Hi Ben! Sorry to hear you went a bit backwards. It happened a few times to me as well.  I was fully feeding tube for 6 mos post treatment. Took me almost 2 years to have some semblance of taste. I am three years post now and if I don’t do my jaw stretching eating a sandwich is painful. It’s silly things like that which happens and reminds me I have to stay on top of it. The therabite hurts like hell but works.  Everyone heals differently but even when it feels like you never will (like when food still tasted bad two years out) you wake up one day and taste your coffee again… take all the small wins as they come, they will come! Feel good 🙂 ... View more

Hi Cap, Thanks for the reply. Yes i know at first i considered COVID since i am an ER nurse but the timing was long since i had seen another human. While not impossible, it is unlikely. I am getting antibody testing for it this weekend to see if i was exposed yet. I ran the same course you did, no taste to bad taste to some return of both taste and smell and then a week ago this happened. I have no other signs of infection. I have spoken to my entire treatment team and they are convinced it is just more effects of the radiation popping up. Damage to the cranial nerve involved with smell is likely. That in turn destroys taste. We will do an MRI of head and neck to rule out all the ominous items like reoccurrence, brain tumor, stroke, etc but they do not think i will get any answers with that at all. That is why i was wondering if anyone here has experienced anything similar. Oh, and they started me on gabapentin yesterday - off label use for phantosmia/parosmia. This one is coming up to par with the mucositis in terms of disruptive. I am praying it goes away as quickly as it popped up. Who knows! Maybe i had mild covid and beat it and this will just disappear like it is for all my covid patients! I am hoping for this scenario as it would be great to have some antibodies so i can return to the frontlines asap! Thanks! Everyone stay safe and healthy, Jen ... View more

Hi Everyone - hope you are all staying safe and healthy through this pandemic.  Quick question - has anyone experienced phantom smells?  How about smell/taste disappearing again after it partially returned?  I am dealing with both at the moment.  My disgusting phantosmia is cigarette smoke which is something i am most certainly never near.  This is awful.  That started a week ago the day my smell/taste decided to disappear again (COVID19 not a concern since I've been in total isolation).  Thanks in advance for any responses!   Jen ... View more

Bill - same - in the US they said they do not repeat the pet ever.  They said very honestly to me - it will never be approved by your insurance so we don't do it.  You just have to watch for symptoms.  I am not sure how that is feasible since re occurrence of nasopharyngeal pops up anywhere in the body.  But what do I know... ... View more

Hi Bill - I had brutal mucositis despite having proton radiation which is supposed to be better.  I was on a med for a while called glycopyrrolate 1mg 2-3 times per day.  It helped slightly but they wanted me off of it because of some of the side effects of the med itself (tachycardia, decreased saliva, urinary issues, etc).  It is primarily to dry up secretions which as we know we are already dry as a bone.  But it did help to slightly reduce the mucus production.  As for sores/pain/thrush - it will not help with that.  That is strictly mouth care.  The constant rinsing with salt/baking soda solution helps a bit.  The magic mouthwash capt mentioned can assist with pain.  I used a special toothpaste and still do to this day (9 months post tx) that is high in fluoride.  I am of the lingering mouth issue club - I still cannot smell most things or taste most food.  I had my feeding tube for 5 months post and still live off of protein shakes due to taste and texture issues with no saliva.   The mucositis feels like it will never end I know.  It will.  The doctors know next to nothing about the side effects and do not focus on the treatment, I know.  Reach out with any questions.   ... View more

Thanks Capt - my submandibulars are acting up this week as well- tender swollen - I’ve very recently started to try to eat again and they think that they are just backing up and getting infected since the saliva doesn’t even come out when palpated.  Fun stuff.  So course of antibiotics and the sit and wait for three weeks until we look at the nasopharynx growth again. I went very dark straight away I think because this has been the first “new” thing.  I’m in the medical field so I tend not to worry about most things but this sent me spiraling.  Thanks for the words of wisdom! ... View more

Hi Everyone!  I am 9 months post treatment from nasopharyngeal.  Did anyone every have weird bumps or growths pop up during routine monitoring follow up appointments on their exams or scopes?  I have had perfect scopes until today when there was a weird new growth near my primary tumor site.  The doc just said we will monitor but I’m hoping someone has some advice bc I feel like I’m spiraling down the cancer rabbit hole again after the shortest remission in history.  He said it could be granulation tissue from healing but I also felt like he was trying to calm me down.  Any input would be very helpful either way - if it was nothing or something.  I just feel like I need to talk to people who understand.  Thanks in advance! ... View more

Hi Bill - I’m 8 months post 35 rads and cisplatin as well (nasopharyngeal).  I just had my feeding tube pulled two months ago and I still don’t eat - I’m on shakes 98% of the time and soup 2% of the time.  I still cannot taste anything in a normal way and all food is either disgusting because of taste or texture.  I feel your pain.  It’s torturous going this long without enjoying a bit of food.  I find the only thing that tastes remotely like itself is sweets which is obviously not sustainable as a diet.  People I’ve met tell me around the year mark this will improve but then again I know people who’ve been eating since a month post treatment.  I don’t know what to think.  The doctors told me the saliva will not find it’s final resting place or new normal until 12-15 months post treatment.  I also cannot smell a thing.  Nothing smells good.  Most things smell like nothing.  They say time.  I’m getting impatient.  But - you are not alone!  Hang in there!  It has to get better! ... View more

Hi Everyone - thank you for keeping this thread active.  I’m 4 months post treatment.  My first scans looked good (some uptake opposite of where the tumor was they think is rad damage) but for the most part it appears treatment worked! I have been catching up and I also get lumpy in my neck which is likely fibrosis from the radiation.  As someone mentioned massage helps.  It feels weird though like lymph swelling but it is not.   Question for anyone - I have had a feeding tube since about a month before treatment ended and I’m still dependent on it four months post treatment.  How long did everyone use their feeding tube for if you had one?  At what point did you have it removed and do you think it was too soon?  Also if you had a chemo port did you have it removed or leave it in?     I have been trying to eat but still find it vile with the lack of saliva.  I can not reconcile having to chew everything for so long without wanting to spit it out because it starts to make me sick.  Especially savory!  I don’t taste most things and what I can taste no longer tastes anything like it did.  I’m starting to think I am going about this all wrong and need to relearn food like a toddler.     Thank you in advance for your feedback!  I’m feeling pretty lost on the food front and as a result I’m losing a ton of weight and have no energy.  The docs just tell me to force feed myself which as you can imagine is not helpful just frustrating! ... View more

@MikeR I’m 38 with hearing aides now thanks to cisplatin.     Has anyone on here had the experience of when trying to eat they have to chew for an absurd amount of time therefore turning the food into an unpleasant texture that is difficult to swallow?  If so does that go away?  I cannot taste most things but the inability to eat at this point is that texture issue.  I chew for so long everything essentially turns to slime and then I just need to spit it out.  Sorry - gross I know!  I’m getting very upset that I’m almost 6 weeks post treatment and this is still happening.   ... View more