have to have one every 3 mos. he said usually if your first pet scan came back as a NED then it was around about 90% to 95% chance…
Just got the word....
I got the call shortly before leaving work today. My 1st post treatment PET scan will be next week, Tuesday August 6th, 15 weeks post Tx. It's going to be a LONG day as I have to be in Baltimore by 8am (leave VA a little before 6am) as my appointment is at 8:30am. The test takes 2.5 hours. Then it's off to Speech/Language…
Pretty Scared Here
Hi All. Here's the deal, as many of you know, my brother, who is 54, just finished up his cancer tx. I would love to put down exactly what he is being treated for, but also as many of you know, my brother doesn't really know, or care. He doesn't know what stage he has, he knows it was in at least one lymph node. He does…
Jaw Exercises
Trismus/TMJ is a condition that affects many of us (raising hand) who have undergone radiation and/or surgery. Just like swallowing, "use it or lose it" is the mantra. Here are some exercises given to me by my Speech/Language Pathologist at Johns Hopkins. As always, check with your doctors before doing anything. I have an…
I learned something new
I went to my ENT yesterday complaining about Thrush and sure enough that is what it was. I told the ENT I was sick a few weeks ago and my Doctor prescribed antibiotics. ENT told me that once you receive radiation to the head and neck we will always be exposed to the possibility of getting thrush whenever you take…
Said goodbye to PEGgy :)
I said goodbye to Peggy this morning! It feels so strange to not have that thing hanging around. I wasso grateful to have had the PEG, I don't think I would have survived without one. I feel such a relief for it to be gone, though. The nurse said it looked great, clean and well maintained but that I definitely didn't…
Another Bump On My Tongue
I had stage 4 squamas cell carcinoma in July 2010. I had 90 to 95% of my tongue removed and replaced with my thigh. I also had a double neck dissection with cancer on the left side. They removed 38 cancer lyphnodes. I also had chemo ( CIsplatnim ) and radiation. I had 76 grey radiation. Saturday night when i went to brush…
Husband's 1st post tx PET scan = no cancer
Hi everyone, Like some others, I've been lurking....not much to report until today. the last 12 weeks have been pretty tense. We both feel like a huge weight has been lifted, but we're still not back to "normal" by any stretch. Thom is still feeling better every day, but eating is a bit of a struggle. He's down 50 pounds,…
Roll Call
I was just browsing and came across something they called roll call,i was just wondering where you might sign up for that,plus where is it posted.Thanks for any info
Question/Request
I have heard quite a few people say this on here... that things will never be the same once treatment is over. It may sound silly to ask, but what is it that never is the same again? Is it emotionally, physically, etc... I just kind of want to know what to expect with dad as time goes on... Also, a friend of mine's…
FNA Biopsy Negative
It would appear that the FNA on my slighly enlarged node was necrotic and there were no viable cancer cells...so they canceled the selective neck dissection and said see you in six weeks for my post treatment PT Scan! Great news but still a little on edge about the first Pet Scan... Jon
enough is enough
Since my surgery in November 2011, I have put on so much weight I can't stand it! I lost 50 lbs right after surgery, feeding tube, etc, but now, I find myself at the highest weight I've ever been, even while pregnant for a 10lb,1 ounze boy. The Dr tested my thyroid and it came back normal, I've talked to him about this,…
Restless Leg Syndrome
I have to admit, I used to think this wasn't a "real" thing. I had heard of it and my mom swears she has it, so I blew it off because she is one of those people who has EVERYTHING. Well, I have been proven way wrong. After surgery,they kept those leg compression things on me for the whole 12 days I was in the hospital.…
Rachel ?
Just wondering and hoping that Rachel is ok . I haven't seen her on here in a good while . Has anyone heard from her or talked to her ?
Yet another PEG question for y'all
Since this board is WAY more informative than anyone or anything else...I need to ask yet another PEG question. Peggy and I have gotten along pretty well. She saved me and I'm forever grateful for a rad oncologist who stepped in and ordered it for me. I am having one issue. It's no secret that I want this thing out, but…
Is there a way to search old posts ? / other than clicking through all the numbers at the bottom?
