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So recovery off to a rough start need advice from veterans

Hard12Find
Posts: 209
Joined: Sep 2012

So about the last 4 days I have started to loose the balance, and back on the nausea train.
Around the end of week 5 I lost tolerance for medical formula, and was loosing weight fast, I placed myself on a malt o meal gruel and was able to stabilize, not great but not 2 pounds a day gone either, was only taking an occassional ondancetron for naseu, milk of magnesea to keep moving , and the ocassional sleeping pill. Mouth / throat pain was tolerable. I know I have esophageal strictures, I can feel the swollen tissues, can still force water past them, and try to do that a few times a day.
Anyway, after my last radiation treatment on Friday the mouth and throat pain escalated to where I needed to do something. I wanted to avoid narcotics because they make me vomit, and the pain from that is too intense, so my radiation oncologist said antiinflammitories like Ibuproprin, or aleve. I tried and it helped quite a bit with the inflammation, but was pretty rough on the stomach, since then I have fallen into a spiral of nausea, vomiting and intense pain, I went back on the scopalamine transdermal patch, cant really tell if I am getting any benefit there as I am still nauseated, and back on to oxycodone for pain wich works really well for 4-5 hors, but each time I renew the pain med it is an adventure. ( I am adding it to my food). I have nasty thick sticky bubbly mucous (1 cup a day) that tickes the throat just above the stricture, and right at the larnx, so I am gagging, chocking and coughing. I am also coughing up a thicker darker mucous. When I try to lay down to sleep, just about the time I doze off there is enough mucous puddles to make me wake up gagging. I am at my wit's end and am thinking of going in for hydration to make sure that isn't the issue.
So Have any of you veterans experienced some or all of this and is there anything to do about it? recovery has been rough so far
Jim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Me, not to the extent that you are. I NEVER missed my anti-nausea meds, whether I had nausea or not. (I turned out to be one of the luckier ones on the vomiting front - never did, until I was hospitalized, and they gave me juicy doses of phenergen and pain meds.

I had problems controlling my pain at your point, too - I think most of us do. Since mine wasn't unbearable, I just kept to my pain med schedule (hydrocodone), and took viscous lidocaine near mealtime (smoothie time or water time).

Quick hydration tip - from Skiffin, I think - pinch some skin on the back of one of your hands - if it doesn't spring right back into place, you're not well hydrated.

I would definately call my doc/center if I were you.

As for the mucous - like many, I kept myself surrounded by boxes of tissue. Depending on the mucous, you might want to ask about renting a suction machine - some people here did, and were glad they did. I see that since you know you're hacking up about a cup a day, you're in the spit cup camp. A cup. Wow. Since I was a tissue person, I never knew what amount I was bringing up and out.

Hoping you start to feel you're moving in the right direction soon.

CivilMatt's picture
CivilMatt
Posts: 3085
Joined: May 2012

Hi Jim,

I’ve looked all through my cancer notes and can not find “gruel” so your in uncharted waters on that one. Sore and inflamed throat and mouth, my medicine was Magic Mouth Wash (they made a special version just for me, every time). If the pain was bad I always had the liquid Hydrocodone. By the end of treatments my nausea had past away along with my taste buds. I was drinking (and still am) 6 – 10 glasses of water a day. I was terrified of forgetting how to swallow. Mucus, I had a rinse, spit and gag utility room sink dedicated to my particular habits and I belong to the Kleenex club (wish I had bought stock). I use to fight to clear my throat before bed time, but with a swollen throat it always feels like there is something down there. I know you just finished rads, so you can expect to cook a little longer. Weeks 6, 7 & 8 were neck burn time for me and it was oh so painful. You should start turning the corner and feeling better and better, faster and faster. The taste buds, good luck, I hope they return quickly.

Best,

Matt

luvofmylif
Posts: 344
Joined: Sep 2012

Feeling so bad for you. What about fentanyl patches for pain and they might help you sleep better at night.Kepp us posted. My husband is only have his neck radiated so none of the mucous lke you are having. Although, not having the back on the throat scares me. All the what ifs are in my mind. Praying as everyone says that over the next couple weeks your symptoms plateau and then you will start to improve.

