| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Take soemthing with you to do while you get chemo. Book to read, crosswrod puzzles, pocket poker machine, just anything. It takes about 45 minutes to get thru a treatment. I agree with all that the others just told you. Just be tough.
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
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | ezjim, Thank you for all the information. It really means a lot to get answers from people who know what really goes on as they have been there. My oncologist seems to downplay radiation like it's a walk in the park, but from what I have read on this web-site, the long and short term effects from radiation can vary from person to person but can be very serious and lifelong. You are all beautiful people for taking your time to help those of us who are afraid and not sure what to expect. God Bless you all. Also, does anyone know if you must leave your fluoride trays in water @ night? My dentist didn't tell me to and I haven't been doing that. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | DonB, Thant's excellent info. My dentist didn't tell me to keep my trays in water overnight. I hope I haven't made a mistake. I will call her tomorrow. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | My dentist prescribed Prevident (Colgate) 1.1% Sodium Fluoride, or the generic Ethedent, also 1.1% Sodium Fluoride. I have a prescription plan as part of my medical insurance, so I only have a couple of dollars co-pay.
Like David, I just put the stuf in the trays and then keep them in for 30 minutes.
Last edited by Pete D; 09-22-2008 05:06 AM.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I have always, like I was told to do, cleaned my trays after each use and air dried them to use the next day. The water bath was never mentioned by my dentist. Twenty seven months of use and one night with one of my cats and their still as pliable as when I first got them.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I sometimes put water in mine overnight to soak out the paste/gel deposits.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I just rinse mine out after using them at night and then let them air dry. I rinse them out again before I use them at night also.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Angels, good luck to you and as you know reactions to radiation vary markedly among us. One thing's for sure, it's "no walk in the park" and if he said it that's because he hasn't personally taken that walk. Keep us informed of your progess in the coming weeks of tx.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Thank you so much William. What I am trying to find out about now is if I may be in a catagory of carotid artery blowout so I am researching that as I haven't been able to meet with my Dr. yet on that matter. I have moved in with my son and his family while I go through treatments and that I am sooooo glad about. I am a very lucky Mom to to have such a wonderful son. Thanks again, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Sep 2008 Posts: 10 Member | | Member
Joined: Sep 2008 Posts: 10 | Hello Angel, I'll be seing my RO on Oct 7 to plan for my rads. Most probably we'll will start the treatment at about the same time. No chemo planned either. I had a total glossectomy in April and a mandibulectoy in Aug. My lymph nodes are all negative. Let's update each other on how we will be doing, shall we? Sharifah http://hiduplama.blogspot.com
SCC on the tongue. Stage II. Total Glossectomy 04/07/08. Recurrence in July. Also Stage II. Partial Mandibulectomy 08/13/08. Radical neck dissection in both ops. All lymph nodes negative. Radiation starts 10/10/08
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