thanks Capt...will truge along and wait it out....thanks again.... ... View more

Hi Capt i have what you had in respect to racid taste and cannot eat....had it weeks...using the tube you recommended that has saved my life...thank you once again...but....one more question...did you find anything at all you could put in your mouth to take out the 24/7 rancid taste ?   i have been sick to my stomach day and night due to the taste in my mouth and trouble sleeping as well due to it ....i have NO TASTE but rancid taste....it feels like small droplets leaching from my tongue that start real sweet then turn to battery acid and rotting flesh.....   if only there was something i could put in my mouth that is dry as the Sahara  and all slimed up and stringy as well as pure foam....when i put plain water in my mouth it really wakes up the sores from the radiation....i assume the taste is from the chemo cisplatin.   my tongue is white slippery slime covered, cant brush the tongue it hurts for a day if i try....my teeth must be crying for mercy....but i can brush the teeth.   having trouble sleeping as well as being awake not being able to get away from the tase and slime....   tried to chew gum....forgetaboutit...almost threw up...anything that goes in my mouth causes the gag reflex...even water if i am not very careful....something with taste of course gives me a rancid taste and the gag reflex starts...and hurts as well...   got 3 more weeks of chemoradiation left tonsil and 4 lymphs....then the real pain begins for awhile i guess from reading....then some let up....i sure hope i return to normal somewhat because this wont make it......i am not looking forward to each new day right now except knowing in 3 weeks no more treatments......24/7 nausea (take a nausea pill once and awhile if really bad...cant live on them) and the mouth of course....   all i have been doing is some water drinking by mouth to try to keep troat muscles going and using the tube for everything including water etc....   thanks BIll ... View more

yes, nothing worse than no saliva...mine is all foam...and my entire mouth is full of slime underneath....and i get pings in tongue and cheeks of terrible tastes...its unreal...i am only in wk 4 next week and i lost all appetite and can not eat or really drink due to taste, all saliva and my tongue is road kill...zero appetite and anything that i bring near my mouth lets me know it will make me puke because of taste and texture....throw in a bit of mucocitis and you have everything that the doctor never told you about and....they have no fix for because they dont even know what your talking about...at least here in U.S. its pathetic...   CAPTAIN AUSTRALIA tipped me off prior to starting....if it wernt for him i would not have a stomach tube and be in the hospital...my Dr's were dead set against a feeding tube...can you imagine....   wishing your husband the best and we are all rowing the same boat it sounds like....better days to come ! ... View more

thanks Capt...its ironic that i got "rancid taste dysgeusia"....i was eating great and put on 20lbs prior to therapy and now in 3 weeks lost 15 of those....its hard to push drinks down plus water...i am getting up really early to try to start and being told i need at least 5 drinks to get the cal and protein etc...taking most water by mouth.....just thinking about certain foods and drinks almost makes me throw up...never mind eat or drink them.....   in 3 weeks already got some mucocitis...back teeth and roof mouth where they are shooting the tonsil i guess...tight jaw etc....they say i am ahead of pain schedule for that by a couple weeks....wonder what wk 5-6 will be like  if its this bad now ?  the tonsil has already disappeared....but they will shoot it for another 4 weeks ?   your posts really helped me to get ready and will now finish the plan   did you ever find anything to help with the taste left in the mouth 24/7 ?  they say eat spicy sauces etc...????  how could you with mucocitis ???  i had to change tooth paste 3 times already due to the pain of it....spicy sauces ?   did you take any anti nausea meds?  they gave me Zofran....its the worst constipation med ever...and the rest are worse according to them so i have load up on fiber etc...its a job unto itself.... ?  the chemo hits me the next day for a few long days....   the dr. knows nothing about it...my radiologist yesterday looked at me like i was from outerspace...they are not in touch with the patient...they just want the patients to shoot but there is no safety net for the patient...i got the magic mouth wash...it lasted 10 minutes and tasted like jet fuel....useless...   thanks for all your help Capt Bill1 ... View more

week 3....dysgeusia has fully set in...can not eat anything without throwing it up....mouth will not accept food or protein drinks etc...water tastes horrible but getting some down.....   Capt Australia  was rather convincing to get a PEG prior to therapy....he said it could save your life....well, I got one and it has....without a PEG i would be in the hospital...and still PEGless   you see, although my throat is fully open to eat and drink my by brain thru dysgeusia wont let it go down...except small sips of water that tastes like kerosene...but water has to go down at the minimum to keep the muscles active....can not go without using the swallow....   thanks Bill1 it is making a totally disgusting therapy even worse...and i expect it will stay with me thru out....   THANK YOU CAPT AUSTRALIA .... I KEPT ALL YOUR POSTS AND READ THEM DAILY....YOUR A LIFE SAVER....   if you are going to go thru tonsil therapy with or without lymph nodes....GET THE PEG.....   my dr. said after you start and want a PEG most doctors wont do it because they dont want you to die on the table etc and will make you wait till your near death to put it in....at least where i am in the U.S.   read these posts....know what your in for .....   there is nothing i can do to fix the problem so i have to now ride it out....with a PEG....   Thanks Capt ... View more

has anyone ever tried LIQUID HOPE for calories and protein ??  450 cals/ 9fiber/23protein...need to water it down and can eat or use in tube.... $$$ not cheap !   https://www.functionalformularies.com/liquid-hope-information.html ... View more

