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Planned Outage on 10/9
There will be a planned CSN outage on 10/9/15 from 5am-8am EST while the site undergoes some maintenance. We apologize for the inconvenience. Rowan CSN Support Team
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Pill crusher
I'm starting a new topic just short and sweet. Get a pill crusher and a pot of jelly. Twist the crusher tightly put the powder in a little jelly on a spoon ( jam in uk) and place it on your tongue then have a sip of drink through a straw to wash it back, no more gagging on pills.
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Another Member Meet Up
It's always fun to hear about people in this group who get to meet each other in person. On a gorgeous fall day in Wisconsin, Sonja K and Mrs BD met for breakfast and good conversation. We have a lot in common, and a few ideas on which we are polar opposites. We both agreed though, the CSN group helped us get through a…
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NPC Survivors
Hi, My husband finished up chemo/radiation treatment for NPC stage IV over 2 months ago and are are anxious for the 3 month mark to do the PET and CT scans to see the results of the treatment (he only had one CT scan during the treatement - and it was at the half way point). He still has some of the same symptoms he had…
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Humidifiers
So, we are currently using a humidifier at night to help with the dryness in the nasopahryngeal area, and also to keep the mucus from getting super thick and draining down into the esophagus at night (sleeping in a recliner as well). But I think we have the world's noisiest humidifier! Unfortunately I am one of those…
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New Guy Starting Chemoradiation treatment tomorrow... Yikes!
Hello All, I am am new to this site and a first time poster. I would first like to say a quick thank you all of you who are on here and continue to post valuable information and answer other various questions concerning all things H&N cancer related. I have already learned a lot from all your many posts and I really…
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Cisplatin and Vinorelbine
I have parotid cancer metastasis to lymph nodes and lungs. After meeting w 2 oncologists, I was surprised to hear that radiation would not be in my course of treatment after all. I'm getting a port put in next week and starting chemo. It's going to be cisplatin and vinorelbine. Does anyone have experience with this? Am…
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Best Recipe book?
Ok, I'll confess...I am a cookbook junkie. I love looking through cookbooks (and quilting books, but that's another story). Lately I have been doing some reading in preparation for that wonderful day when my husband will be eating by mouth again. Right now he is dependent on the PEG tube. There are easy chew/easy swallow…
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Can my throat eventually close up ?
Hi there, It's been a while since I was here. I came across a friend's message regarding throat can eventually close up if you have had radiation ? Is this true ? My last visit to Dr about 6 weeks ago he said my throat had narrowed but didn't say anything more. He was very happy with the results. I've not really had much…
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stable disease????
What do you make of this? My cancer is a squamous cell skin cancer that invaded my facial/cranial nerves leaving me with left side facialy paralysis. I had chemo and 33 radiation treatments which I finished in mid July. I just had a follow up MRI and my Dr told me everything was stable. I glad there is no progression…
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CAT scan confusion
My husband had the last of his 35 radiation treatments on 9/2. He has an appointment to have his first follow up CAT scan on 9/30. A friend who was receiving treatment at the same time as he was and has the same doctor was told to get his CAT scan 6-8 weeks after his last treatment. Do you guys know what the general rule…
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my mouth sores
My mouth sores or tongue sores as it bwere just won't go away! I'm at over 12 weeks and keep great oral hygene up as well as the salt and baking soda rinse,and even use a mouth sore rinse by ORGEL buy the damned thing is still here on the side of my tongue where the most cancer was. Nurse says cause I'm still cooking well…
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help with eating
I have only 6 rads to go and two chemo, but am able to eat things and swallow fine. I need help please making things palatable. I can taste all of the components of whatever i am eating but something is still missing that makes swallowing the food difficult. Is it just the lack of saltiness or sweetness? I try anything…
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IMPT vs IMRT (rotating)
I recently began reading about IMPT vs IMRT. IMRT seems to be the conventional method for NPC treatment, but IMPT claims superior targeting therefore, less damage to adjacent organs. Has anyone had IMPT and good success stories? IMPT being new technology is only available in select locations. thanks for your input! If all…
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Radiation Fatigue?
I'm 8 weeks out from radiation. Can I still be having radiation fatigue? One day strong, next day weak. Also with severe dry mouth. Seems to have gotten worse in the last few weeks. I'm on Pilocarpine. Does this take time to work ?. I've been on it for two weeks doesn't seem to do a thing. Really dry as a dessert and…
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Ranting
My husband uses fentanyl patches as part of his pain management. It is very difficult to find these patches. Corporate drug stores explain either that their management has decided not to carry these patches or that they carry a minimal number. We've found some success at small owner-operated pharmacies but the script can…
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Has anyone taken cetuximab?
