CancerCompass message board discussion started by Froggy54 on 2/16/2008 http://www.cancercompass.com/message-board/message/all,21011,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm a physician now 14 years out from metastatic squamous cell carcinoma of one tonsil followed by radical neck surgery and 6 weeks of twice daily fractionated radiation therapy. Over the years I have personally encountered many adverse transient & permanent complications associated with treatment. While I have often thought about going on-line as a resource for patient experiences, this is the first time I have actually done so. I am willing to share my own personal experiences as a patient and compensations I have learned over the years for those facing treatment. One problem I personally faced over the years was a lack of other folks who had been through treatment or were long term survivors to discuss issues with. I did not undergo any form of chemotherapy so will not be able to comment in this area. If you are a long term survivor, I would also like to hear from you on issues you have dealt with over time.Sincerely,Loui Elfrink Froggy54 Sat, 16 Feb 2008 00:00:00 GMT Bless you my dear doctor for coming on to this site and discussing your treatment issues. I think most of us have come to this site to learn...the good and the not so good. I have many post chemo issues so we are not on the same page but we can certainly understand the pain and suffering that follows treatments.Here's what I've recently discovered - that every symptom I have is blamed on the chemo. That notion could have severely crippled or even lead to my death had it not been for a newspaper article I read on a medication I was taking and its serious side effects. I had every symptom...stopped taking the medication and the quality of my life has done a complete turn around. We, as patients, need to be very proactive in our own care. We need to be reading, going on sites like this to learn from each other. Thank you for being willing to be a patient on this site. I know we will all have lots to learn from you.Blessings to you and your family.Molly Molly s. Sat, 16 Feb 2008 00:00:00 GMT  On 2/16/2008 Froggy54 wrote:I'm a physician now 14 years out from metastatic squamous cell carcinoma of one tonsil followed by radical neck surgery and 6 weeks of twice daily fractionated radiation therapy. Over the years I have personally encountered many adverse transient & permanent complications associated with treatment. While I have often thought about going on-line as a resource for patient experiences, this is the first time I have actually done so. I am willing to share my own personal experiences as a patient and compensations I have learned over the years for those facing treatment. One problem I personally faced over the years was a lack of other folks who had been through treatment or were long term survivors to discuss issues with. I did not undergo any form of chemotherapy so will not be able to comment in this area. If you are a long term survivor, I would also like to hear from you on issues you have dealt with over time.Sincerely,Loui ElfrinkI have been checkin this site on and off hoping some longtime cancer survivor like me who have certain issues such as side effect from cancer treatment. It will be 13 years this coming August since diagnosis of lung cancer. 11 years on remission after 2 years of treatment. My issue is and perhaps forever will is my chronic neuropathy and fibromyalgia that I have been suffering for nearly 11 years. I am thankful for all the treatments I recieved.  they really did extended my life. with that extention, I was able to finished most of my obligations that was not yet completed. I have been taking pain reliever for all that time and to this day. Since you are, a physician?, do you think my pain issue were all related to both radiaton and chemo as I was complaining to most doctors I've seen in the past? Or should I really need to convince myself, it's all in my head as for everyone around me are saying? I've isolated myself completely from everyone. I have just gotten tired of listening to their comments including comments from some doctors. What do you think? By the way pain pills do not make me high in any way, it only minimizes my pain to help me live my life with quality. buang Sat, 16 Feb 2008 00:00:00 GMT Congratulations on beating the odds and surviving. I am responding as a fellow cancer survivor and not from the prospective of being a primary care physician. Any comments I write are not meant to establish a patient-physician relationship or provide medical intervention. All issues should be discussed with your personal physician. I do feel that both Myofascial Pain Syndromes, fibromyalgia being one type, and chronic neuropathic pain syndromes may follow prior chemo or radiation treatments. Whether you have Fibromyalgia or another Myofacial Pain Syndrome is unknown. My own personal experience is with chronic neuropathic as well as myofascial pain stemming from both surgery and radiation nerve damageas a reult of my treatments. I have not personally taken chemo. When you look at Myofacial Pain Syndromes including Fibromyalgia your primary care physician has probably already considered other possible contributory causes like Hypothyroid, Polymyalgia Rheumatica, medication related like statins to lower cholesterol or anti-viral