Previous Thread
Next Thread
Print Thread
Page 5 of 5 1 2 3 4 5
Re: Tongue Cancer- Problems Swallowing [Re: gmcraft] #199183
10-04-2019 07:46 PM
10-04-2019 07:46 PM
Joined: Jul 2019
Posts: 34
P
Pam42 Offline OP
Contributing Member (25+ posts)
Pam42  Offline OP
Contributing Member (25+ posts)
P

Joined: Jul 2019
Posts: 34
Hi Gloria,

I've been quite busy for a bit but I thought I would let you know that I bought the Waterpik you suggested. I didn't realize it was going to take forever to ship so I just received it last week but I still haven't been able to get him to use it. Although, I really haven't had time to study it much and see how it works either so maybe I can do that this weekend.

I was wondering though, you suggested the tongue scraper. He probably shouldn't actually use it to scrape his tongue, should he? Since he had the operation and all... Did you mean to just use it at the back of the tongue? Also, they haven't given him any magic mouthwash. They did give him nystatin for thrush and when he actually did ask about the magic mouthwash, they told him that the nystatin was a version of magic mouthwash... Anyway, I think the thrush is almost gone and now we have only 2 weeks left. Also, he hasn't been eating so maybe that is why they didn't mix anything else (such as lidocaine) with the nystatin. I'm not particularly happy about him not trying to eat but he is still drinking his water and he's getting his nutrition through his tube. His energy has been low so I have suggested he try to drink a Boost but he hasn't and I'm not going to push it. I'm just letting him do it his way. We don't have much farther to go. I hope....

Hope you all are doing well.

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #199191
10-05-2019 06:40 AM
10-05-2019 06:40 AM
Joined: Oct 2012
Posts: 1,233
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,233
Toronto, Canada
Pam, the tongue scraper is used instead of the jets which can be too powerful on a sore mouth. Use the tongue scraper for cleaning out the ropey saliva, don’t scrape the tongue with it. Remember to use warm water in the tank and turn the machine on its lowest setting. He can try using the Nystatin one time and then not using it another time to see which works better for him. At this point, he is probably quite fatigued and he might not even want to get up from his chair. So, maybe keep the Waterpik in the bathroom he uses and when he goes to the washroom, he can also clean his mouth,

It’s good he’s still swallowing liquids. There’s probably not much else he would like to swallow now, what with taste changes and sores. My husband lost all interest in things at this point. I loaded up the iPad with all his favorite shows so he could watch in bed. He didn’t watch even one show, he only wanted to sleep, he was that tired.


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.
Re: Tongue Cancer- Problems Swallowing [Re: gmcraft] #199240
10-12-2019 07:53 PM
10-12-2019 07:53 PM
Joined: Jul 2019
Posts: 34
P
Pam42 Offline OP
Contributing Member (25+ posts)
Pam42  Offline OP
Contributing Member (25+ posts)
P

Joined: Jul 2019
Posts: 34
Thanks again Gloria.

Yes, he is very fatigued and isn't trying much else right now. frown. Only one more week...


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Re: Tongue Cancer- Problems Eating [Re: Pam42] #199779
02-10-2020 06:52 AM
02-10-2020 06:52 AM
Joined: Jul 2019
Posts: 34
P
Pam42 Offline OP
Contributing Member (25+ posts)
Pam42  Offline OP
Contributing Member (25+ posts)
P

Joined: Jul 2019
Posts: 34
Hey everyone,

I had to update my signature again. I have had a copy of these pathology results for awhile but I dont really understand how you all do the abbreviations exactly. Also, some things I read on the Path report didnt match what we had been told by the doctors.


For example, I wasnt aware until speaking to the doctor last week that they have removed (at least part of) the floor of his mouth.

After his radiation, chemo, side effects were all finished, we finally were able to see the speech therapist. He had more movement in his tongue (the part that is left) but I was wondering why the flap seemed to still be tethered to the floor of the mouth and whether that would change. So now, I have been informed that the flap is part of the floor or his mouth and so it will remain attached and nothing else can be done. (?) When I asked if there is a possibility of some type of dentures; implants, ect., the answer I got was that "dentures wont really help if he isnt able to maneuver food in his mouth". Smh. I'm trying to remain hopeful but that certainly didnt help.

So, we originally were told that his long term problem would be swallowing. He has done well swallowing liquids all along. The actual problem is he has absolutely NO way to maneuver the food once it is in his mouth. (I'm not sure if it matters but I tried changing the title of this post from "problems swallowing" to "problems eating "as well as updating the signature.) He has been able to eat pureed soup and pudding. And I had noticed that everything else he has tried gave him trouble by getting stuck to the roof of his mouth, such as cheesecake and mashed potatoes and gravy. I kept thinking that surely they would be able to release that flap or something but I guess not.

Anyway, I've been trying to read, research, find some tips to help him with eating, (maneuvering food in his mouth) without much luck. I did run across something about dentures with a prosthesis. Not sure if that is an option but please let me know if anyone knows about these or has any other tips.

Hope you all are doing well

Thanks,

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Re: Tongue Cancer- Problems Eating [Re: Pam42] #199782
02-10-2020 09:49 AM
02-10-2020 09:49 AM
Joined: Oct 2012
Posts: 1,233
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,233
Toronto, Canada
Hi Pam,

Have you read any of Tamvonk’s posts? She was a very active member on the forum a couple of years back. Her husband had a total glossectomy but has been able to eat and swallow. Maybe reading her posts will give you some hope. Personally, I have no experience with tongue cancer so I’ll leave Tammy’s posts speak for themselves.


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.
Re: Tongue Cancer- Problems Eating [Re: gmcraft] #199784
02-10-2020 02:33 PM
02-10-2020 02:33 PM
Joined: Jul 2019
Posts: 34
P
Pam42 Offline OP
Contributing Member (25+ posts)
Pam42  Offline OP
Contributing Member (25+ posts)
P

Joined: Jul 2019
Posts: 34
Thank you Gloria,

I recall seeing that name before. I will do some searching.

Thanks!


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

Page 5 of 5 1 2 3 4 5

Support OCF


Shop OCF at AMAZON

Top Posters(All Time)
ChristineB 10,499
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,750
Newest Members
JustinWeldon, Alex123, MarMarMartha, SurferJon, Phoebe
12536 Registered Users
Forum Statistics
Forums23
Topics17,858
Posts195,517
Members12,536
Most Online458
Jan 16th, 2020
OCF Awards
Powered by UBB.threads™ PHP Forum Software 7.7.1