CancerCompass message board discussion started by Caregiverlynn on 6/27/2006 http://www.cancercompass.com/message-board/message/all,5820,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has squamous cell carcinoma of his left tonsil and just recently completed 43 IMRT treatments and 8 chemo treatments (1 each week) consisting of carboplatin and Taxol. From everything we've read, we were prepared for him to experience the dry mouth. Instead, he has the exact opposite...profuse and nonstop secretions coming from the salivary glands in the back of his throat. This started after the first couple weeks of radiation treatment and have boggled the minds of everyone on his treatment team. Nothing, and absolutely nothing, has helped decrease the secretions. They are so bad that he cannot talk (he'll drool), can only sleep almost an hour before having to wake up and clear (blow) the secretions from his mouth, and certainly can't eat. Thank God we agreed to the feeding tube, because it's saved his life. If he swallows his secretions, because they are so profuse, he'll gag and vomit. Has anyone ever experienced this particular side effect? IF so, did anything help it? And, how long before it went away...and what were your experiences with it posttreatment. For example, the docs suspect that the opposite will occur, that he'll develop the dry mouth, but it's hard to believe with the amount he's producing right now. He'd actually welcome the dry mouth at this point. The benefits (yes, we've come up with some) include the fact that the secretions constantly coat his mouth and all the sores in there. He would be in so much pain if it wasn't for that. Also, the secretions are coating his teeth, so even though he started out with flouride trays 3x a day and brushing with flouride the same, he has been instructed to only brush, as the dentist said his mouth is naturally being cleansed. Unfortunately, there is an awful smell that is emitted, whether it be from the sores in his mouth or the secretions (considering what radiation does to the body), but it's nasty and I'm looking forward to when that goes away. Even if someone out there hasn't experienced the secretions, has anyone had the bad smell and how long did it take to go away? Thank you for listening and I hope to hear from someone soon. We continue to be positive and are waiting another 4-5 weeks to get the PET done to determine if he'll need a radical neck dissection in October, which the surgeon at Dana Farber wants to do if he sees anything "gray" on the scan. This is a great forum and I look forward to reading your replies. God bless. - Lynn Caregiverlynn Tue, 27 Jun 2006 00:00:00 GMT I can symphathize with your husband. I had the same type of reaction. I had 39 radiation treatments after a radical neck dissection for a recurrence of thyroid cancer that spread to the lymph nodes. About halfway through treatment, I started, almost literally, foaming at the mouth with horrible mucus/saliva from my throat. I would gag and vomit. I took plain Robitussin and that helped somewhat but I was still not without my box of tissues whenever, on the rare occasion, I went anywhere. I cannot tell you the number of tissues I have gone through since this! I finished in Nov. 05 and about 3-4 months later I started feeling better and the secretions slowed down, and I stopped taking the Robitussin because it dried my throat out and made it more painful. Unfortunately for me, my esophagus had closed and I was unable to swallow anything at all. Now, one surgery and six procedures later, I am still undergoing therapy to improve my swallowing and still completely dependent upon my tube. I still have problems with the mucus in the back of my throat when I try to swallow anything besides my own saliva. I still have to cough and spit several times a day, but it is MUCH better than it was and believe it or not, I do have dry mouth sometimes now, even though the back of my throat is coated. And when it is not coated it is very sore and dry. It is really strange. I still have a bad taste in my mouth and I brush my teeth quite a few times in the day to get rid of the smell and taste. However, my mouth is not sore at all now and I think from my limited experience that my taste buds are fine! My drs too were mystified and acted as though they had never heard of this problem. You have two kinds of salivary glands, one makes sticky component, the other clear. My therapist told me that my "clear" glands had "died" and the others were compensating for that. That makes sense I guess. Also, I think it must be some kind of protection your body creates from having your mouth and throat burned constantly. It will