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

Hi Joe i am 3 mo out of therapy for left tonsil cancer and 4 lymphs in neck....i havent eaten in about 4+ months due to lack of saliva and taste and texture etc...its all tastes like road kill..."Capt Australia" posted extensively the need of a stomach tube in therapy and the doctors said no...you dont need it...I took the Capt's advice and got a PEG...without it i would not be on the planet now...sounds like you didnt have any problems eating in therapy so you were a lucky one from what i am reading....   i have  Lymphodema of the face that developed month 2 post treatment....i am going to a certified lymphedema  specialist office for treatment and have to order a collar type device....i am in the U.S. and they recommended a device by TACTILE MEDICAL for the treatment for the head and neck...its called the FLEXITOUCH PLUS ADVANCED COMPRESSION SYSTEM and its way too expensive for the amount of swelling i have so i went with the collar....you sound like you have a major amount of swelling and may have a use for something like this...if you had it you may be surprised how much swelling could go down immediately...but it is a life long affliction so they tell me ....   I did tongue exercises and even though i cant eat i either dry swallow or drink water all the time...the tongue exercises pulled me thru with not eating but that was pre therapy i did those...   i am still having a go of it but hey, i am still on the planet and the test show cancer free at this time so i cant complain about that but it is not the same as pre treatment....and i dont believe it ever will   as for you doctors not telling about all of this ?  my dr's   never told me ONE THING and they lied...and still continue to lie...they told me never get a PEG, and gee what do you mean thick mucous, and thrush?  thats very unusual..,etc etc etc...now they tell me just hang in there and you will be 100%....yeah right....they know nothing or they wont tell us what to expect or how to cope...they hide   good luck to you and find yourself a therapist immediately for relief of your condition if your not already doing that...it works very quickly...but i would be using a therapist and you should be eating fine once again quickly...they deal with this all day long....   regards Bill ... View more

Hi Captain thanks for you interest...yes late yesterday i FINALLY got PET scab results confirmed by my doctor and said i was clear with swelling and scar tissue but no activity and nothing in lymphs or body etc.  thats a relief   still not eating 3 months post treatments....hope i can start soon...every time i eat is horrible and i dont want to eat again....had a ham and egg i made last week...ate the whole thing and hated each bite due to taste and texture and dont have any interest in eating that again...i used love it ?   so, i will keep trying now and then but for now its the feeding tube....   hope your not in the danger of those fires...horrible isnt it...its mind blowing....   i didnt ask but i guess another PET in 3 months...or 6 months...??   regards bill     ... View more

Hi Simmy wow, 7 months....still on the mend....wishing you full recovery....i will be 3 months post treatment on the 10th...still on feeding tube...my food tastes like garbage so i am not eating...every time i try i cant bear the taste...??  makes me not want it again.....   Got the PET results late yesterday at the doctors and its clear...some scar tissue and swelling but no activity....so glad about that...now to get the eating and mouth going....as i type my mouth is filling up with foam...when it will end is anyone guess...   thanks for your information and wishing you a speedy recovery from here...and for me too !   regards bill ... View more

Hi Jen yes eating is non existent for me also...i feel like a fish out of water my nose is working fine but my taste buds, saliva and ability to get correct texture in my mouth is gone like you i know a person who started eating a month after treatment i cant even drink my food drinks and have to use jpeg...not because of my throat which is just fine...but my taste and ability to smell....i cant stand the smell of the drinks any longer it seems...i used to drink them until the flem started...its all just so mixed up for me...i guess i will be sorting it out and getting on track soon i hope and wish you the best of success also....   thanks Bill ... View more

Hi Craig...wow you have had a go of it... yes its a slow road....i wondered if others had problems and i see they do i will be working hard to get back on track and truly appreciate the input   thanks Bill ... View more

Thanks Capt....i needed some input that i am not alone on this trek....most interesting is that i may get a positive on the PET...if you would not warned me i might have flipped out !!!  the Dr's here in U.S. do not tell you ANYTHING...do not help post treatment and wont even see you unless you sound like your dying...there is not help or support...   i will try all that you recommended...my throat is wide open and could eat a pound of steak without gagging.....but its the texture, lack of saliva (drinking soda and water just doesnt work for me) and the now lack of taste or odd taste that shuts me down...cant swallow even a bite...i drink water all day long....not problem swallowing....   i will work on what you wrote and try to get myself eating etc   thanks for the interesting information and i will try my best to turn this ship around....   thanks bill ... View more