| Joined: Jul 2012 Posts: 2 Member | OP Member Joined: Jul 2012 Posts: 2 | Completed treatment on 6/14/12. Am improving every day, but have no saliva. Want to eat, can even swallow liquids without much difficulty, but can't swallow food. When will I be able to? Thanks very much, Tom
I was diagnosed March 2012 SCC T1N2A, Base of Tongue Primary. HPV Positive, Non Smoker, Casual Drinker. 60 years old Completed 7 Erbitux and 33 IMRT Radiation June 14th. Am on the road to recovery, have PEG (5-14-12)-- NO SALIVA!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Tom, welcome to OCF. The dry mouth will stick around for a few months. Some members carry a water bottle with them for years. Others have found success with taking saliva stimulating meds. I tried them but didnt like the side effects (sweating). Docs say one month of recovery for every week of rads. Everyone is different and will recover at their own pace. Hang in there, things will slowly improve.
best wishes with your continued recovery. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | My husband had pretty bad mucositis - took him three months to start in on solid food (if you can call an easy over egg solid). We got pretty creative with protein shakes before that.
His saliva is returning - dinner takes about one glass of water instead of 3 or 4. It is frustratingly slow, but better than the alternative.
Best wishes on your recovery!
Last edited by Maria; 07-08-2012 05:53 PM.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is 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 | First off remember that we all can recover differently so what anyone says may not apply to you. We are similar in Dx and Tx except I had Cisplatin and I didn't have a PEG. For me it was appx 3 weeks PT (post Tx) before I really wanted to eat solid food and it was 4 months PT before I could taste much of anything. At 5 months I had another positive bump in my taste but it wasn't until 14 months PT that I really felt a big improvement in my taste and saliva. It took me a full 2 years to get to the point where I didn't see any further improvements. I always drank Carnation Instant Breakfast VHC with every meal to boost my caloric intake and I tried to consume 3000 cals each and every day in addition to water. At first the eating was so slow that my food would get cold before I finished and my portions were small.
Time improves everything but you must be patient.
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: Jul 2012 Posts: 2 Member | OP Member Joined: Jul 2012 Posts: 2 | christine Thanks for the info tom
I was diagnosed March 2012 SCC T1N2A, Base of Tongue Primary. HPV Positive, Non Smoker, Casual Drinker. 60 years old Completed 7 Erbitux and 33 IMRT Radiation June 14th. Am on the road to recovery, have PEG (5-14-12)-- NO SALIVA!
| | | | Joined: Jun 2012 Posts: 2 Member | Member Joined: Jun 2012 Posts: 2 | My Dad had the same thing happen with his oral cancer. He had Stage 4 Retromolar cancer, surgicallly- a radical neck dissection and a pectoral flap to rebuild his jaw. He has been G tube dependent since 2002. He produces no saliva- a side effect of radiation, and it never did return. He got used to it. He uses oral swabs, and wet washcloths to keep the oral cavity moist.
Best of luck to you | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2011 Posts: 126 | Hi Tom, I am six months out of treatment, and I have recently (within the last few weeks) finally seen a small improvement in my saliva . I have noticed recently I rarely have been getting the dry mouth attacks, and I am finally sleeping through the night - previously I was waking up 5-10 times every night with my mouth so dry I couldn't swallow. One thing I found extremely helpful in the meantime was the Biotene dry mouth gum. I carry a pack with me at all times and it has really saved me a few times at work when I was talking to a client and didn't have any water handy. Good luck!
Emily - 24 years old at diagnosis HPV-, no risk factors T2N2b Squamous Cell Carcinoma Left oral tongue, poorly differentiated Hemiglossectamy, reconstruction, partial neck dissection 30 Radiation treatments, weekly chemo (cisplatin) 1/13/12 last day of treatment Diagnosed October 2011
| | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | Hi Tom, I was lucky enough that I didn't need radiation, but since I have a pretty intensive tongue surgery I went a long time without eating. I was so fricken hungry!! So I started taking foods that were really moist like , chilli, potatoe soup nice thick gravy soups and threw them in the blender mmmmm it was delicous. Then I started eating similar foods and not blending them, like ravioli, I would smother it with sauce or gravy, and it would slide right down. Then my dad (bless him) started taking me to buffett resturants everyday, I would then try everything and little by little I was able to figure how to eat. Somethings I needed a lot of water to wash it down. Some things I just couldn't manage to move aroung my mouth or down my throat with my messed up tongue so I would use water or my finger. But it really helped to have all the variety to play with. 2.5 years later I eat just about everything I want. Some things are a little more difficult than others, but if I really want to eat somehting, I manage. Also, there is a lot of good information on this site about food. I am sure Christine knows where to find it. It helped me a bunch.
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2006 Posts: 43 | Tom, I am years out from my radiation and still have very little saliva. It takes some adjustment over a while but you will learn tricks like carrying water at all times, adding foods back slowly, drinking with solid foods, etc. I'm not saying yours won't return but it's not something you can count on.
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs 2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16 3rd - SCC right base oral tongue, surgery, hope. | | | | Joined: Jul 2012 Posts: 50 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2012 Posts: 50 | Hello Tom. I'm about 8 weeks out of radiation and this week I have finally noticed some overall improvement. I went from having way too much ropey thick salvia to having very little sticky salvia. Now with all the extra out I'm able to take really few bites of food. I have to let the food sit in my mouth and get soggy and then I can chew. It's kind of like I have to let my mouth know what's coming, what's in there and give my mouth time to get adjusted each bite. You'll get there and a lot of people I've spoken with got at least some of their salvia back. I've also read a few clinical studies where a majority of the people studied got quite a bit of their salvia back.
Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
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