Previous Thread
Next Thread
Print Thread
Page 2 of 5 1 2 3 4 5
#37202 04-20-2004 07:23 AM
Joined: Apr 2004
Posts: 33
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Apr 2004
Posts: 33
I too have a team. This morning I saw my surgeon (otolaryngologist) the radiatin specialist, the speech pathologist and nutritionist. I also had home nursing care every day to change the dressings on my trach and graft site -- they also send a dietican every 2 weeks.

#37203 04-20-2004 07:42 AM
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Ed, do you have any swelling on your face? The left side of mine is noticeably swollen and red, (neck dissection side) and the right side is always a little red. Kris, do you have any swelling on your face? Thanks, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#37204 04-20-2004 08:45 AM
Joined: Jul 2003
Posts: 382
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jul 2003
Posts: 382
Likes: 3
Carol-
Yes to both. And if I touched the area it was extremely sensitive, lots of tingles! But as they worked on it in PT it became less sensitive to touch and I have not had swelling for over a year. Redness has faded with time. Now that my hair has grown back after chemo I can't even see the neck scar from the disection. Have lost the double chin, though! :-) - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
#37205 04-20-2004 09:02 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Carol,

I did not have the neck dissection, only radiation/chemo. I have some swelling along the jawbone and under the chin which makes the double chin real big. It is real brown with a bright white patch just under the chin. It is also real sensitive and tingles.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#37206 04-20-2004 09:11 AM
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Thanks Ed and Kris for your responses, you guys are lucky, my scar is quite noticeable, especially in the front of my neck, deep indentation. However, the redness and swelling on my face bothers me more than anything, I feel like a freak sometimes. But an alive freak!!!!THanks so much, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#37207 04-20-2004 05:12 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Debbie, do not give up on those fluoride trays, they are really essential. It may be that the upper one just needs to be trimmed some to stop the gag reflex. But fluoride is an essential part of any radiated persons future if you wish to avoid dental caries from the decalcification that is caused by radiation. The consequences of losing a tooth a few years out of treatment can be catastrophic. For sure the fluoride tastes horrible, but compared to osteoradionecrosis from a non-healing socket after a tooth is lost, it is nothing.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#37208 04-21-2004 08:25 AM
Joined: Sep 2002
Posts: 24
J4 Offline
Member
Offline
Member

Joined: Sep 2002
Posts: 24
How long after treatment are you supposed to use the fluoride trays? I finished my treatment Oct, 2002 and have not used the trays since. But, Brian got me scared...


JU
#37209 04-21-2004 09:51 AM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
My dentist has advised me to use it at least a couple of times a month - forever.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#37210 04-21-2004 10:52 AM
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
My prosthodontist has me use it 20 minutes a day with Gelcam every day for the rest of my life. I put them in when I take my shower. Gelcam stains the teeth worst than smoking did. Not cerain how effective it is because I am going to have to have both my upper and eventually lower teeth capped. Maybe it just put off capping them for a few years.

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#37211 04-21-2004 02:23 PM
Joined: Sep 2003
Posts: 153
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Sep 2003
Posts: 153
hi Debbie,

my story: teams and fluoride trays don't always mix.

Cancer doc says get trays and wear them at nite.
Dentist makes them up for me.
Treatment starts.
Shortly i'm in big agony wearing trays at night. to over come insertion problems, i used ice packs on my head around temples to chill out and cause diversion before insersion. i really have to get right each nite to do it because it almost brought me to tears. then as i sleep, flouride ouzed out and i suffered. i learned to paint the trays with q-tips to reduce the overflow.

then i see the cancer doc who asks how things are going... i say ok, but the trains aren't fun.

fortunately he follows up with. 'how are you using them'

i say put them in before bed each nite.

reply ' i didn't tell you to do that! you only need to wear them 10 minutes'

for me, (a) dentist didn't give instructions and (b) i assumed 'wear them at nite' means all night.

so i left happy that it would be just 10 minutes each evening.

it's a couple of years later now. i smile about it big time, with all my teeth in place.

You can do it.. just get the fitted right and get your head right.... it ain't all night.


cu,
larryb

Page 2 of 5 1 2 3 4 5

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5