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#118747 06-29-2010 10:10 PM
Joined: Aug 2007
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Gabe Offline OP
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My next visit to the CCC clinic is not until September and even then my last 2 previous 6 monthly visits were unsatisfactory for me.
In short 5 minutes doctor time with only one member of the team even though the others were there in the back room.
I was able to get a private appointment at the same hospital with the (very experienced in cancer) Oral Surgeon who performed my initial biopsies in 2006 and who I had not seen since.
I was very happy with the outcome as I felt that my issues were recognised and there is now a plan smile
I have a nearly constant burning of the tongue/flap and a short summary below.
1. Flap is still a little bulky but we will leave it for the moment..had debulking done previously with little success...was happy that it was even acknowledged.
2. There is still some obvious lukoplakia which I knew from my last clinic visit and at some stage we could do some laser resection...in the meantime need to keep an eye on it.
3. The �Raw spot Feeling� and �Burning Mouth Syndrome� could be due to damaged nerves/nerve endings from surgery(Neuropathic pain).

My next appointment is in 8 weeks.

So my question at last is that I will be trialing Endep 25 mg at night which is an antidepressant.

This is my first experience with antidepressants and I am wondering if anyone else has had them prescribed for this situation?


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Feb 2010
Posts: 38
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Hi Gabe,
Just as a curiosity, what does "debulking" consist of and why would someone have it done?

Barb


Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!

"Get outside every day. Miracles are waiting everywhere."
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Gabe Offline OP
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Hi Barb,
My understaing is that liposuction was performed to remove some fat to debulk the flap.

As there were no replies to my query maybe the medical name for the medication may be more familiar to some...it is Amitriptyline.


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Jun 2007
Posts: 10,507
Likes: 6
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Sorry Gabe, Ive not heard of that medicine. I was waiting to see if you had any responses. Maybe its not something we use here in the states. If you find anything out about it let us know.

Im curious about the reason behind putting you on an antidepressant. Do you feel depressed or upset? Is this to calm you down before going to the doctor since its so stressful to go back for checkups?

I think its completely normal for all of us to get nervous about our checkups. I sure do get jittery about seeing my oncologists. Just walking down the hall at the cancer center brings back awful memories, I always walk really fast to get thru that hall. I go to my ENT frequently and dont get nervous at all about seeing that doc or my plastic surgeons. Guess Im just a bit goofy smile

I also wanted to ask you about the debulking. Was this an outpatient procedure when you had it done before? How sore were you afterwards? Please tell me everything you know about that. Im looking into another surgery to fix my jawline and wondering about the debulking. I had it done once while I was in the hospital and it was done in the OR.

Hope you are feeling ok, my friend smile


Christine
SCC 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 smile
Joined: Nov 2009
Posts: 644
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Hello, Gabe. I'm back on this site after some laptop issues. I'm sorry to hear that you have been upset about your check ups and that you needed to take action and go private. It sounds as if you did the right thing.

With my cancer history plus a lifelong migraine and insomnia problem, I've tried just about every pain reliever and anti-depressant going. I have had Amitriptyline. It helped me sleep and had - for me - no side effects. (It is also meant to be a migraine preventer.)

When I had a melt-down last year (before my oral cancer recurrance) I changed to an SSRI - more effective against depression but not good for insomnia, I find.

I hope your new plan of action makes you feel a lot better. (What you say about the burning mouth is very interesting too.)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Aug 2007
Posts: 1,301
Gabe Offline OP
"OCF Down Under"
Patient Advocate (1000+ posts)
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Thanks for the replies to my query. I don�t think I am particularly depressed and that was not why I was prescribed the tablets. I was told it was for neuropathic pain (makes interesting reading if you Google it smirk ) which is due to with the burning tongue and sometimes raw feeling. One of the possibilities for this is damaged nerve/nerve ending from the surgery. It does feel worse when I am concentrating, stressed or anxious...I a seem to suck on the tongue/flap without realising it. At his stage I am trialling it until my next appointment at the end of August. If I do get some bad side effects I will stop it. I already suffer with occasional insomnia so if I notice that getting worse will also stop. I have emailed a few of my of my �local� OCF friends and they have also had this prescribed. One for shoulder nerve pain and I presuming that was a result of OC radiation (will ask). She stopped after 3 months feeling spaced out and forgetful.
Christine the debulking of the flap was a day procedure (I think because most but not all were) under a general and while I was told a fair amount of fat was removed from the flap once healed I could not feel much difference.
Dear friends..if I have missed answering a question let me know and I will answer.

Last edited by Gabe; 07-04-2010 12:09 AM.

History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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