get better but it takes a while, and in the meantime, it is miserable. Also has your husband been checked for thrush in his mouth? I developed that during treatment and it took two rounds of medication to clear it up. That made the situation worse. My best to you and your husband. I wish him a speedy recovery. Gagirl Wed, 28 Jun 2006 00:00:00 GMT Thank you so much for responding. It sounds like you've been through quite an ordeal with all the surgeries and procedures you've had. I have worried about his esophagus closing. I'm hoping that the fact that he's vomiting means that it hasn't, but I'm not sure. Believe it or not, I actually buy those huge multi roll packs of paper towels for my husband (with 8-15 rolls in each package) and he goes through a whole package in less than 4 days! I have to be honest...I'm discouraged for him that it's taken you 3-4 months for the secretions to clear up. Isn't it odd that nobody (docs) seems to know what to do about this situation? My husband tried the Robitussin, but that didn't work...just made the secretions thinner (they're kinda thin already) and thereby more profuse. Didn't dry him out at all. Tried Levsin, a patch, nothing. The only thing that decreases them a smidge is oxycodone. We've noticed that if he doesn't have it, they again increase, but even on the medication, it's bad. He did have thrush way at the beginning, and the antibiotics did make things worse...and that's when all this began. He hasn't had thrush since. Well, thank you again for replying. I wish you all the best on your road to recovery. Caregiverlynn Wed, 28 Jun 2006 00:00:00 GMT Lynn, I sympathize with your husband and will pray that he'll develop some dryness soon. I had squamous cell carcinoma of the tongue and had surgery followed by 33 radiation treatments. Developed very thick mucous during and shortly after the radiation but within a few months the saliva and mucous had all but vanished. I am now about 90% dry according to my dentist. I also had several bouts of thrush which adds to the misery. The mucous is horrible and keeps you gagging. I brushed my teeth numerous times a day to help eliminate some of the mucous as well as the bad taste. I think the ulcers and sores must contribute to the bad taste and smell. I did not experience the apparent large amounts that your husband has but I did go through quite a few tissues. The doctors told me this was the natural process of the saliva changing (mainly the thickening) due to the radiation and were not surprised at my symptoms. So I must not have been too unusual. Sorry I couldn't be of more help. Hope your husband has a quick recovery. After four years I'm still dry but doing well and you simply adjust your diet accordingly and keep enjoying life. May God bless you both and I will keep you in my prayers. Vickie Vickie C. Thu, 29 Jun 2006 00:00:00 GMT I would say that if your husband is still vomiting, his esophagus has not closed. When I got to the point where I would just gag and nothing would happen I knew I was in trouble. Please, if your husband is not on something like Prevacid or Nexium, ask your doctor to prescribe. Prevacid makes a soluble tab you can use with the tube. When I went to the specialist to have my first procedure, he told me that being on antacids during treatment and after could have alleviated the problem of the esophagus stricture because your throat gets so damaged from the burning and repeated vomiting. Also, it was recommended to me to try Mucinex (after my mucus problem had improved) I couldn't tell from your message if he had tried that or not. Another thing that was recommended to me was going on an antidepressant or motion sickness pills because those dry your mouth out (didn't try those at the time either). I have noticed a marked improvement recently as I stated in my previous post, and I am on several medications now. I don't know if it's the medicines, time or my improved swallowing, but I'll take it anyway! I am sorry to be discouraging but I found it so frustrating that no one would give me an answer when I was going through the worst. It helps just to know that there are others in the same boat. It is a horrible treatment and apparently some people react badly, like myself and your husband. My radiation doctor acted like there was nothing they could do for me, so I basically wrote him off. I went to a large teaching hospital and received much better treatment there post-radiation. I would be glad to provide any other info you might need. Take care of both of you. Gagirl Thu, 29 Jun 2006 00:00:00 GMT I have he same. My squamous cell was stage 3. I had the same cemo. I went thru the dry mouth and now I have the excess mucous. Not a severe as your husband's. You might ask your oncologist for a mouth wash called Mirical Mouth Wash. It seems to help and is also good for sores in the mouth. I have the bad smell alos and so far haven't found any way to get rid of it.I have found the plain yougert, or the small bottles on DanActive liguid yogert and Activa seem to give relief. I hold the liquid in my mouth a few minutes. I hope you husband is bettr by now. I will pray for both of you. If you have any questions please e-mail them to me and I will be more than glad to help in any way. I have survived cancer three times and enjoy my life and live with the bad as well as the good. