Late side effects after H&N chemoradiation (eating, mucous, etc)

Captain Australia

Hullo There

First up, to address the elephant in the room - I'm clearly not American, but an intruder from overseas (I mention, as I've found some good info in these forums and for the most part the community seems to be State-side - GO USA!)

We have an Aussie cancer support site, but the community involves three people communicating by carrier pigeon .. so I thought I'd visit here, as I was curious to compare my experiences to others... 

OK, so I have completed treatment for cancer of the tonsil, abutting the jaw and soft palate.  35 radiation treatments over 7 weeks, with adjuvant chemotherapy (3x high doses of Cisplatin).

Lost my sense of taste early on - in fact, worse, developed dysgeusia (taste distortion) the bad kind where everything in your mouth tastes rancid. 

I thought I'd describe my side effects and progress now that I'm almost 3 months out of treatment (PET scan is 21 March, fingers crossed for a NED, "all clear, buddy").  If you've had similar cancer & treatment, I was wondering if you could share your experience ?

 

First Two Weeks After Treatment

An utter living hell.  Pain daily (and nightly), can't keep food down, even PEG feeds.  Vomitting is violent and awful, and often bloody.  Swollen legs, tummy cramps, horrible constipation to the point where it feels like you're trying to poo a newborn baby (and when you're done, blood splashes into the toilet - sorry).  Horrible mucositis .. so pain within the mouth & throat, and worse, a thick ropey saliva that you have to spit out constantly.  External burns to the neck are painful and require dressing with intrasite gel.

 

One month after treatment

The constipation, water retention and external burns all clear up in the 3-4 week mark, but the mucositis is still bad.  Have to constantly cough up phlegm, and can't eat or drink (because of the foul taste and feeling that the ropey phlegm is accompanying the food down your throat).  Still occasional vomitting but not as bad.

 

2 months out of treatment

The mucous starts to back off, but is replaced by dry mouth - waking several times at night with an arid dry mouth.  Gross mucous is still there, but it's less intense - so I can get the PEG tube yanked out (because I can now tolerate liquid by mouth, even if I can't eat .. so I start drinking the formula I'd normally push down the PEG).  Begin to detect some returning taste, but it's maybe 40% of what it was pre-cancer.

 

Third month of treatment

I have to be grateful that everything has gotten progressively better, but I find myself wondering if I'll hit a ceiling. 

For example, the mucous is much improved, but it's still there, as is the internal pain in the back of the throat, and the occasional coughing up blood.  In terms of the severity, I'd say it's about 20% of what it was at it's worst, but the burning question for me is:  please tell me this is not as good as it gets - will this mucous problem go away entirely ?

The dry mouth is quite bad, but manageable.  Trying acupuncture as there are some international studies supporting efficacy with dry mouth.  Just need to always carry water around and keep a bottle by the bedside .. the way it interrupts my sleep is demoralising, but I can live with it. 

My sense of taste has improved a bit - it's maybe 50% of my pre-cancer levels .. basically I can taste a shadow of what food was pre-cancer, and the same question that applies to mucous also applies to taste:  will it recover completely ? 

When I try to eat now, I can swallow solid food, but I can't eat for pleasure, because, although I can kinda taste the food a bit, as I chew it (necessarily mixing in water so I can swallow) it feels like its being tainted by the mucous, making swallowing the food a bit .. gaggy.  With willpower, I've eaten chicken wings, some apple, yoghurt .. but it's unpleasant at this stage. 

Also, weirdly, I seem to have lost my ability to vomit.  I'd never have thought that was a bad thing .. but I kind of miss it when I'm gagging and coughing, and something starts to come up .. but I can't get it all the way up (perhaps due to no lubrication), it just kind of lodges in the throat and I have to swallow it back down.  Have you experienced this ? 

Just curious to hear the experiences of someone in a similar boat .... thank you.

bugsyboy

S-L-O-W Progress

G'Day Captain,

You've really just begun to recover as we "cook" for several weeks after treatment stops.  Your recovery will be slow.  Your taste will slowly morph into your "new normal".  I remember when I began getting my taste back, I would drink glass after glass of chocolate milk.  I ate tons of scrambled eggs and macaroni & cheese.  Keep trying things, but I would suggest staying away from anything acidic such as tomato sauce and orange juice; at least until your oral cavity is completely healed.

