| | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | OP  "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Hi
I'm Jayne and I had surgery) weeks ago for scc in my nasal cavity and upper palate. I now wear an obturator to fill the hole in my mouth. I am starting imrt and cisplatin in a few weeks. I am from the uk. I guess I'm just looking for support and tips from anyone about side effects etc.
It's good to feel I'm not alone
Jayne
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | 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 Jayne! Welcome to OCF! You are no longer alone with this illness. While there are not many with the same diagnosis, we are all head and neck cancer patients and their caregivers. Radiation to this area is not easy but you can do it! Please tell us more about yourself. How old are you? Do you have a caregiver?
Its a great idea to take all the well meaning people who approach you with offers of help and write down their name and contact info in a address book. Tell them at this time you will keep them in m ind for when you need a hand. The time will come when doing a load of laundry will be helpful. Or maybe they could drive you to treatment one day and take the burden off your caregiver.
If you are able to eat, now is the time to eat lots! Fill up on all your favorite foods. Dont be afraid of calories, they are your friend! Gaining a few pounds right now is a good idea. You will lose some weight during treatment as your sense of taste will change and eating will have some challenges for a while. Dont worry, its temporary.
A signature will help us to get to know you easier. Its under the 'my stuff' tab. Click on profile, scroll to the bottom and type in the box. Dont worry about being technical, write what you feel is important.
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: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | OP "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | St11 scc nasal cavity/palate
15/3/11 surgery cl margins
Obturator
Rt and chemo starting 24/5/11
1 tooth to be ex 3/5/11
Age 45
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | OP "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Done it! Thanks I am eating quite a bit! Not easy with obturator but I'm managing quite well. I have my husband and three kids to look after me.I am pretty positive but get down days too. Having tooth removed next week won't be a good day but I will get through it!
Thankyou
Jayne
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Jayne, glad you found us!
Ask any questions you may have, it is a great group of knowledgable people here to support you!
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: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Welcome Jayne! Kick A$$ and Take Names! Anarchy In The UK!
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome Jayne and sorry to see you have and are having a pretty rough time at the moment. You have found the best place to ask questions and get support.
No doubt there will be many eyes watching the events in London over the next 30 or so hours.
Good luck with the tooth extraction on Tuesday.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | Welcome, so glad you were able to find your way here for support. If there is any support or information that I can help yo with please ask. You can send a PM if you want to. It sounds like you have had the same surgery, and likely the same challenges that I have faced.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | OP "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Thanks for all your messages! it makes it easier knowing that you have all been there and will be able to help and advise me through the next part of my journey:)
Im sure i will be calling on your experiences to make mine easier.
The wedding has taken over the country!!!!
Jayne x
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Welcome, Jayne! Ask away -- a few of us also have had a palatectomy and are living well with the obturator. We're happy to advise and support in any way we can!
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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