Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[CaptainAustrali]

And regardless what the world tells you:  It's YOUR body, mate.  It's your life.  

If trying to take food or liquid by mouth is still distressing, if you genuinely had that rancid taste dysgeusia, then most people won't understand it.  It will wither away.  Just try sips of water until you can tolerate them.  Once you can tolerate them, up it to lemonade or some kind of soda, then eventually work toward getting those shakes that you take via PEG in via your mouth.

Once you can chug down those shakes, get the tube yanked and re-learn how to eat/drink/swallow.

The main thing is your swallow, mate - even if there's nothing in your mouth, try to swallow.  Its weird because without saliva you don't really need to or feel the urge, but ideally you want to keep those muscles working - if you lose the muscle memory of swallowing, you can be lying down 2 years later and feel a bit of accumulated mucus / slime in your mouth and have an episode where you are trying to swallow it down but it feels weird and unnatural.

Once you can sip water, keep it with you all the time, take sips constantly, swallow.

Until then, if anybody is urging you to try and eat actual food, that's fine - try.  But don't persevere multiple times per day.  If it doesn't work, tell them in no uncertain terms, you are Mohammad Ali, you're managing it.   It will get better, the start is being able to sip water.

If you can already to that without distress, that's AWESOME.  You ramp it up from there.  But once you can sip water, do it all the time - keep that swallow mechanism working, and also get your body used to having a bit of irrigation in the old airway/food/upstairs plumbing system.

[CaptainAustrali]

Sorry buddy, last thing - the rancid taste dysgeusia is very rare, and it takes a while to fade away.  I don't think clinicians and dieticians quite recognise it, but it is fucking AWFUL.

Yours is starting to fade, because you can take stuff in via your mouth, even if it's distressing, just give it time.   The thing I forgot to mention:  Cuppa Soup.

In Australia we have these soup products, not sure about you - don't get the ones with noodles etc at first, it's basically chicken/beef stock in water, really.  But that for me was the first sustainable semi-food I could take, and I could take it warm.  There's something encouraging about that first warm food after months of plugging stuff in through your PEG.

So for me it looks a bit like this (starting from the top and building to the next step):

- sips of water

- cups of water

- soda of choice, milk, juice, other drinks

- cuppa soup

- other liquified meals:  like get a juicer and liquify high nutrition vegetables and get creative throwing some stuff in there for calories - custard, ice cream, whatever

- start experimenting with sweet solid foods, stuff that you used to like, but ideally soft foods, example, ice cream, yoghurt, etc

- move onward and upward from there, trialling different foods

(It's not just the rancid taste, but if you had chemo it's likely your tastebuds are altered and some but not all of your taste may come back.  So you're also experimenting with foods and taste to discover what foods you now enjoy and dislike in the new regime.  The post cancer 'favourites and dislikes list' will look very different to the pre-cancer one)

[CaptainAustrali]

Haha, sorry about this:  one LAST thing

GET YOUR THYROID TESTED

You're in the trenches but you will start climbing out.  As you do, you'll experiment more with foods, trying to find things you can enjoy now.   With all these calories coming back in, it's possible your thyroid was impaired by radiation damage, and it can have devastating result.

My case:  at the end of treatment I weighed about 82k.  

The radiation devastated my thyroid - it's taken a year of gradually increasing dosage to find the right amount of thyroxine (a synthetic substitute), my impairment is pretty severe.

The thyroid regulates your METABOLISM.

I didn't notice the problem in the first year, figured the gradual weight gain was from rediscovering food, and also a phase where I could only take soft foods, so there was quite a bit of stuff like ice cream, crème brule, that sort of thing.

3 years out, the medicine has gotten to the level where the problem is arrested and I'm able to lose weight - but there's a period there where I drastically reduced my calorie intake and was STILL taking on weight, imagine eating like .. 3 salads a day and putting on a half kilo.

So yeah, a gain, over three years, of something in the neighbourhood of 40-50 kilos.

There's a lot of work to turn that ship back around - so if you get a thyroid test early in recovery, you can mitigate the problem as soon as possible.  I can't overstate how important this is for anyone who had radiation to the head and neck, it should be a routine part of post-treatment care.

Go to your GP, give blood, test thyroid.

[CraigJ]

Really solid advice! I’m 11 months post treatment. I had a very tough time for the first 6 months after treatment... 7/10 pain all,the time. I finally got referred to a pain team that changed my life. I still had throat pain so they did another operation to rough up the sensitive area to  reset the healing. It worked well. I did lose 53 pounds, I’ve restarted eating table food again and gained back 15 lbs.

when it was so painful and dark I reached out for help ( from a local throat cancer survivors group and my medical team. ) it took a while but it all turned around. 
maintain a positive attitude ... believe you will emerge from this storm! 
be patient when your patience is exhausted.

be optimistic about returning to your life when it seems impossible to believe.

i code blued a year ago today (Pulmonary embolism) and was revived and now a year later I’m a changed man who is working again and playing competitive basketball in old men’s leagues again. 
I hoped to get to this point again in 3 years but step by step I’ve attacked each setback with a new approach. 
it did seem to me that each week brought bad news. But in time each month ( brought good news and steady progresss has returned me to “ normal” life.

although when I was in the darkest time ( the first three months post treatment) I needed to know that things can improve if I follow the path taken by other survivors.

[Jen827]

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!

[Bill1]

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

[Bill1]

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

[Bill1]

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

[CAP]

Hi Bill,

My husband had 30 radiation treatments and 2 rounds of Cisplatin, so quite a bit less than you. His cancer was found after having a tooth pulled. He had surgery to remove a couple more teeth and bone in his upper jaw and palate. There is a large opening up to the sinus cavity and must wear an obturator to cover it so he can drink and have ensure. He had the horrible sores in his mouth, loss if taste, the thick stringy mucous, and worst of all the lack of saliva. Everything has cleared up except the saliva. It took about 2-3 months from the end of treatment. He has been treated at Memorial Sloan Kettering . They tell him the saliva should start to come back in 12 months post treatment, maybe longer, but will probably not be 100%. He still drinks ensure 3-4 times a day and has gained back some of the weight he lost. He cannot eat meats or anything starchy like potatoes, bread, beans, rice because of the lack of saliva and enzymes to break it down. He is able to eat fruits and vegetables and they taste good. And of all things, he just had a hip replacement surgery last week. I was very worried that he wasn’t in good enough shape for it, but he is doing better than I expected. I hope things will turn around for you very soon and I will be praying for that.

[Simmy63]

Hi Bill, All the best with your recovery. One step at a time 😊