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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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Survivor Support Group in Richmond (Henrico) Virginia
I am the wife of a very recent (May) head and neck cancer survivor. What I learned very quickly was that my husband had a lot of post-treatment-cancer questions that I could not answer. In short, I understand that I can't understand. Of course, I investigated cancer survivor support groups here in our hometown, Richmond,…
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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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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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Treatment done, now for the healing! And waiting
I just had my last radiation tx today so no more abusing my body for a while. I feel much better than I expected for this point, though they say it can get worse over the next week. I don't eat anything these days, the PEG was a very smart thing to do, but I find myself craving the day I can taste again. Even all, those…
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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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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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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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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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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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Castor Oil Packs
Hello, My husband started radiation today and his oncologist is suggesting Castor Oil packs on his neck at night. He is also using Miaderm. Has anyone else used the Castor Oil packs and any suggestions. I am a little confused about the process and haven't seen this talked a lot about on the posts. Thanks, Missy
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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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Just Diagnosed Squamous Cell Carcinoma of Neck with unknown primary
A loved one was just diagnosed with Squamous Cell Carcinoma of the Neck with unknown primary. The path report states loose fragments of poorly differentiated malignant epithelial cells with enlarged hyperchromatic irregular nuclei and apoptosis are seen in a hemorragic background that includes few scattered atypical…
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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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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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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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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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biopsy results came back positive for cancer/recurrance
one year out after treatement for tonsil cancer stage 3 with 1 lymph node/ readiation, no chemo, my mom is facing recurrance in her tongue. it is on the side of her tongue not base, hopefully of course since we did not have any scans yet, her last pet scan was a at the beginning of June and it came up clear although she…
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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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neck dissection lymph node lit up post chemradiation
Hi, I haven't posted here before but have been reading them since my boyfriend was diagnosed with NPC stage3 last August. His 6 month post treatement PET scan had 2 lymph nodes lit up, they were subcentimeter size with moderate SUV value, the highest one is 4.6. They were the two largest nodes at inital diagnosis. He just…
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pain in my jaw bone
Hi. I have a question please.. im 17 months out of treatment for stage 3 throat cancer hpv neg. In the last week I have been experiencing dull aches in both sides of my jaw, is this just another late side effect. I find myself worrying over even the littlest things i guess. Any feedback would be greatly appreciated.
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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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NED
I must confess, I have a crush on NED. I would like this to be an ongoing relationship and my husband is fine with it. NED! Today was the third time those magic words were pronounced after the ENT finished a scoping. Nine months out of treatment and No Evidence of Disease! Thank you to all of you who have offered advice,…
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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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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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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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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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Tube feeding required because of swallowing issues durning and after treatments
Many times folks going through treatments with radiation and chemo will experience swallowing issues and have to have a feeding tube placed. This helped me back in the early 90's when I went through my treatments allowing me to get needed nutrition. It is again assisting me now tgat the treatments I had way back when has…