| | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hello All:
You may already know this, but I just found out and decided to mention it in case you are unaware and might be experiencing problems. I ALWAYS had sugar-free gum in my mouth during the day because, not only did chewing gum help make saliva, it helped to disguise the sweet, putrid taste I have. As far as I can find, ALL sugar-free gum has something called Sorbitol in it. Usually it's the first ingredient listed. Anyway, I was experiening some problems and decided to research it, and found: This medication is used as a laxative to treat occasional episodes of constipation; SIDE EFFECTS: Nausea, gas, diarrhea, stomach cramps or anal irritation may occur. I checked with my gastro doctor, and he told me to stop chewing it. Now I'm having a hard time finding sugar-free gum without it. Do any of you know of a brand and where I can get it? The Sorbitol might not be a problem for any of you, which would be great, but just thought it was something for you to know.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Apr 2010 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 38 | Julieann,
I have experienced the same problems with sugar free gum. In fact, I have had that problem with sugar free candies and etc. I'm not aware of any sugar free gum without Sorbitol. I will keep my eyes open for you! I have a feeling if you search in the "Natural Foods" section at the grocery store, (or Whole Foods and Trader Joe's) they may have gum made without Sorbitol. It's worth a shot. Good luck in your search. I will keep you posted if I find anything:)
Ashley
Cancer found on left bottom portion of my tongue on March 9th. Non-smoker and light drinker. Tumor removed March 30th. Stage 1. No chemo. No radiation.
| | | | | 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 | Biotene makes a dry mouth gum, which I use during the day. It may be a little hard to find locally, but works really well. Use the OCF link on the main forum page to enter Amazon EVERY TIME you go there for anything, and OCF gets 4% of your purchase as a donation from Amazon at no cost to you but a mouse click. Every little bit helps p[ay the costs of operating the foundation. http://www.amazon.com/?ie=UTF8&%2AVersion%2A=1&tag=oralcancerfou-20&link_code=hom&%2Aentries%2A=0 search for Biotene gum
Last edited by Brian Hill; 06-01-2010 08:00 PM.
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: 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 | I also keep Biotene gum in my mouth almost all my working hours and they list their ingredients as Polyglycitol first and Sorbitol second.
With that said I have NEVER experienced any side effects or problems from this gum and I would hate to have to go a day without it. It frees me from having to carry a water bottle with me everytime I leave my office. I can carry on long conversations which I am prone to do without having to constantly sip water. I chew it even in City Council meetings. I did make an announcement my first or maybe 2nd Council meeting about why I chew gum and now everyone understands that's just a part of me. For me I find it's best to only put 1/2 a piece in my mouth and I find that it lasts for hours but when it goes, it goes quickly from gum to little pieces of dust.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Thanks David and Brian for replying. I have such a bad reaction to that crazy sorbitol, I'm not sure if it'll work for me, but I'll get some and try it, via the OCF link on Forum to order it.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hey Brian and David - would you say that the Biotene gum is vastly (or even a little for that matter) superior to regular gum with Xylitol? My dentist cousin, upon learning of my condition, wrote to me "chew tons of gum with Xylitol", something my local dentist also recommended. I've luckily gotten some of my salivary function back - by no means all but it's a start - so I don't feel the need to be chewing gum all the time. A nearby glass of water is helpful.
But if in your opinions the Biotene will help me more than the Trident I'm now using I'll definitely give it a chew! And, needless to say, get it through the link (which I've now added to my favorites; I get my Gel-Kam from Amazon but rarely shop there otherwise, but I will from now on, and also send the link to friends)
thanks much.
Dee Too
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 | Biotene also has some active enzymes in it that are now missing from your mouth because of the xerostomia. The release of them from the gum, toothpaste (PBF version ), and mouth rise will help balance the flora in your mouth which will help with periodontal problems etc. So there is something more to using it. Just for the record - since Biotene was bought by GSK a couple of years ago, (used to be owned by Laclede) they are not donors to OCF. This advice is not motivated by anything other than it seems to 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: 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 | And it works for me. It didn't at first but I kept trying, just like we should with everything during our 2 year recovery.
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 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Good advice, gentlemen. Thanks to you both.
D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2011 Posts: 20 Member | | Member
Joined: Mar 2011 Posts: 20 | Try to find a gum that lists Zylitol first. I use Zylitol instead of sugar. As with all the sugar alcohols (sorbitol, malitol etc, you could have some stomach upset. However this is temporary.
Stage 4 squamous cell tonsil cancer. Two lymph nodes involved surgically removed before source found to be tonsil. Implant radiation right on tonsil, regular mask radiation therapy for two months and a final Implant radiation. All clear confirmed by PET scans for 6 years.
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