Hello, I'm Mark I had a tumor removed from the lower ride side of my tonge in June, followed by a neck dissection in July. Now I am about to start chemo and radiation treatments. As I only have one kidey and my numbers arean't that great, my doctors decided that the standard chemo drugs would be too hard on my kidney.…
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2 months post treatment--new issues
Two questions for my fellow survivors: 1. Pain--I completed 35 radiation treatments along with chemo (cisplatin) for tongue cancer almost two months ago. My pain was bad in the beginning but then as the tumor shrunk, the pain was well controlled with a fentanyl patch. Within the past two weeks, the pain has gotten worse…
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Reactions to CT contrast medium Omnipaque?
Hello fellow survivors, I am writing with some good news. I had a suspicious area on my neck and went through a CT scan with contrast dye last Wednesday and all is normal except for the surgery and radiation damage (fibrosis). Nearing the critical 2 year mark end of Dec. Wondering I anyone has had side effects from the…
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realization
I have come to learn, here as my treatment nears its end, that my "success" has probably been an exercise in futility. Just now researching my exact type cancer ( stage IV squamous cell supraglittic cancer) that I have a "rare" form of cancer that is rarely survived, and most likely, when my radiation and chemo is…
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Two steps forward one step back
Trying to put on my big girl pants and remember that my husband and I are running a marathon here, not a sprint. I was (unrealistically) hoping that each day would be a little better, but have come to realize that it's a forward and back shuffle and that the important thing is to try and go in that positive direction.…
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Im a little confused.
I was diagnosied with stage 4a tonsil cancer with two lymph nodes locally. I did 7 cisplatin and 39 rads. The confusing part is I came out of it almost damage free. I did have a burn around my neck which lasted about a week. I have some thick mucus but not like some are talking about and my mouth is a little dry. However…
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Kritter up date 10-06-15
Hi everyone, I got an e-mail from Keitter yesterday that was not so good, She is down hurting trying to deal with the bad news the doctors gave her. They told her she had at best 12 months to live. Please keep praying for her, because the doctors don’t have the last word, the last word is with God up above. There is a…
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prognosis
If you are diagnosed with cancer its only natural that you would want to find out what is likely to happen to you. I also read many places to stay off the internet because you'll only be misinformed because every person is different and every cancer is different and looking on the internet will tend to make things look…
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NPC with adjuvant therapy
I was diagnosized with NPC stage IV on July and still in treatment. My family and I was shocked and thanks to God I found this site and noticed a lot of NPC servivors. I got motivated to fight this desease! I have a question need you help. My medical oncologist suggested cocurrent chemotherapy but without adjuvant chemo.…
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Nasophranx Cancer S2/S3
hi everyone! I'm not a cancer survivor yet, but I have high hopes of being one. I'm a male, 32 years old, and my biospy results just confirmed I've a squamious cell nasophranx carcinoma. Currently Stage 2, but I sense hesistancy in the doctor until the PET scan is revealed, hopefully not escalating to stage 3. I've read…
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Dry Eyes
No that's NOT a typo...dry mouth is common I know...but dry eyes? Anyone else have problems with this following chemoradiation or chemotherapy for head and neck? We just came back from the ophthomologist with artificial tears, an ointment and a spray because my husbands lacrimal glands are no longer working. We have a…
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My first post, Oropharyngeal Cancer
Hi, I have been following the forum for a couple months. I was diagnosed in July with Stage 4a, hpv+, with UNP. They did semi Radical (I think it's called) Neck dissection on Aug 5th to remove matted lymph nodes on the right side of my neck, along with about 5 or 6 different biopies in my throat and mouth during the…
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Climbing the wall night
That time of the year for me, chest scan tomorrow for the lung cancer they removed in 2012. Climbing the walls tonight already, you never get used to nervous battle before a scan. scan at 8am meeting with lung onc 9am. Denis
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appreciation
I want to thank everyone again for all the advice, support and information in this community. I am not good at responding to each comment but my appreciation is genuine and sincere. I am now in my last 2 weeks of radiation, with my last treatment and last chemo scheduled for Sept 29. So far, in comparison to some of the…