| 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 | I no alpaca 😀 very big thing as the surgeon said he doesn't think he will ever eat or drink again 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 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 | I have always thought that he would be able to swallow. It just a matter of him finding out how. Our SLT says she can't explain how Kris is able to swallow, but he does. Yay for your Dad. Great news. 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 | I no you have tammy  I thought so but then the surgeon who did op said he doesn't think. He will swallow again well he was wrong ha xx we going Christies Wednesday for a plate of lead made for the new area to be radiated dad glad he doesn't need a mask this time and probably doesn't have to lie flat which he struggles with xx just 20 sessions this time then hopefully onwards and upwards and create some sort of life again 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 how are you doing di x just a quick question dads swelling is so bad his lips look like they could burst  his speech is really bad because of the swelling I really don't no why it's so bad still xx radiation starts Wednesday I feel so sorry for him he's so down  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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Delly, if the swelling is affecting his breathing take him to the ER right away. Im sorry I dont know what could be causing the swelling. Pay close attention to this and if it worsens then he should have medical attention. Or if you think he should be seen now then take him in. I always advise caregivers and patients to err on the side of caution and go get checked if its something that you consider serious. Better to get checked for something small than to sit at home suffering and it turns out to be something life threatening.
Best wishes! ChristineSCC 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 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Christine is right. You have no way of knowing if the swelling is affecting his airway. Go to Emergency now.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | 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 | It's not causing trouble with breathing it's been like this since operation but some days it's a little better but the last week it's been really bad he's seen numerous people this week and they just say it's post operative swelling but it's so bad his lips are massive , the physio said they can do stuff but after all radiation x just wondered how long swelling takes to go after the glossectomy and also he has had his other operation so maybe it collecting fluid for that area as well , no lymph nodes do no where to drain , they say it will find other roots out of the body but it been about 5 month now since glossectomy 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 | Hi Delly. I can't remember how long my swelling lasted. I know it was quite a long time and if the medical professionals he sees think it's normal it probably is. I thought I looked like a puffer fish after surgery but that eventually went down followed by a lower level of swelling that lasted months. I wish your father well.
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 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 Thanks for asking about my dad , he's not good just taking things one day at a time . Hope your dads over the worst and is getting stronger everyday . You are coping very well with everything , I will have to take a leaf out of your book ! So very very hard to watch somebody you've loved and looked up too so poorly and frightened , my heart is broken. X
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 | Hi di so sorry to hear that x I'm not coping inside but trying to on the outside x dads very down started radiation today his face is so so swollen his lips look like they could pop x I was dressing his skin graft other night and I noticed a lump  nobody seems concerned except me so will have to wait and see x it's weeping and I think looks like his other tumour did ;( I really really hope I'm wrong , dads just sleeping all the time and spends a lot of the day in bed I'm thinking this is what's causing the swelling as his not upright so it won't drain away x very very hard to see them like this I cry when I leave but never in front of him because he doesn't like to see me like that xx I hope you find done strength inside to help X and I completely understand how your feeling as my heart is broken to ;(( xx and thankyou for the kind wishes alpaca 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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