agents, cervical (neck) stenosis around the spinal cord or foramina where nerves exit the spine, other ongoing malignancies, tick borne disease like Lyme, chronic hepatitis C and other so called auto-immune disorders. Common interventions include consistent exercise (as tolerated), pain mitigating agents like Ultram, Neurontin, Elavil, Desyrel, Zolft, Zanaflex, Flexeril, Cymbalta, & magnesium + malic acid. Opiates like Lortab, Percocet etc and anti-inflammatory pain meds like Naprosyn, Motrin etc. are usually not recommended for Fibromyalgia but may be indicated for other Myofascial Pain Syndromes. There is no one agent fits best rule. You can even see physicians specializing in chronic pain these days but you should do your homework first and see if the one you are about to see has any real world experience with cancer patients.Neuropathic pain is a very complex subject with host of causes and best dealt with a Neurologist with an interest in the area. Again, there are lots of treatment considerations from topical agents to oral meds. In your head? Probably not. As a patient I flew down to MD Anderson in Houston, Texas for a second opinion concerning symptoms from extensive damage I incurred as a result of past twice day radiation therapy. While there is no current treatment for my nerve damage, I was most impressed by the professionalism, compassion and expertice I encountered. Second opinions for peace of mind sometimes are worth the effort.Isolating oneself from others? Lots of possibilities here from completely benign (no big deal) to serious depression and a spectrum of other considerations in between. If you're not comfortable with the situation and worried about depression, hopelessness etc, you probably should make a trip to your PCP. If your comfortable/generally okay with isolation, then so be it.I wish you many, many more healthful days. Froggy54 Sat, 16 Feb 2008 00:00:00 GMT As a patient, one always must be suspect of all medications that enter the body when experiencing new or unusual symptoms. I learned this hard way a few back as the patient. I have hypothyroidism that followed radiation treatment and have to take daily thyroid medication. There are trade name and generic substitute meds for many medications today. I was on a trade name drug but unknown to me at the time my pharmacist had substituted a generic when I dropped the med off for a refill. Within 2 days I began to feel profoundly fatigued. I was as tired in the mornnig after being in bed all night as I was before I went to bed with no clue it was my medication. I made an appointment with my ENT physician and my personal Internal Medicine physician over the ensuing month as I was barely functional. I was really beginning to believe my cancer had returned. Blood work and physical exams were normal. Both physicians including myself remained clueless. At 6 weeks and still completely exhausted, I began to think back to what may have changed in my life at the time the symptoms first showed up. Finally the lightbulb came on as I recalled refilling my thyroid medication. I went in my pharmacist where he discovered the med given was a generic substitute and not the trade name I had been on. I switched to trade name and within 48 hours the severe fatigue lifted.This in no way should discouraged anyone from taking generic medications as there are considerable savings in doing this. However, if one begins to experience unusual symptoms from a  type of medication they were taking previously without incident, one must be suspicious and talk with the doctor and pharmacist. Froggy54 Sat, 16 Feb 2008 00:00:00 GMT Hello Loui,  Thanks for your posting.  I finished my treatment, chemo and radiation, for tonsilar cancer last Summer.  Off and on, I get slight "awareness"  in my lower jaw around sites where I have had dental work.  I wouldn't say it is pain, and it seems to migrate around the are.  i don't have cold or heat sensitivity either.  I go to the dentist regularly.  I'm so paranoid of osteonecrosis and am not sure of what dental work i can or cannot have.  Would this sensitivity be just a side effect of radiation?  Thanks for your posting.  Tara taram1967 Sun, 17 Feb 2008 00:00:00 GMT i was diagnosed with colon cancer stage 4 in 2004. after the surgery(colon resection) i had chemo for 6 months and went into remission briefly and then had to do chemo again the scan was clean so i had a brief no treatment time 6 months until it returned tiny tumors behind my abdomen and spine inoperable. i asked if the cyber knife would help and my dr said yes. it was the most painful treatment i had to date. even the morphine didnt help. that was quite a surprise to me i didnt think the super radiation would be painful but it was. like hot rocks in your body. and it proved to be a failure in fact it spread! so i was back on chemo and have been on xeloda chemo pills. pain is minimal but present in my sides but the tests show no cause of that mysterious right side lower pain. one er dr told me maybe nerves were damaged in my colon resection surgery years before and no test will show that, i went to stanford university for a second opinion and after traveling from tx to ca and waiting 6 hours for the dr he spends about 15 min with me telling me if i had a caretaker for my 10 yr old son because he guessed i would die in 2 years. can you imagine the shock i felt. i almost hit a