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#188666 03-11-2015 09:12 AM
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Delly Offline OP
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Hi everyone don't no iff this is correct one to post on but I'm just looking for bit of help and support my dad has undergone a total gossectomy and is only on day five x his trac been took out and he has had a new tongue reconstructed with tummy muscle x he's been having a bad time with saliva and secretions coughing them up x I think he is producing a lot of saliva does anyone no the reasons why and how long secretions will last x we are all struggling to come to terms with my dad loosing his tongue he will always be forgot fed and just wondering if anyone else has experienced this and if you can still communicate and eat small amounts xx


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Babak41 #188668 03-11-2015 09:15 AM
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Delly Offline OP
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Always be peg fed that ment to say x


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188674 03-11-2015 12:56 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
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Hi... firstly there are people who've had total glossectomies who are able to eat via their mouth. It will take time and likely some training. Secondly the secretions are very normal. It's the body's way of dealing with the trauma of the surgery. He will take a while to heal, likely about 6 weeks then he will have to try and relearn how to eat and speak. There are a few members here who've had glossectomies or are family members of those who've had them. They will be along to try and answer some more questions. But for now it is very likely that he will be able to talk and eat again to what degree no one knows, maybe just soft foods maybe everything. His speech will probably be a little hard to understand but it should improve. It will just take time and therapy. Hugs and welcome.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Delly #188676 03-11-2015 01:04 PM
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Administrator, Director of Patient Support Services
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Welcome to OCF! Im glad you have found our site to help you with your father.

Ask the medical staff to use a portable suction machine to suction out all the gunk.

Its still too early to tell if he will require tube feeding for life or if he will be able to relearn how to eat. If you dont already have a dietician and speech pathologist on board find them and get their help. They will be able to do wonders in help0ing him learn to adapt.



PS....I have moved your posts to the proper location. Please take a few minutes to review the link included in the private message I sent you. Click on the tiny flashing envelope next to the My Stuff tab.


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
Delly #188677 03-11-2015 01:06 PM
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Hello Delly, welcome. This is indeed the correct forum and a wonderful site for information and support.
My Husband Kris had his Total Glossectomy 3 years ago. He too had flap formation from his stomach muscle/skin. I remember that he too had plenty of oral secretions post op. actually he went from having a totally dry mouth after his radiation treatments, to this very wet mouth after the surgery. While he was in the hospital and the surgical site was healing we used an oral sucker to remove the secretions.
Kris rinsed his mouth out frequently with a soda bic and salt solution. These days he just uses fizzy soda water, sometimes coke. He rinses and then spits/ let's it all run out. Many times, he needs to physically wipe it all out. As they no longer have a moveable to tongue to wipe and clean out the oral cavity, sometimes it needs wiping.
Kris started swallowing liquids at about the 3 rd week post op. he progressed very quickly and has not used his Mickey Peg since about the 8 week mark. Kris tips the fluid into his mouth, tips his head back and somehow swallows. Even the Speech Therapist can't explain how he does this. So , now, Kris swallows all his nutrition. Though it is liquid. Smoothies , soups, blenderised meals etc.
Of course he will be able to communicate. Try holding your tongue still and talking. You can do it. Yes, it sounds a bit different, but it is still easily understood. Kris had a total Laryngectomy as well and he is able to communicate.
So, be positive. You are only at the very early stage and it certainly does get better. Kris leads a full life and we are grateful to still have him.
If there are any questions, or any help I can give you, please just ask me.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Delly #188683 03-11-2015 02:47 PM
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Delly Offline OP
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Orr thankyou so much I feel so much more positive after reading this :)) I am praying my dad can do this and I want to support him every step of the way x Tammy your husband sounds like he's doing great :)) x I've been to see my dad tonight he's very swollen around the jaw not as many secretions today x he says he thinks he's depressed but I don't think he is yet he's just fed up and bored and he wants to get home xx we have done all his house up as it was the same as when we was kids ha he's going to love it I've got him broadband and netflicks I just want him to be happy and occupied and get better xx I no it's a long road I just don't want him to give up to see my dad last week talking to this breaks my heart inside I would loose every single limb to take his place but I can't so all I can do is be strong x thankyou everyone for welcoming me x and thankyou critstine for moving my tab I've been trying for days to contact someone to speak to x


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188685 03-11-2015 04:20 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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It's completely normal for him to get a bit down. This is very life changing. I'm sure Kris would have had difficulties if we, his family , hadn't been so positive and supportive. There is also the option to start antidepressants . Kris started these in the 2 week post op. they take 3 weeks to kick in, so start now. Kris was only on this medication for 3 months and has never looked back. He leads a full life and I'm sure your Dad will too with all your support and encouragement.
I will say though, , that recovery takes a while. Don't expect him to be back to himself for some months. It took Kris a good 7 months. However I was able to relate him safely home by himself at around the 8 week mark. He could do all things independently by then.
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Delly #188689 03-12-2015 04:50 AM
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Posts: 71
Delly Offline OP
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Hi tammy I've been trying to say that to him and keep him positive x I sent him your reply yesterday to spur him on and he said thanks smile just knowing that others are going and been through the same will help him along xx he's very swollen around his jaw and because he had his lymph nodes took it hard to drain the fluid x he's not in much pain but I'm dreading the radiation x he's had it before 22 years ago he had lymphoma in his neck but he a lot older now and had been through a lot more x how sad to even have cancer once never mind twice x had to tell him his cat passed away today it was 19 and don't think it could cope without him :(( sad as that's all he had he doesn't have a wife or partner but said he doesn't want another animal xx


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188691 03-12-2015 06:57 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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It's a big change and hard to adjust, but he will - he may have to figure out what works for him with the help of a therapist who deals will swallowing and speech etc... I think his determination will make a difference. For now, I totally understand his being down - but hopefully he will pull out of it being at home and healing. Maybe you need to sit and talk to the surgeon. He would have a good perspective on how well his patients do after the surgery. Maybe there is a support group available so he can see that he will get better.

Hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Delly #188695 03-12-2015 02:26 PM
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Posts: 71
Delly Offline OP
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Thankyou Cheryl it's more me questioning everything he seems to be just taking if day by day ha I just don't want him to get to down and depressed I no it's going to happen but I don't want it to get that bad where I can't pull him out of it xx I no it will cone with radiation cos all this will be healing then he has to start that x but had some good news today they are sure they've got all the cancer :)) xx


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

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