| Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Hi Folks,
Well I just finished 10 weeks post TX. I am doing IK, I eat lots through my mouth and will get the PEG aka Umbilical Cord out in a couple of weeks. I am still wek and need naps but I look better and I feel more positive, So here is a question. I am eating most anything I want, meat, pasta, vegies, bread and evan chocholate. I almost always need a sip of fluid with each swallow. I can handle that, What does bug me is how coated my theeh get when I eat. There is almost a meal caked to my choppers. I need to floss and brush after every meal. I guess it is a good thing. I am even gaing some weight back, I think, I went from 195 to 160. Also my taste buds aere comming back
I eat bird sized bites and do take a while to consume a meal. I use to be the fastest eater, I am dead last now.
So todays Thanksgiving dinner will take a while to get down, but it sure will be good!
Happy T'
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!
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Some day, I'm sure Water Pik will recognize all the advertising I have done for it and pay me, but until then - this is still free advice I don't go anywhere without my Water Pik I use it to cleanse my mouth BEFORE I brush. At night, I use it twice - 1st to cleanse all the areas of my mouth, then I brush, then I put biotene mouthwash in the water pik and have another go.
It is a Godsend for getting into all those nooks and crannies that surgery has created in my mouth. Let me know what you think if you try it
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | I do have one and will try and report!
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!
| | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | I have the same problem with the particles in my teeth. Hadn't thot of the water pik - Great Idea! Steve, I can sure relate to your comment about being the last one done - it takes forever to get a meal down. Sometimes, I just loose interest and quit. But I guess I am just grateful to be able to eat again, so I need to be more patient.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10 | | | | 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 | Steve,
You are doing fine. Your saliva now doesn't contain the same ingredients as it did pre Tx and that affects everything about how you eat. It should improve over the next 2 years so just be extra diligent about keeping your choppers clean. I don't (never did) use the Water Pik but I do try and rinse my mouth out and floss after every meal. I find that the longer food stuff stays in my mouth I continue to produce thick saliva so rinsing also stops that as well.
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 | Steve
Not really a bad thing to brush and floss after every meal. While those days are only a memory to me now, my oconological dentists kept repeating: Meticulous Oral Hygiene was now a requirement. That included using fluoride trays every night also. If you have not seen a dentist who specializes in post TX cancer patients, you might want to ask for a referral from your medical team. Without proper saliva you are at a very high risk for dental caries. And let me assure you that no matter how slow you are eating, you are a speed demon in comparison to my steady drip drip drip down the old PEG. It will get better and better as time goes bye. 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: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | I did try the waterpik this am and my teeth feel quite clean. Thanks for the tip.
MY RO did require I go to a dental oncologist so I do use the floride tray...everyday for the rest of time. O do want to keep my choppers, after so long I am attached to them Thanks all! 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!
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I also have a perio brush, a small brush on a handle, from Dentec Company that I get free from my periodontist. I use this before flossing to push the goop out from between the teeth. This is also handy when you are someplace where you cannot do full dental hygienge after eating. I also floss after every meal and even have be known to brush and floss between courses depending on what I'm eating. I just don't like the main course in my dessert. Ask your dentist or periodontist about the perio brush.
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | I have used the water pik for several days and I am hooked on it! Thakes all thak sticky goop and down the drain, thanks for the tip!
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!
| | | | Joined: Nov 2009 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 92 | There's a $5.00 coupon on the website, good 'til year-end.
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Thanks for askign this question, I'm gonna get me a waterpik now!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Dec 2009 Posts: 1 Member | Member Joined: Dec 2009 Posts: 1 | I am 8 weeks post tx. Scheduled to have peg removed on 12/16. Started out eating good, but now feel nauseous, mouth so dry. Tongue hurts, feels like it is on fire when it pushed on roof of mouth, gums. Depressed, at first started cooking, feeling good, now depressed, tired. Went for scan, come back in two months to repeat. Said I was a little early having it done. Does any of this sound normal? | | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | It sounds about normal to me, and I had a relativly quick recovery. You need a signature, so we know what treatment you had, but you need to give the eating some time. I did not have a PEG so I had to keep it up.
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | 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 | Joanie,
Have you by chance stopped or decreased any meds recently?
Everyone can react differently to the Tx and we all have our good and bad days post Tx especially early on and 8 weeks is "early on" but I would pass this factual situation by your RO and see what comments he/she has.
If you have had recent blood work you might want your TSH levels checked. It's a tad soon for your thyroid to have crapped out (if it's even going to) but it's worth a look.
I know you are new but it's best to start your own thread instead of tacking on to someone else's. So next time you have a different question go to the Forum that best describes your question and then click on New Topic and post away.
As Flip mentioned above it also helps responders to read your Signature Line (see mine as an example) along with each post you make. It's easy to do just go to your Profile and edit your Signature Line.
Welcome to the site.
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: Jan 2008 Posts: 29 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2008 Posts: 29 | The Water Pik ROCKS!!!! It's a God send!!! Been using mine for years!!
32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me. | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | I started using a water pik during Tx. Now I just use it once a day at night before the trays.
I put about a quarter teaspoon of 50/50 salt and baking soda in the (warm) water.
I have gone from getting cleanings every three months to every four months. Even at that there is hardly any plaque buildup, but it is good to get checked out frequently by the Dentist.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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