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olfactory neuroblastoma diagnosis
I Am totally new to chat rooms and discussion boards so I hope I do this right. I was just diagnosed with olfactory neuroblastoma stage A grade 2 - 3. I had a polyp removed on December 29th and the biopsy showed a malignant tumor instead.my doctor is sending me to San Francisco (ucsf) to be treated. I'm actually really…
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Anyone have Genzar?
Doc's talking about giving me a blast of Genzar prior to my 28 day clean-out which is in anticipaiton of the PD-1 Trial. Anyone have the drug before and what did you go thorugh? Thanks, Joe
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Biopsy positive
Unfortunately the biopsy of my mom's lymph node was positive for cancer that spread from her lung. We are waiting for an appointment with an oncologist to get options. Read the PET report which also noted extreme uptake in a vertebrae. I am kind of numb right now. Not even a year since I lost Jim to this crap but now I…
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Post tx not eating/PEG
Today is 7 days post treatment for my DH. His last treatment was 2/16. At his checkup on 2/20, he was down 4.5 lbs. Over the weekend, he has not been using his PEG. I think over the last 8 days or so he might have had total 12 cans of isosource. The most in one day has been 3. Each one is 375 cal. Home health came today to…
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Turkey neck?
I just was looking at ny neck and it seems that on each side I have these swollen (not hard) lumps. Could this be the beinning of the dreaded turkey neck?? If so does it eventually go away?? They seem to be fluid.
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Skiffin16 ~ Whipple Fish...
Well... As many of you know and have followed my progress.... I had the Whipple Surgery on 4/22/2014.., it's been an adventure for sure.. My surgery was for a pre-cancerous cyst, and all ended up being benign.., yay on that.. But I never really regained and appetite, was very nauseaous, and ended up getting an abscess at…
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Saying hello
Doing much better, still have issues with my eyes. Being runny and blurred vision. And still losing weight despite eating, down to 112 now. Have the peg but not using it, eating on my own. Seeing Doc on the 10th about getting it out. I think I will do better once it is out. Getting scans in April to see if all clear, but…
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Radiation Injury Help?
I'm nearly 6 months post treatment and have soreness along the untreated side of my tongue and some areas of the treated side. Medical Onc says it's due to radiation damage. Anyone else encounter anything like this? I'm not sure what to make of it or how long before it's better. I'm assuming if it's nerve damage, it will…
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how are you guys, longtermsurvivor, kteacher, Hwt, luv4lacrosse
Hello guys, did not see any recent posts from you in awhile. Just wanted to see how you guys are doing. To all on this forum: I always have you in my prayers although I do not post that often. Happy New Year to everyone!
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Wolfen and phrannie met today...
Karen came into Mesa to meet us today.....what a great time! Spent most the afternoon, and then went to dinner....what wonderful friends we meet here....we talked and talked, like we'd known one another forever. This was a fun day!! p
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Private Message Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today, and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this. If you received a message, please do not respond or…
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Going for changes in my care
So yesterday was supposed to be the last of 6 cisplatin treaatments. My dr and I decided to cancel it because I am NOT tolerating them well. Any how thanks be to God for that. Also as you know I have started to use my peg and what a debaucle that has also been. Cant keep the Boost down no matter how I try so as of now I am…
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Finished this week!
My hubby rang the bell Monday, one day early... Due to snow On Tuesday. So happy to be done with treatment. Y'all were not kidding- the last 2 weeks were rough. Today is his birthday, so we are definitely celebrating putting treatment behind us and getting to the healing. He has a checkup today with the chemo doc. I…
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Sad News- Loss of a Valued Member
Good Morning All As an infrequent poster anymore, I hate to be the bearer of sad news. However, I learned from his wife that Longterm Survivor - Pat, passed away this morning. There have been many, many posters on this board that have provided humor, hope, inspiration and helpful information. I don't think anyone could…
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Hospice
Made the decision to go on hospice as I'm too weak to do more chemo and it might add only a few months. Pain is increasing and I want that under control. I have been thinking about this for the past 2 months and I figured it is time to make that next step. Its been hell for 3+ years, no reason to prolong the agony. Doctor…
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Can taste buds grow back ?
