| Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Delly, Kris too found that after his total Glossectomy he had excess secretions and used to dribble a lot. He still , more than 3 years later , has to wipe his mouth dry with a tissue/ hanky. He also rinses frequently with a salt baking soda mixture, but these days often rinses with a soda drink such as lemonade. It is certainly better than it used to be.Kris went from the very dry mouth after his faction to this very wet mouth now. Not having a tongue to sweep the oral cavity and aid swallowing makes this difficult. Best wishes to you both, 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!
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Glad the woman you mention is onto it! Your father at 60 is still quite young and it's horrible this is happening to him. With regular help his quality of life should improve. It's not long since his treatment so I hope things settle down a bit. I'm doing well. I live alone too and might go a long time without talking to anyone. Then when I DO go to talk, the saliva wells up and I struggle not to dribble and spit. After I've been talking for a little while it improves. It makes mixing with people hard. The strangest thing is that I work in a Hospice shop one afternoon a week. While I'm busy serving customers I soon forget my mouth. I think it's the only time I get totally out of my "Im an oral cancer patient" mode! Best wishes to you. Continue being the good daughter you are but don't let the stress drag you down. Easy to say, I know:)
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: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | Orr I thought dads saliva would dry up or at least not dribble it's so embarrassing for him when he's talking x he doesn't talk much to be honest x I think it effects more people than others  x I hope tomorro goes ok I just hope they get it all this time cos radiation won't be used again x does anybody no how bad it is having a muscle put in the neck and skin graft are you able to still move it straight away I really don't no what to expect tomorro and it's playing on my mind the thought of seeing him when he waking up I wish I could run away for a little bit till he's ok :(( I would never do that but sometimes I can't cope with this image on my head like when I seen him after his glossectomy it broke my heart  i hate seeing him like this I wish it would all go away :(( xxx
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
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | It is hard Delly. Sometimes when you are on the outside looking in it's kind of worse than for the person undergoing it who will only be half aware because of all the drugs. I hope you have some support from staff, social worker, other family members.
Your father won't want you to get horribly upset for his sake. I looked like a wounded soldier but fortunately my sons seemed to see me as their usual old mum in spite of that. I thought they would be repulsed but they didn't seem to be!!!
The dribbling situation might improve in time ... Botox might eventually come to the rescue but there's the surgery to go through first. Best wishesxxx
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Delly, yes, this is hard. I found it very hard to watch Kris go through this. To be honest, I was devastated for him. For the effects on his life. It was terrible to see his embarrassment when he dribbled. But, this dribbling has got better. I think he has developed an awareness of when his mouth is wet. He wipes it out with a tissue. But, not always. I just pass him a tissue when he dribbles. Actually, people don't really care and are very accepting of the realities of Kris's life now. I think you won't find this next surgery much different from his Glossectomy surgery. He will have a swollen face and neck, he will have tubes, he will be a bit drowsy . Just treat him as your much loved Dad. Which he is. I never reacted to how Kris looked, neither did our 3 sons. . If you feel a bit overwhelmed , just leave the room for a few minutes until you regain your composure. I'm sure you will be okay. I understand the wanting to run away. I still sometimes wish we could slip into the parallel universe where this hasn't happened to us. Hoping for a great outcome and quick recovery from this next surgery for Dad. Thinking of you both, 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!
| | | | Joined: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | You've done so well tammy x I feel in being quite strong I just cry on my own wipe my tears put makeup back on and face it again x dads operation went well he looked great when I went to see him Saturday obviously he was on his morphine so felt amazing ha x he can still raise his arm which was a worry as they said he wouldn't be able to x he can move his neck but more as they cut some scar tissue away and replaced with the new skin and it a lot more supple x was in good spirits for last 2 days and seemed relieved it was all over xx alpaca you seem to do very well also it just makes you realise how strong you can actually be I bet your all very proud of yourselves 😀 xxx
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
| | | | Joined: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | Hi all quick update dad having more radiation on the skin graft area just to make sure it gone hopefully it has xx he's face very swollen  finding it hard to speak with how much his lips swell  how long does the swelling take to go it's been months some days it's really bad and others goes down slightly x I no it's a major operation and no time heals but will the swelling all go eventually ? X been had stitches out today and graft looks good and neat x had swallow test this afternoon and we had the best news ever :)) he can swallow it's going the right way :))) xx they said fluid and maybe some watery soup but he tried beef broth and couldn't get it down but I think speech therapy will help him with this and hopefully can eat blended things eventually xx it's a roller coaster ride as you all no xx oh yes dad drove today he picked me up  so that's another massive achievement  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
| | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2014 Posts: 79 | Hi Delly , Glad to see your still hanging on in there . It certainly is a roller coaster ride . Hey fab news about your dad back driving , he's doing great . I didn't drive for 8.5 months . They're not able to treat my dads cancer , the outcome of the MDT at Christies was that there's no treatment options the cancer is far to aggressive and the tumour in his tummy and oesophagus is too large 39cm. Totally devastated unable to deal with this shocked and numb . Sending you a hug and I applaud your strength xxxx
Di 47 none smoker / drinker
T4 SCC left tonsil 1 Cistplatin,30 RAD finished treatment on 4/12/2013 Trismus First MRI scan appears clear TX NG tube 9 weeks acute vommiting, syringe driver 9weeks 2 month checks | | | | Joined: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | Orr this is such sad news :(( I'm so sorry to hear about your dad I bet your world has fell apart  how is he coping with the news they seem to cope better than us don't they x Orr I can only imagine how your feeling and I'm only strong because there's no other choice and you will find the strength to help your dad deal with it all x I'm so sorry I wish I had a magic wand to make everybody better xx big hugs to you and your family 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
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Delly I think it is very exciting that your father has the all clear to swallow again!
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.
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