Is there a way for me to search (say my own posts) over the last 20 months? Or even others who posted? If so, anyone know how to do that without having to click through the numbers at the bottom ..lol. Thanks, Tim
PEG gone
Another step in the right direction. Rob got the PEG pulled on Wednesday. Said it burned like HELL for about a minute. He worked up a real good sweat. Walked hunched to the car and was great by evening. Outside pretty muched closed as of today. I wasn't there for it, absolutely thrilled it is gone. He is off all meds…
Thyroid Levels/Blood Counts
It was suggested I have my TSH levels checked. I logged onto my page at Johns Hopkins (why I didn't do it sooner....?) and found that my levels as of 6-7-13 were: TSH 0.50-4.50 mcIU/mL 0.19 I also saw my red and white blood counts and hemoglobin were low as well. RBC 4.50-5.90 M/cu mm 3.20 WBC 4.50-11.00 K/cu mm 3.14…
side effect question
I am going to see my ENT on tuesday but i figured you guys know more anyway so i am going to throw it out here. Question: i think i have thrush but i am not sure. i am not showing the familiar white spots on my tongue, however anytime i drink anything with bubles like soda or a beer or anything with a high level of acidity…
Tim6003 Hello CSN family
Hello to my online family. Man do I miss chatting you all up! I'm hoping to get back on and post more often pretty soon. Mom is officially now in an assisted living facility. I won't pretend she is happy and all is well, in fact she is quite mean spirited and downright angry at me right now, but I know it has to do with…
Anxious
I am just a couple of days away from being 3 weeks post tx. Phlegm and sour throat are the only real after effects I am experiencing. I am not taking any pain meds, minimal throat pain, no peg, eating soft foods and drinking. Managed to put 5 pounds on so far. I am anxious to get back to work (carpentry), and riding my…
Checking IN
Good Morning CSN Buds! Well, it's finally here! I'm 60 today! Checks start next month. I did get approved for the hamp program for my house which is a big plus! Starting celebrating last nite as went to free concert on the square with some friends and will be going to dinner with them tonite to celebrate. Then, tomorrow…
Tim
Tim popped into my thoughts tonight, hoping he's making progress on His Mom's care . He is such a great. gentle Christian man~~pray all is well
Timing of first scan post tx
The MO put the order for a PET and it was approved quickly as I got a call to schedule the scan. I am just 7 weeks post of chemo-rads and want to ensure sufficient time has transpired before getting the scan. Does about 10 weeks seem about right to let the rads cool off and things to be stable enough that a scan will offer…
How to deal with insurance for 3rd opinion??
After week long emotional roller-coaster ride and when you see all hope and faith is fading away. Well we are thinking to get 3rd opinion at M. D. Anderson Cancer Center in TX. The question for all of you is you have experience dealing with insurance on this is… How we can get approval from insurance to get out of network…
Something little, from the heart!
Well everyone...here is what I decided on! Not sure I shared the story of the mustache, but I was quite sad when dad lost his. I've never seen him my whole life without his...so now he can have one ;) Well ... kinda! Lol, hope everyone has a good one and thanks again for the suggestions. Next to me and my time, this is…
they say morbid and radical surgery
This is a first post for me - I have squamous cell - cheek , nose, lip with nerve involvement . Their primary course of action would remove my nose (half missing already), my cheek bone because the CA is following nerve, hopefully not my eye ( "see when we get in there"), and my upper lip. This followed by radiation. I…
Follow up with surgeon this morning
Woohoo!! Got my final path report...NEGATIVE for residual cancer cells! Check ups every 3 months done by EENT and dentist. No scans needed unless something during the physical exam concerns them. Everything is healing very nicely. I still have PEGgy as the surgeon didn't order it, he couldn't remove it. He did say to go to…
Gerson Therapy
Since we are so desperate and confuse and in need for more suggestions we are thinking of alternatives. Does anyone have done Gerson Therapy in Mexico not that we able to travel since we can’t afford it but they also offer online or on phone consultation. Does anyone have any experience with it?? Thanks, Hetal
NED...15 month scan
Woo Hoo!... My 15 month scan was NED!...all is well except the tyroid function is a bit low. The doctors want to wait 4 months to the next checkup and see if it gets better because she said once I start the medication for thyroid I would be on it for the rest of my life. So....I am going to try and eat better. Hopefully,…

Head and Neck Cancer

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