Thank you Craig, very humbling and emotional. As the partner of someone going
through this nightmare, it’s a salutary read...but helps to understand what’s going on, when sometimes our loved ones can’t enunciate it.
Hi All! Just checking in 4 months post treatment. I had 36 radiation sessions and 2 rounds of cisplatin (stage 4, unknown primary). Most taste has returned (thank you, chocolate), and some salivary function--i still need a bottle of water at all times.
Very happy to report also that follow-up PET shows "2 lymph nodes have resolved...no uptake along base of tongue." YEA!!!
However, I want to report that I am beginning to have some (neurological, I think) issues in lower mouth and jaw. Tingling sensation began in lower lip and has now moved to whole lower jaw in last two weeks. Just when I open my mouth.
Anybody else had that?
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!
I had my feeding tube ripped out 4 weeks after treatment ended. Either they removed or I would. Was sick of it.
Like you I dropped a tonne of weight. Went from almost 100 kilos prior to treatment now down to 72 kilos.
I do not eat as before prior to treatment and do not think I ever will. My main meals are stews, Protien drinks, scrambled eggs, pasta with sauce, spaghetti bolognaise. I can eat meat pies and some pizza if I put my mind to it but followed by a lot of water to swollow it.
steak,chicken is out just to dry to eat and takes months to chew. Veggies can do but with lots of butter or gravy. My taste has somehwat returned however I don't think it will get any better than it is now. I still have almost no saliva and doubt it will return or if it does it will never be like before.
Try soups and stews, scrambled eggs, veggies with lots of gravy or butter and protien drinks. You can have bread if soaked in soups. toasted sandwiches take ages to chew. Hamburgers, the buns are to dry, the meat to spicy and takes awhile to chew so i give up. lol
This is my new normal and to be honest I don't much like it however I'm alive.
Wish you all the best, and try eating the foods I mentioned and see how you go. Chocolate still tatses terrible for me so I avoid it. Mashed spuds to are easy to eat. Probably not healthy but edible.
My advice would be to make your decision based around your ability to drink water.
If you can drink and swallow without hardship (or with a level of effort that you can manage), I think that's the time to get the tube removed.
Basically, in principle, if means anything you can put in via the tube you can put in via your mouth .. so even if you are only consuming the shakes, it's still better to take them via mouth than via tube, so as to regain your swallow reflex (or not allow it to deteriorate any further).
As soon as I could drink a glass of water, even though it still tasted a little bit gross, I asked the doctor to have my tube removed, it was scheduled and removed about 2-3 weeks later.
Regardless whether the tube is actually removed (warning: it hurts), if you can swallow, I suggest take as much as possible via mouth and minimise any use of the tube.
In my opinion, your timeline should look something like this:
- start experimenting with swallows of water
- if you can keep water down, start to increase volumes
- once you can swallow and retain a full glass of water, try a shake, and at that time start to organise getting the tube removed
- as a next step try and drink cuppa soup (without noodles, at first, just pure liquid soup, but the taste of chicken or tomato or pumpkin or whatever is your favourite -- you may find your appetite starts to awaken a little if you can actually taste foods again, and if some/most/all of your taste is back)
- from there it's onward and upward. Even if you only take a conservative liquid diet via mouth for a few months, it's still going to be more than you were getting via PEG, and it's going to be waking up those muscles you use for swallowing, that may have started to .. forget .. a bit how they are supposed to work
My two cents. Good luck, I really hope you can return to eating food in the short term future.
I am six years post operation, actually today is the anniversary of this journey.
Please go back and try and read mosat of my threads as I cover everything except the feeding tube. I was able to avoid having one under advice from a very dear friend.
The saliva problem will remain for the rest of your days and the glands do not repair. Taste depends, for me it is limited as they removed a large portion of my tongue.
Food is a problem still this many years down the track and there are certain things I will never eat again.
The upside to this is my weight problem is now under control. All my main meals are served with a good serving of gravy. Also eat a lot of home made soup with is packed with lots of goodness. I grate the vegies for my soup as I find it requires less chewing.
