#75469 06-11-2008 02:17 AM | Joined: Jun 2008 Posts: 8 Member | OP  Member
Joined: Jun 2008 Posts: 8 | i was operated for tongue cancer in nov 2007 and radiation got over in Feb 2008. since then i am having dryness in mouth and sometimes i feel stiffness near the operated area. if anyone has faced a similar condition, please let me know for approx. what duration this condition will remain?
thanks
Samta
| | | | | 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 | Samta,
Welcome to this site and I'm sure you will find it most helpful. It would be helpful if you give us some details of your surgery and radiation treatment but even without the surgery and assuming you received the same radiation treatment most of us got you can expect your dry mouth condition, common to us all, to slowly get better over the next year plus. I was 16 months post Tx before I was satisfied with my improvements and thankfully so because it hasn't seemed to improve since then.
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: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | Hello Samta
Dry mouth is very common in those of us that got radiation treatments. The radiation can damage you saliva glands reducing their function to sometimes zero. You're only 4 months out post treatments so you may start to see some improvements soon. It will probably start out and be slow progress, but hang in there.
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Jun 2008 Posts: 8 Member | | OP Member
Joined: Jun 2008 Posts: 8 | Hi David
thanks for your response
my operation details are as follows
left radical neck dissection with extended hemiglossectomy with left segmental mandibulectomy with reconstrution with pectoralis major myocutaneous flap with temporary tracheostomy 18 lymph nodes were removed only one was found positive 32 sittings of raditions on IMRT and 5 electron booster to posterior neck on linear accelerator were given radiations ended on 22 feb,08 now swelling on face comes of n on will there be every thing normal? | | | | | 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 | Samta,
I don't understand that questions you seemed to have asked at the end of your post?
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Does anybody have experience with numoisyn? This comes as a liquid and lozenge.
I used to take Exovac initially but do not take this any longer. There is no saliva issue during the day however, waking up in the morning is a different story.
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: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Numoisyn did not work for me.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | David,
I think that Samta was asking if everything will ever be normal. Something almost everyone would like to know.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2008 Posts: 8 Member | | OP Member
Joined: Jun 2008 Posts: 8 | David
i wanted to know will every thing be normal.will i be able to eat normal food.due to stiffness in neck i feel weight on my shoulders.i underwent salivary gland scan last week.the results werenot good rt parotidgland and left submandibular glands are not working and rest two are showing littlebit of stimulation .lets hope for good | | | | | 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 | Samta,
We all can recover differently due to the many variables involved but generally we all recover in the dry mouth and taste department especially when compared to how we are right after our Tx ends. I recovered very slowly and it took me 16 months post Tx before I was finally satisfied with my saliva and taste even though neither are back to pre Tx levels and may never be. You will adjust to your new norms and lets hope you can get to a satisfaction level like I did. Just don't set your sights to high and realize what trauma your oral cavity has been through. It's a miracle that we recover to the extent that we do.
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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