car leaving the place my mind was in shock. then i got mad, i didnt want to hear bad news i wanted to hear words of  wisdom and hope! i refuse to buy in his oponion and now its 1 1/2 year later since that dr visit. i plan to call him and say hello at the 2 year mark to prove him wrong, anyway i think i'm proving the stats can be wrong since i am alive. i also think alot has to do with the mental attitude, i think of this diease with no respect and go about living my life to the fullest i dont cry or whine about it, everybody is going to die why do they all freak out so much what surprises me is even the older folks are so scared of dying. gee when its my time i will finally get some rest. Yaztexas Sun, 17 Feb 2008 00:00:00 GMT Doctor,First off thanks for your willingness to offer some help. I would like to suggest that perhaps you set up a website instead of just doing it in this forum that people can go onto and read whatever topic of the day you choose, and have a Q&A section, plus a section for patients to blog to eachother. It doesn't have to be a big fancy website. Once set up, you could post the address and be up and running. You could get perspectives at all stages from patients and follow them along their way. Could select someone who was just diagnosed and follow their progress, get someone like me that is in treatment, someone just finished, and so on. It could really be a great thing for all of us non-medical types. My 18 year old daughter will be starting TCU in the fall wanting to become a Dr. I pray she has the compassion to give back to help those of us that have concerns and questions all the time as you seem willing to do. I am a retired business owner and would be willing to assist you in anyway you need. I have plenty of free time.Again, thanks for your willingness to help those outside of the treatment room.Rick rick51 Sun, 17 Feb 2008 00:00:00 GMT  On 2/16/2008 Froggy54 wrote:Congratulations on beating the odds and surviving. I am responding as a fellow cancer survivor and not from the prospective of being a primary care physician. Any comments I write are not meant to establish a patient-physician relationship or provide medical intervention. All issues should be discussed with your personal physician. I do feel that both Myofascial Pain Syndromes, fibromyalgia being one type, and chronic neuropathic pain syndromes may follow prior chemo or radiation treatments. Whether you have Fibromyalgia or another Myofacial Pain Syndrome is unknown. My own personal experience is with chronic neuropathic as well as myofascial pain stemming from both surgery and radiation nerve damageas a reult of my treatments. I have not personally taken chemo. When you look at Myofacial Pain Syndromes including Fibromyalgia your primary care physician has probably already considered other possible contributory causes like Hypothyroid, Polymyalgia Rheumatica, medication related like statins to lower cholesterol or anti-viral agents, cervical (neck) stenosis around the spinal cord or foramina where nerves exit the spine, other ongoing malignancies, tick borne disease like Lyme, chronic hepatitis C and other so called auto-immune disorders. Common interventions include consistent exercise (as tolerated), pain mitigating agents like Ultram, Neurontin, Elavil, Desyrel, Zolft, Zanaflex, Flexeril, Cymbalta, & magnesium + malic acid. Opiates like Lortab, Percocet etc and anti-inflammatory pain meds like Naprosyn, Motrin etc. are usually not recommended for Fibromyalgia but may be indicated for other Myofascial Pain Syndromes. There is no one agent fits best rule. You can even see physicians specializing in chronic pain these days but you should do your homework first and see if the one you are about to see has any real world experience with cancer patients.Neuropathic pain is a very complex subject with host of causes and best dealt with a Neurologist with an interest in the area. Again, there are lots of treatment considerations from topical agents to oral meds. In your head? Probably not. As a patient I flew down to MD Anderson in Houston, Texas for a second opinion concerning symptoms from extensive damage I incurred as a result of past twice day radiation therapy. While there is no current treatment for my nerve damage, I was most impressed by the professionalism, compassion and expertice I encountered. Second opinions for peace of mind sometimes are worth the effort.Isolating oneself from others? Lots of possibilities here from completely benign (no big deal) to serious depression and a spectrum of other considerations in between. If you're not comfortable with the situation and worried about depression, hopelessness etc, you probably should make a trip to your PCP. If your comfortable/generally okay with isolation, then so be it.I wish you many, many more healthful days.doctor,responding to your message you posted did not mean I was looking nor expecting doctor/patient relationship. as I said, I was a bit thrilled ( please no offend intended here) that finally a physician whom I thought have immunity toward this horrible disease become one of us. was a patient and now a survivor. my question to you is, how do you approach your patients now when they come to you with various complaint? especially those who are complaining about aches and pain. Is it the same as it  was before the disease came into your life? or is it now with a little understanding and compassion? I was very upset with one of my oncologist/radiologist at one point while having the daily routine of radiation overhearing them discussing one of the patient complaining of too much pain and them calling her a sissy. I went home in tears from the pain from the radiation and anger. I told my daughter, I wish that table turn around and him lying down in the same table so he can feel how we patients feel. Lord didn't it happened. 