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New here, help please? Recurrence of SCC, tongue, T4
Hi..... I have read several of your posts, I truly appreciate the kindness and camraderie that all of you possess. This is my third time with cancer, two different types. 1991 - Lymphoma-Hodgkin's, 2015 - SCC of the tongue, 2017 recurrence of SCC of the tongue. It's been determined that the 80 radiation treatments, I…
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Lack of appetite 9 months post treatment
Last summer my husband had 35 proton radiation treatments and 7 Cisplatin for HPV+ oropharyngeal cancer. This forum was extremely helpful for me during that time. The very good news is that he is NED. The not so great news is that he lost 30 pounds and really couldn't afford to lose most of it. He never had a PEG. He…
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Esthesioneuroblastoma
Hi my name is Sarah and i recently saw a post for someone looking for help about information on survivors of Esthesioneuroblastoma. I have all the info you need ;) ! According to Dr. Lin at mass eye and ear in Boston I am the longest living survivor where I received the Proton beam radiation to head and brain. I was…
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Dry Mouth Woes
Something that plagued me since treatment finished on 21 April has been dry mouth. During the day it isn't so bad because a quick sip of water and you get a few minutes reprieve, and other sip and so on. At night, however it is a different story. Not so bad if you breathe through your nose while sleeping, but I'm a mouth…
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Halfway There!
Hello Everyone, Just an update ... tomorrow will be rad #18 for my husband. That is officially halfway to the bell! :) . He had his 4th chemo yesterday. Three more of those to go. He is doing remarkably well so far. He amazed his rad team today because he gained almost a pound since last week's appointment. I know there is…
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Five month official verdict
Monday will be five full months since completion of 35 rad/7 carbol-taxol, and today I had a routine visit with my rad oncol. Yes, I am recovering, but I still have red, tender, and swollen areas in my throat/tongue on the side where the turmor was. Rad oncol thought probably two more months on that (which is also what he…
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Lymphedema in neck advice
My husband is 5 months post radiation/chemo for SCC on the base of his tongue. He has developed a "turkey neck" and has been seeing a Lymphedema Therapist. The therapist is now suggesting he get a Flexi touch pump to control his Lymphedema. We watched the video of a man putting it on, and it looks CRAZY, but if it works,…
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Dysphagia following TORS and neck dissection. Is it forever?
Was diagnosed with Squamous Cell Carcinoma with occult primary. Surgeon explained that performing TORS procedure combined with neck dissection could help locate the primary and provide pathology details on the cancer and to what extent radiation treatment would be needed, if at all. Good news - the TORS procedure did allow…
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Real Food pureed for feeding tube?
Hello, I'm looking for nouishing real food pureed recipes that can be watered down and gotten through a feeding tube. Any books or info on the subject would be much appreciated. My tube is a 20 french width. Thanks
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Hi I have Low Grade Mucoepidermoid Carcinoma, Stage 2
Hi Everyone. I had surgery to remove a growth on my soft palate on the right side. That was 4/10/2017. The surgeon sent it off to pathology and he told me I had mucoepidermoid carcinoma (MEC) on 4/17. I'm 48, BTW. I've met with the 2nd surgeon, the one who will do a wider excision, and she has ordered 2 CT scans. So far,…
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Facial pain and gamma knife radiosurgery
I am one year out of my adnoid cystic carcinoma (a salivary gland cancer) treatment. I had surgury and 30 doses of radiation. About 2-3 months after the raidiation had finished, I developed this facial pain. It has been their ever since and seemed to became stronger and more frequent at times. At one year checkup, the MRI…
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Rads away from home
For those of you who had your treatment away from your home base, what did you do about follow up once you were home and needed help with side effects?
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Gall bladder removed
Finished my cancer treatments last August and had my peg pulled on Nov. 2016. Have been clean but about 7 weeks ago had what turned out to be a gall bladder attack and then another 4 weeks later. After an ultrasound and HIBA scan, turns out my gall bladder was toast. Has it removed laproscopically 2 weeks ago and surgeon…
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High creatinine and calcium levels
Davids CT scan results back and no obstruction. What thy did find is very high calcium level 15.0 (normal 8-10) and very high creatinine levels. They seem very worried and are moving him to the Markey Cancer Center. The want to know why the levels are up and have to get them down. They seem a lot more concerned then when…
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Clear PET, but new issue
My husband fought the battle and in mid April was told he is all clear. BUT yesterday his throat became sore which was alarming. He can now swallow only very soft items. No pills will go down. Has anyone else had a similar experience? I'm not sure if he has an old fashioned sore throat or if things are changing due to…
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I WISH...
