| Joined: Jun 2011 Posts: 2 Member | OP Member Joined: Jun 2011 Posts: 2 | hi i am a new member with tounge cancer
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Bill, welcome to OCF my friend, glad you found us, sorry you had to. I hope you find all the support and information you are looking for. When you get a shot, tell us a bit more about yourself...notice my signature, it helps give everyone a frame of reference.
Good luck
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | So glad you found us, Bill - there are so many wonderful, supportive and compassionate people here who can help you and and have been where you are. My son had SCC=Squamous cell cancer on the right side of his tongue (see under my signature) and he's doing just fine, now almost 5 years ago. You can get through this. If you want to include more information about your treatment, just go to the top of this page where it says "My Stuff" and scroll all the way down the page to the "signature" and fill in whatever you like about yourself. There is a list of abbreviations on the "Forums" page and also here if you want to check what some of the cancer terms mean: http://web.utk.edu/~aalix/abbreviations.html Stay with us, Bill - and let us know how you are doing.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey there welcome - I'm a tongue cancer fighter too ! There are a bunch of us here - sorry you have to be here but this is a great place for information, support and just being able to sound off if you need to.
Not sure if you've been treated already, are waiting, or still trying to get over the initial shock! But whatever stage you're at- good luck and take care!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Bill, welcome. We'll all look forward to hearing more about you and helping out in any way we can.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Welcome Bill Lean on us for support and info or just to talk
Jayne
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: Jun 2011 Posts: 2 Member | OP Member Joined: Jun 2011 Posts: 2 | hi and thank you for the warm welcome.i had surgery april 5 2011 and the removed a massive agressive toumer along with half of my tougne skin graffs from my wrist fill the hole,it feels like i have a sock in my mouth.radiation followed that an now i start kemo all as preventive measures so it will not come back.i also start outpatent speach therepy does anybody know if that works for helping me to eat solid food again.I am sorry i have so many questions but i am so new to all tyhis and i am overweilmed please bear with me thanks Bill | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Bill,
Never feel like you have to apologize for asking questions...its why we are here, to support each other. This stuff is overwhelming and can make you crazy which is why we need people who've walked a similar path to relate to and help cope with this crap.
Seeing a speech pathologist is beneficial and can help, there are limitations depending on physical limitations etc but its important to see one.
Hang in there
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi bill - I had a large ish (2.4 cm x 1.4 cm ) tumor removed from my tongue on the left side - I lost maybe a third of my tongue. It was done in February. They followed it up with radiation and chemo for the same reasons as you. Though I did radiation and chemo at the same time which makes me wonder what chemo they are giving you after the fact... My tongue had begun to heal - I was eating fine - until they radiated me and now it's swollen again. So I know the feeling - eating isn't too hard just slow going - I've found soft foods - but not mushy - the easiest to manipulate - things like eggs - fruits - etc... But those things depend on the state of your mouth after radiation. Usually I put the food in on my good side chew and swallow - if I have trouble I take a sip of water to help the process. . Not sure if you had a neck dissection ( I'm assuming you did) seeing a lymphedemiologist may help with the swelling of your tongue, neck and face... They help reduce the build up of fluids and help promote the fluid to build a new pathway so the swelling eventually subsides. Good luck with the speech therapy. I may do that once the swelling goes away - depending on what I need I'm good with most letters except t's and d's - but I definitely know the sock feeling!
Take care!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Count me in as a tongue cancer one too. Both sides. There is no such thing as too many or the wrong type of questions. If there was I would have gotten booted from here. LOL Welcome to our home of friends and understanding people that have been there and done that. You have already heard from the best for answering your problems. These people are the best.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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