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Tired , mucus and unable to eat.

JSpies
Posts: 3
Joined: Feb 2013

I am writing for my husband John. He was diagnosed with tonsil cancer in Oct. had his tonsils, part of soft pallet, and tongue removed late in Nov. After 2 months of recovery and delays , he started chemo and radiation last week. He complains of being hungry , but full. We can't tell if it is related to mucus Or constipation. He seems to have stopped pushing through the uncomfortable stuff. 

 

He did get a feeding tube ( which he hates) . We get food delivered today, but I'm not sure that would help this discomfort. He isn't eating or drinking really. 

 

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

but very glad you did!!

Constipation could make someone who's hungry fill up faster, that's for sure....and this treatment certainly had most of us stopped up to a certain extent....I didn't have the horrible mucous, but I've heard that it makes people nauseus...He needs to have stuff on hand for constipation, tho...it can cause many problems the worst of which is impaction.  Colace is what I used daily....and I was still constipated....once he starts using his tube it gets worse.

He just started rads and chemo last week, so I sure hope he is not done pushing through what is uncomfortable....as there is a whole lot of more than uncomfortable coming up  in his treatment....He absolutely HAS TO eat and drink during treatment....those two things are the foundation of recovery.  Let him know that if he gets dehydrated, or quits taking in nutrition, they will slap him in the hospital and he can get it thru an IV....the Dr.'s don't play around when it comes to fluids and food!!  Getting both will also make him feel so much better.  Dehydration is a subtle thing...you feel weak, sick, dizzy...the only thing you don't feel is thirsty...Getting in a couple quarts of water a day will probably help his discomfort immensely.

Keep coming here, and asking questions...remind him he's not alone, and he isn't going to die from this....but he does have to take a proactive role in getting better.

p

Grandmax4's picture
Grandmax4
Posts: 594
Joined: Dec 2011

the mucus is the worse side effect ever! I carried around a box of kleenex and a cup full of watered down orange juice for months. I had surgery by de vinci robot, epiglottis removed, November, 2011...I was blessed to not need chemo or radiation, but the removal of lymph nodes causes the mucus to not have a route to exit the body...I so feel for him, but it will get better, time is his friend.

The constipation is likely caused by pain medication, I was lucky I didnt suffer that, I'd speak to his Dr about it.

I had a feeding tube, through my nose, for 2 months...used boost, ensure and water...lots of water. I was so relieved when I went for a check-up and my surgeon said let's get rid of this..yank..it was scary too, because I knew I was on my own to swallow and stay hydrated...it was one full year before I started eating solids, I don't care if I ever see mashed potatoes & gravy, cream soup again!!

 

Tell John, we're all here to help him and give what advice we can. This is a wonderful board, full of kind, knowledgeable people..

 

katenorwood
Posts: 1853
Joined: May 2012

Hello !

I think the other's have more experience w/tx side effects.  But I have had my share of bowel problems this past year.  Try to stay on top of it, and any questions ask your nurses.  I started splitting up small meals through out the day.  But you mentioned the tube...so unsure of that aspect.  Others will jump in soon.  I hope things turn around for John soon, as this is miserable !  I know hydration is so important also !    Katie

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Hi,

i am a caretaker too. My husband was also diagnosed in October, left tonsil. And 3 lymph nodes involved, two of which were no longer whole, hence his stage IV diagnosis (dx).

it sounds as if John went through some pretty serious surgerAndorra which can  put a dent in ones ability to fight, yet he'll be very happy after if he can keep his weight up and keep his fighting spirit up, as Phannie mentioned. 

The chemo's can really impede the digestive system, at one point my husband was on 4 colace a day immediately following chemo. And remembering back to week 1 & 2, it was his biggest complaint. Not going like clock work as he always had, all 52 years. Fortunately, cola ce is very gentle unless you really get backed up, then it might be a little crampy, but worth it! 

I learned from someone here early on (an shared it often)... Good advice for eating or feeding... Never empty, never full. Somewhere in between is a good place to be all the time!

there are a lot of good people here, all who just helped us (and still do) get through the treatments and now recovery. I am sure, you'll be hearing from them all very soon. Meanwhile, welcome, make yourself at home. You won't have many questions, concerns that this crew can't handle.. It's a pretty terrific bunch.

