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Contact name at MD Anderson
have someone needing a 2nd opinion at MD Anderson-Houston. I know several folks were treated there, but can't remember who. If you have a contact there, pls send me a private message with dr. name and number. THANKS SO MUCH. Ingrid K
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Can't tell if hungry or full
I'm now 4 weeks out of radiation... and this has been happening since about half way through the treatments. I NEVER feel hungry at all... and on the other hand, I can eat a HUGE amount and feel no different, as if I haven't eaten at all. Now that my mouth is healing a bit and I am able to eat certain foods again... I can…
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Skiffin...
Lovin' the new pic!
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been a year since diagnosed with npc
Time flies when you have so many doc's appointments. Last year this week, I was told about the bad news - NPC Stage 4 and was told I had roughly 40% survival rate. After the biopsy came back which shows EBV, doc told me my prognosis is better, survival rate increased to 50%. I went through some emotional roller coaster but…
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Last radiation today!
We leave in a few minutes to head to the hospital for Jason's last radiation treatment! So glad it's over, hopefully he'll start feeling better soon. He's really struggling with all the mucous.
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Post -cancer blahs
Hey Everybody, This is my first time writing. First off, congrats to all of you who have beaten the beast. And the best of luck to those of you who are still engaged in the battle. I was diagnosed with HPV positive squamous cell carcinoma last July. The tumor was on the base of my tongue and metasisized (stage 4) to my…
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Got my new chemo plan, today....
For the next three cycles I'll be getting Cisplatin at 80% of my past doses...and I will have a 5FU pump for the 4 days following the Cispatin infusion...then off for 3 weeks. I've lost a total of 5 lbs during the first part of treatment, my Onc says that is great...even tho that puts me at 88 lbs, it's almost unheard of…
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Truly a Basketcase again
Hi all: Thought I'd check in. Thurs. the 28th was/would have been our 37th anniversary. It was a bittersweet day as June, July, and August are tough for me. Tomorrow is 2 years since we found out it was back and the 8th is two years when we found out how bad it was and of course the 27th is both of our birthdays! Anyway…
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PEG TUBE FITTING
I'm having a PEG Tube fitted on Monday, and am absolutely scared to death. They have told me it's a simple procedure performed under sedation, and yet they insist I stay for 2 nights in Hospital! I understand the rationale about having one fitted at this stage ( 2 weeks into treatment)as an Insurance against not being able…
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good news finally
Some of you know, my husband, Andy is fighting a metastasis to bone and liver. As you know, his cancer is no longer considered curable, but treatable. He has been on various treatments and in one clinical trial that worked for months but stopped and he showed disease progression. He has been on a new regimen and we got his…
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Denture fit and swelling....
Hey everyone ! Was wondering if first anyone having issues with this. Granted Dentures are very new in my world (3 months) But some days the teeth fit mint...but when my lyphedema is worse, they either make me gag...and hurt...and on days that swelling is down they slide around and have to use the gookie stuff to keep them…
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keeping me in the dark...
Hi everyone, Just for a background, I'm married to my HS sweetheart of 20 yrs. The 'love of my life'. Well 3 yrs ago he was diagnosed with stage 4 Squamous Cell Carcinoma, rt tonsil and 1 Lymph Node. Chemo/Rad(Cisplatin) cocktail worked great, he lost 42 lbs but made it thru with flying colors. It was a rough 4 months but…
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My Husband Lost His Battle - Father's Day 6/17/12
Some of you may have seen this on Facebook - others not. My husband lost his battle at 6:37 am on Sunday morning - Father's Day - 6/17. He was doing so well - had finished his treatment (this was his third battle with the beast) - was recovering well, had trache and picc line removed, and was getting his energy back. He…
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I am home from surgery with great news!!
Had surgery Tuesday morning at 8:30am, I came out about 11ish. I was in recovery for about two hours because I was so out of it. The Dr told my family he had taken 25 lymph nodes from the left side to check for cancer but said they all looked good. Dr told my family we should know by then end of the week of the results.…
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Has anyone tried this? I'm desperate over here.
http://www.delightwater.com/
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Hanging in there
Wow, it can be really tough to stay positive when you're dealing with the mucus. It's been making me throw up, and it has had a big effect on my nutrition and hydration. I'm trying to give myself extra water each time I do my meds (every 4 hours) but I'm eating so little that I'm really dropping weight. I know I had the…
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Where is Sweet?
