| Joined: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | Thanks Anne-Marie! I am actually from further East (New Brunswick) but ended up falling in love with an Ontario boy :-) Your son was so young to be diagnosed! How lucky he was to have you to get through! I mentioned to ChristineB that I really dislike the Magic Mouthwash. I would rather put up with the sores and get whatever enjoyment I can from eating than numb my whole mouth. Would be interested in what your over the counter alternative was. The baking soda/salt rinse is providing some relief, along with making sure my mouth is clean and rinsed. Lots of water is also helping. Just interacting here is lessening my anxiety and I will be here lots!
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | Joined: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | I am glad that you are able to eat what you want, that is a good thing! I think I read a post you made somewhere that said you are quite young when you were diagnosed and that you were still very scared about recurrence. I hope you can feel more confident that you will be okay as time goes on. I know I have struggled with that. Just reading here about so many who has gone through this more than once actually is making me feel more confident that, even if a recurrence happens, I will be able to get through it too! Unfortunately, I did have lots of risk factors. I quit smoking years ago but had smoked for 10years when I was younger and I drank quite a lot in my University days. I don't know, it all still feels unfair, whether you have risk factors or not. Just living is toxic. At least that is what I figure :-)
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | Joined: Jan 2012 Posts: 14 Member | Member Joined: Jan 2012 Posts: 14 | Lori, very sorry you are still having side effects. I wonder about the long-term effects of radation all the time. It seems like treatment varies depending on where you live, I am on the west coast many of the RO�s and ENT�s don�t recommend surgery unless absolutely necessary (very subjective term), as they want to save it for a reoccurrence. The approach they called it was �organ preservation�. I had T2 N0 and was just over 2 CM BOT. Another co-worker had his show up in a lymph node both of us were HPV+. He was several years ahead of me and they used radiation and chemo, where I only had radiation and we used different treatment centers. On the east coast and other locations, surgery is part of the treatment. In my area, we are seeing more doctors use robotics for surgery but it�s been slow in coming. My wife had open heart surgery over 6 years ago, as she needed her mitral valve repaired and it was done using robotics.
Dx 11/19/2011, SCC T2(2cm)N0 M0,BOT,HPV+ Tx 35 Rad(6996cgy)IMRT, No Chemo, Tx Done 1/17/12, Never smoked, rare drinker, 52-Male | | | | Joined: Mar 2012 Posts: 9 Member | Member Joined: Mar 2012 Posts: 9 | Hi, LBB! I had radiation following my radical resection and sometimes I don't produce enough saliva. I can't eat anything spicy (even salt) or acidic, which greatly limits what I can eat - but what I can eat, I eat plenty of! I take small bites of soft food and am stil here 19+ years later! I found Magic Mouthwash to be a great help. Good luck to you and hang in there! | | | | Joined: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | Thanks Mark, I think you are right. It is quite a journey, isn't it? I hope your journey is soft.
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | Joined: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | Holy Cow...19+ years!! Amazing and wonderful! I am really hoping to avoid the Magic Mouthwash, used it A LOT during treatment and really disliked it immensely. I have already gotten great advice and am feeling more hopeful that I can push through this. Hearing of your success in being here 19+ years after the beginning of you cancer journey is heartening. Cheers!
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Lori - The alternative to Magic Mouthwash that my son remembers is Biotene and it is an over-the-counter item.
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: Mar 2012 Posts: 15 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Mar 2012 Posts: 15 | Ah yes...I am using Biotene toothpaste now. The mouthwash has some form of acid in it, so it is not great right now. The warm water/baking soda/salt rinse ChristineB suggested is providing some releif. Thanks for letting me know!
Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0 Age 46 at DX RT June - July 2009
| | | | 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 | You are welcome! Im glad to hear the mouth rinse is helping! Sometimes even when we are out of treatment for years, going back to the basics can help. 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yup I lived on the stuff for a while.. that and manuka honey. hopefully you'll feel better soon.
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
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