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A Few Questions

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Hi All,

Ron asked me to post a few questions for him. He is now 3 weeks post treatment and he is not able to swallow and uses the peg tube 100%. He is still having lots of thick mucous which he has to spit out. Sorry to be gross, I don't know how else to say it. He also can not speak very well and when he does his voice is very raspy. He tried a popsicle today and he feels like it makes the mucous thicker. I know everyone is different but about how long do you think he will have the mucous? Is there anything that will help it get better or is it from the radiation burns inside his neck and mouth? Does there come a point in time where he will swallow it? Sorry again I know this is yucky but I can't seem to get any answers to even a general timeline or expectations of how the healing typically happens. Also when did you start experimenting with eating and what did you start with? We are happy he is thinking about swallowing and maybe eating but don't want to push anything too fast. I have that great book Cancer Fighting Kitchen and there are lots of good recipes but he is not there yet and we don't know if he is close or not. We know you can't put a specific timeline on this but just having a general idea would be helpful for us.

Thanks for any help you can provide.

Robyn & Ron

connieprice1's picture
connieprice1
Posts: 300
Joined: Oct 2010

Hi Robyn, My wife Connie is 1 month out of radiation treatment today. The thick mucous is just starting to subside over the past week. She is also 100% peg tube. I told her tonight that she should be tasting different foods to stimulate her taste buds some. This process is very wasteful since so far she has only been able to take a bite or two before I end up throwing out the soup etc. She is trying to eat but so far she has been doing 4 cans a day. She also does the morphine patch and hydocodone everyday which I hope we can start cutting down on so much pain killer soon. Connie has no energy as of yet and sleeps a lot. Truth is I don't have any answers for you, just thought I would let you know we are in the same boat. I try not to push Connie too much but I do suggest she try to eat orally because although the tube has been a lifesaver, as soon as she can eat orally, we will both be glad when the day comes when it comes out. I will know she is trully getting well when she starts eating, starts taking less pain killer and start getting her energy back. Good Luck to you & Ron, Homer & Connie

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Hi Homer we are really going through almost the same side effects. One thing we started over the weekend was supplementing the formula with some of the naked juice which is all natural veggie and fruit. Our thought was to increase Rons calorie intake from the 4 cans which equal 1500. The addition of the juice put it up to 1800 the dietician would like it to be 2100 for Ron. The isosource has milk protein and although it is just a theory we thought if it is encouraging the mucous we want to have Ron get less of it. So far he is tolerating it well and no vomiting. He is still taking ativan and zofran to ensure the nausea stays away and is pumping the food in over 5 hours. Ron also is sleeping off and on during the day also and at night off anon as well. My heart goes out to you and Connie as I know exactly how you feel. I went to work this week and our daughter has been coming over to stay with Ron he keeps telling me how much he misses me and it makes me emotional my co workers are getting used to random tears and have been so supportive. I think about you two often and you are in our prayers along with all of the many others here.
Take care and happy Spring break! Hugs
Robyn and Ron

Lena Rose
Posts: 73
Joined: Apr 2010

My husband finished treatment last June and the thick mucous lasted for about 2-3 months (although it seemed like forever). He kept a spit cup near him at all times. He was also on the PEG 100%. His voice was raspy but it does get better. He found that anything with sugar in it (like popsicles) made the mucous worse. Just try to experiment with different foods, I creamed a lot of soups. It is very important that your husband tries to swallow everyday. My husband had to go for swallowing therapy since the muscle had basically atrophied from not swallowing and the radiation.

I also just bought the cookbook "Easy to Swallow, Easy to Chew" with some good recipes in it.

Hang in there. It does get better!

rozaroo
Posts: 665
Joined: Apr 2010

Even if tiny sip's of water go down that will help with the swallow.Flat gingerale worked for me. I did not eat anything for the first couple of month's as soup's made me ill. I started with fruit & protien shakes slowly. There was indeed alot of waste so I took a break for a bit as I would get more turned off.You can also add water to the tube feeding's for extra hydration. But sipping water will help the best! It all takes time & I found pushing food only made it worse for me. The mucous took a month to go away for me & my voice was pretty raspy for awhile. Part & parcel of this cancer. I can only say it will get better. However, we are all different & it can be s slow process!
God Bless
Roz

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

In my experience (and this is all dependent on type of treatment among other things, of course) the mucous problem can last for months. In fact, more than five years later I still find on occasion that I need to get rid of some of it.

It was once pointed out to me that dairy products tend to excite the mucous, but that is clearly not the case in Ron's case at this point, since he is basically 100% on the tube as you report. Me, I never had mucous problems directly related to popsicles or ice or water, but I agree with my old friend SASH that dairy products can still induce the mucous on occasion.

From my perspective and experience, popsicles are a good thing and were among the first things I could handle. In fact, my first day out of the hospital following surgery, the first thing I did was grind up some ice and have myself a sno-cone (without any flavoring). To be honest, this was even encouraged in the hospital, my lust for ground-up ice.

I am modestly disturbed by the seeming impatience of caregivers with respect to eating and the tube, some of which is evidenced in the responses to your post.

My own primary caregiver (my wife, also a nurse) was as eager as any of you (and still is) to encourage me to go to the next level. I have always appreciated that, although it must come with the understanding that in the end, the survivor must make the decisions based on ability and desire at any given moment.

This is not to castigate the "encouraging" caregiver, by any means. We NEED a boot in the backside on occasion. On the other hand, it is important for caregivers to remember that we have limitations now (hopefully temporary) that our caregivers likely will never understand.

