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Hi everyone, this is different
I think something is ?
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Me either...can't reply...
They're probably still working on it....hope so, cuz it's slower than before if it doesn't kick me off. p
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Nope, no replies and just as slow (if not slower)
Tomorrow is another day. Goodnight all Joe
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will not
new site.... does not let me post a reply to any post new site is just as slow as the previous thought i would check to see it allows me to put a new post here goes john
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Glad the CSN site is back!
I must be a CSN junkie; I missed it although it was off for only a day or so. I noticed a couple of things that I found useful with the previous format and (apparently) are missing at this newer version. Firstly, I can’t see the user picture. Secondly, I can’t seem to perform a search within the Head&Neck forum (there is a…
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Much better
Much better
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Ned too!!!
Had my 2nd CT with contrast and throat scope and all is clear for which I'm thankful!!!! However, I questioned my Dr. and as I had feared, if this recurs, I will have a trach for which I am almost hysterically fearful!!! I know I could live with it, but the thought chills my blood!! I don't have any risks, so I'm very…
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first restaurant trip
5+ months post treatment, finally bit the bullet and ate in public tonight. wish I could say the eating part was fun, but points for trying anyway. ;-) taste was working OK, but the trismus is not fun. got down some seafood soup, a bit of pork fried rice (had to spit out the pork, yuk), and one jiao-dz (steamed…
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acute paronychia from erbitux
for those who care about such medical geeky things, I've just learned the technical name for the dreaded "erbitux nails". also sometimes known as "felon" or "whitlow". did a search of these boards for "paronychia", and didn't get a single hit, lol. my docs didn't give it a name either. but there's actually quite a bit of…
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Cutting through the Mucus/Flem
In my last post I was explaining that we have completed tx and our instructions were to start swallowing food and drink without the use of the PEG. Because the mouth seems so sore, it's been rather difficult to start this transformation. As I'm trying to help encourage my loved one that he must do this, I've been watching…
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9 months NED
Fellow H&Ners, I am happy (ecstatic) to say after a call this evening from my radiation oncologist I am officially “NED in the head” . She said my PET/CT scan results were beautiful and it was all good. To be doubly sure I had an exam by my ENT (throat and lower tongue scope, tongue pull to gag and neck feel all-a-round)…
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The Upgrade is Coming!
Not sure if anyone noticed Greta's post, there was one also on the CSN Home Page... The Upgrade is Coming! The Cancer Survivors Network is being upgraded. The site will be down from Thursday, December 20 at 9 pm Eastern Time until 9 am Eastern Time Friday. The upgrade will improve functionality and provide a few…
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CSN Planned Outage
CSN will be down from 9 pm Eastern Time Thursday (tomorrow) until 9 am Eastern Time Friday getting a badly needed software upgrade. You will notice a few formatting changes and enhancements. Most importantly, site functionality should improve significantly. Regards, Greta aka Your CSN staff
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Cisplatins side effects
Hi everyone! We are officially on the bus. They changed the plan for us and have decided against 3 high dose cisplatin in favor of 7 weekly low dose cisplatin. My husband has always had hearing loss and ringing in one ear since he was nine. They didn't want to risk it with high doses they couldn't take back or change…
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On My Way
1) I've made an appointment to get a 2nd opinion. It is in the early part of January. I do not post exact dates on public forums. Not because of you, my friends; but because you never know who is reading this. The appointment is with the head of medical oncology at Seattle Cancer Care Alliance. 2) On on my way with the…
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Christmas goodies
Hi all: Been burning some midnite oil here getting ready for Christmas and all. Will be leaving Sun. for NC with Chargee in tow for Christmas. Will be a short stay as will be back home on Wed. But am off all week and truly looking forward to that. Had a tree disaster Sun,. nite as my Christmas tree fell and the base broke…
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NED
My 9 month CT Scan was NED!...Yea...all looks good! A wonderful Christmas present. Ann
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Transformation of eating and drinking through mouth..
We are now told that the swallowing of both food and drink MUST start through the mouth soon. Swallow, Swallow, Swallow were the instructions. As a caregiver, how do you convince/encourage your loved one to start doing this. He says it's way too sore in his mouth and his tongue hurts badly to drink anything, let alone try…
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My heart aches
I haven't posted this to caring bridge as I want David to do it. We had a very sobering talk with our doctor today. I told you he consulted with the lead person in the field of PPCL last week and was encouraged to change his course of treatment. David has been feeling a little better and started asking me questions last…
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Radiation Treatments
My husband has been diagnosed with cancer of the Vallecula and is in his third week of radiation treatments. I’m curious to know if anyone that has had or is having radiation treatment ever had problems with the machines at the doctor’s office. Out of the 11 times he’s been five of the those times the machine has broke…
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How much quality time while undergoing treatment?
Hi all, I searched and read and read and did not find much covering the amount of time each day one could call "quality" time. That is when your mind and body are working well enough you can at least surf the Internet or maybe even write some emails or post an update here. Of course, each person and treatment plan is…
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Two Accomplishments
Two accomplishments today: 1) I ordered a Grande Soy Mocha and did not have to repeat myself. The Barista got it the first time. (The reason this is an accomplishment is that I have had my vocal cords removed and talk by esophageal speech.) 2) I ate peanut butter. (The reason that this is an accomplishment is that my…
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How much pain relief using cannabis?
Hey, the Bay Area is hella expensive but comes with fringe benefits such as the Pacific Ocean, cool breezes and cool summer fog, superb scenery, Silicon Valley, and birthplace of medical marijuana aka "Oaktown". Getting a card is as easy as getting a six pack so I looked but did not find much commentary how well it works…
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Things are better left unsaid....
I realize that some people in the outside world of cancer are/can be lost for words when approaching someone they know that is dealing with cancer, but....wow, can't believe what the last couple of days had brought us. Finally got my loved one out of the house. Trying to get a little bit of normal back into his life. We…
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throat checkup
Had my visit with the videostrobe and ENT today, everything was normal, no change, will see him again six month. I have had a lousy October and November, in hospital for over three weeks altogether. I had lung surgery in October to remove a small cancerous nodule, I was given the option of wait and see for six months and…
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water\salt\soda?
What is the recipe please. How often? They told me at the Cancer Ctr and I thought I wrote it down.... I'm just good like that. Luke
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Chicken Or Egg?
First, forgive me if I have asked this question before. I am now past addlebrained. What seems to be the standard protocol? Rads and chemo first or surgery first? Original onc says teeth pulled, then rads and chemo, then surgery. MDA seemed to lean toward pulling teeth during surgery(strange to me), and then rads and…
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HAD MY ONCO VISIT EARLIER TODAY
I saw my Oncologist earlier today, and he validated what I had already heard. No visible signs of any tumors from the CT scan. He also thinks that since the large tumors melted away, he is confident that the tiny ones in my nodes in Mediastynum are most likely gone also. Due to the severe side effects from the 5FU, he is…
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The dreaded week III
Well, today is the last day of week 2 of treatments, 10 rads done, and 2 chemos (23 and 4 to go). And, week three has started - everything they told us it would be is happening now. Over the weekend Dan's throat started to bloom with mucositis - he can't swallow the Mugard - it gives him stomach aches. The ENT said today…
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Happy Holidays
Hello Everyone, I wanted to send all of you holiday wishes,prayers and hugs. Today is my last day at work until January 2nd and I do not have Internet at home. Please know I will be thinking of all of you and praying that you get to have a warm and safe holiday with your families. Thank you for eveything you have done for…