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Mildred D. Mon, 03 Jul 2006 00:00:00 GMT Thanks everyone for your replies, sharing your stories/experiences, and offering suggestions. I empathize with each of you, as I watch my husband deal with this. You're all such an inspiration to me. Nothing has changed, but then again, we figure it's still a little early to expect that there would be (though one could hope!). In reference to other treatments for it, nothing he's tried has helped. He's tried Ativan, Levsin, Fentanyl patch, mouthwashes (they just make it thicker and since his mucous coats everything inside, the mouthwashes are extraneous/redundant), etc. The one mouthwash/rinse he uses frequently, however, is the saline rinse (water, salt, and baking soda) to which I also add a capful of Peroxide as an antibacterial to help heal what comes along. He uses this a lot to kind of get a "clean" feeling. We'll be seeing our radiation oncologist on the 17th of this month and I can't say enough about him. He actually does QA (quality assurance) on the clinical studies done by the docs at Dana Farber and other research-based treatment centers around the world, so he's got a wealth of expertise in the field and we trust his judgment. Thank you again everyone. You're all in my prayers and I'm grateful for your taking the time to try and help me. If we come across something that helps to relieve it, I'll certainly let you know! - Lynn Caregiverlynn Mon, 03 Jul 2006 00:00:00 GMT Hi Lynn. I am responding to your message of 6/27/2006. It has been a month since your post and I was wondering if your husband's secretions have decreased. Like your husband, I had squamous cell carcinoma, but on my right tonsular area and just recently completed 35 radiation treatments and 7 chemo treatments - 1 each Monday consisting of Carboplatin and Taxol. My treatment ended July 19th and both my radiation oncologist and chemo oncologist advised me of the mucous secretions before treatment and that they should start subsiding about now (1-1/2 - 2 weeks after treatment). I have used a suction machine to help out when swallowing just isn't an option and the feeding tube has been invaluable. Please let me know if/when your husband's secretions have decreased. Will be praying for good news from your husband's PET scan. Good luck - Tom. Tom p Sun, 30 Jul 2006 00:00:00 GMT Hi Tom, Thanks for your message. It sounds like you and my husband went throught almost identical treatment for an identical cancer...on the tonsil. I'm surprised the doctors told you that you could expect the secretions to subside so quickly...particularly because this reaction (side effect) doesn't seem to be the standard one most people experience. I wish I could tell you that my husband's secretions have decreased, but they haven't. The improvements or progress we have noted consist of new hair growth (I can see daily changes of new growth on his head) and decreased mouth sores and inflammation in the mouth. It's now been about five weeks since treatment ended. He'll have the PET/CT done in mid August, and then it's off to see the surgeon at Dana Farber to get his feedback of those scans to see if surgery will be warranted. I'm glad to hear that you have the feeding tube, and are particularly happy for you that you're able to still swallow! Michael's been trying, but coughs each time. The doctor thinks the saliva at the back of his throat is secreted before he has a chance to swallow the water and he starts to gag. I wish you a speedy recovery and the best of health for the future. Please keep us posted on your progress and I'll try to do the same. - Lynn Caregiverlynn Sun, 30 Jul 2006 00:00:00 GMT Hi Lynn -- Still battling excess saliva and mucous in the mouth and throat. The pain when swallowing gets a little more intense as the day progresses. Have Michael's secretion subsided? How did his PET scan go? Will surgery be required? After my secretions began to improve about two weeks after radiation ended, further