3 years after my ordeal. he then went to local channel 4 tv and told the media how he approach and deal with his patients afterward. of course with better understanding and much respect than before. his name is DR LEE from oakwood hospital. I never intended or wish this ordeal to anyone. people should be careful of what they say to others being a whinney and sissy. buang Sun, 17 Feb 2008 00:00:00 GMT Thank you doctor for sharing and being a long term survivor.  I am going on 2 years since my dx & left tonsil SCC and left side disection.  I received 35 treatement of radiation and 7 treatments of chemo.  Went through horrible hell and back.I am very interested in the long term side effects.  I have terrible dry throat and lower jaw pain.  Some taste has come back and feel the taste is mainly from memory.  I've heard that through out the rest of my life, I will always have somewhat of an eating problem.  It is very hard to gain weight since this incident. I pray about this dry mouth situation which is the worse I can complain about, gets some what better.  I have bouts of terrible mucous just daily, don't know what it comes from or why I have it, but know it is a result of radiation I'm sure.I am truly grateful I am here today, and more grateful to find someone long term.  It give me such wonderful hope at this moment.  Thank you for posting and speaking of your symptoms through these years. God Bless you!!!!! pcn17 Tue, 19 Feb 2008 00:00:00 GMT I am very interested in knowing what kind of symptoms you have experienced over the last 14 years as a result of this tonsil cancer.  I am always wondering if what I am experiencing at times are part of the disease/treatments received.  It really helps me deal better when I know this is somewhat expected. Thanks for looking at it from a different perspective!!! God Bless! pcn17 Tue, 19 Feb 2008 00:00:00 GMT THANK YOU, Doc for posting here! I am 8 months out of treatment, and I am interested in the long term side  effects of radiation therapy. I had tonsil cancer as well, and am having a lot of ear pain. Wondering if this is normal? Girlcat36 Tue, 19 Feb 2008 00:00:00 GMT You're very early in the recovery process and technically will not be out of the woods until you meet two critical points; those being the 2 and 5 year survival points.The type of twice daily fractionated radiation I received for 6 weeks is no longer being done from what I heard so hopefully you will not incur the outcome I have.To answer your question: On average I would experience one sided ear pain that would, in days, begin to also develop into lateral and posterior one sided pain in the tongue. When these episodes occurred it was difficult to tallk because it hurt to move the tongue. These events would last on average about two weeks then resolve. It took a few years to begin to understand what was really going on in my case. These episodes were a type of neuropathy associated with eventual irreversible nerve death and subsequent loss of motor function to muscles innervated by the nerves involved. I think the big hint came to me when I began to notice fasiculations in the tongue. These are rapid involuntary movements in the motor muscles of the tongue and imply nerve death and eventual atrophy or loss of muscle mass. Speech becomes difficult as does swallowing. Those areas most damage were the tongue and swallowing mechanism plus vocal cords. I was initally self treating with an antibiotic under the mistaken impression I had either an infection in the throat or ear. Pain in the posterior pharynx or mouth is commonly referred to the ear making one believe the problem is ear related. Although their are seveeral meds on the market that I never tried, in retrospect I would use now if I was still having the problem. Neurontin, Depakote, Lyrica and either Rlavil or Desyrel have been used for neuropathic pain. One may also use a varieity of pain meds.As the years went by and the nerve damage was well set these episodes stopped and I haven't incurred any in 2 years. If you havean experienced ENT surgeon who has real world experience with post radiation patients, consider yourself lucky. My experience has been that few ENT docs have much exposure in this area unless your in an area with a major ENT teaching residency program or you go to a major medical center like MD Anderson in Houston, TX.Can you tell me more about your case? How old are you, did you ever smoke, alcohol consumption, travel in the far east, presenting symptoms before diagnosis, type of surgery you had and type of radiation treatment you completed?Thank you Froggy54 Wed, 20 Feb 2008 00:00:00 GMT This is an interesting phenomenon that I personally did not incur. As I read your message, it reminded me of patients I have seen who had lost a limb and were experiencing the so called phantom limb phenomenon. With time this phenomenon does improve in those in my experience.Funny you mention