Kari

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I too was Tonsils STGIII, that was back in January 2009.., clean and clear since Tx ended June 2009.

Treatment is rough, but doable...

Welcome aboard, and hang on for the ride...

Best ~ John

 

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

Welcome, sorry to say... but u r in the best place for support.  My boyfriend has SCC base of tongue. Finished 35 rads & 6 chemo's Jan. 31,2013. He has had a lot of mucus also. He took cough syrup (tuss DM) which the nurse said woulf keep it loose dince it hurt to dpit it up. It helped alot as did a water bottle attached to him. The morphine and other pain med also made him constipated, he takes colace twice a day and it works pretty well. He did not have a PEG and eat the whole time (very small amounts).  John needs to keep trying to go or he can really get blocked up and have bad effects. Also, even with the PEG I would really recommend he keeps eating little things, like pudding, apple sauce just to keep his throat in working order. Jeff'a dr was against PEG's(only in extreme cases) do to the throat can get lazy. Nothing is going to taste good (no taste really at all) but keep swallowing is important. Jeff only lost 15 pounds.

So welcome and keep asking questions and reading posts.

With loughts & prays    Sue

Dr.Ed
Posts: 22
Joined: Jan 2013

but its obvious by us all being here that if you do push through you can make it. A great thing about these folks is they have all been thru these tough treatments and come out on the other side. Like Grandmax4 I wish i'd invested in Kleenex because i was bringing up mucus 24/7, I also had a feeding tube and it helped me not lose more weight than I did (which was 39 pounds). It is real important to get food and fluid down though its going to be up to your husband when and how he will let himself, but it can avoid him needing to be hospitalized.

Best to you and you and your husband, make sure you take care of the caretaker   

JSpies
Posts: 3
Joined: Feb 2013

He seems to have good days and bad days. We are realizing it is a roller coaster. He still has not had regular bowel movements. We say the doctor Tuesday and he recommended daily miralax, but it hasnot really helped. The cramps have passed though. He has chemo in 10 days and we see the doctor again thisTuesday. John does not seemed consigned about the lack of bowel movements. He has come to accept the feeding tube as his using that 3-4 times a day. 

 

He is frustrated because he can still swallow and wants to eat , but everything tastes bad most days. We keep trying different foods. Any suggestio

JSpies
Posts: 3
Joined: Feb 2013

He seems to have good days and bad days. We are realizing it is a roller coaster. He still has not had regular bowel movements. We say the doctor Tuesday and he recommended daily miralax, but it hasnot really helped. The cramps have passed though. He has chemo in 10 days and we see the doctor again thisTuesday. John does not seemed consigned about the lack of bowel movements. He has come to accept the feeding tube as his using that 3-4 times a day. 

 

He is frustrated because he can still swallow and wants to eat , but everything tastes bad most days. We keep trying different foods. Any suggestio

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

Does food taste truly bad, or is it completely tasteless....and therefore does not taste "good"...?  There is a difference.  If in fact, food has the taste of cardboard, where the "pleasure" of eating is gone, then I suggest he go ahead and eat via his mouth regardless of the lack of pleasure.  Real food helps the bowels move more normally....tube foods block us up like nobody's business.  Besides, he NEEDS to swallow....those muscles become atrophied if not used, and that is a whole'nother can of worms opened....he does not want that! 

I used Colace all thru treatment, and tho I got blocked up, I still managed to go a couple times a week....painfully however.  Lots of water may help, too. 

p

HobbsDoggy
Posts: 165
Joined: Feb 2013

I had really bad mucus toward the end of radiation and chemo. Thought it would never stop running and clogging. It did after about 3 weeks, then came dry mouth, but that's another story. Also had constipation so bad I would cry when trying to go to the bathroom. That also passed (no pun intended) after about 4 weeks. Took laxatives and they helped a little, but when it was at it worse nothing helped. Knowing it would not last forever is what helped me. I used a humidifier in my bedroom which helped the mucus, seems like having lots of fluids helped keep things from clogging up.

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