I have been coming here since my husband was diagnosed with SCC on the base of his tongue back in October. I got wonderful advice, and feel like I have made so many friends along the way, yet don't know anyone personally. I WISH we had a huge home on the water so that we could invite everyone on here to come and spend some…
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Week 6 post radiation. Tried solid food today.
First up a small meat ball. Then at teatime a carrot and sausage with gravy. Hoping this is the beginning of a return to some kind of normalcy.
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A little concerned
Im 3 weeks from finishing treatment, and about 9 before PET scan, and i have a lumpy, temder lymph nodeon the left side, in the same place. Im so scared it hasnt gone away, what do I do?
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ROLL CALL 2017 - UPDATED APRIL 21, 2017 CLOSED
ROLL CALL 2017 3rd Updated April 21, 2017 All H&N members are welcome! Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014). Thank You. First off, please feel free to…
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Bone Pain post treatment
CSN members having NPC. Do any of you have a reucrring numbing bone pain post treatment and supported by NED? this is driving me crazy and making me a little anxious. i am a SII NPC with 35 rounds rads and cisplatin. about 1.5 years out. A few months ago I started having a dull bone pain. PET scan shows NED. However, I can…
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Cold / Allergy Symptoms
Hi Everyone, my husband is just starting his third week of treatment. He's been doing really well, but a couple days ago we both came down with terrible allergy / cold symptom. When he said something to the doctor, they said it was all side effects of radiation. I have a hard time believing this since I have the same…
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Port or no?
Hi everyone! Just curious what your thoughts are about having a port versus not having one? Needles don't bother me at all but from what I've read on here they are worth it and my Dr would like me to get one also but its my choice. Also, feeding tube thoughts? Dr says if I lose 10% of body weight its mandatory and they…
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EGD...success or fails
Ive had 11 procedures and still cannot swallow much...mainly scrambled eggs,soups,Mac and cheese,ice cream and mashed sweet potatoes. Has anyone had better results?
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Early in Treatment, symptoms are starting to creep in.
I have now completed 8 of 35 rads and 2 of 7 cisplatin treatments. I am starting to feel a few side effects like a slightly sore throat, fatigue, mouth is starting to dry and taste is starting to fade a little bit. None of those are not managable as of yet. So far so good there. One side effect of concern is all of a…
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hpv tonsillar cancer
So a couple questions Would any one recc that i just get the needle biopsy and or other non invasive test to see if my left tonsillar redness swelling and feeling of a pea size area in the base of my left tonsil is hpv related ssc ? i did get a ct scan and yes they see maybe perhaps they say a 1.8 x 1.6 cm size possible…
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FOUND A LUMP ON MY NECK
On the morning of February 3rd 2017, after brushing my teeth, I looked up in the mirror and saw a lump on the left side of my neck. Immediately felt that this was serious and not just a swollen gland. Just a gut feeling but very scary. Naturally, it was the weekend so had to wait till Monday February 6th to made an…
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36 Rads
Just an observation... seems the standard is 35 rads. I wonder why they are having my husband do 36 . I don't know how many GYs.
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24 years old Nose Cancer
Hi guys, I'm currently 24 and is diagnosed with Stage 3 NasoPharyngeal Carcinoma. I'm at my 25th radiotherapy and 5th chemo session. The doctors expect me to finish 33 radio sessions with chemo once a week for 7 weeks and then a one month break. Currently im on Cisplatin. After one month, im due to go for 8 more chemo…
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Ultrasound
Did anyone have an ultrasound as part of the monitoring of a residual note post chemo/radiation?
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Skin Post Radiation
My husband is 5 weeks post chemo radiation for SCC BOT cancer. On his chin he has recently developed some small blister/acne type lesions. No oozing yet but at least one of them seems to be developing what looks like a pocket of fluid or swelling under it. Did this happen to anyone? We don't see our medical team for a few…