| | Joined: Jun 2010 Posts: 7 Member | OP  Member
Joined: Jun 2010 Posts: 7 | Hi, my name is Greg. I am from Cape Town SA. On the 16th February 2010 I underwent a 16 hour operation in LA. A radical bilateral neck dissection, full glossectomy and resection of the mandible from angle to angle.
I am sure there are others who have suffered the same fate and wanted to know how you are coping. This way of life is pretty new to me, but reckon I am doing ok.
Although I can still swallow, I still make use of my g-tube (still have fluids going down wrong pipe). I recently had a mri and all is clear. If all goes well I am hoping to return to LA to get my lower implants done.
Thanks for reading, Greg.
04.17.09-neck dissection, free thigh flap
06.01.09-rad.30 sessions
10.20.09-chemo.taxotere,5fu,sisplatin
02.16.10-radical bilateral neck dissection, resection of the mandible, full glossectomy, jaw reconstruction with fibula. g-tube
03.30.10-chemo.erbitux/rad. x46
05.28.10-MRI, all clear
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Hi Greg!
Welcome to OCF, glad you found us!
It sounds like you are doing well. Are your doctors discussing radiation?
I can swallow pretty well now but had the same issues as you do with fluids going down the wrong side. Have you tried using a thickener in your fluids? I've been using a nectar thickener and slowly have been able to dilute it to an almost water consistency. Funny we have to retrain ourselves how to swallow, people take it for granted!
Glad your here with us, there are many wonderful people on this site. Ask any questions you may have, someone is bound to know the answer.
Yeah on the clear scan!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jun 2010 Posts: 7 Member | | OP Member
Joined: Jun 2010 Posts: 7 | Thanx for the welcome. I forgot to mention it, on the 7th May I had finished radiation (46 sessions, 2x a day) and chemotherapy through the duration ( Erbitux). The radiation was harsh towards the end,thought that would kill me. The only side effects from chemo was a rash over my entire body.I itched every day and that is only clearing up now. On the eating side, I still have issues over that. Its not easy watching my wife and boys eat while i am stuck with fluids. I'll get over it. The worst is getting everyone to understand me, i know that will take time.
04.17.09-neck dissection, free thigh flap
06.01.09-rad.30 sessions
10.20.09-chemo.taxotere,5fu,sisplatin
02.16.10-radical bilateral neck dissection, resection of the mandible, full glossectomy, jaw reconstruction with fibula. g-tube
03.30.10-chemo.erbitux/rad. x46
05.28.10-MRI, all clear
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Greg. Nice to see you posting on the forum. Im glad you have joined OCF, you will find a few others like us on here. Things do get much much better the longer you are post treatment. I sent you a reply to your private message. Best of luck with everything 
ChristineSCC 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 | | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Welcome to OCF! You'll definitely find that everyone is very supportive!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Greg, welcome. Glad you found this place and even gladder that your scans are clear! Are you seeing people at UCLA, USC or somewhere else in LA? (I'm assuming that refers to Los Angeles... but I suppose it could be Louisiana! Or am I missing it entirely and you're speaking about somewhere in South Africa!)
David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | Like everyone else...glad you found us and double glad you've gotten a clear scan.
Hope you continue to heal and can eat normally agin.
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome Greg!
I'm glad that you found this forum, it truly has helped me in more ways then I can count...not that I can count very well without fingers/toes but that's another matter.
Life is definitely different after surgery but the way I look at it, as long as I'm breathing, it can't be that bad! The support I've found on this forum has helped me cope and deal with my new situation and has helped catapult me into truly living life again after being severely disabled by this disease.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2010 Posts: 7 Member | | OP Member
Joined: Jun 2010 Posts: 7 | Hi David 2, yes I was in Los Angeles for 4 months. The op was done at Cedars Cinai, it was a group of doctors who dealt with my procedure. Unfortunately things were looking pretty bleak for me in CapeTown. After the first op the doctors here did not give me much hope for survival, that is why my wife took it upon herself to get a second opinion and this is where I am today. On the bright side we get to go to LA from time to time as she won't let anyone touch me here.
I do have so many questions, but I am sure that in time they will be answered.
Greg
04.17.09-neck dissection, free thigh flap
06.01.09-rad.30 sessions
10.20.09-chemo.taxotere,5fu,sisplatin
02.16.10-radical bilateral neck dissection, resection of the mandible, full glossectomy, jaw reconstruction with fibula. g-tube
03.30.10-chemo.erbitux/rad. x46
05.28.10-MRI, all clear
| | | | | Joined: Jun 2010 Posts: 27 "OCF Down Under" Contributing Member (25+ posts) | | "OCF Down Under" Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 27 | Hi Greg, I to am new and my big operation was 9 weeks ago, it was hell! go that clear scan and the people her seem to have a depth about them that is rare. You are in a good place to ask the questions you need. Its like one minute your normal and next your life turns to mud and know one really gets it. Welcome!!!
lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10
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