| | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I just had a 'free flap' done and don't have a tongue to wave around anymore but I'm not ditching my cell phone -- I don't sound all that good to myself, but everyone seems to understand me (except one friend who's getting a little hard of hearing).
Makes a big difference if my mouth is very dry or very wet; wet is worst.
The interesting thing is that people understand me better on the phone than in person -- I surmise that in person some of there concentration is going to reading my lips or facial expressions and they may not fit the norm.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jul 2008 Posts: 101 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2008 Posts: 101 | pete, i think i've had others say the same, that they are understood better on the phone. being as i am hard of hearing, i too can relate to not hearing papa very well since his surgery because he still has stitches and can't speak very loudly and i also have a slight hearing problem.
FIL completed treatment 10/08. CG to father in Law in india who had SCC oral tongue T2N2M0. FIL underwent surgery, neck dissection, IMRT, and erbitux without losing weight or getting nauseated. Completed October 2008. SO far so good.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I agree with Pete, wet is worse than a dry mouth, but you have to suffer with everything behind those lips sticking together. LOL But yoou are much easier to understand with the dry mouth in the front row.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | The left side of my tongue is gone...40 percent...my surgery was August 13th...I can talk but my tongue gets tired...everyone tells me every day I sound better...I personally feel like I have a couple of fingers in my mouth. The tip of my tongue is numb...I'm not sure if feeling is going to come back...if it does...I assume I'll be talking normal..if not...Then it'll be like I have a foot stuck in my mouth...I'll be getting a script for a speech therapist.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Ray,
the return of sensation can take a while. It thought it was pretty good after the surgery, but then the radiation poured it on again. It took quite a while after that for the feeling to return to something near normal..... or what is perceived to be normal.
Even if the feeling comes back that does not mean that everything will be as before, you are missing a portion of your tongue and that affects the sounds you can make, especially until you adapt and learn to compensate.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Ray, at least you have part of the tip of your tongue! My 'free flap' tongue is really just a space filler and is sutured (now grown into) the floor of my mouth, so I really have difficulty talking (esp if mouth is too dry OR too wet). However, I can be understood over the phone as long as I don't get frustrated.
Even worse is trying to move food around in mouth(I just started, so I am NOT proficient), in fact I can't even lick the spoon and have to scrape it on the inside of my lip.
Cancer, the gift that keeps on giving!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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