the dentist as I just returned from having a filling done. I still have more work to be done in the dental chair which given the damage I have from the type of radiation is a challenge. I virtually have no remaining tongue motion, swallowing is difficult and my vocal cords were damage. I think your loss of perception of heat/cold will slowly improve over many months as tissue damage continues to heal. I vaguely recall experiencing this but not beyond the first 2 years. As to the dentist: The bottom line is to make your teeth a priority and, if you have a good dentist, follow through on repairing all early damage. For years I use to use topical flouride gel but stopped as I was never really convinced it did much for me. As you know, a dry mouth predisposes to increased dental decay. I have abstained from using  the artifical saliva agents and even a tablet called Sialogen once prescribed to me and just sip fluid when needed. If your dentist wants to do a root canal or crown ever time you see him/her and you are questioning the need, it is time to find a new dentist or get a second opinion. Both my wife and I have been down this road with a past dentist.I would be interested in learning more about your problem. How old are you, have you or do you smoke or consumme alcohol, lived or traveled in the far east, & type of surgery and radiation you underwent?  Froggy54 Wed, 20 Feb 2008 00:00:00 GMT I really, really hope you beat your disease. I feel your anger, pain and disappointment having encountered a callous specialist after traveling from TX to CAfor a mere 15 monute encounter. There is no excuse or place in medicine for this callous, uncaring attitude. As a practicing physician, I have to admit that one learns one is as mortal as the next after you personally experience a life altering event to your health. I know my disease has significantly altered my interaction with patients and people in general. Sure, physicians are busy and have the ususal life stressors everyone else has but having a flawed personality issues is never an excuse for lack of good bedside manners. If I were you, I would write this physican a letter and describe how it felt to be treated as being immaterial and the trouble/effort you went through just ot have 15 minutes of his/her time. If nothing else, you'll feel a little better and maybe this health care provider will stop and think about the patient more then their own problems during the time they are priviledged to have a patient. I would be surprised if he/she doesn't write back. They probably have no idea how you feel or what happened.Best of luck,Dr. Elfrink  Froggy54 Wed, 20 Feb 2008 00:00:00 GMT With all the medical legal suits today, I was just lettting folks know I am responding as a patient with a disease and not as a medical provider. Sad and unfortunate as it may be, there are people who would choice to misinterpret shared experiences with receiving medical advice/care from a health care person on line.Now to a more exciting line of discussion.Yes, yes and yes to your question concerning the impact of incurring a life altering disease and surviving. While in the military, as a physician, I was of the mind that I was immortal so to speak and could accomplish anything I set my mind to. I know for a fact there were times this attitude got in the way of common sense and common courtesy. While providing pretty good care, I really never allowed myself to feel the patients pain or look at a situation from their perspective. I was emotionally distant. This has all changed. I no longer am aloof from the patients perceptions and emotions. I listen a lot more carefully then I ever did previously. I let the patient stop talking first before I open my mouth to speak which is no easy task.  I try and understand their concerns from their perspective and I've learned to better accept myself for not having all the answers as I use to think I was expected to. I have heard over and over the comment, " you're the first doctor who has taken the time to actually listen and talk with me about my issues", which is always a challenge given the highly stressful work environment for the average primary care physician where 15 minutes is the standard appointment. When you look at getting the patient into a room, getting vitals checked, listening and examining the patient, deriving a plan, printing prescritions/instructions/ initiating referrals, typing a clinical note into an electronic medical record etc it doesn't take long before you are getting further and further behind and more and more frustrated. The list of potential frustrations is lengthy and usually out of one's control. Never the less, I still truly believe in the importance of taking time to really listen to my patients.Personally speaking I think every medical student and every medical resident in training should be requuired to spend at least three days in a hospital setting as a patient.   