#92145 03-19-2009 04:53 PM | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | This site is amazing.Just what I've been looking for. I have Mucoepidermoid CA of the Submandibular Gland. I have had surgery for tumor removal and now after being presented at Tumor Board I am facing another bigger surgery. Lymph nodes, gland, lingual nerve, poss more nerve, scrape jawbone and thin section of mouth floor. The rt half of tongue will be paralyzed. I've been trying to find out how much
my speech, chewing, swallowing will be affected. I've read the all the posts pertaining to my type of cancer. My rt vocal cord is paralyzed from neck surgery. I have RA and take immunesupressants. I can't function without them. Any help dealing with half tongue paralyzed would be wonderful.
Last edited by Sweetpea; 03-19-2009 05:34 PM.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Now there is a name I recognize. I used that sweetpea name on the CB Radio for a number of years and have someone calling me that in email. LOL You have a good name there Sweetpea. It will serve you well. I wish I could answer your questions but right now I hurt so bad I can't think. good luck with whatever you go thru..
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
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Sweetpea I am glad that you have found this site and that you are finding useful information here. It will help all of us if you would add a signature to your profile like the other members so that we understand you diagnosis and treatments. It will help you too - you won't have to repeat yourself.
I don't have any experience with a paralyzed tongue unfortunately. It may be similar to having the flap like I do. The flap does not move.
I wish you success with your treatment and know that you will find the support that you seek here from these wonderful people.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Sweetpea...welcome to OCF.
My uncle does not have cancer but half of his tongue has been paralized since birth. He talks and eats just fine. His speech is a little hard to understand sometimes but if people just take the time to actually listen you can understand. As far as eating goes...he does just fine. Your situation may be different because of the additional surgery. I just wanted you to know that there are people out there with a paralized tongue and doing just fine. Good luck to you and I look forward to reading more of your posts and hear how you are doing.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Hello Sweetpea and welcome to OCF. Although I don't, someone here will have the answers you are looking for. I haven't been a member very long but have found everything I've looked for and the best part here are the members. Everyone is so friendly, it's like I've found a new family. Another thing, you can talk about anything here which I can't with my family because they really don't want to hear about most of it. Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | 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 | Hi Sweetpea:
Welcome to OCF. Hope you find the help and support you are looking for here. There are many caring and helpful members here. Im sorry, Im not familiar with what you are describing. I just wanted to say hello, and welcome.
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: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Suzanne "Congratulations on your marriage". Thank you for the message. You have made me feel better about my April 1 surgery. I'm probably the only pt willing to let someone cut on me on April Fools Day.Yikes! LOL
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Just watch they don't cut the wrong appendage off Sweetpea. Damn that would not only hurt but be painfull,, ouch don't even want to think about that. LOL
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
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Hello SweetPea and welcome to the site. There are soo many helpful people on this site and is great for answers. During my surgery they had to compromise my right facial nerve paralyzing the right side of my face and half my tongue. My speech is more affected by the inability to move my face/lips then my tongue, but I'm still comprehensible.
The tongue paralysis affects more of my eating and swallowing then anything else and I can't stick out my tongue very far out of my mouth or to one side of the inside of my mouth. This makes it hard to move food around in my mouth so chewing can be tough.
I think the hardest thing about the facial/tongue paralysis for me is not being able to kiss my wife like I used to but my case is different due to the facial paralysis on top of the tongue paralysis. I think that it would be more easily dealt with if it were just the tongue paralysis.
I hope this helps and wish you the best
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: Mar 2009 Posts: 1 Member | | Member
Joined: Mar 2009 Posts: 1 | I am trying to find out info about the surgery and what to expect my mom has cancer of the palate, tongue, lower jaw and cheek. she did the herbatux and rad, and is supposed to have 2nd byopsy's done in april. she is very scared and confused about the surgery and her quality of life after it. we would like any comments about this please. | | |
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