I have not been on the board as regularly these last few months but noticed there are no responses or post from Sweet. Anyone know what is going on with her? Debbie
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optic pressure in both eyes
Hey, Just an update...saw opthamologist this afternoon. Real nice lady, very knowledgable. Being sent for cta and spine tap asap. Sounds like I'm having issues with blood flow somewhere in brain. Won't ponder on the what if's today. Katie
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Cutting back on narcotics
To try to get my stomach working again, my doctor and I agreed today to cut back the amount of narcotics I'm taking. I hope this works with nausea too. I'm going down from the 50 patch to the 25 tomorrow even though it's a bit early for that. My doctor said he usually likes to wait until the patient is taking 4 or fewer…
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I just found out I have cancer
I learned about it over the phone. They say I have a suspicious lump at the back of my tongue but the cancer cells were found in my lymph nodes and they made that sound like its pretty bad. I have not told my wife or anyone else. I have no idea what the treatments are going to do to me. I have no idea if I can beat this or…
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Just got back from seeing the ENT....
he scoped me out, and said there is nothing at all left of the tumor (NPC Stage III)...my nodes are down to what will probably turn out to be just scar tissue, there is so little left. I've been feeling light, and I can't wipe this smile off my face...it keeps coming back...LOL. p
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Is this swallowing problem?
I am almost done, my last rad is tommrow. I have been having tough time last couple of days. I had no mucus till last week so only had to deal with dry throat. I was hoping for little mucus as i thought will provide some lubricatjon, man! was sooo wrong! they both stay and decide when to appear without giving any warning…
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Only 32 more and I can
ring the bell. Yes my friends I had my 1st RAD treatment today. It went well considering it was about 30 minutes vs 15 on the future visits. But again thanks to this site I was a little more mentally ready. I remember some post commenting about the mask being tighter than they recall from the fitting. I felt that as well,…
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When does the black cloud start to lift
I have been reading the message board since July of 2008 when my husband was first diagnosed with SCC lVa, base of tongue. He had 3 rounds of induction chemo and 35 radiation treatments. His last radiation treatment was in 12/08. He had a neck dissection with no sign of cancer in nodes, just scar tissue. That was in…
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HPV Positive Head & Neck Cancer
I have noticed several posts from HNC victims that share a common characteristic of having occured in non-smoking, non-alchol users. I have mentioned this before over the last 18 months or so but wanted to take the liberty of suggesting again that if you are diagnosed with HNC, and especially if you are a…
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John's Map- where we all are
Where In The World Are You is the link in Sweet's awesome Superthread that shows where we all are- those of us who've been entered onto it. The case of Phrannie and Staceya being neighbors in a kinda remote area of Montana brings this to light, and the need to keep it updated. Next to the Superthread, the Map has to be the…
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I thought I'd feel better by now
I have had, I realize, very unrealistic expectations of what my recovery would be like. 13 months after my diagnosis, I've had three surgeries, two rounds of radiation and two rounds of chemotherapy. Yet, somehow I thought I'd feel better than I do. What was I thinking? Now, it's the edema/lymphedema which is getting me…
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Running A Fever
Have had only 2 of my weekly Cisplatin and my bloodwork was fantastic last week. Now suddenly I'm running a fever. It hit 100.5 and I didn't realize I wasnt supposed to take anything to get it down. Called doc. Of course I haven't heard back yet. How concerned should I be over this fever?
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Eating...
Coco-Wheats with double sugar and milk, tastes like normal except I would definitely not need that much sugar usually Frosted Mini Wheats, still good. Scrambled Eggs, gonna put some cheese tonight for extra calories. The one I ate today was borderline delicious. Watermelon. It was passable but my mom said it wasn't a great…
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PEG Tube Feeding Question
Hubby is 90% peg feeding 4 weeks into treatment. I cannot get enough calories in him. He is using FiberSource which is 300 calories per 8 oz. serving. Full strength gives him diarrhea. So we dilute 50/50. But I can't get more than 8 oz. diluted food and 4 oz. of water in him at a time. He claims he's full and can't hold…