Froggy54 Wed, 20 Feb 2008 00:00:00 GMT First congratualtions on hitting the first major milestone at 2 years. When you get to the 5 year mark, you will another cause to celebrate because the probability of recurrent disease markedly drops off.Dry mouth/throat: Common; a nuisance; no cure but tolerable (as if we have any other choice). I would be hopeful that tast comes back but slowly-years. For the first 6- years I was highly intolerant of any spicy foods but now love them. The oral sensitivity/discomfort abates but really, really slowly. Stick to a diet that is healthy but not irritating to the mouth. Even if not hungry, you have to force in nutrition every day; this will improve and smell/tast will comeback.I recall my ENT provider prescribed Sialagen tabs to stimulate saliva; I tried it but was never impressed for me; their are a number of artifical saliva agents out there to try but I found just sipping fluids was all I needed. At night it's tough as you will have a dry mouth no matter what. Keeping a bottle or cup of water on your nightstand may help along with kleenex for the mucous production from intense mucositis.Mucous production; primary from the posterior nasal area above your soft palate; constant; does decrease over the years but never completely abates. Definently exacerbated by certain foods. I supplement my diet with powdered protein from a local health food store and buy soy milk at Sams. Unfortunately, a common off shoot is increased thick mucous production and interference with the airway at the level of the vocal cords as I have vocal cord paralysis and difficulty swallowing. I have often wished I had invested in a bedside suction maching to help with the initial horrendous production of mucous. Pain; common; may be transient, episodic or continuous. First have your ENT or Oral sugeon exam you and get xrays as needed. It's okay to use analgesic or pain meds when needed. I responded earlier today to a patient experiencing probable radiation induced neuropathic pain often presenting in the ear as a referred pain from the oral pharynx and lateral tongue as a sign of impending permanent nerve death albeit slow. If you have an ENT physician who actually has real world experience with post radiation treated patients then you are fortunate as many have none or limited experience. If you live near a major teaching hospital with an ENT residency, they usually have faculty who are experienced in this area. If you can afford it, a trip to MD Anderson to their ENT physicians involved in head andneck squamous carcinomas may be  worth considering if you feel your issues are not being addressed locally. Future eating issues: Assuming they did not do surgery on your tongue, any future swallowing issues will be a result of radiation induced permanent nerve damage. Mine did not functionally begin to show up until I was 5-6 years out although I later realized I was experiencing episodic bouts of neuropathic pain in the ear/tongue that would last about 2 weeks and made speaking difficult from pain in those first 5 years Since then the nerve damage to my tongue, swallowing muscles and vocal cord paralysis has progresively worsened month after month. It is relentlesss and there is no known effective treatment or preventitive intervention that I have found. The type and extent of radiation has a lot to do with this. It is my understanding the type Ireceived isno longer being done. You develop a munmber of tricks as time evolves to continue to speak (somewhat understandably), swallow and breath. If your an athelete, there are a number of other issues you learn to deal with.Can you share moreabout your problem? How old are you, did you ever smoke, did or do you consumme alcohol, travel or live in the far east, have numerous strep throat infections as a child or were exposed to potential environmental threats? Feel free to write with questions and I will try and provide advice based upon my personal experience. Froggy54 Wed, 20 Feb 2008 00:00:00 GMT Thank you so much for your reply. I am 42 years old female, non-smoker, social drinker, health nut. I have never travelled to the Far East.  In 2005, I presented with an enlarged painless left tonsil, and fatigue. In 2006 had a CAT scan which reported a cryptic tonsil and No Evidence of Malignancy. After which the tonsil doubled in size, and it was decided to remove it. In March 2007 I had the tonsillectomy, the right tonsil was infected but the left tonsil contained a 2cm tumor. A PET scan showed no metastases. T2N0M0. My local oncology center recommended one-sided radiation.I went for a second opinion at Dana Farber in Boston. Their pathology indicated that they did not have clean margins on the tumor, and that it was caused by the HPV virus. I would need 7 weeks bilateral radiation, 3 rounds of cisplatin, and a feeding tube.I completed treatment June 6 2007. I was able to continue eating throughout radiation, and did not require narcotic pain relief. No mouth sores or swallowing problems. I went rock climbing the day before my last rad and chemo!I felt pretty good after treatment, but now I feel not as good. The ear pain is really bugging me, and joining the working world again has left me a bit fatigued; but you are saying it could be some type of nueropathy from the radiation? I continue to recieve follow-up care at Dana-Farber, and my local ENT is seeing me between the Dana appointments if I feel the need.Thank you so much for taking the time as a long-term survivor, and physician, to share your experiences with us! Girlcat36 Wed, 20 Feb 2008 00:00:00 GMT Rick has a very solid suggestion here.  I would be excited to discover such a website.  I very productive idea.  It also removes the liability issues associated for all.  Thank you for your generous nature and desire to help others.  Mediator Wed, 20 Feb 2008 00:00:00 GMT