I have a lumping neck and my right jaw line is a rock solid mass. Just all part of the fun.
It is hard work adjusting to this new life but with the support of friends, family and this forum you will make it.
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....
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....
Hi there mozz. How are you doing? Well we had a difficult week... but somehow have ploughed through. He does have a very strict med and mouthwash routine going so for whoever is reading this you may find it helpful as I truly believe sticking to the routine come rain or shine has helped tremendously. Here it is:
Difflam 4 times a day
Antacid oxetacaine 4 times a day (20 mins before attempting protein drinks)
Caphosol (mouth rinse) 8 times a day
neurofen (4 times)
Paracetamol (4 times)
Liquid morphine (currently 5ml every four hours
Nebuliser 3 times a day
Diprobase cream all over neck and head etc 6 times a day
He does this religiously every day. It is a routine the has kept him going and kept the pain and discomfort to a manageable level. The team working with him have been all about pain management and keeping on top of it all.
As of this week (penultimate) he is no longer managing any food, just concentrating on protein drinks and calories. He was very poorly over Tuesday and Wednesday but they gave him some intravenous fluids and he is now feeling better than he was. His neck is just beginning to show a few areas of blistering. And talking is very difficult - effort and pain. Lots of sleeping. But also awake periods where he is a bit more “energetic”. He’s very stoic and very focussed- he may have to go into hospital next week to have the last chemo depending on how he is doing... one more week to go! I can hardly believe we are almost there. I do recognise of course that there is still a long road ahead but at least psychologically we can move forward in our heads and look to the future ... love to everyone - keep up the fight xxxxx
Mate, although it's tempered with sympathy (and direct understanding) of what you're going through - I am completely delighted that my advice and experiences were so useful to somebody else.
With respect to different things you can try to get through the dysgeusia, my personal experience is that nothing will work. I think you have a very specific type like I had, loosely called things like "rancid taste dysgeusia", it means that everything you put into your mouth (even your own saliva!) can taste like poison or roadkill.
If you force yourself to eat, all it's going to do is cause you physical pain when you vomit, and potentially future psychological issues - like pattern based food aversions.
My personal experience is to wait it out and rely on the PEG tube - it will wear off entirely - you will reach a point, from my experience a few weeks after the end of therapy .. like a month after your last chemo ... where the rancid taste starts to fade .. instead of poison, water will start to taste better .. like it was harvested from a toilet, but still much better. When you can start to sip water, you've got maybe a week or so before it is drastically improved, in a very short time you'll be able to take the nutrition shakes by mouth (at which point I had the PEG yanked, because as soon as it can go in via mouth, even if it's work, it's good to reduce or eliminate PEG dependance).
Because .. the consequence of PEG dependance is that it can cause long term swallow difficulties. Even if you have nothing in your mouth, its advisable to try and swallow (you know, just swallow back, like nothing), to keep the muscles & reflex.
There are medicines like "magic mouthwash" (which you'll need a compound chemist to mix, in principle it's a numbing agent that coats the throat, theoretically allowing food down the tube without touching the mucosa and triggering the rancid reaction ...
... your mileage may vary, but my experience was that it's pretty much useless. Just try little sips of water every so often, and assess if it's getting any better (and spit out if it's rancid - it may all be in your mind .. but let's face it ... EVERYTHING is electrical signals in your mind, everything you see, hear, touch and taste is really little more than sensory logic, so when people dismiss stuff in a kind of 'matter over mind' shake it off sort of way ... don't worry about them. Worry about how you feel and the discomfort you suffer when you taste poison, and I personally think: don't force yourself.
You may get pressure from dieticians at the hospital to try and eat all the time, don't be afraid to say simply: NO. I had a bit of work educating them exactly to the rancid taste dysgeusia, and that their advice verged on irresponsible (because they knew nothing about the food aversion studies, for example).
You're in the trenches, just get through it. Don't kick yourself around too much, and don't allow others to kick you around either. Good luck, mate.
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