#82071 10-14-2008 08:54 PM | Joined: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2008 Posts: 117 Likes: 1 | I ended treatment in July 2008. I had dry mouth at times, but other times it seemed a little moist. In the last couple weeks my mouth has gotten even dryer than before. It is so dry now it almost feels like there is an astringent applied to it.
Anyone seen this before? Any advice? Could the fluoride treatments be doing this?
BTW, a radiation therapist told me that acupuncture can help restore salivary function. Has anyone here tried this?
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | How about that here in LA we are experiencing the worst Santa Ana desert winds conditions in 3 years- and the relative humidity is about 0%...... Welcome to how the new you interacts with changes in your world.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | I never thought about the humidity effecting dry mouth. I am going to Phoenix for a few days next week so I will plan for it.
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
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | Hey Andrew
If you search for acupuncture here, you will find that it seems to work for some and others not. If you're open to giving it a try, go for it and see how it affects your situation.
Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Mine is dryer then a desert sand storm. I am up to brushing ,3 to 4 times , my entire mouth and especially where my teeth were and the tongue and roof of it,. It makes a big difference.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | 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 | Hope you are feeling a bit better Andrew. Recovery from OC soemtimes takes much longer than any of us expect and the setbacks can be difficult.
Ive heard good news about accupuncture from my dietician in regards to saliva. Hoping Curt'sWife jumps in on this, I think she is very familiar with this topic.
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: Jun 2008 Posts: 13 Member | Member Joined: Jun 2008 Posts: 13 | Hi all, and first off sorry for delay in replying to this. I do have an opinion on this subject, and am actually quite passionate about it. I know all treatment doesn't work for everybody. However.....accupuncture was life changing for my husband. We go to Dr. Richard Niemtzow in Maryland. Found him about two years ago, and because we live on the West Coast tried to find someone closer who would do what he did. Failing there, we made an appt. with him, flew there (with no guarantees, mind you but we had NOTHING to lose). Curt's quality of life was so diminished with his complete dry mouth. Anyway, he looked at all the radiation records, evaluated Curt and said he thought he could help. Basically we fly in on Friday night, stay at a hotel near his office that he recommended, then Curt has an appt. on Saturday a.m. and Sunday a.m. (about an hour each). Needless to say, he had very positive results on the first visit. Almost unbelievable. As stated earlier, he had abolutely NO saliva. Always carries a water bottle. Constantly wetting his mouth. After the first treatment, we left the office with sugar free breath saver candies, with instruction to suck on every two hours (that's something he couldn't do since pre Cancer. Then we walked around the National Mall in 80 degree weather for over four hours. Curt did not need to wet his mouth at all. Now, I don't think he'd say the return was "normal", or even "great", but certainly "good" and life changing. (He's a teacher and coach so is constantly talking. This treatment certainly makes his job easier.) On the plane home, we both cried. We wanted to shout it to the world! He's an amazing man, and we love him! Very nice, professional, positive, real, experienced. He�s a board certified MD, a Colonel in the USAF. The reality of it, however, is the results are temporary. After the first visit, Curt was with saliva for about 7 months. Then it was gone. So, we made another appt. (and Dr. Niemtzow is very quick to get you scheduled) and he had again good results. We are due to go back for a third time in January. Again, there are no guarantees. But it worked for Curt, so we're very positive about it. What we learned from research and talking with Dr. Niemtzow is that he believes you only need two treatments. In fact the last time, he had such good results on the first day that he said Curt may not need the second appt. (but he still kept it since we had come so far and wanted to be sure of positive results!) I�ve read other posts where people have tried accupuncture and go consistently/indefinitely with varying results. I can only vouge for this Dr. and his results with Curt. Check out his website: www.N5EV.com and email him. He's very good at getting back to you quickly! Hope this helps!
Wife/Caregiver to husband Curt, 49. Tonsil SCC. Chemo and radiation completed July 2005.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I don't think it's the fluoride -- Mine is slowly getting better, not good, but better -- I use the Biotene mouthwash for the enzymes and found that chewing the Biotene gum will increase saliva flow.
Of course, right now I can't really tell because Light EggNog is in my coffee and I drink it with meals -- It really tends to coat everything -- Plus I am still drinking my Nutren 2.0 (still have five cases!) with NesQuick flavoring (560 cal total) and that leaves a coat!
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jan 2009 Posts: 225 | Hi Andrew, My boyfriend martin is going throught the same thing. Everything seemed to be going well and better and now 12 weeks after treatment his tongue is like sandpaper again and even wet things taste dry. He has terrible salty taste again and his speech is strained because of the dryness of the tongue. The consultants told us if taste and saliva came back before, they would come back again, just to be patient, but it seems like a big set back. Has anything improved for you since your last post?
Girlfriend to Martin 49 years old at diagnosis Diagnosed with SCC unknown primary June 2008. Cancer found in single node Stage N2A (3 to 6cm). Tonsilectomy 16th june, Radical modified neck dissection left side 30th june. 30 TX radiotherapy ended 9th October First comparative study scan came back clear
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