thank you everyone for posting all your excellent information.....its hard to wait for my treatment and sleep thru the night etc...i  am not looking forward to it....i hear everything your saying...everything   getting a couple cavities filled and a new crown this week...got the radiologist a bit po's since he said he will now have to do another dry run to see if the mask needs to be changed and the shots remain the  same etc ?   my biggest worry of him shooting the left tonsil and then the left lymphs is the Parotid, submandel and sub lingual ....i dont see how he can do that without blasting out the salvararies....then i have a node by the thyroid...so good bye thyroid and some crossover to the right lymphs ....wow...some scary stuff...   my general physician suggested not to get the PEG up front....he said he has doctors that can do it in office in 5-10 minutes whenever i need it...of course that baring weekends, holidays, vacations, golf etc. which is when you usually need it....the dietitian says to get it...the oncologist, radiologist and nursing staff for the radiation say ??? wait is ok...what the rush ???   i dont think they know the horror you people have lived and are still living...seems like they are disassociated with all the pain...I cannot get a straight answer out of  the doctors about what they project my outcome will be with the pain and weight loss possible....or proton vs conventional radiation.....just get it done seems to be the prescription   the choices i guess are nil...its not an elective surgery for a nose job or something....its life....or....death and i guess i just have to trust their judgement and see what i get at the end of the tunnel....usually not a good thing to do in a situation like this...thats why the forum is so important....its the only insight one has for their knowledge base.   the waiting game for them to complete the treatment plan of the radiation and thinking about it is not enjoyable to say the least....up 3 a.m....most mornings and getting little sleep...   i am trying to put on weight but its tough...its a full time job and a short time period....i am meeting with both dr's this week and will discuss the PEG further with them and try to shake them down about what they expect my condition to be if i try to go without....i will probably end up with an ulcer by the time it starts and may just get a PEG to forget about it...just dont know...cant afford to loose 15-20 lbs...   regards Bill ... View more

hello everyone i just read this on a site about Mucositis...perhaps the Capt. can comment or anyone else if they know anything about this product and if its worth having in the ready..... ..... For the thick mucus, try Adding Qaufenistein to her meals. It is OTC at most drug stores and is cheap. It has no side effects and will thin out the thick mucus to nearly a water consistency. It is used in Mucinex products for this purpose. I take 1200 - 1600 mg/day - 400 each meal + 400 at bedtime. I have not found any info on max tolerable dosage yet beyond 2400gm/day. Make sure her head and shoulders are elevated at night so that the (now fluid) mucus will drain down her throat.   thanks bill ... View more

Hi April wow, what a go of it for your treatment....i am not looking forward to it...my radiologist didnt want me to get a PEG but with Simon and everyones experience i will get one next week and he has ok'd it.....   i will get kemo and radiation 7 weeks or 35 blasts....like all of you got i think....i have read about oil pulling for mouth pain ???  http://www.cancergrad.org/blog/oil-pulling   i also take a huge amount of supplements and keep vitamin C in my body 24/7 with the help of a supplement and take about 1500-2000mg day....but they want me to stop that also along with all the other supps i take.....did you take vit c during your treatment or just stacked up prior ?   i am in U.S.....the docs dont like supplements....they look at me like i am a space cadet...but i am 70 and have been doing it over 20 years and was in super shape until they stopped my running and everything to conserve calories....   i go today for mapping and a dry run and should be started in a week for treatment   i am shaking in my boots....but i will do what i can to get thru it   i have left tonsil with a 2.2cm cancer and about 6-8 lymphs in left neck and back of neck and he said he will reduce the beam and shoot some on right side for preventive measure....i am afraid i will be a basket case being shot from the tonsil to base of throat....yeooooow   i hope i can keep mobility since i have family responsibilities and need to keep going...   he did say he will injure the thyroid, no avoiding that....   what i hope to NO GET is lymphedema......wow, the pictures are pathetic...it can happen with lymph node radiation.....what a night mare it all is   thank you for all your info....you have all been very helpful.....i hope i can pay back to others as you have helped me....   thank you BIll   ... View more

Hi April thanks for your support.  Yes, it is a tough position to be in...an unknown path of life you cant prepare for...i will take your words to heart and try to muster up the strength...i feel my age is a factor...70...i am in great shape but that will work against me since i have lean body mass and cant afford to loose weight...i weigh 155lbs and 5'10" but as a runner forever i lack the fat needed here i do believe..and i am told i cannot run now and stay lean...i must put on weight...well, i dont eat calories and carbs routinely...so i am now trying to get that down my throat to get ready for treatment in the next week or 2 when they said i will start...so my biggest dilemma is the PEG...the Oncologist says wait he can have it done later but most that went thru this said without it you can be in worse jam when your throat shuts down and its a life saver etc......   so, as you can see i am trying to make the right decisions now before i get into it and regret listening to only what i want to hear...i need to be ready for battle and listen to it all...good and bad......   i guess this is my big life marathon so to speak and i am just trying to see what i can do to make it successful without too much drama...   all posts have help me in one way or another to build knowledge beyond more than i could have ever hoped for and hope i am around to pay back to others what all you have gone out of your way to provide me in my journey   thank you BIll ... View more