Previous Thread
Next Thread
Print Thread
#200780 04-18-2021 03:50 AM
Joined: Feb 2012
Posts: 5
Likes: 1
Member
OP Offline
Member

Joined: Feb 2012
Posts: 5
Likes: 1
Although I’m happy to be alive 17 years after my initial diagnosis of oral cancer, I have experienced a host of long term side effects from treatment. Throughout these years I’ve been able to “get over” many insecurities and have learnt to cope with the others. What I’m finding most embarrassing —I cannot speak without spewing saliva everywhere. I experienced this problem prior to having all my teeth extracted however it’s severity has greatly increased since then. People move away from me when I am trying to engage in conversation, even my doctors. I can clean my tablet and phone screens, yet after a very short time using the phone on speaker, I can see a filthy, spot covered screen; and even my tablet. I don’t usually speak at my tablet, so I’m figuring the spray comes out even when just exhaling. Has anyone else experienced this, and if so please tell me how you handle this. Thanks.


Age 56
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX spinal stenosis,01/21 110lbs
1 member likes this: Dwayne L Hubbard
Joined: Apr 2016
Posts: 75
Likes: 1
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Apr 2016
Posts: 75
Likes: 1
Hi Stephen, its been a long time since I have been on line here, but yes I have the same thing and I have only been out of radiation for the past 12 years, I am kind of happy that I always wear a mask now due to spitting and chipping teeth. I usually just carry a napkin or cloth one, not sure but I can ask the oncologist that I am seeing on Monday take care, Michele


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
1 member likes this: Dwayne L Hubbard
Joined: Feb 2012
Posts: 5
Likes: 1
Member
OP Offline
Member

Joined: Feb 2012
Posts: 5
Likes: 1
Thanks so much for sharing your struggles. At least I know I’m not crazy. What I’ve experienced is lots of loving friends and family who will simply dismiss my concerns, and say things like, “No, you don’t spit when you speak.”, etc, but I know they’re just trying to spare my feelings. I wish people could just tell me the truth. I totally understand the chipping teeth issue, I went through it and ended up having them all removed. For me now, it’s been 11 years since, and 17 years since cancer diagnosis. Funny that you should say wearing a mask gave you some sort of comfort; I felt the same.


Age 56
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX spinal stenosis,01/21 110lbs
Joined: Sep 2009
Posts: 698
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 698
Hi, StephenS,

My husband is almost 14 years out from diagnosis and treatment. He has difficulty with drooling---late effects of radiation and surgeries. He has been working with a speech pathologist who has given him exercises to help improve his swallowing. We're hoping this will also help him control the flow of saliva. The SP said that within the last 5 to 6 years, there has been more emphasis on working with H&N cancer patients right after treatment. The only time we saw a SP was after my husband had his trach removed, kind of a "one and done".

Maybe a SP can help you, too. We're hopeful that he can get some relief, however it has been a long time since diagnosis. We'll have to see how this plays out. Best of luck to you!


Anita (66)
CG to husband, Clark, 76,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia, PEG 7/21 still recovering
Joined: Jun 2021
Posts: 7
Member
Offline
Member

Joined: Jun 2021
Posts: 7
Hi Steve, yes I get it. ..........I drool , especially when I sleep. Wet around me when I gee up. Also, when I fly and take a nap, It looks pretty bad! But so what, as you said...happy to be alive. My personal experience when I spit of blow food out is that most folks appreciate that I am still trying to live As the saying goes...the new normal

Good luck, Steve


cancer in 2009, successful treatment. 12 years out, doing OK

Link Copied to Clipboard
Top Posters
ChristineB 10,506
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
MuddyBob, Beth S, David Gotip, Sarah81921, SRR
12,729 Registered Users
Forum Statistics
Forums23
Topics17,961
Posts195,917
Members12,729
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5