hi Maurie yes i do imagine its all about my medicare insurance...but the dr's dont say that...my wife thinks i really need to get a PET at 1 yr ???   i will discuss next visit....   thanks and good luck with yours.....   regards Bill ... View more

thanks for all that info....yes magic mouthwash helps but here is sort of weak and doesnt last long....i am keeping an eye on the mucositis to see if it spreads....   wishing you a clear PET...keep us all posted....   point of interest...i had a PET 3 months out and i asked my radiologist when is the next PET and he said NEVER....i said NEVER and he said i have been doing this over 29 years and i NEVER do another PET unless while scoping or patient eval shows a possible problem then i scan but it happens far and few between and he said with tonsil and throat he has never seen a re occurrence of cance  ????   the schedule is to be scooped every month....one by him and next month by ENT....i asked my ENT about the PET and he said the same thing...NEVER   my chemo radiologist said he would do one 6 mo out...when i told the other 2 doctors they said they would never ever do that without symptoms but i can do what i want....   and people wonder why they call it a practice.....i see new advertising all the time Dr.xxx opened his new medical PRACTICE and is accepting new patients....scary stuff   regards and stay well Bill ... View more

wow, all your fillings are starting to fall out !!  my dr. said no problem getting cleaning 6 weeks out and even fillings....luckily i didnt need fillings but my dr. said cleaning and fillings and fine but NO EXTRACTIONS....i understand extractions are the kiss of death for LIFE with what we have ?   who do we believe...   keep the faith, i am trying to....time may heal  some of this pain and agony like many have written is the case for them and i look forward to the day   regards Bill ... View more

Hi Joe yes, thats aggressive but may be beneficial....i mentioned it to the dr and he looked at me like i just landed from outer space which leads me to believe it will work!....they know nothing....he said forget about it and let take its course....right   thanks for all your advice and i am watching to see how far this mucocitis wants to go   regards bill ... View more

thanks jen well its just impossible with the doctors since they dont follow the patient problems like they should...and try to get in for follow up is near impossible except monthly for scoping...   i appreciate your thoughts and experience and hope it all come together for you again...at this point my ability to smell food is perfect...my taste is zero...texture is horrible and hunger non existant....so i use the peg for drinks...they wanted to give me prescrip for   saliva stimulation and when i read the side affects of ALL it is nothing i would ever put in my body with all i am up against...   thanks and best wishes Bill ... View more

Hi Capt yes, i have about quarter bottle of magic mouthwash from last episode of thrush but it only lasts about 5 minutes and the pain is back...the way each dr mixes the magic m is different so mine may not be that good?   i have started taking the prescipt for the thrush and will watch the mucositis to see if it keeps spreading  since there doesnt appear to anything to cure it   always something....   thanks Bill ... View more

Hi Capt. well here i go again...5 months out....thrush is upon me once again...the tongue is a mess...and now mucositis has  started on the roof  of my mouth and its large enough and sore enough that i cant even drink water...looks like its spreading to my gum line on left side of mouth...never had mucositis   went to the dr and he said to take fluconazole 200mg once daily for 10 days for the thrush(tongue)   he also said there is nothing for mucositis.....???  he said sometimes they prescribe Prednisone for extreme cases but in my case of treatment for tonsil cancer he said it would very possibly cause thrush to set in again or accentuate the present case....   sooooo, still on feeding tube 5 months out and was just starting to try to eat soft food when it all came down...   i thought i did remember something about you mentioning you also had mucositis if i am not mistaken and wondered if you found anything that would relieve it...??   thank you and take care...   Bill ... View more

Thanks for the post Joe....i think i will try the burn.... but, are you saying to gargle it STRAIGHT without watering it down???  if so i bet it will burn....let me know if you get a moment before i  try it...thanks......also...how long did it take to get your saliva going ???  was it over 4 months like me ? thanks Bill  ... View more

Thanks Capt...i printed your post and taped it to my bathroom window in BIG print to remind myself to hang in there.....i know i am whining and it may be normal healing time but my Dr. will not see the patients he has done radiation on because he has so many new patients ???  never had this type experience and would like to change dr's but he is so good at his radiation i am stuck with him in the even something crops up.....   one question... did you have a foaming mouth????  i go from foaming .. i mean foaming that's filled with bubbles and wont stop to slime and sludge to totally dry...its a vicious circle all day....at night dry mouth only.... i cant sleep more than 30 minutes without waking with throat and mouth screaming for fluids and tongue stuck on roof of mouth....i am about as sleep deprived as i can take....i do not sleep with my mouth open so its not a factor....   i just wondered if you or anyone has experienced this and i am 4 months +  out of treatment ?  after treatment the Dr. said i would good as new in 2-4 weeks or something like that...right...not the case   thanks Capt.... Bill ... View more

Hi Mozz well i am 4 months post chemo/rad and still not eating anything...the smell of food makes me sick...my wife has lost 10lbs since i do the cooking and she is eating what i can make etc...   my mouth continues to go from dry as the desert to foamy like a rabid dog to sticky and disgusting and a few others....at night i have trouble sleeping since my mouth and throat are so dry my tongue sticks to the roof of my mouth and i need to take a swig of water but my mouth feels numbs afterwards...the doctor has never heard of it ??????????????????????????????   my taste buds are zero...nothing....sweet applesauce tastes like sawdust and water...it is not that i CAN"T eat its i have no interest in eating saw dust and water ???? the peg is handy...holding my weight   i try once or twice a week to eat something and can...but i regret it...such a bad experience of what it should taste like ant what it does taste like   my dr GUARANTEED ME several times since he only shot one side of my mouth being the left tonsil that the right side would be 100% right out of the gate....right   i have lymph-edema also in the neck....   i am getting nervous now 4 monts post treatment to be like this when on my last treatment he said 2-6 weeks i would be fine....   to my Dr. i guess i am the mystery man....    hope this is not forever....   i can take 3-4 vitamins at a time down the hatch etc...drink etc eat etc without trouble...of course if i try a piece of meat my mouth goes like a sponge to water and i gag if i dont drink etc...but my throat function is 100%   hoping i can eat someday soon ?   4 months out like this to me is a big red flag ... View more