Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#188571 03-04-2015 09:30 AM
Joined: Feb 2015
Posts: 14
"OCF Canuck"
Member
OP Offline
"OCF Canuck"
Member

Joined: Feb 2015
Posts: 14
Hello all,

So spent all day yesterday in the whirlwind called pre-op.The plan seems "simple" enough...basically repeat the surgery from 19 years ago. Remove my left arm implant and and replace with a fore arm or thigh flap and hope for the best that the margins around my "good" tongue are fine. No "current" plans for RADS at this time (I am praying). Another PEG and TRAC....may be less hospital time as techniques have improved. As it turns out the mystery of how the SCC got on my implant is now x 2 as another survivor of 15 years exact same deal and same history post -op has been found to have SCC on the implant. Guess the research department needs to check this out! More to follow...no surgery date for just over 2 weeks.Thanks for the support....


Brooklyn Bridge...beat once will beat again!

Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
Joined: Sep 2014
Posts: 87
Likes: 2
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 87
Likes: 2
Cool, maybe you'll get matching flaps! Right and left!

Wow, sorry that you'll have to deal with this again, but if the previous one lasted for 19 years, another 19 isn't so bad. grin

I hope your surgery goes well. Maybe they'll choose to supplement the surgery with some extra treatments. In my case, I had some radiation to go with my glossectomy and I was one of the lucky ones that didn't have a particularly tough time with the rads. There are many folks hanging around here that went through radiation and/or chemo and are doing well, so it's not the end of the world if you end up needing a little extra. But I wish you luck with the process - maybe this time it will be an even smaller surgery.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Feb 2015
Posts: 14
"OCF Canuck"
Member
OP Offline
"OCF Canuck"
Member

Joined: Feb 2015
Posts: 14
Thx fellow Canuk! Yes...as you can likely figure i just want this done and over....I live on a lake and Paddle,kayak etc and so on so like you....bring on spring and lets get going!


Brooklyn Bridge...beat once will beat again!

Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Sounds like a plan.

Keep us informed:)


Maureen


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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
Definitely let us know how things go.... and good luck!

Last edited by Cheryld; 03-10-2015 08:27 AM.

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
Joined: Feb 2015
Posts: 14
"OCF Canuck"
Member
OP Offline
"OCF Canuck"
Member

Joined: Feb 2015
Posts: 14
Hi Everyone! It has been a while but frankly I am just slowly starting to feel like going on line or for that matter do much of anything but get some energy back. Briefly....10 hours of surgery march 24th....8 days in hospital....post surgery had some issues they had to watch such as BP waaay over 200 on the top side. Was able to come home Easter Sunday. IDENTICAL surgery to 19 years ago except the free flap was taken from my thigh. Walking is very difficult and physio will begin soon. Best news of all...pathology from numerous perspectives indicates NO rads at this time! The doc made me a deal that if path results were OK....the PEG came out...and it did....eating is a challenge but we will just keep moving ahead! Down about 15 pounds....need to work on this ASAP. So here is what I need help on....this is NOT the same as 19 years ago....recovery is faster but very intense...the nerves in my jaw and near my ear are like needles...any ideas on pain control.....my lips and inside my mouth are incredibly dry....I just cant get relief....ideas....more to follow....return to plastic surgeon this week. Thanks for all your support...


Brooklyn Bridge...beat once will beat again!

Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
Joined: Jun 2007
Posts: 10,507
Likes: 6
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: 6
Gabapentin is very good for nerve pain. Its prescription medicine which comes in pill or liquid form if you have trouble swallowing pills.

Rinsing your mouth a few times per day with a mixture of 16 oz warm water, 2 tsp baking soda and 2 tsp salt. If it burns, decrease the salt or omit it, but try to manage with some salt in the mixture. This will help with the ph balance in your mouth as was as help with healing. Any lip balm you like should help with your lips. Personally, I prefer Burts Bees rejuvenating lip balm. Keeping a water bottle handy and taking small sips helps too. Many have tried gum or lozenges with xylitol. I think one kind is called quench. Its probably sold at most pharmacies.

Best wishes with yoru continued recovery.


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
Joined: Jan 2015
Posts: 37
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jan 2015
Posts: 37
[quote=ChristineB]Rinsing your mouth a few times per day with a mixture of 16 oz warm water, 2 tsp baking soda and 2 tsp salt. If it burns, decrease the salt or omit it, but try to manage with some salt in the mixture. This will help with the ph balance in your mouth as was as help with healing. [/quote]My RO gave me the following formulas:
Mix 2/3 cup hydrogen peroxide plus � cup warm water,
or mix � teaspoon salt + 1 teaspoon baking soda + 1 quart water. (different than formula in previous post)

He said to rinse, swish, or gargle 20 to 30 times daily. I also use the salt/baking soda/water mixture with a foam brush to brush all reachable surfaces several times daily. HTH

Thanks, Christine, I will mix a batch of your formula and try it after finishing my current batch.

Last edited by poiuyt; 04-21-2015 05:02 PM.

Andrew
4x survivor
1998 - SCC of larynx
...laryngectomy, tracheotomy, radiation, caries, HBO, teeth extr, TEP
2002 - lung cancer, wedge resection
2014 - SCC of BOT, pharynx, oropharynx, HPV-, stage IV, T2N0MX, invasive, poorly differentiated
...chemo (carboplatin, taxol), dc'd due to neuropathy
2015 - SCC of palate
...Feb-April IMRT (46 x 70 Gy)
...Jan 2015 - May 2016 cetuximab 500 mg q week x 55wks
2016 - metastases to mediastinum, lungs, spleen, pancreas
...Aug-? pembrolizumab q 3 wks
poiuyt #189263 04-21-2015 05:14 PM
Joined: Feb 2015
Posts: 14
"OCF Canuck"
Member
OP Offline
"OCF Canuck"
Member

Joined: Feb 2015
Posts: 14
Excellent info...thank you!


Brooklyn Bridge...beat once will beat again!

Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
Joined: Jun 2007
Posts: 10,507
Likes: 6
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: 6
Andrew, since none of us here are medical professionals, I advise you to follow the mixtures your doctor gave you. They know best and after I read your post I think the measurements I posted should be 1 tsp instead of 2. Im very sorry, its been a long time since I used that mixture.


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
Page 1 of 2 1 2

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