| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | OP  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Kris's Trans Oesophageal puncture has failed to heal. He is desparate to drink some fluid even though he then aspirates and coughs fairly explosively as a result. Just brushing his teeth causes him to aspirate. He is using the PEG as a result of this set back so is getting enough nutrition. Boy am I sick of it all. When will we ever get a break?
His team have decided it is time to definitively treat this. So we go again on Saturday to see them. The choices are to have them inject around the hole with a collagen type substance to plump up the tissues and get a seal. Harvest some fat from him and inject his own fat into the tissues to plump it up or just suture the hole closed. We would then have to wait 3 months before they would again make a new Trans Oesophageal puncture to insert the speaking valve through.
I hate this silence and I really am fed up with the constant coughing and distress he goes through.
Personally I am in favour of the collagen injection. At least then they could reinsert the speaking valve. Seems to me this would kill 2 birds with one stone - seal the leak and stop the aspiration and allow him to communicate. Though this is only a temporary measure as it would only last around 6 months.
Sometimes I really do feel all alone. No one else has these problems.
I hate this awful disease.
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: 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 | So sorry to hear Kris still is having problems. Oh all the after rads issues that pop up and just never seem to end!
Trying to stitch radiated tissue is very difficult. Heeling is not the same after doing rads. I had a tunnel wound that was about 5" long that just would not heel. It took a year for this to heel but it needed help. I was on 8 months of IV antibiotics and did numerous HBO. Thats what finally worked.
Is it possible for them to do a graph to remove the area that isnt heeling and move a larger section to that place? That may be a choice. Its at least worth asking about. I would also ask about the hyperbaric oxygen treatments (HBO) and see if they would recommend this to help with heeling. Ask about medications to improve bloodflow too. I was on that for a while, sorry dont remember the name of it.
Im right there with you....I hate OC too!!!
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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Christine knows all about this stuff so I would defer to here. Though i am with you on the collagen option. Best of luck... and you will get through it. Though I know... it totally sucks.
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
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