| | 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 chris
I'm getting a little more used to it but I'm told things will changer once rt and chemo start. I'm not looking forward to the side effects at all ! But I can speak pretty ok and eat ok too. I will always miss a good steak! But it's worth it all to get well. Even losing the teeth! My face is changing but I can live with it!
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Jayne, I add my welcome. Sounds as if you're getting great medical care and have a wonderful family to support you the rest of the way. With your strong attitude I have no doubt you'll sail through the rest of your treatment with flying colors!
My thoughts are with you.
Oh, and... who's getting married, btw??
David2
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: 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 | I'm getting worried about chemoradiation and it's side effects. I'm expecting the worst with mouth sores and not being able to eat. I'm pigging out now getting ready for it! I'm sure I will get through it but am so apprehensive and can't think of anything else  I have a juicer and am thinking about getting some manuka honey, and am praying it won't be too hard to get through. 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: 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 david2
I'm strong most of the time just have occasional blips!
The royal wedding was quite a do!
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey Jayne of the two chemo is the lesser of two evils - it just enhances the radiation. A few days of nausea isn't too bad. But rads really does suck - try not to worry.
Good luck
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: 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 | Jayne, many cancer patients need anxiety meds to get thru treatments. Many also will speak with a therapist. The meds take time to work so it would be a good idea to look into this now. Especially if it seems like this is all you have on your mind. I know how scary it can be and yes it will be difficult, you can get thru this!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Jayne - Try to avail yourself of all the helps you can and you have some good suggestions above. Stress and anxiety can really get to you if you let it, so when those "what ifs" come try to only allow a few short moments to devote to them. Everybody gets them (even us caregivers!) but do try to crowd them out with some more positive thoughts, like all the things that could go right. If you need meds to get through it, do ask your doctor about it. Everyone is different and reacts differently so keep in mind that you might just be one that gets through Tx with very little side effects!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Jayne-
All those above give great advice -- I agree with them that you need not be the least bit hesitant about asking for meds for anxiety, if that is plaguing you! I depended on Xanax to get through my rads, and even was relaxed enough afterwards to take a little nap. There are many options for dealing with mouth sores (which you can expect) - rinses, gels, and regular pain meds can help. You can do this -- you sound like a strong person!
Do you have a mask for radiation? Have they prepared you for how it's going to go (have you toured the room, etc.)? Any such preparation beforehand will help to alleviate your anxiety, too.
We'll all be thinking of you as you go through your treatments. Hang in there. Keep writing.
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.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Jayne, manuka honey - are you a kiwi?? You are so not alone, I am a carer, not in the same shoes as a patient, but still living with it. Get all the meds you can - anit-depressants, anti anxiety, pain - 1st & foremost, and never be afraid to speak how you feel. My suggestion is to get a peg before treatment is too far in...you might need it, if not, it can come out easily. You might not be able to eat nutritional food when you are full on into your treatment, so you will need nutrution, vitamins minerals etc. You might want to invest in a tablet crusher, but always ask if the tabs you get can be crushed. There are meds you can take in a liquid form. Doesn't matter where in the world you are, we are all on the same ship......Jeanna xxxxx
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jayne, I am sorry you have to lose your teeth along with everything else you will go thru.I like a few others here lost mine too. To me this was one I wish never happened. Dont forget we are all different. If they mention Rad seed implants, think this one over long and hard. This procedure has caused me more problems than anything else. You will make it thru and be fine I pray. Good Luck As for the change in looks, LOL I'm used to that face I see in the Mirror now. He really isn't Ugly even with the nose keeeping the chin company.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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