Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
tina77 #167554 07-07-2013 09:05 AM
Joined: Sep 2012
Posts: 381
tina77 Offline OP
"OCF Canuck"
Platinum Member (300+ posts)
OP Offline
"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 381
Ok, so laser update time...

I will be doing my next round of laser in a few weeks. In the meantime, I have seen a reduction in the lymphedema in my neck. It seems to have been stuck for a couple of months on the left side, but has recently softened up.

The scarring looks pretty good - it's not raised, and most people don't even notice it, which is good.

The tightness is still present, but feels less like someone is actively choking me, and more like I'm wearing a turtleneck that is too tight. It has also migrated to the sides rather than the middle of the front of my neck.

While I still can't feel the skin itself, I have sensation under the skin, which is increasing as well.

They are also treating the wrist. Last time I had no pain, this time - whew, it was not pleasant as I am getting more feeling in the wrist, especially around the outside margins of the scar. To be fair, I am allergic to local freezing agents, which they usually use, so I just have to put up with it, whereas everyone else can get frozen (yep, I get fillings at the dentist with no freezing too, lucky me).

It's hard to say whether the improvements are due to the passage of time, or the laser treatment, but I think the laser is helping as I see improvements after the treatments.

Will keep you all posted after the next round.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
tina77 #170304 09-02-2013 06:33 AM
Joined: Sep 2012
Posts: 381
tina77 Offline OP
"OCF Canuck"
Platinum Member (300+ posts)
OP Offline
"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 381
So, not much new to report on the laser side of things. It really has worked wonders on the scarring, but has not made any new improvements on the tightness or range of motion.

He has said it's a 2 year process. Bah, more patience.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
tina77 #174426 11-23-2013 06:41 AM
Joined: Sep 2012
Posts: 381
tina77 Offline OP
"OCF Canuck"
Platinum Member (300+ posts)
OP Offline
"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 381
So, I met with my surgeon for the standard follow up and we discussed the laser treatment.

He was very pleased with the results, and stated that the scar tissue was much softer than he sees without the laser.

I am starting to have even more mobility. The sensation is hard to pin down as I think my nerves are starting to repair, so there's a fair amount of tingling internally and some general slight achiness (like after a workout) again internally, although the skin itself is still numb.

As a result, the tightness issue is hard to quantify, although I think it is reduced in general, and definitely reduced in terms in terms of how far it extended.

So, positive results. This is a 2 year process, and I'm not quite a year in with good results so far.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
tina77 #174494 11-25-2013 07:22 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Yeah!!!!! Always wonder if Botox wouldn't help too? It's a muscle relaxer?


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
tina77 #174509 11-25-2013 01:19 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Cheryl, I asked my ENT about Botox several years ago. He said NO! Botox paralyzes the muscle, basically freezes it so it doesnt work. Its not something he would ever advise an OC patient to do. Of course everyone is different and has different circumstances so what wasnt ok for me may be alright for someone else. Just use extra caution.


Christine
SCC 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 smile
tina77 #174553 11-26-2013 09:11 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
HHHHHmmmmm - I was told it was meant to relax the muscle. I could see how it would work if done at selected areas around the esophagus, (not completely relaxed - just enough to make it easier to swallow for some people. I am just putting it out there. I know it works well for patients who have a lot of muscular pain... Maybe in places like the jaw even? Just ruminating. hugs


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
tina77 #174568 11-26-2013 03:04 PM
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
Number 1 side effect of Botox is difficulty swallowing that could last 90 days or be permanent. Robert from days past had regular shots for the pain in his neck. It is a toxin, a poison that paralyzed muscles. You had a smart doctor Christine! Pain management folks want to use it for everything.

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
tina77 #174589 11-27-2013 05:32 AM
Joined: Sep 2012
Posts: 381
tina77 Offline OP
"OCF Canuck"
Platinum Member (300+ posts)
OP Offline
"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 381
Bear in mind that Botox was originally a treatment for migraine headaches - the use on wrinkles was discovered as a side effect on patients. I was offered this is a treatment for my migraines, and personally I think people are nuts for injecting botulism into their face. That's why I declined way back when.

I would, however, encourage people who have concerns with their scarring and tightness to look into the laser option.

Also, I'm starting to have some feeling in the flap...totally weird.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
tina77 #174599 11-27-2013 11:03 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I agree... not a person who would consider botox period. I was just ruminating about the possibility. I have no idea how it would work just wondered if anyone had tried it. I do know as I said - of it's use for pain..


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
tina77 #174797 12-03-2013 10:56 AM
Joined: Jun 2011
Posts: 54
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2011
Posts: 54
Tina,
Yes, keep posting updates on this. Very interesting. I'll have to ask UCSF on this and if could help me. I've been radiated though so we'll see what they say. I have a very stiff neck from my recent surgery and I have to take pain meds in order to move more freely.

Christine- I've received Botox a month ago from the head/neck plastic surgeon and it's been a God send. But I needed it for my chin because it kept involuntarily twitching and it was getting worse. We don't know if it's from surgery or radiation but doesn't matter. So the Botox is used differently than what Tina/Cheryl May need it for but it does work on oral cancer survivors. It was my head/neck plastic surgeon that administered it and suggested it and my ENT concurred.


Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
Page 2 of 3 1 2 3

Moderated by  Eva Grayzel 

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
Topics18,168
Posts196,925
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