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How long before one can eat or drink again once treatment ends?

Joni_austin's picture
Joni_austin
Posts: 1
Joined: Jun 2013

Hello everybody! My husband Kenny was diagnosed with metastatic squamous cell cancer of the tonsils, stage IVA, last January. I've been reading these posts for several months now and appreciate all the great information and helpful souls out there. But my husband rarely goes online and prefers to get info filtered through me. So here's what I'm wondering: Kenny finished the last of his rads 4 weeks ago yesterday, and he is still not able to swallow liquids or eat anything. He underwent a very rigorous treatment of 2 three-weeks cycle of chemo infusion and then chemoradiation for 7 weeks, and he's had a terrible time with side effects. From the first week-long administration of chemo (during the infusion period) he developed severe mouth ulcers (one of the worst cases of oral mucositis our nurse had seen, she told us) which have continued throughout his treatment period. His radiation oncologist eventually put him on MuGard, but then he got thrush soon after that and has just had a devil of a time with his mouth (and poor, burning tongue). His mouth sores did eventually heal once treatment ended, but by that time his throat was so sore it didn't seem to make much difference as far as the pain is concerned. He's still wearing fentanyl patches and taking 6 doses of Dilaudid a day and is still in pain.

He hasn't been able to eat anything since early April and hasn't been able to drink water since mid-April. So as you can imagine he's lost a lot of weight (50 lbs. and still dropping) and he's getting very despondent over the fact that he's not getting any better. He's starting to think he will never get well! Of course, I tell him he will, it just takes a long time, and to measure his progress in weeks and not days (as I've read on this forum a number of times). I just feel that without being able to eat and get decent nutrition (the feeding tube formula is keeping him alive, but not well nourished), he's not going to heal any time soon. Kenny has also had problems with excessive phlegm (he's had to sleep sitting up for the past several weeks), but that seems to be geting better. 

So I guess our question is - is this normal for recovery to be this slow? His throat isn't getting any better, and now he's getting more mouth sores again - I think he may have thrush as his tongue is white in the center and there are white patches (as well as bumps) in this mouth. Any words of advice would be much appreciated!

jim and i's picture
jim and i
Posts: 1561
Joined: May 2011

Joni, if you have read much you have seen the phrase "Everyone is different." My husband was diagnosed in May 2011 and finished treatment August 2011. He still cannot eat enough to keep his weight up. However, there has been numorous who were able to go back to normal eating within a couple months. So y ou can see  it varies widely. Tell your husband to just be patient, I know it is hard. Mine complained terribly. Most get back 90% eventually, my husband is one of the rare cases.

 

Debbie

hwt's picture
hwt
Posts: 1824
Joined: Jun 2012

It's very important to keep swallowing during this process, even if just small sips of water. If not swallowing at all, you need to make the doctors aware. Might try an Ensure, the weight of it might be easier than water. Maybe try an egg scrambled, over easy, basted or soft-boiled. 

Candi

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

As mentioned, everyone is basically on their own time table for healing and recovery...

Based on my observances here, and myself..., your hubby should start seeing some improvement any time now... The only thing that I can take from your posting though is if his mouth isn't healing, he might have another issue going on as you mentioned.... SO I'd have that checked or communicate with your MD's..., and the advice of the many here that went through similar.

He should have the numbing solutions though to help with taking in water or something by mouth. The factor on that is the possibility to lose the ability to swallow if he doesn't use them... Now that would totally suck, go through all of this, and then not be able to swallow...

If you've been reading up, you know hydration is stressed more than about anything else here..., it'll put you in the hospital relatively quick if you aren'tstaying hydrated enough...

I had a similar Dx, and Tx.., only with an extra cycle thrown in up front, you two, myself three...

Keep the faith, and keep hammering it into him that it will come...when it wants...

Myself I'm 100% on taste and 95% on saliva... But it was a road..., maybe six months to get enough back to definitely survive if it didn't get any better..., two years to get where I am now... That hasn't really changed much as I'm now just a hair shy of four years post Tx.

Best,

John

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

Welcome to the forum....glad you were able to gleen knowledge through your husband's treatments even without joining.

You husband was hit hard in the mouth area from the very beginning....I do feel for him on the mouth sores, they can be miserable beyond explanation.  It does sound to me like he has thrush right now, tho....and getting meds for that right away is necessary...Diflucan comes in liquid form and he can put that down his tube. 

Four weeks out of treatment isn't very long....yes, it IS going to get better...and like you told him, it comes in degrees, never leaps and bounds.  I'm sure he's getting depressed, he was hit hard in the beginning, and has endured a long time with nothing seeming to get better.....more months without food than many of us who have been through this would add up in despondancy.  Still...treatment is done, and even if he doesn't realize it, can't feel it, and doesn't see it.....he's healing everyday. 

