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#45061 06-20-2005 08:35 PM
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Doreen,

My surgery was a lot different from your husband's, but I can certainly relate to the issue with your 6-year old. I am also 42 and have two children, a 7-year old and a 6-month old.

I have found the best thing with my 7-year old was honesty. We just always discussed with her what was happening. Not sure how well your 6-year old can read yet, but writing to her before I could talk again really helped. Also, if it's any consolation at all, I can see her "healing" as I heal. It's like, the more she sees me return to the Mom I was before the surgery, the better.

Kids are so flexible. Just keep the lines of communication open and encourage him to ask anything he wants. Also, if you don't see that working and he seems to be withdrawing, there are counselors who specialize in dealing with the family members of cancer patients.

So sorry your family is dealing with this.

Jennifer


Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
#45062 06-21-2005 06:26 PM
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Helo Doreen and James, I am not able to add any advice to your questions, however I will say I'm sorry that no one replied to your posts James. Once and a while a post will go "under the radar" and get over-lapped by other posts. It was by no means personal. Generally we are a pretty fun group. (well, as fun as a life threatning illness can be)


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#45063 06-22-2005 12:35 AM
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doreen Offline OP
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HI jerry and all,
We live in Harleysville. Lee's surgery was done at U of Pa. We are also doing all of his treatment there as well( chemo, rad, speech, PT,dental). He also treated there for his lymphoma 9 years ago. We got a second opinion at Sloan which concurred with Penn.
Thank you all for responding. It's nice to talk to people who have gone thru the same things as us.
Doreen
Doreen


Caregiver to husband Lee-Stage IV SCC base of tongue/epiglottis. Had total glossectomy/partial laryngectomy/ radical neck dissec 4/05 followed by chemo and rad.
#45064 06-22-2005 11:30 AM
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Hello All,

As mentioned in a previous post, I saw my ENT today and asked regarding unsuturing my restructured tongue. His opinion was that (1) I'm still healing and he doesn't want to do anything orally with me for the time being -- I had floor of mouth and pharynx involvement as well as Stage 4 tongue SCC so that accounts for his reluctance I'm sure; (2) most (80-90%) of my tongue was removed and replaced with skin, vessels, and tendons from my forearm to form what he called a "neotongue". He said it looks like a tongue but isn't a tongue in the functional sense since the original muscles that control movement of the tongue are gone. Meaning that even if it were freed up from floor of mouth, it would not funtion like a normal tongue where a person has control over its movements. What little wiggle I have at the back of my tongue is due to the small stump that was left after subtotal glossectomy. So I'm guessing that I would need a heck of a lot more than an outpatient procedure.
He encouraged me to keep trying to swallow as much as possible to build up those muscles plus keep doing the therapy exercises which I will certainly do.
I will continue to pursue options. No one ENT has all the answers.

My best to all,
Jim

#45065 06-22-2005 01:55 PM
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Nancy,

In your post you said you had a palatal drop mouth prosthesis that helped with speech. What is that? My husband had 2/3 of his tongue removed and speech is ok, but most people have a hard time understanding him. This is really effecting him he really is a completly differernt person, so I research everthing I hear or read about.
Thanks!
Cheryl

#45066 06-22-2005 03:12 PM
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Hi James, If i may ask where are u being treated at? I live near Dayton.


Was Primary caregiver to my mom who had stage IV, SCC, Supraglottic with Mets to 4 nodes. Diagnosed Feb 04, died unexpectedly from complications from treatment December 17, 2004.
#45067 06-22-2005 04:42 PM
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Hello Nancy,

My speech was terrible for about a year after treatment. It started to improve after that. People I haven't talked with in a long time tell me how much better I sound. I have to remember to slow down and look directly at whom I'm speakin to.
I never go anywhere without a bottle of water. Being outdie the wind tends to dry my mouth out.

All my Best, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#45068 06-22-2005 11:48 PM
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Hi Cheryl,

I'll try my best to describe my palatal drop prosthesis but I'm sure I won't do it justice. My prosthesis was "designed" specifically for me by a maxillofacial prosthetics prosthodontist (a genius in my book!). It attaches to the roof of my mouth much like a retainer does if you've ever had braces. The mouthpiece "drops" down and consumes a large portion of the space that would normally be between my tongue and the roof of my mouth closing up the empty space left after my glossectomy.

Although people can understand me when I'm not wearing it, the clarity of my speech is 100% better when I do have it in. Believe me my speech isn't perfect by any means but it's better than I could have ever imagined considering the amount / type of surgery that I had.

I know I'm not doing this mouthpiece justice in trying to describe it but maybe Brian (or somebody else) can better describe it.

Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#45069 06-23-2005 09:44 AM
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Nancy,

Thanks for the info. I am going to see if I can find a Dr.that knows about this in our area.

Thanks again,
Cheryl

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