I don't know that your throat will ever be the way it was.  I'm about 2 1/2 years since my last treatment and I still wake up in the morning with phlegm in the back of my throat.  Similar to you, I can't get rid of it completely.

What you're experiencing sounds normal to me.  Your taste will ebb and flow, but will eventually level-out to a "new normal".  Your taste will never be what it was, but slightly left or right of center (if that makes sense).  For me, some things like fresh fruit, never came back.  It doesn't matter if it's oranges, pineapples, or apples, they all taste bad.  Popcorn is bad.  Dry cereal is bad.  But give it time and keep trying.  I still do.

Best of luck.

Bugsy

CivilMatt

welcome

CA,

Welcome to the H&N forum, sorry that you find yourself here, but glad you are through treatments.

First up, there are a number of members from outside the United States, so you are not alone.

Regardless of where you call home the symptoms and side effects are similar and do (generally) get much better.   Better to where it is called a new normal.

I hope you continue to improve every day.

Matt

AnotherSurvivor

Welcome.

Welcome.

I'm also in month 3 post, PET is April 3.  Everything you describe is very familiar.  I am seeing Slooooow progress.  Yesterday I ate some mac with chicken in pesto and olive oil, real food, first in a long time.  Fruit is now common, peaches bananas, mangos.   Taste of bananas is amazingly clear.  Peaches started out salty, now almost flat.   Whole milk, lubricates and mixes with banana.  But otherwise chicken soup and nutrition drinks that I am very tired of.  

I'm hearing a year for full recovery for me.  I ramped up fast after treatment ended, and I thought maybe 3 - 4 months, but at +2 months and now understanding the saliva especially will be slow, I've started to accept a year.   Good news is I will be alive at the end of it, and I intend to use the next +25 years well.

But this is a very good site to ask the questions the docs don't seem to have answers for.

I have been told that the mucus is actually just secretted by the tissue damaged by the radiation.  The mucus levels drop proportional to the healing of the tissue.  So, I target 200-300% daily recommended protein.

https://health.ucsd.edu/news/releases/Pages/2014-04-30-protein-may-aid-radiation-chemo-recovery.aspx

Otherwise, thrush happens periodically, nystatin helps some,  water to suppliment saliva. Saliva shortage techniques list dehydration as a source, so I'm forcing lots of oral tap water.   And trying daily to increase activity level so I just don't notice the problems.

MarineE5

Echo the others replies

Welcome Aboard C.A.,

As AnotherSurvivor mentioned, I too was warned that I might have to deal with several side effects for roughly one year. Fatigue will be one of them, some days I had plenty, so I over did it and then felt tired for 2 or 3 more days before feeling good again. 

Sores in my mouth, just to warn you, my Radiation Oncologist told me that I might have sores pop-up now and again in the first year, which did happen. So I leaned on my Baking Soda and Salt solution once again to fight them. After the one year mark, I haven't had any more sores. 

Mucus, I am probably one of those that may have to deal with it forever, I am over 12 yrs out and still have mucus daily. Nothing like I had before mind you, but it is an issue a few times a day. 

Taste, it was suggested here that we should go to a Buffet about every 3 months and sample the food to see what works for us at that time, return in 3 months and sample again. I enjoyed ice cream prior to cancer. Hated it for nearly 2 yrs after my surgery and treatments, now I am making up for lost time. 

As mentioned above, we all find our "New Normal".

My Best to You and Everyone Here

Joy123

Its been 2 weeks since my

Its been 2 weeks since my last radiation treatment and 3 weeks since last chemo treatment for squamous cell carcinoma  of the tongue and lymph node.  The mucous is thick and copious and difficult to cough up.  My mouth and tongue are very sore. Now have developed a cyst on salivary glands under tongue.   Using peg tube due to choking and sore mouth. Feels like I have a big lump in my throat when I swallow. I attempted to sip tea but just choked on it.  Using baking soda rinses and peroxide rinses. Also magic mouthwash. Any suggestions for healing the mouth?