And that, I suppose, is my answer to your question: it will all come in time. Some of it can't be forced, it simply can't.

I would, of course, highly recommend MUCH hydration to help with the mucous. Beyond that, it will come.

Best wishes to hub and his family.

Take care,

Joe

Hondo's picture
Hondo
Posts: 6643
Joined: Apr 2009

Like you said everyone will heal different, but normally somewhere about two months after radiation treatment stops will things start to get a little better on the eating. As for the thick mucous try using a rinse like NeilMed for the sinus and then baking soda rinse for the throat, that is what has worked very well for me. I also use a spray at night to sleep with called Stoppers 4.

Wishing you both the best
Hondo

Skiffin16's picture
Skiffin16
Posts: 8292
Joined: Sep 2009

I know that you hear the samethings, everyone is different, be patient and hang in there, it'll get better soon....

This is the same scenario, all of the above apply.

At three weeks out, you are on the tail end of it, I can say that. I can also say that more than likely within the next few weeks, things will start getting better.

It's not a fast progression at all, actually it's a really slow progression, measured more in weeks and months versus days or weeks.

If you haven't read it before, I'll say it again; the last 3-4 weeks of rads, and the next 3-4 weeks post rads are the worse. You are at your peak actually around your very last rad. For the next 3-4 weeks post rads, you are still actually cooking from the radiation.

All of you that have just ended rads will start (little by little) within the next few weeks start seeing and feeling a little improvement.

Like mentioned, never give up, keep trying things, a taste here and there, plenty of fluids, keep the swallowing muscles working, take meds as needed (that's what they are for).

My very best to each of you, thoughts and prayers,
John

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

R & R, this can be the hardest time of this ordeal, a couple fo week out from treatment. hang in, it will start to get beter now though slowly.

For the Mucus I was given a prodcut called Fluimicil.Maybe called something else but this site explain it and it generic name : http://www.flexyx.com/F/Fluimucil.html

As for eating, I started on rice cruel or plain Congee as I could sort of swallow and sort of let is slid donw with minimal effort and less pain. You then slowly experiments as some foods will still burn for a while yet. Plain soups were my main start sometimes just the liquid from boiled veges.

If not already, he should have the L Glutamine powder and mix that with water and swish and swallow. It will help stop the burning he may get from some foods he tries and also help healing of the mouth andthroat tissue. Just dumpa large tabl spoon of hte powder oin a large glas of water and sip on on it all day.

Keep you Cancer fighting cookbook out and start as soon as he is able. He will slowly start to get better now but another month or so before it starts to get easier. As he hets better, getting out and about is important.

Hope these tips help.

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Thanks so much I will look up the products you suggested. Ron definitely feels better and not vomiting is so great. I guess we are anxious because he felt bad for so long. Thanks for the patience advice this is not like typical healing and unlike anything we have ever been through. Ron will have to return to work soon and that is also I suppose our reason for wanting to know how and what things he might have to deal with at work and logistical if it will be possible. You have all been so fantastic to us we can't thank you enough and thrilled we are able to help some others with our experiences.
R&R

Noellesmom
Posts: 1853
Joined: Aug 2010

Jim took Mucinex to thin the mucous and felt it really helped - is still taking it occasionally. Also, we had been advised a baking soda rinse for the mouth was a great thing but found a very warm salt water rinse cut a lot of the mucous and allowed Jim to expectorate quite a bit of it.

It's different for everyone, as has been said here before, but there was a profound difference for Jim between the baking soda rinse and the warm salt water rinse.

It is worth a try!

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

The thick mucous started to subside about 3 weeks after the end of radiation for Buzz. He was 100% tube fed for about 5 months as he quit eating after the first chemo, even before rads. I too was worried he would never get off the tube and admit I was pretty impatient to get him eating again. Even tho all his nutrition was via the tube, he did try to swallow something every day. His treatment ended January 10 and he really started eating again towards the end of March. Prior to that he was drinking mostly liquids. ScandiShakes worked for us. The shake has 600 calories in it. While weaning off the tube, I kept track of his calories and would subtract a can of tube feeding when he drank the equivalent calories. It was a slow process with a lot of experimentation. Lots of foods burned his tongue and even now it is very sensitive. It is understandable that you want to get Ron to resume eating but it will happen, only when he is healed sufficiently to tolerate it. You will get there! Karen

Dav1965
Posts: 132
Joined: Apr 2011

I had 95% of my tongue removed and both sides of my neck dissected and i had mucas for about 4 months. I have been on a peg tube since July 2010 i have just started eating in the last 3 weeks. All i can eat is soup. It takes time and every one is different. Let him go at his own pace. Go with him to the doctor and do what the doctor suggest.They know best. Then push him to do what the doc sugest. David

fisrpotpe's picture
fisrpotpe
Posts: 1349
Joined: Aug 2010

I agree with all the responses. In review a few thoughts that I will keep short. Maintain a Positive Mental Attitude (PMA) no matter what happens, hard to do but a must. Take small sips and much more often, as time goes on there will be bigger sips... this helps the swallowing that is a reaction and can not be taught if lost. I now use wisdom and years ago it was patience, our wisdom generates so much. Last if you think recovery is slow well it will probably be slower that you want, it's never fast enough... taking baby steps daily/hourly leads to stumbling which leads to running and your New Normal.

Keep your connection with these wonderful gifts of life here on Cancer Survivors Network!

John

If we all here can Survive Ron will and has since being told he has "c" because of your care giving that is loving and endless.

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Thank you John, you are an angel and so appreciate your positive kind words!

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