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

[Azjoetrucker]

My mouth sores began to disappear towards the end of the 2nd week after mmy last radiation.  Right around this time it was possible to start eating solids without a lot of discomfort (I never had a PEG).  

   Now on my third week out, throat sores are gone but throat pain when swallowing still slightly there.

   Interestingly, the radiation burns in my neck began getting worse on the first week after radiation and now on my third or so week out, it's finally healing...albeit slowly.

[Azjoetrucker]

Hi Roxy-

  My saviour was a milk shakes with 6oz of milk and 3 scoops of strawberry ice creams (I guesstimated 400 cals), then picked up solid calories from over easy eggs, scrambled eggs with Mayo and cream cheese sandwiches dunked in warm chocolate milk.

   I still lost 18 pounds-mostly during week 5 to 6th and a couple of pounds the first week after Radio ended.

   Although I too refused to get a PEG, I now wonder if it was worth the pain.  (I didn't start taking acetaminophen til Week 5...it was the only painkiller I dared use.)

[Azjoetrucker]

I experienced that same problem with chewing stuff to death.

   I found that the problem (besides the inability to taste a lot of stuff and non_existent appetite) was my choice of foods.

   Experiment with as large a variety of food items as you can to find the items you will be able to chew reasonably well (most of my teeth had to go...) And comfortably (least painfully) swallow.

   Hope this helps.

[mahootna]

@Jen827 

Hi there, I am five and a half years post treatment and sometimes still have this problem with chewing and then trying to swallow.  Mainly with some meats such as steak.  
Also well cooked meats as in casseroles can also still be a problem.  Sorry to burst some bubbles but there are some things that will never get better no matter what the doctors may say.  We are all so different to start with that they just don't know what will happen.  Read back through some of my other posts and you will get a different perspective from the Captain's.

I just go one step at a time one day at a time and have to keep going so as to care for my husband of fifty years.

Just experiment with different foods at different times to find what works best for you.  In my house the standing question is "what will I have for lunch, maybe soup. Yep think I will have soup"  This is my go to most days.

[Bill1]

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

[Bill1]

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

[Azjoetrucker]

Hi Cap...

   Sorry I missed your post.   According to my journal the mouth sores were mostly gone towards the end of my second week after Radio...about a week after last Chemo.

   We're all different, true but I did not have a peg so I did use and abuse my mouth.  The throat (swallowing) pain stayed with me at say a level 5 for another few days, and is now at a 2 or 3 going just over my third week after last chemo.

   Regards and stay positive

  Joetrucker

[CAP]

Hi JoeTrucker, 

That’s good to hear. A lot of what I’ve heard was a longer time so this is hopeful for my husband. He just finished radiation today and his neck is so burned and sore and has sores inside his mouth and down his throat. Only able to get him to drink three ensure plus per day along with at least a quart of milk. Since he had surgery first back in March, he has an obturator that he removes at night before bed. He is hoping to have a surgery to reconstruct his hard palate and upper part of jaw. His cancer was in his upper gum so several teeth were removed along with some of the hard palate and 40 lymph nodes in his neck. He had chemo the first week of radiation and the third week. Bloodwork was not good after that so they didn’t do the third round of chemo. Some days I wonder which is worse - the cancer or the treatment.

[Azjoetrucker]

Hi Bill...

  Not sure why my original response never posted, but here's the gist of my suggestions.

   First off, you are doing good by informing yourself about your condition...but you are using info to build a mental chamber of Horrors.  Man, you really need to work on taking it this cancer one day at a time-there'll be plenty of challenges but depression and ulcers really shouldn't be some of them.

   I would reccommend you take up yoga and or Tai Chi.  Not a bad idea to get competitive and join an internet group for chess or backgammon.  Really, get your mind away from your vision of what's to come...face it if and when.

   I'm almost to my fourth week after last chemo and yes still have issues.  I did not have a PEG intalled and probably wouldn't have really needed one til Week 5.  From what I've read, PEGS have their own issues and require some learning and creativity to minimize those.  It was painful to eat and yes I lost around 20 lbs-2 of those the first week after last chemo.

  We all walk a different path in this journey...but self control and a can do attitude is half the battle here.

   Remember-a lot of us make it to the other side a bit worse for the wear but stronger for the experience.

   Regards, AZ Joe Trucker

[Anonymous]

Hi all

A bit of an update - I posted in late '17 and '18 after going through chemo radiation for a T4N2cM0 base of tongue SCC P16+.  A few battles along the way but on the whole I've had a better outcome than most and my new normal is totally livable.  Usual issues around swallowing dry foods and a little persistent pain, but nothing that gets in the way of life.

So, 18 months after end of treatment I'm thinking we've nailed the Big C - but a fortnight ago a biopsy of a lump low in my neck showed up SCC cells!! 😕  This was a little lump smaller than a pea, found at the ENT clinic last December and CT scanned twice since since with all looking fine.  Nobody was worried about it but they decided to do a FNA biopsy "just to eliminate the possibilities".

I'm booked in for a neck dissection in a couple of weeks to strip the lymph system from left side of my neck, some thing I hoped to avoid...

I'll let you know how I go - my main message is to remain vigilant and keep pestering the doctors if you aren't sure about something.  Before my original diagnosis I was mis-diagnosed by specialists for a year, this time I was re-assured all was okay for 6 months - both times turned out to be SCC.

Shane