Hi there, just wondering if taste buds can grow back ? I have very smooth sections on my tongue and have to confirm in 2 wks with my oncologist that this is geographic tongue, my go has already said yes. Had a good look at my tongue and there is red very smooth sections, can taste buds grow back ? This is the result of the…
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Ok, you guys...
This will be my last shot at any internet access for a couple of weeks. Know that I'm thinking about you all, even if you don't hear from me. If I can figure out a way to get on here while on vacation, I WILL do it!!! You all are in my thoughts....that's just how it is with people you care about...right? Greg and I are…
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Emergency room again
Hi all, We are having a horrible day today. Quite frankly we are running in fumes and just don't have much left. So this is when I keep telling God that I know His power is made perfect in our weekness and that I know he doesn't give us more than we can handle. I just don't want this any more. We are so, so tired. I want…
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Puts things in perspective
Last night there was a house fire in North St Louis. Two little girls were rescued by firefighters but sadly one lost her life shortly thereafter from smoke inhalation, she was 7. This morning I went to hyperbarics and they brought the other little girl by ambulance from Children's Hospital, she is only 6 years old. She…
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laryngoscopy.????
has anyone else had to do this after treatment? It was just sprung on me and no way with my anxiety could I do that without being knocked out. They only told me when they called as a reminder for my pet scan which scares the hell out of me anyway. Is it common? Necessary? Other options?
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Choking
Hello! My mother is a 2 time cancer survivor of nasopharyngeal cancer. She is and always has been a non-smoker and very healthy. She had radiation for both treatments, first in 1997 and then again in 2000. She suffers from severely dry mouth, hearing loss, tooth loss (recently received permanent false teeth on the lower…
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Acupuncture - UPDATE
Hellow fellow boardies, I don't post much nor frequent the boards and I do apologize. I posted my reasons and I'm sure you understand. That being said I have a question. Has anyone tried acupunture to help alleviate post treatment symptoms? At my last appointment, my surgeon recommended it for saliva producton and chronic…
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tonsil cancer caused by HPV-16
Anyone with tonsil cancer caused bt the HPV-16 virus should read the article on "nature.com" it tells the story about who and how it was discovered and the theory behind they think it attacks the cells. Also the new methods on how it's being treated. So if you get a chance please read the article as it only talks about…
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Alternatives for what to put into feeding tube vs Jevity 1.5 which makes my husband sick.
Hello...my husband is in week 7 of radiation & chemo for head & neck cancer and the formula (Jevity 1.5) that we put into his feeding tube is making him sick every day! He hates it & we would love any recipe for a high calorie subsitiute that we can purchase of that we can make naturally in a jucier. PLEASE HELP! thank…
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Checking in and more prayers please
It has been over a month since I checked in here. I was saddened to learn of Pat's passing and problems others are having. Especially sad to see so many new diagnosis. But it was good to see that John, Skiffin is on the upside of recovery and finally fishing. Oh how I would love a plate full of Specs right now. I have…
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20 down,10 to go!
Hi Everyone, 10 days to go! This has been a rough ride. I can hardly look at my husband without bursting into tears at times. He has lost 20 lbs so far. The nutritionist told him he HAD to start drinking more calories. He is getting about 2600 calories a day now which I know isn’t a lot, but he has not lost any weight in…
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Disability
Well I been working in the Oil Patch from 1972 and I did just about every type of job there was to do except drill for Oil. In my 43 years I seen a lot of ups and downs but through it all I always had a job and was always able to take care of my family. Well the children are all grown-up and married with families of their…
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For those of you that had Mucous
Anyone take Musinex? It's supposed to thin out and help expectorate. Did it do any good? I'm making massive amounts today. Thanks, Joe Cortney Dallas, TX
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New pic
I got fed up with seeing my face on my site so posted a pic of two of my great grand children Jasmyn and Harrison, she's three and baby's 6 months
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ok I am going to give in and use the PEG
So I am not getting enough water or food in me and have decided to use the peg for a while and see how it goes. I do not remember exactly howto use it tho. I want to just use the bolus(sp) method but do you push the boost down or just let it drip? Do you dilute it? I feel kind of ignorant because its been so long since its…