| Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi. John went for a check up yesterday with his ENT. His visits have now spaced out about every 4 months with the ENT, MO and RO. He is now 1 year and 4 months out of treatments. His taste is SLOWLY recovering. He says it is around 70% back. He was having some discomfort every now and again in his throat and his neck feels tight. The ENT scoped him and said that there is no evidence of the tumor. He said he still has a lot of mucus and the tightness he is feeling is from the radiation and scar tissue. He said the occasional pain could be from nerves regenerating. His main complaint is the constant dry mouth. It seems to be worse now than ever. This of course is causing a lot of dental issues. The ENT gave him a script for Evoxac to try and stimulate some saliva production. Just wondering if anyone has tried this and what was your experience? John's doctor told him sometimes it works and sometimes it doesn't. When I think back to where we were a year ago, we really have come a long way. John has regained 18 lbs. and LIFE IS GOOD!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Wanda,
We don't have any experience with Evoxac. Clark also has tightness in his neck and jaw. His taste has come back to about 85%, and his saliva production is good. But he still has intense pain. It is amazing how similar some things are and then how very different things can be among OC survivors. I am so happy that you signed off with LIFE IS GOOD! I hope that John continues to improve, that the Rx gives him relief, and that his pain issue resolves. All my best to you both!
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Evoxac works as advertised (for me). However, you need to be prepared to experiment a little. If you take too much you end up bathed in sweat. First time this happened it was quite disturbing.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | 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 | Check with your local CCC. They may be doing a study on dry mouth treatments. Moffitt is but I declined to get involved at this stage mainly due to travel time.
Is he using fluoride trays to help protect his teeth?
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.
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