| | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | So went to my Oral Surgeon today because I've been feeling more pain in my mouth. I knew I would have some pain as I came off my pain medications but it was getting very uncomfortable. My OS informed me that my trismus is getting better...which will make it easier to pull more teeth.  I have one molar coming out and possibly two more. He did say that my mouth was just so dry so I'd continue to have these issues. I'm not quite sure what more to do as I use all of the biotene products and drink water constantly. Anyway I knew this could be the case so it doesn't surprise me...just another blow to the ego I told myself I'd relinquish. Yep that was me whining.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | That's a shame Eric. I wish I had a cure to our dry mouth issues.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Eric
Bad luck about the teeth. To echo another post of David's, be careful of what you wish for as there is indeed a "cure" for dry mouth, although it is worse than the condition. I carried a water bottle with me everywhere (in a nice masculine water bottle holder my wife custom made that displayed two of my Marine Corps Marathon finisher patches) and hated my dry mouth the first time around. The "cure' is simple: have your epiglottis scarred and frozen by radiation and surgery, then sever a nerve, and voila: the formerly non-perceptible trickle of saliva will have nowhere to go (even after TX, most oral cancer patients swallow 6,000 times a day just like before unconsciously)and it's the end of dry mouth. Every time you take a sip of water, or a bite of food, be glad you have dry mouth that results from swallowing the very very reduced saliva you still do generate.
That said, I still have my teeth so once again you trump me for troubles. Your strength and courage inspires us all Eric
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Oh, WOW. Eric, that will be another appt. I need to make is with my dentist. I am going to tackle one problem at a time. I have noticed that two of my front teeth are loose, and I am hoping that tighten back up. We will see. I am sorry you have so many problems.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Geez Eric, life just won't cut you a break. Does this mean you will have to do hyperbaric oxygen treatments?
Are you going to be able to have a partial made? They pulled all my rear molars prior to radiation so I have two partials. The good side of this is when I put them in the morning, they start the saliva glands working.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Eileen, I don't pay attention of the breaks I fail to recieve from life as it would only make me bitter. I have gone through HBO to the tune of 35 dives so I'm ready for some teeth yanking.
Partials are not an option for me and I have a team at the UW looking into implants however it doesn't look promising.
Charm, one thing I realize is that my situation could always be worse so I try not to complain. I read about Jim's, Christine's and your experiences and find strength in all of your outlooks.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Really sorry to hear about your teeth Eric.
I have just had stage 2 done for my teeth implants into my reconstructed jaw. (hip bone) Just in case there are other members interested in teeth implants I will start another thread. (there is a photo of my xray following stage 1 on my Face Book )
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Eric - If you wish to discuss implants let me know. I spent a great deal of my life designing dental implants, the prosthetic attachments to them, and lecturing about the same at universities. I owned a class three medical device company that among other things manufactured dental implants. There are lots of different designs with pros and, con's, and I know a bit about success rates in radiated bone. I keep thinking I am going to put all this on the web site since I understand it so well, but it has been a low priority with so many other alligators on my rear, so I just haven't had the time to get to it yet.
By the by, I have some Idaho questions I'd like to ask you as well.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Brian, I sent a PM. Thanks everyone for their input and comments.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Hi Eric, sorry about the teeth. Such a problem to add to the other problems!
But on the lite side, you will be able to brush your teeth faster now!
Whining id OK, we all get one whine pass per day
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