improvement has come very s-l-o-w-l-y. Sometimes, the progress regresses for days and it gets very frustrating. I am still not able to eat more than a bite or two of pudding, applesauce, etc. without pain. Has Michael experienced similar "progress"? My PET scan is scheduled for 9/29 and my wife and I will review the results with my oncologist 10/3. My thoughts and prayers are with you and Michael for his speedy recovery. Tom Tom p Thu, 31 Aug 2006 00:00:00 GMT Hi everyone, My apologies for not updating sooner. And to all of you who took the time to respond, I hope you continue to progress on your road to recovery. My husband's side effects remain the same to this day. We determined that he had an esophageal stricture, went to Dana Farber, and he was scheduled to have a dilatation done to open the esophagus. Before I continue, I can't forget to state that during a recent scope, the site of the tumor appeared smooth and concave!!! That was the best news! THe PET/CT scan has looked "good," but isn't definitive, as with the substantial amount of radiation he had, and in conjunction with the Taxol that exacerbated the effects of the radiation, he still looks "hot" on the scan to a certain degree. He'll have another one done on 10/26. Everyone is certain it will look clean. Thank God!!! Michael went in yesterday to Brigham and Women's in Boston to have the dilatation done. THe team included the surgical oncologist from Dana Farber, Dr. Charles Norris, who led the team, in addition to Dr. Michael Jaklitsch, a thoracic surgeon from B&W who, if necessary, would have gone retrograde through the feeding tube site to meet Dr. Norris's scope wherever the stricture was. Unfortunately, they weren't able to do the procedure. It appears that Michael is still SO inflammed in there, with a "fragile" tongue, lots of ulcers (I guess I can thank God that the secretions are coating those ulcers, keeping him from experiencing any pain!), and unfortunately, posterior glottic stenosis with some webbing around his vocal cords that wasn't there last month. If they continued with the procedure, they would have caused more trauma to the area and swallow therapy or anything else he tried wouldn't have worked. So...we're very bummed to say the least. He's especially depressed to think that he'll be stuck with this feeding tube for at least another 4 months. Let me tell you why. The team will discuss the use of hyperbaric oxygen treatments to heal the stubborn mucositis. They were going to wait until after the next PET/CT to discuss it...assuming the mucositis was still prevalent after the dilatation, but they're moving up that conversation for obvious reasons. Until his throat heals, they can't do the surgery. So...he continues being unable to swallow anything whatsoever and cannot talk without increasing the secretions. Has anyone else been tried on the hyperbaric treatments? I know it's an up-and-coming form of wound management, as the increased oxygen amounts promote cellular health and function. I'm hoping to find out this coming week that this will be the next step...though I'd be even happier if he woke up one morning to find that things have healed on their own. That would be nice too. ;) I'm still keeping the faith though. Blessings to you all, Lynn Caregiverlynn Sat, 16 Sep 2006 00:00:00 GMT Lynn, It sounds like your husband is in very capable hands, unlike I was when I initally started this journey. Please encourage him that, although being very proactive as his doctors are is great, time is really the best healer. It's still frustrating, but it WILL get better. As stated in my previous posts, I have been done with radiation since last November and I am still on a feeding tube with no real end in sight. But I am making small progress although slowly, and the pain is finally becoming more tolerable, and some days my throat doesn't hurt at all, thank goodness! I am currently receiving acupuncture and have consulted a naturopath, so I think that has probably helped as well. The hyperbaric therapy sounds promising. I had looked into that once myself, although it was never suggested to me. I remember that someone had posted about the use of it on the ACS website, and it really benefitted him/her. Maybe you would want to check there, if you haven't already. It will get better. It just really stinks right now. Hoping that some good news comes your way. Gagirl Tue, 19 Sep 2006 00:00:00 GMT  On 6/27/2006 Caregiverlynn wrote:My husband has squamous cell carcinoma of his left tonsil and just recently completed 43 IMRT treatments and 8 chemo treatments (1 each week) consisting of carboplatin and Taxol. From everything we've read, we were prepared