I agree he needs to swallow something every day....even if it's just a little something.  L-glutamine didn't sting my mouth sores (the only thing that didn't)....Milk was my best friend for quite a long time during treatment, also.  First tho, he's got to get that thrush under control.....then start trying to swallow a little something everyday.

p

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Joni,

Welcome. A couple of things stood out on your post. The swallowing for one. Even if it's a little sip of liquid every hour, your husband has to keep swallowing. Those muscles can atrophy and you can lose the ability to swallow if you don't use them.

It does sound like he may be coming down with thrush (I've had it three times now). Ask the Drs. for Nystatin or Fluconazole to get that under control. Magic Mouthwash is a miracle remedy for mouth pain and can help to give him a window to swallow something. 

The weight loss is concerning. I lost 35lbs during treatment and a total of 60lbs since last Fall. I made it through my treatment without a PEG but only by a couple of hours as I was having a PEG put in literally 2 hours after I rang the bell. I wasn't able to eat for close to 4 weeks after treatment ended. I still take about 80% of my nutrition through the tube but I'm now eating at least one solid food meal a day and my weight has been stable. Does he have a feeding tube? If not, he either starts eating or getting liquid nourishment into him or he'll wind up in the hospital with dehydration and they'll be feeding him.

Lastly, let him know that he will get better. I'm 6 weeks out of treatment and it took every bit of 4 weeks before I started to turn the corner. Getting out for a walk, even if it's just up the street and back, is beneficial and will help (make sure he uses sunscreen and wears a hat!). 

Positive thoughts and prayers

"T"

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

My concerns are the same as "T's". He has to keep using those neck muscles and swallow swallow swallow. Rachel will back us on this one. Like we always say everyone is different and we progress through recovery different than others. I didn't have chemo but had 30 rads and managed without a feeding tube and drank alot of ensures and my homemade smoothies. I lost 92 pounds and they threatened to put in a feeding tube, but I told them what I drank everyday and I'm sure they felt is was sufficient. I took oxycodone jst before I ate or drank anything. (Boy do I miss that stuff) Make Kenny take even the smallest sips and in time he will get better and have the ability to keep swallowing. Tell  him in a year he will look back and be glad he did.

Enjoy the day

      Jeff

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

The first 5 weeks it was strictly chicken broth and pastina with an egg dropped in- oat meal with milk went down good abe omelettea with cheese were nice- double dipped French toast was a favorite. As far as eating more solid foods that took a lot longer. It was about 10 weeks before I could begin to eat things like meat loaf hot dogs etc. some things I still can't eat. However anything on soft break help things go down easier for me. At 5 months past trearment one of my favorites is pasta with clam sauce. Yesterday I had a burrito ( not spicey hot) and I actually enjoyed it. You have to realize the recovery from this treatment is very slow and frustrating - e recovery is measured in months not days and you have to constantly test what you can tolerate and can't tolerate - I still drink 2-3 Insures a day- Ioat over 40 lbs - just put 5 back after 5 months. Stay strong and keep pluggin away

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

just put 5 back after 5 months

Progress but that seems frustrating depending on how much of the 40 you want back. one pound a month is progress but can seem pretty slow and test ones patience if trying to claw back more

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

Joni,

Hi and welcome to the H&N forum where ½ our information is filtered through caregivers (the greatest people on earth).

Sound like the gang filled you in (with brilliant suggestions) on everything you desired. For me the mouth, throat and tongue pain was addressed using (Oregon made) Magic Mouth Wash.  My compounding pharmacy really knew their business.

As for getting better, it just takes time.  If your doctors are satisfied with progress, then you are probably in good hands.  Any healing which is going the wrong way should be investigated.

Nutrition, hydration and swallowing are things you control which directly aids healing. Each is important and can be difficult.  You need to find what things work toward these goals and exploit them.

I lived on smoothies for 7 months because of issues I had with food, but that didn’t mean I completely quit eating.  I found that at around 2-3 months I liked tomatoes with olive oil and salt and pepper. It wasn’t much, but full of calories.  I don’t care if it is mashed potatoes mixed with cream corn, there is bound to be something you might like.  I had a bowl of my tomato mixture almost every day for months.  My sampling of foods was continuous after treatments, not more than a taste sometimes, but always something.

My path to eating normal again (which I do) was self-directed.  I listened to everybody and did what felt best to me and made me the happiest.  I was just so grateful to get a second chance I accepted the way things were (no more no less).  Being upset takes too much precious energy.

Be strong, it takes time, but you will feel better and most likely eat normally.

Best,

Matt

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