#98316 06-28-2009 01:17 PM | Joined: Jun 2009 Posts: 5 Member | OP  Member
Joined: Jun 2009 Posts: 5 | i HOPE SOMEONE CAN OFFER HELP: MOM HAD OC TONGUE SURGERY 1 YR AGO; AND A RECONSTRUCTION 1/09;CONSTANT BURNING TONGUE PAINS; SHE CAN'T COPE ANYMORE; PAIN MEDS ARE BEYOND NORMAL.SHE'S ONLY EATING ENSURE; EVERYTHING ELSE "BURNS"; SHE, AND WE, ARE AT END OF ROPE; ANY SUGGESTIONS APPRECIATED.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | It sounds like she may have thrush. Has she seen the ENT?
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jun 2009 Posts: 5 Member | | OP Member
Joined: Jun 2009 Posts: 5 | gary, thank you for your answer. been down that route and this is way way more than thrush. we're talking burning sensation which makes eating and living almost impossible. | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I had my tongue surgery on 8-3 07,, then had rads and chemo after I had my teeth taken out and the rad seed implants on 2-29-08. My tongue still burns as much as it ever did . Your mom might benefit from some magic mouth wash and some biotene mouth wash and brusing her tongue with biotene toothpaste. This I have to do 2 to 3 times a day. The Magic Mouthwash works very good. This is no pain free surgery we all had. It is going to hurt for however long.Good luck.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I guess I should have said that I had a few biopsies done and 2 nasty infections before I ever had the surgery.
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Do you know what exact pain protocol she is on? My senior dad thought that Tylenol was an adequate pain killer when he was dying from cancer (even though he had Dilaudid and other strong pain meds available).
I mention the thrush because I am over 6 years post Tx and if there is a pH imbalance I can still get it.
Did she have radiation?
She may have nerve damage from the surgery which is causing "phantom" pain. Maybe a consult with a neurologist would help.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | 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 | She could also be experiencing pain from nerve regeneration from the surgery but she really needs to have her doctors to get involved.
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: Jun 2009 Posts: 5 Member | | OP Member
Joined: Jun 2009 Posts: 5 | my mom is now on 100mg pain patch(fentynol?)and 20mg oxycoton; that follows percosets, dilaudid,and a host of other stuff. we tried the magic mouthwash and biotene, both too strong so we diluted with maalax; that ended in a 911 call to hospital.
i think it's something neurologic - but so far no specialist confirms.
thanks for you help. i tried calling sloan kettering for help today, but becuz she's "cancer free" they will not assist. my next call is to dana farber institute. | | | | | Joined: Jun 2009 Posts: 5 Member | | OP Member
Joined: Jun 2009 Posts: 5 | hi gary,
i believe you are right. which docs? surgeons not very helpful, pain managers just try new cocktails that they hope will help. i think she needs new neurologist.
thanks so very much. we are desparate and i fear she will overdose herself on all the pain meds a la m.j.
| | | | | Joined: Jun 2009 Posts: 5 Member | | OP Member
Joined: Jun 2009 Posts: 5 | i replied to david and said "gary", to both, i very much appreciate your thoughts. | | |
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