for him to experience the dry mouth. Instead, he has the exact opposite...profuse and nonstop secretions coming from the salivary glands in the back of his throat. This started after the first couple weeks of radiation treatment and have boggled the minds of everyone on his treatment team. Nothing, and absolutely nothing, has helped decrease the secretions. They are so bad that he cannot talk (he'll drool), can only sleep almost an hour before having to wake up and clear (blow) the secretions from his mouth, and certainly can't eat. Thank God we agreed to the feeding tube, because it's saved his life. If he swallows his secretions, because they are so profuse, he'll gag and vomit. Has anyone ever experienced this particular side effect? IF so, did anything help it? And, how long before it went away...and what were your experiences with it posttreatment. For example, the docs suspect that the opposite will occur, that he'll develop the dry mouth, but it's hard to believe with the amount he's producing right now. He'd actually welcome the dry mouth at this point. The benefits (yes, we've come up with some) include the fact that the secretions constantly coat his mouth and all the sores in there. He would be in so much pain if it wasn't for that. Also, the secretions are coating his teeth, so even though he started out with flouride trays 3x a day and brushing with flouride the same, he has been instructed to only brush, as the dentist said his mouth is naturally being cleansed. Unfortunately, there is an awful smell that is emitted, whether it be from the sores in his mouth or the secretions (considering what radiation does to the body), but it's nasty and I'm looking forward to when that goes away. Even if someone out there hasn't experienced the secretions, has anyone had the bad smell and how long did it take to go away? Thank you for listening and I hope to hear from someone soon. We continue to be positive and are waiting another 4-5 weeks to get the PET done to determine if he'll need a radical neck dissection in October, which the surgeon at Dana Farber wants to do if he sees anything "gray" on the scan. This is a great forum and I look forward to reading your replies. God bless. - LynnAt my last email to you (late summer), I had finished treatment and had my first PET/Ct scans scheduled.  Michael was about a month or so ahead of me with treatment, scans, etc.  How is he doing?  Did he need the neck dissection? I have had two scans since my treatment ended July 19th and the last one still lit up in a small area in the right side of my neck.  Although the area was dimmer and smaller than the previous scan, I am going ahead with surgery to remove a section of lymph nodes on Jan 3rd.Hopefully all is well with Michael.  If he had the dissection, any advice or guidance as to what I can expect re side effects, recovery, etc. would be appreciated. Tom p Wed, 27 Dec 2006 00:00:00 GMT Lynn, I am hoping every day to see a response from you regarding your husband.   I have never replied to any of these message boards, but your situation is exactly like my husband and I.   I can certainly relate to what you are going through.  It is just as hard on you as it is on him (I feel like I am going through this with him -- in addition to work, a teenage daughter, etc. etc.)   I hope things are improving, and would love to hear back from you.   Please, I hope you will find the time to update your husbands' condition, so that I can perhaps find some hope in your experience. Wifejb Tue, 23 Jan 2007 00:00:00 GMT Hello All,After reading responces from several others afflicted with mucous and dry mouth I guess I'm not as bad off as I thought. I was operated on about 2 1/2 years ago for squamous cell carcinoma ( 2 operations, one on each side of my neck) I received radiation treatments ( they gave me shots of some kind prior to each treatment to protect my salivary glands) beginning about 4 months after. I think maybe too many treatments which may have led to my mucous and dry mouth. I was unable to swallow food until I had my eusofagus enlarged a few months ago. I find it almost impossible to eat normally because of the horrible taste of everything and the mucous. I use "Biotene" mouth wash which helps the dry mouth but aggrevates the mucous condition. I saw something about"Organidin NR" which may help the mucous condition. Has anyone heard of the effectiveness of that?I know the dry mouth will continue forever but I've had this mucous for almost 2 years. I wonder if it will ever cease. Malcolm Malcolme Sun, 11 Feb 2007 00:00:00 GMT GEGirl - What kind of therapy are you getting for swallowing? Bruceb bruceb Sat, 24 May 2008 00:00:00 GMT