#38631 06-02-2005 12:35 PM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: Mar 2004 Posts: 117 | Jen,
I'll never forget my brother-in-law, who is a head and neck surgeon (but did not treat me), reminding me to be patient about getting used to my "new anatomy" after my partial glossectomy. Keep up the good work and take it easy. If you do too much it takes a long time to bounce back.
Barb
SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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#38632 06-05-2005 06:36 PM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Robert, the new tongue is strange. It still feels too big for my mouth and I have a hard time closing my teeth together. I have a question for those of you who have had this tongue flap thing.... it looks strange. All white... will part of that sluff off (I'm guessing yes)? It just looks and feels so weird right now.
I've had a little harder time this weekend. My doctor's office didn't get my pain meds called back into the pharmacy, so I went from Tylenol w/ codeine to just plain Extra Strength Tylenol. It just barely takes the edge off the pain. I'm torn, because I like being off the prescription stuff, but the regular stuff just barely cuts it. Is not conducive to eating, walking, talking, etc...
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
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#38633 06-06-2005 12:38 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Jennifer,
I recently had lunch with a survivor who had a tongue graft very similar to yours. She said that hers was white at the beginning and eventually turned to a normal color. I'm not sure how long it took. If you would like to contact her, pleae email me privately and I will help you get in touch with her.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#38634 06-06-2005 07:19 AM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Thanks Jerry! I just don't know what to expect. The front part is all loose and strange looking. I called the doctor and they're going to check it out tomorrow. I'm hoping they look at it and say it looks fine.
I would love to speak to your frend. I've just sent you an email.
Thanks again!
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
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#38635 06-06-2005 03:26 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Jeniffer,
I started answering you before and the power went out. Big storm here in the east.
Anyway, I sent you an email and an auto reply came back. You must have used your business email. I sent you another one from the link here.
I had given Eva a heads up about you and got an auto reply from her, too. I forgot that she was going away and I'm not sure when she returns.
As soon as I hear from her, I'll give her your phone number, if you email it to me.
Good luck tomorrow.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#38636 06-06-2005 11:00 PM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Thanks Jerry! Just sent you my phone number. I really appreciate the contact. It will be nice to speak to someone else who has had the tongue graft. The swelling is starting to go down, and it's finally starting to feel like I don't have half my arm in my mouth. I can close my teeth together a little easier.
I had to go back to the Tylenol with codeine to sleep last night. I kind of felt like it was a step backwards, but keep reminding myself it's more important to manage the pain right now.
Take care and I hope you are still doing well.
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
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#38637 06-07-2005 03:25 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Jennifer, I hope this post finds you home from the doctor with good news. I, too, have been reading Tonya's posts and am having a hard time with them too. Who said grown men don't cry? Take the codiene as long as you need to. No need to suffer. I probably stopped too soon. A laptop is a nice convenience. Wish I had had one. I had my surgery on 4/6 and was back to work (on a modified schedule) on 5/3. Needed a nap every night that week. The next week I had a full schedule. But don't forget, I did not have a tongue graft. Take as much time as you need. Fatigue sets in very rapidly. I will email Eva again with your phone number, now that I have it. She may be away for a week, but who knows, she may check her email while away. Here is a link to her web site where she discusses her cancer and an organization that she founded: http://www.evagrayzel.com/red_balloon.shtml If you can, check out the whole site. She is quite a remarkable woman. I'll be praying for good news today. Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#38638 06-07-2005 09:24 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Jennifer, So happy to read that you are home. The trach scared me a lot. As far as the tongue graft, I had about 2/3 of my tongue removed and replaced with a flap from my left arm muscle and then a skin graft from upper thigh. The flap always felt tooo large for my mouth, especially in the beginning, it rubbed against my teeth. I just had it sewn down again in the middle where it had lifted a bit (I had initial surgery 3 years ago). It is much better now. It still is kind of white but better color than in the beginning....Lots of positive thoughts and prayers for you, Jennifer, you are doing well. Take Care, Carol email me if you want
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#38639 06-07-2005 09:24 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Jennifer, So happy to read that you are home. The trach scared me a lot. As far as the tongue graft, I had about 2/3 of my tongue removed and replaced with a flap from my left arm muscle and then a skin graft from upper thigh. The flap always felt tooo large for my mouth, especially in the beginning, it rubbed against my teeth. I just had it sewn down again in the middle where it had lifted a bit (I had initial surgery 3 years ago). It is much better now. It still is kind of white but better color than in the beginning....Lots of positive thoughts and prayers for you, Jennifer, you are doing well. Take Care, Carol email me if you want
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#38640 06-07-2005 09:25 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | sorry for the double post!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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