| Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | I rinse my mouth at least three times a day and more often depending on what I have eaten. I have found several things, if I do not immediately rinse the obturator I have a lot of trouble with my noise dripping, my mouth hurts due to a crumb being in the hole, and a major embarrassment if you sneeze. I always carry a cup and a toothbrush with me and head for the restroom after eating. I also started using a water pic at night to thoughly clean the hole. I was amazed how much "gunk" I get with the water pic that I didn't get with brushing. This was not recommended until after I finished radiation.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 | If you don't have a waterpik, a simple bulb syringe works quite nicely to rinse out the surgical site (and the rest of your mouth). Use with mildly salty, warm water. These were instructions from my surgeon for after the site had healed. I would wait until after radiation, as Sharon says above, to use the bulb syringe -- it will be too uncomfortable if you have sores.
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Thanks so far so good! I haven't had sores yet although I go have a sore throat. I'm trying to build myself up for more chemo but food tastes off and I have no smell or taste buds! It's hard to want to eat and then when I do it tastes horrible and I don't want it! Iv juiced carrots etc and had milkshakes and soup. I can drink orange squash too. Have you all got taste back? I have been cleaning obturator and have picked out crusts now it's gross but has to be done! I find I'm still gagging quite a bit but it's not too sore yet and fingers crossed it won't be too bad. Thanks for all the tips and info it really helps md with this. Jayne x
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Glad to hear things are going well!
I got my taste back after several months. Chocolate was the biggest loss! But it's now all back to normal (two years out). Keep "eating" your shakes, etc. I don't know what you have in the UK in terms of nutritional supplements, but I drank Boost or Ensure by large quantities when I was in radiation. Helped to keep my weight normal.
Good luck with the rest -- you're well on your way!
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | My taste is slowly starting to come back too - 5 weeks ago today was my last treatment. It takes time but it will happen. Congrats Chris!!!! 2 years awesome!
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: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | I think when you don't have your palate, taste is always effected some, but I think you eventually get use to the "new normal" and you find new favorites. I love my milkshakes and still like to end the day with one!
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yes apparently there are taste buds on you palate! Glad you are enjoying you new normal!
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: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Yeah, there's something about having a palate that means better tasting ability. I think it enables you to move the food around your tongue better or something. Sharon, I too still have a smoothie almost every day -- it's my "comfort food!"
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Jun 2011 Posts: 6 Member | Member Joined: Jun 2011 Posts: 6 | Hi Michelle, I'm Sharon. Had my surgery in January of this year. On my first opturator with teeth.lol I speak for nasal most the time. But when I go in for an adjustment it's much better and then by the time I go back i'm nasal again. That just means it needs an adjustment. Just be sure and tell your dentist about if there is pain or any problems. This is your permanent one you have? I wish you luck and it will be fine. Just one day at a time. | | | | Joined: Jun 2011 Posts: 6 Member | Member Joined: Jun 2011 Posts: 6 | I've had trouble finding anything I want to eat. I don't feel like cooking anything and nothing appeals usually. I do still love my cheese sticks even though i have to flatten em to eat em. lol Taste the same which not everything does. I used to love peanut butter and toast and now I don't like the taste. I'm hoping at a later date to try again and it be what I call normal. I think i'm going to try the water pik. I was having trouble with build up. The doctor said if there is a bad odor you smell in your nose that means it's built up. Well I tried what they told me to do to get it out. The green sponges on the long white stick and that didn't work and then tried the gauze on the finger which did work. Disgustingly so. Yuck! But it also bled from me cleaning it from pushing to hard i guess. I found the best thing for me that works is cutting the white stick down at least half way on the sponge so i have more control and it's been doing well. But it is a constant battle. But worth it. So glad my friend sent me this link. | | |
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