Joan

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

One of the worse things ever is to become de-hydrated or under hydrated....

From just listening (reading) your post, it definitely sounds like you are under hydrating, and more than likely under feeding as for calorie intake.

Both of these are very important to get a handle on. They are both key to recovery with less complications.

First thing I would do is go in for hydration, you might have to do that a few times a week until you get it under control.

You didn't mention if you had a PEG or not, and can't remember from your other posts. But if you do, use it for calorie intake...

Myself, I didn't have one, but didn't have the complications you are having. Mine was very manageable.

Around week 3-4 or Rads, I switched completey from any kind of real food (other than sliced peaches in light syrup to keep the throat muscles working), to Ensure Plus...several cans a day.

My feeding routine consisted of liquid meds to numb the throat, a glass of water, a few Ensures, a few sliced peaches, more water, and a crushed percocet or oxy in a little water for the pain to come.

I would next definitely communicate with your MD's on the meds issue. They should be able to find something that you can tolerate with the least amount of discomfort.

You might also check with your ENT as for the balance issues...

I would imagine that could be a result of something inner ear going on..a lot of us have had issues with ear wax build up after rads....

But that also could be related to your blood work, sugar, a lot of things.....

Something else to communicate with your MD's about...

Realizing that everyone is different and bring their own set of problems to the table....

Communication with your MD's, hydration and calories are some of the top important things to stay on....

Tenting, almost forgot...

Like mentioned, one quick indicator they told my wife about concerning hydration...

Gently pull up on the loose skin on the back of your hand...if it stays "tented" up nearly at any length of time longer han a second or so, you more than likely need hydration.

It should be soft and spring back to it's original state fairly quickly if you are hydrated well.

It used to drive me nuts..., I'd be nice and cosy sleeping... Then all of a sudden my wife would reach over and pinch the skin on my hands, scare the crap out of me...

My thoughts,
John

MichelleLee71
Posts: 13
Joined: Nov 2012

You sound just like me but I wasn't that extreme. I always had Kleenex with me for the mucous and my bottle of water every where I went. I still have to keep my water with me because I have no saliva. My throat pain was horrible. I was on morphine, hydrocodone and ibuprofen and I still had pain. It came down to just dealing with it. It also sounds like you might be dehydrated so I would def go in for some hydration. I had to do that a few times as well even with my PEG tube. So glad I had that annoying little tube it saved me. Just got it out a few days ago. Yeah.

Let us know how you're doing.

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

was when my mouth sores were going hot and heavy. My Dr. suggested Musinex...I bought some, but never used it (couldn't get it past the bad mouth)...it might be worth a try, tho.

I simply felt like schmidt for a month after I finished treatment...I slept more, stared at walls more, and spent whole days in my jams...and then one day I woke up and felt BETTER than the day before...and those days continued.

p

ditto1
Posts: 634
Joined: Mar 2012

kleenex and still counting as for the mucus that I spit in them. Kept kleenex and water with me pretty much all the time. Now 12 weeks out less kleenex now Im going into dry mode. Seem to have some saliva but generally when I eat which the Doc said is normal. But at night very dry. No pain at this point but mouth still feels goofy for a lack of better way to say it.

Hard12Find
Posts: 209
Joined: Sep 2012

Well it turns out thrush is what blows my recovery balance I figured it would come on insore spots that grew together but no mine hit mouth and throat overnight. I was blaming it on the last radiation treatment I had on Friday. Ended up in the hospitaldehydrated and not keeping anything down so far 2 doses of diflucan in the Iv and mouth is great. I have been monitoring my mouth daily with cell phone pics so if you wonder what thrush looks like I have pictures. Getting better.

luvofmylif
Posts: 344
Joined: Sep 2012

Glad you are doing better. John had to be on oral difulcan for 10 day course for thrush. It did the trick and he also has used the Magic mouthwash with Nystatin during the whole treatment regimen. Hopefully, now you will be back on track and on the mend

Joan

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