| | 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 | Welcome to OCF Carol! I have sent you a private message (PM) as well. Please take a few minutes to review the messages. Take a look towards the top of the page in the center next to where it says My Stuff and click on the flashing envelope. From what you wrote, I would highly recommend taking him to a large CCC. Luckily you have a major CCC right in your state, Moffitt is one of the best. Where you go really does matter! Especially if the case is complicated. You will want top doctors who have the most experience treating hundreds of similar BOT cancers. I see others have mentioned this to you so I will provide the CCC list in case you want to look further. List of Cancer Centers Best wishes!
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: Aug 2013 Posts: 15 Member | | OP Member
Joined: Aug 2013 Posts: 15 | Today is the final radiation treatment, and the 3rd chemo (cisplatin) was yesterday!! Tim has made it this far with REMARKABLE success.
His neck has just two small irritations on it. (Lotion or Aquaphor on his neck everyday after the 2nd radiation, then a shower to wash all of it off in the morning before the radiation - he used Olay body wash with shea butter. I mention this because the radiologist said that if he put him in a room with 10 others undergoing this same treatment-they would all hate him because his neck and skin are looking so good)
He is still able to eat (although everything tastes like cardboard). He forces himself to eat a small bit of something everyday. Crackers, or bread and butter or jelly, soup. Just to keep his throat used to swallowing. He is drinking at least 3 Ensure/Boost a day (he has found that mixing them with some milk or water makes them thinner and easier to swallow. Magic Mouthwash is awesome. He has lost only 11 lbs.
Zofran for the nausea seems to be the wonder drug for the cisplatin. I will let you know how this does over the next few days/weeks post the final cisplatin.
Davidcpa has told me told what we may expect over the next several weeks,so we are trying to stay prepared.
Anyway- I just felt that I should post some good news and possibly be of some encouragement to others. I cannot thank all of you on this site enough!! Reading your posts has gotten me through some bad days, and helped me hang onto the emotional rollercoaster of cancer and treatment!!
Caregiver to Tim(Best friend and love of my life)55 years young!!
Small BOT SCC (HPV+) with mets to 2 large and 1 "cluster" of right neck lymph nodes. DX 7/2013
Treatment started 8/2013. Completed 10/9/2013 IMRT 70GY over 31 days X2. Cisplatin X3 No PEG.
PET Scan 1/15/2014 NO Evidence of Disease
5/18/2015 NED with follow up visits to oncologist and Radiation oncologist every 3 months.
Cautiously Optimistic and starting on the journey to recovery!
| | | | | 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 | So awesome... hopefully he stays the same and sails through recovery. ;o) you are doing an awesome job as caregiver.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | I'm just going to say Thanks for being an awesome caregiver; then I'll repeat what Cheryld said!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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